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A Road Map for Creating a CPRS Template for a Cancer Survivorship Treatment Summary and Care Plan (FULL)
In 2012, staff at the Comprehensive Cancer Center of VA Connecticut Healthcare System in West Haven (VACHS) decided to create a template for a Cancer Survivorship Treatment Summary and Care Plan (Survivorship Care Plan [SCP] and treatment summary are used interchangeably in this article and refer to the same document) in the VACHS Computerized Patient Record System (CPRS) to be used as one component of a Multidisciplinary Cancer Survivorship Clinic. The clinic’s providers would be advanced practice registered nurses (APRNs), based in the Comprehensive Cancer Center of VACHS. This quality improvement project was created in response to the American College of Surgeons (ACoS) Commission on Cancer (CoC) Standard 3.3, effective January 1, 2012, which mandated that the cancer committee “develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment.”1 According to ACoS CoC the process should be monitored, evaluated, presented, and documented at least annually to the cancer committee.
Creating the CPRS template took 9 months before the first SCPs were provided to patients in July 2013. Since that time, 210 SCPs have been provided to VACHS patients. Patient response was positive. Since implementation, patients have told their provider that they found the SCP’s list of signs and symptoms of cancer recurrence a helpful and reassuring resource.
Objective
This project is designed to be road map for other VA providers to follow by offering a review of the processes and resources that VACHS used and to share lessons learned.
The SCP is an important component of the survivorship standard of care. The CoC Standard 3.3 (version 2016) mandated that SCPs must be provided during an in-person meeting to an annually increasing percentage of patients initially diagnosed and treated for stage I, II, or III cancer in a given year—10% for those diagnosed and treated in 2015 and 25% for those diagnosed and treated in 2016 with increases in the required percentage each year thereafter. The mandated increase from 10% in 2015 to 25% in 2016 is significant and requires substantial resources to meet. Cancer centers seeking to achieve or maintain ACoS accreditation must fulfill this standard.2
It is important to establish a robust SCP process proactively. The percentage of SCPs provided that is mandated by the CoC continues to rise annually and the rate of survivorship also is expected to rise. The January 2016 CoC update clarified the phase-in of this standard over 4 years: (1) 2015: Implement a process to provide treatment summaries to at least 10% of patients treated for stage I-III cancer; (2) By end of 2016: Provide treatment summaries to at least 25% of eligible patients; (3) By end of 2017: Provide treatment summaries to at least 50% of eligible patients; and (4) By end of 2018: Provide treatment summaries to at least 75% of eligible patients.2
Background
In the fall of 2012, the project began with listening to survivors. The VA Survivorship Special Interest Group (SSIG) already had done significant work throughout the national VA system.3 The VACHS staff participated in monthly SSIG conference calls and reviewed the extensive resources created by its members, which is available through an internal VA website (Figure). 
The VACHS staff reviewed the experiences of 2 VA sites using a draft CPRS survivorship care plan template. They also spent a day observing an established survivorship clinic at the VACHS academic affiliate Yale-New Haven Hospital (YNHH) in November of 2012. At that time, the YNHH clinic format was a 2-visit model for patients who had completed treatment. During their first visit to the YNHH clinic, patients meet with 4 members of an interdisciplinary team: a medical provider, a dietician, a physical therapist, and a social worker. At the end of the visit, the patient receives a SCP, a comprehensive document based on a template from the Livestrong organization.4 The second visit is scheduled 3 months later to follow up with patients and address any ongoing concerns. Patients then would be discharged from the survivorship clinic.
Given the complicated needs of the VA patient population, VACHS staff wanted to create a survivorship clinic that would provide regular, close followup by a multidisciplinary team within the existing hematology/oncology outpatient clinic. This design was believed to better serve veteran cancer survivors than a stand-alone clinic.
Clinic Creation
The VACHS chief of oncology, the cancer registrar, and the cancer care coordinator met in October 2012 to review Standard 3.3 and determine the best approach for VACHS patients. A plan to phase survivorship care into the existing hematology/oncology clinic was established. The group identified appropriate cancer survivor patients who would be followed by an APRN and a medical doctor. After reviewing the most common cancers treated at VACHS, it was decided to start the survivorship clinic with patients who had been treated for stage I lung cancer, stage I or II colorectal cancer, and/or stage I melanoma. These patients are not usually treated with chemotherapy, are less likely to relapse given early stage, and generally would be expected to be less complicated medically than would patients with more advanced disease. Patients previously treated for more advanced cancers would continue to be followed by medical doctors unless determined to be appropriate for migration to this new clinic.
The VACHS staff chose to embed this new clinic within existing APRN hematology/oncology clinics. Survivorship clinic visits were not restricted to a particular date or time in order to maximize efficiency as the workload associated with this clinic was not initially known. To track patient volume in the clinic, VACHS staff created the following note titles for patients being followed in the survivorship clinic: (1) Hem/Onc APRN Survivorship Clinic Initial Consult; (2) Hem/Onc APRN Cancer Survivorship Note; and (3) Cancer Survivor Treatment Summary. Unique note titles can be searched in VistA to create real-time reporting, thereby enabling staff to monitor the size, demographics, and workload associated with this clinic.
Vision for Care
The goals of survivorship care at VACHS were (1) to prevent, detect early, and treat complications from cancer treatment through regular clinic visits and ongoing education and support; (2) to provide holistic, individualized medical care and psychosocial support for veterans who are cancer survivors; (3) to maximize health, quality of life, and longevity; and (4) to facilitate appropriate referrals.
The VACHS clinic model incorporated: (1) regular clinic visits and follow-up with laboratories and imaging for 5 years, based on National Comprehensive Cancer Network (NCCN) guidelines; (2) monitoring for psychosocial distress at each visit, using a modified version of the NCCN Distress Thermometer, and a registered nurse or health tech documenting scores in CPRS with a templated Distress Screening note; (3) referrals to nutrition, health psychology, social work, physical therapy, smoking cessation, and the palliative care team as appropriate; (4) education about diagnosis, risk factors, and healthy living; and (5) reviewing the SCP to each patient.
The VACHS approach was designed to be patientcentered by incorporating individualized surveillance and screening guidelines, wellness education tailored to cancer type and treatment history, psychosocial support for survivors and their families through individual therapy and support groups for patients and families, and individual exercise and fitness recommendations through physical therapy and pulmonary rehabilitation referrals.
Needs Assessment
The VACHS cancer care coordinator worked with the tumor registrar to generate an initial referral patient list. Patients were identified in the tumor registry who met these criteria: diagnosed with stage I lung cancer or stage I or II colorectal cancer and treated at VACHS between 2008 and 2012. Initial research showed that there were 117 patients followed in the VACHS hematology/oncology clinic in the fall of 2012 who met the criteria. At that time, 80% of the patients identified were being followed by an attending oncology physician and 20% by an oncology APRN (Table). 
Based on this initial analysis, the projected patient load for this clinic was anticipated to be 100 patients annually with between 2 and 4 annual visits each. Of note, in 2013 VACHS started a low-dose chest computed tomography screening program for patients who met high-risk criteria. The number of patients diagnosed and treated for stage I non-small cell lung cancer at VACHS during 2014 and 2015 was more than double the number treated in 2012.
Partnering With IT
The VACHS cancer care coordinator contacted the VISN 1 clinical application coordinator (CAC) in October 2012 who then reached out to her counterpart in Boston, where the sample CPRS template from the survivorship toolkit (toolkit template) was being tested. In November 2012, the VACHS CAC loaded the toolkit template into the test folder of the template drawer of VACHS CPRS. Changes were made over time to shorten the toolkit template to include the relevant information using the shortest number of words.
The template was modified by deleting 3 sections. The appointment list and the medication list were eliminated from the template as it was felt that these change with each visit. The psychosocial distress assessment also was eliminated as this score was known to change from visit to visit.
A separate initiative was undertaken simultaneously to address the need to monitor oncology patients for psychosocial distress regularly. Health psychology providers at VACHS used the NCCN Distress Thermometer to monitor distress in oncology patients. The team elected to take the distress assessment language out of the SCP and create a separate note template to record the distress scores for VACHS patients. The group chose the note titles Cancer Survivor Treatment Summary and Patient Distress Screening to clarify the purpose of the notes and to make searching CPRS or VistA for the note titles easier for providers or researchers.
CPRS Template Format
The VACHS team decided to create a short, clear, document that included diagnosis (date, location, pathology, staging), treatment (types, dates, locations, complications), disease-specific plan for surveillance, healthy living guidelines, and contact information for the survivorship provider.
The template was designed to be relatively simple for a provider to create, using check boxes that would populate the template with disease-specific care plans based on NCCN guidelines.
Review Process
The VACHS team’s original goal was to provide the first treatment summary to a patient on January 1, 2013, 10 weeks after the initial meeting with the CAC. This turned out to be overly optimistic. The VACHS Forms Committee meets once a month at VACHS. There is a formal review process for CPRS templates and all the decision makers must be present (Review Process Time Line).
The changes requested by the VACHS Forms Committee included taking out medications/appointments sections; spelling out all abbreviations; asking the educational coordinator to review educational portion of the template to make sure it complies with guidelines and reading level; and adding fields next to date of diagnosis field and, in every instance of treatment, dates for author to indicate where the diagnosis was made and where the treatment occurred.
Implementation
Starting with the list originally generated by the tumor registrar, the VACHS team set a goal of about 100 patients to be followed in an APRN survivorship clinic to focus on stage I lung cancer, stage I and II colorectal cancer, and stage I melanoma patients. As appropriate, patients were transitioned from being followed by a fellow or attending MD at the VACHS hematology/oncology clinic to the APRN survivorship clinic. As patients were seen in clinic for scheduled surveillance visits, the APRN survivorship clinic provider reviewed the process of creating a treatment summary with each patient and family as appropriate and reviewed their history with them in person to make sure that any complications related to treatment were identified. During each survivorship clinic visit, the provider verbally reviewed the plan for surveillance and signs and symptoms of recurrence to report to their clinician before providing the SCP to the patient. 
Over the past 3 years, the VACHS Cancer Center has incorporated a hematology/oncology dietician, a health psychologist, a social worker, and a physical therapist into the outpatient clinic; all are usually available for sameday referrals. During regular survivorship visits, the survivorship APRN reviews any needs the veteran has and makes appropriate referrals. Palliative care personnel also are available in the cancer center during outpatient clinics for same-day consults. Survivorship patients are not automatically scheduled to see members of the team; rather, appropriate referrals are made via consults in CPRS after meeting with patients and assessing their needs.
In the past 3 years, 2 support groups were created, one for VACHS cancer center patients and one for caregivers. These groups are well attended by oncology and survivorship patients.
As part of the patient’s initial visit, the survivorship APRN reviews the patient’s information in CPRS and systematically reviews the original pathology, surgery, and tumor board notes as well as any notes related to treatments both within the VA system and in the community and creates the treatment summary CPRS note. In cases in which the patient had treatment at an outside facility, the patient signs a release of information form and original documentation of that treatment is requested. The completion of the SCP depends on the timing of when all appropriate information is available to be reviewed. As with all templates, minor editing is done to create the final note.
Once the survivorship APRN completes and signs the SCP, the patient’s primary care provider is added as a cosigner to the note. The patient receives the signed SCP at the visit. The January 2016 CoC Standard 3.3 update specifies that the SCP must be provided to the patient at an in-person visit and not mailed. As the SCP is a signed note in CPRS, it is easy to keep track of the date on which the information was reviewed and documented. If there are changes, such as a new cancer diagnoses or subsequent treatments, it is clear when the original information was documented. After providing the SCP to the patient and reviewing the document at an in-person meeting with the patient, the survivorship APRN documents the date that the SCP was provided to the patient in the progress note in CPRS. Once signed, the SCP is available to all providers within VACHS and able to be printed.
To date, 210 treatment summaries have been created for and provided to patients. Only 1 provider, the cancer care coordinator, is currently using the template, but use is not restricted. Patient feedback has been favorable: Patients state that the list of symptoms included in the treatment summary is useful. Patients report sharing the document with outside providers. The treatment summary also provides patients and families with a predictable plan for surveillance and regular in-person follow-up.
Patient Satsfaction Survey
In March 2015, VACHS conducted a patient satisfaction survey of 98 patients who had been provided with treatment summaries to better understand the impact on patients. This survey assessed quality measures, including patient’s confidence in their understanding of their cancer diagnosis, stage, treatment history, and plan for surveillance. Patient satisfaction with the resources available to them for healthy living also was measured, as was patient satisfaction with their survivorship and oncology providers and awareness that they had received a care plan. 
Surveys were mailed to all VACHS survivorship patients for whom the treatment summaries were created who were still living and had not experienced a recurrence. The list of survey recipients was generated by searching VistA for the unique note title: Cancer Survivor Treatment Summary.
Sixty-six patients responded, a 67% response rate. The primary cancer diagnoses of the 66 study participants were lung (62.5%), colorectal (21.9%), melanoma (7.8%), head and neck (3.1%), and more than 1 malignancy (15.6%). Of the 66 respondents, 36.5% acknowledged receiving a treatment summary (23 patients).
Of those who acknowledge receiving a treatment summary, two-thirds stated that they have referred to the treatment summary for details about their diagnosis, treatment, plan for surveillance, and symptoms to report to practitioner. Between 73% and 76% were highly confident and between 22% and 25% were somewhat confident in their knowledge of their type of cancer, stage, treatment history and surveillance plan (> 90% positive response). The majority (66%) of patients were highly confident, and 32% were somewhat confident that there are resources available at VA to support their healthy lifestyle (98% positive response).
The survey also noted that 86% report being highly satisfied with care, and 92.4% are highly confident that their caregiver will provide compassionate care. Participants state that they have used the nutrition consults (38.5%), physical therapy (23%), health psychology (15.5%), smoking cessation (15.3%), and social work (10%). Of note, almost all those patients who reported using these services responded that they would recommend them.
Challenges
Despite the progress made at VACHS, there are significant challenges to meeting the CoC revised standard 3.3, which requires that 25% of patients treated with a stage I, II, or III cancer receive a Cancer Survivor Treatment Summary at an in-person visit in 2016. These relate primarily to multiple competing demands on provider time. In addition, 63.5% of patients who had been provided with a SCP at an in-person visit and responded to a satisfaction survey said they had not received the SCP. More research is needed to inform practice changes to optimize ongoing education and post-treatment care for veterans who are cancer survivors.
Conclusion
VA cancer centers seeking to ACoS CoC accreditation are required to provide a written summary of cancer treatment and plan for survivorship care to patients
diagnosed with at stage I, II, or III malignancy and treated at their facility. This requirement necessitates a significant ongoing investment in clinician and administrative workload to comply with the standard. The Comprehensive Cancer Center at VACHS, building on work by the SSIG, developed a concise note template in CPRS that enables oncology clinicians to create a treatment summary for each patient who meets criteria. During this process, VACHS has developed resources that may be useful to other VA cancer centers who are working to create this process. Clinicians interested in trialing the VACHS Cancer Survivor Treatment Summary template are encouraged to contact the author for additional information.
Visit www.fedprac.com/avahoupdates for an exclusive video interview with the author.
Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies.
Acknowledgments
This project was a team effort. The author thanks the following VACHS colleagues for their input and support for this project: Michal Rose, MD, cancer center director; Donna Connery, tumor registrar; Renee Midgett, former clinical applications coordinator; Robert Troy Nall, health systems specialist; Forms Committee; Clarice Grens, APRN; and Jessica Barber, PhD, clinical psychologist as well as Members of VA Survivorship special interest group.
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1. American College of Surgeons Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx. Accessed January 18, 2017.
2. American College of Surgeons Commission on Cancer. Cancer program standards: ensuring patient-centered care 2016 Edition. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Accessed January 18, 2017.
3. Smith J, Arfons L, Cmolik B, Moye J, Ballard E, Haggstrom D. Development and implementation of a veterans’ cancer survivorship program. Fed Pract. 2015;32(suppl 1):42S-48S..
4. National Comprehensive Cancer Network. NCCN distress thermometer and problem list for patients. http://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf. Updated May 6, 2016. Accessed January 18, 2016.
In 2012, staff at the Comprehensive Cancer Center of VA Connecticut Healthcare System in West Haven (VACHS) decided to create a template for a Cancer Survivorship Treatment Summary and Care Plan (Survivorship Care Plan [SCP] and treatment summary are used interchangeably in this article and refer to the same document) in the VACHS Computerized Patient Record System (CPRS) to be used as one component of a Multidisciplinary Cancer Survivorship Clinic. The clinic’s providers would be advanced practice registered nurses (APRNs), based in the Comprehensive Cancer Center of VACHS. This quality improvement project was created in response to the American College of Surgeons (ACoS) Commission on Cancer (CoC) Standard 3.3, effective January 1, 2012, which mandated that the cancer committee “develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment.”1 According to ACoS CoC the process should be monitored, evaluated, presented, and documented at least annually to the cancer committee.
Creating the CPRS template took 9 months before the first SCPs were provided to patients in July 2013. Since that time, 210 SCPs have been provided to VACHS patients. Patient response was positive. Since implementation, patients have told their provider that they found the SCP’s list of signs and symptoms of cancer recurrence a helpful and reassuring resource.
Objective
This project is designed to be road map for other VA providers to follow by offering a review of the processes and resources that VACHS used and to share lessons learned.
The SCP is an important component of the survivorship standard of care. The CoC Standard 3.3 (version 2016) mandated that SCPs must be provided during an in-person meeting to an annually increasing percentage of patients initially diagnosed and treated for stage I, II, or III cancer in a given year—10% for those diagnosed and treated in 2015 and 25% for those diagnosed and treated in 2016 with increases in the required percentage each year thereafter. The mandated increase from 10% in 2015 to 25% in 2016 is significant and requires substantial resources to meet. Cancer centers seeking to achieve or maintain ACoS accreditation must fulfill this standard.2
It is important to establish a robust SCP process proactively. The percentage of SCPs provided that is mandated by the CoC continues to rise annually and the rate of survivorship also is expected to rise. The January 2016 CoC update clarified the phase-in of this standard over 4 years: (1) 2015: Implement a process to provide treatment summaries to at least 10% of patients treated for stage I-III cancer; (2) By end of 2016: Provide treatment summaries to at least 25% of eligible patients; (3) By end of 2017: Provide treatment summaries to at least 50% of eligible patients; and (4) By end of 2018: Provide treatment summaries to at least 75% of eligible patients.2
Background
In the fall of 2012, the project began with listening to survivors. The VA Survivorship Special Interest Group (SSIG) already had done significant work throughout the national VA system.3 The VACHS staff participated in monthly SSIG conference calls and reviewed the extensive resources created by its members, which is available through an internal VA website (Figure).
The VACHS staff reviewed the experiences of 2 VA sites using a draft CPRS survivorship care plan template. They also spent a day observing an established survivorship clinic at the VACHS academic affiliate Yale-New Haven Hospital (YNHH) in November of 2012. At that time, the YNHH clinic format was a 2-visit model for patients who had completed treatment. During their first visit to the YNHH clinic, patients meet with 4 members of an interdisciplinary team: a medical provider, a dietician, a physical therapist, and a social worker. At the end of the visit, the patient receives a SCP, a comprehensive document based on a template from the Livestrong organization.4 The second visit is scheduled 3 months later to follow up with patients and address any ongoing concerns. Patients then would be discharged from the survivorship clinic.
Given the complicated needs of the VA patient population, VACHS staff wanted to create a survivorship clinic that would provide regular, close followup by a multidisciplinary team within the existing hematology/oncology outpatient clinic. This design was believed to better serve veteran cancer survivors than a stand-alone clinic.
Clinic Creation
The VACHS chief of oncology, the cancer registrar, and the cancer care coordinator met in October 2012 to review Standard 3.3 and determine the best approach for VACHS patients. A plan to phase survivorship care into the existing hematology/oncology clinic was established. The group identified appropriate cancer survivor patients who would be followed by an APRN and a medical doctor. After reviewing the most common cancers treated at VACHS, it was decided to start the survivorship clinic with patients who had been treated for stage I lung cancer, stage I or II colorectal cancer, and/or stage I melanoma. These patients are not usually treated with chemotherapy, are less likely to relapse given early stage, and generally would be expected to be less complicated medically than would patients with more advanced disease. Patients previously treated for more advanced cancers would continue to be followed by medical doctors unless determined to be appropriate for migration to this new clinic.
The VACHS staff chose to embed this new clinic within existing APRN hematology/oncology clinics. Survivorship clinic visits were not restricted to a particular date or time in order to maximize efficiency as the workload associated with this clinic was not initially known. To track patient volume in the clinic, VACHS staff created the following note titles for patients being followed in the survivorship clinic: (1) Hem/Onc APRN Survivorship Clinic Initial Consult; (2) Hem/Onc APRN Cancer Survivorship Note; and (3) Cancer Survivor Treatment Summary. Unique note titles can be searched in VistA to create real-time reporting, thereby enabling staff to monitor the size, demographics, and workload associated with this clinic.
Vision for Care
The goals of survivorship care at VACHS were (1) to prevent, detect early, and treat complications from cancer treatment through regular clinic visits and ongoing education and support; (2) to provide holistic, individualized medical care and psychosocial support for veterans who are cancer survivors; (3) to maximize health, quality of life, and longevity; and (4) to facilitate appropriate referrals.
The VACHS clinic model incorporated: (1) regular clinic visits and follow-up with laboratories and imaging for 5 years, based on National Comprehensive Cancer Network (NCCN) guidelines; (2) monitoring for psychosocial distress at each visit, using a modified version of the NCCN Distress Thermometer, and a registered nurse or health tech documenting scores in CPRS with a templated Distress Screening note; (3) referrals to nutrition, health psychology, social work, physical therapy, smoking cessation, and the palliative care team as appropriate; (4) education about diagnosis, risk factors, and healthy living; and (5) reviewing the SCP to each patient.
The VACHS approach was designed to be patientcentered by incorporating individualized surveillance and screening guidelines, wellness education tailored to cancer type and treatment history, psychosocial support for survivors and their families through individual therapy and support groups for patients and families, and individual exercise and fitness recommendations through physical therapy and pulmonary rehabilitation referrals.
Needs Assessment
The VACHS cancer care coordinator worked with the tumor registrar to generate an initial referral patient list. Patients were identified in the tumor registry who met these criteria: diagnosed with stage I lung cancer or stage I or II colorectal cancer and treated at VACHS between 2008 and 2012. Initial research showed that there were 117 patients followed in the VACHS hematology/oncology clinic in the fall of 2012 who met the criteria. At that time, 80% of the patients identified were being followed by an attending oncology physician and 20% by an oncology APRN (Table).
Based on this initial analysis, the projected patient load for this clinic was anticipated to be 100 patients annually with between 2 and 4 annual visits each. Of note, in 2013 VACHS started a low-dose chest computed tomography screening program for patients who met high-risk criteria. The number of patients diagnosed and treated for stage I non-small cell lung cancer at VACHS during 2014 and 2015 was more than double the number treated in 2012.
Partnering With IT
The VACHS cancer care coordinator contacted the VISN 1 clinical application coordinator (CAC) in October 2012 who then reached out to her counterpart in Boston, where the sample CPRS template from the survivorship toolkit (toolkit template) was being tested. In November 2012, the VACHS CAC loaded the toolkit template into the test folder of the template drawer of VACHS CPRS. Changes were made over time to shorten the toolkit template to include the relevant information using the shortest number of words.
The template was modified by deleting 3 sections. The appointment list and the medication list were eliminated from the template as it was felt that these change with each visit. The psychosocial distress assessment also was eliminated as this score was known to change from visit to visit.
A separate initiative was undertaken simultaneously to address the need to monitor oncology patients for psychosocial distress regularly. Health psychology providers at VACHS used the NCCN Distress Thermometer to monitor distress in oncology patients. The team elected to take the distress assessment language out of the SCP and create a separate note template to record the distress scores for VACHS patients. The group chose the note titles Cancer Survivor Treatment Summary and Patient Distress Screening to clarify the purpose of the notes and to make searching CPRS or VistA for the note titles easier for providers or researchers.
CPRS Template Format
The VACHS team decided to create a short, clear, document that included diagnosis (date, location, pathology, staging), treatment (types, dates, locations, complications), disease-specific plan for surveillance, healthy living guidelines, and contact information for the survivorship provider.
The template was designed to be relatively simple for a provider to create, using check boxes that would populate the template with disease-specific care plans based on NCCN guidelines.
Review Process
The VACHS team’s original goal was to provide the first treatment summary to a patient on January 1, 2013, 10 weeks after the initial meeting with the CAC. This turned out to be overly optimistic. The VACHS Forms Committee meets once a month at VACHS. There is a formal review process for CPRS templates and all the decision makers must be present (Review Process Time Line).
The changes requested by the VACHS Forms Committee included taking out medications/appointments sections; spelling out all abbreviations; asking the educational coordinator to review educational portion of the template to make sure it complies with guidelines and reading level; and adding fields next to date of diagnosis field and, in every instance of treatment, dates for author to indicate where the diagnosis was made and where the treatment occurred.
Implementation
Starting with the list originally generated by the tumor registrar, the VACHS team set a goal of about 100 patients to be followed in an APRN survivorship clinic to focus on stage I lung cancer, stage I and II colorectal cancer, and stage I melanoma patients. As appropriate, patients were transitioned from being followed by a fellow or attending MD at the VACHS hematology/oncology clinic to the APRN survivorship clinic. As patients were seen in clinic for scheduled surveillance visits, the APRN survivorship clinic provider reviewed the process of creating a treatment summary with each patient and family as appropriate and reviewed their history with them in person to make sure that any complications related to treatment were identified. During each survivorship clinic visit, the provider verbally reviewed the plan for surveillance and signs and symptoms of recurrence to report to their clinician before providing the SCP to the patient.
Over the past 3 years, the VACHS Cancer Center has incorporated a hematology/oncology dietician, a health psychologist, a social worker, and a physical therapist into the outpatient clinic; all are usually available for sameday referrals. During regular survivorship visits, the survivorship APRN reviews any needs the veteran has and makes appropriate referrals. Palliative care personnel also are available in the cancer center during outpatient clinics for same-day consults. Survivorship patients are not automatically scheduled to see members of the team; rather, appropriate referrals are made via consults in CPRS after meeting with patients and assessing their needs.
In the past 3 years, 2 support groups were created, one for VACHS cancer center patients and one for caregivers. These groups are well attended by oncology and survivorship patients.
As part of the patient’s initial visit, the survivorship APRN reviews the patient’s information in CPRS and systematically reviews the original pathology, surgery, and tumor board notes as well as any notes related to treatments both within the VA system and in the community and creates the treatment summary CPRS note. In cases in which the patient had treatment at an outside facility, the patient signs a release of information form and original documentation of that treatment is requested. The completion of the SCP depends on the timing of when all appropriate information is available to be reviewed. As with all templates, minor editing is done to create the final note.
Once the survivorship APRN completes and signs the SCP, the patient’s primary care provider is added as a cosigner to the note. The patient receives the signed SCP at the visit. The January 2016 CoC Standard 3.3 update specifies that the SCP must be provided to the patient at an in-person visit and not mailed. As the SCP is a signed note in CPRS, it is easy to keep track of the date on which the information was reviewed and documented. If there are changes, such as a new cancer diagnoses or subsequent treatments, it is clear when the original information was documented. After providing the SCP to the patient and reviewing the document at an in-person meeting with the patient, the survivorship APRN documents the date that the SCP was provided to the patient in the progress note in CPRS. Once signed, the SCP is available to all providers within VACHS and able to be printed.
To date, 210 treatment summaries have been created for and provided to patients. Only 1 provider, the cancer care coordinator, is currently using the template, but use is not restricted. Patient feedback has been favorable: Patients state that the list of symptoms included in the treatment summary is useful. Patients report sharing the document with outside providers. The treatment summary also provides patients and families with a predictable plan for surveillance and regular in-person follow-up.
Patient Satsfaction Survey
In March 2015, VACHS conducted a patient satisfaction survey of 98 patients who had been provided with treatment summaries to better understand the impact on patients. This survey assessed quality measures, including patient’s confidence in their understanding of their cancer diagnosis, stage, treatment history, and plan for surveillance. Patient satisfaction with the resources available to them for healthy living also was measured, as was patient satisfaction with their survivorship and oncology providers and awareness that they had received a care plan.
Surveys were mailed to all VACHS survivorship patients for whom the treatment summaries were created who were still living and had not experienced a recurrence. The list of survey recipients was generated by searching VistA for the unique note title: Cancer Survivor Treatment Summary.
Sixty-six patients responded, a 67% response rate. The primary cancer diagnoses of the 66 study participants were lung (62.5%), colorectal (21.9%), melanoma (7.8%), head and neck (3.1%), and more than 1 malignancy (15.6%). Of the 66 respondents, 36.5% acknowledged receiving a treatment summary (23 patients).
Of those who acknowledge receiving a treatment summary, two-thirds stated that they have referred to the treatment summary for details about their diagnosis, treatment, plan for surveillance, and symptoms to report to practitioner. Between 73% and 76% were highly confident and between 22% and 25% were somewhat confident in their knowledge of their type of cancer, stage, treatment history and surveillance plan (> 90% positive response). The majority (66%) of patients were highly confident, and 32% were somewhat confident that there are resources available at VA to support their healthy lifestyle (98% positive response).
The survey also noted that 86% report being highly satisfied with care, and 92.4% are highly confident that their caregiver will provide compassionate care. Participants state that they have used the nutrition consults (38.5%), physical therapy (23%), health psychology (15.5%), smoking cessation (15.3%), and social work (10%). Of note, almost all those patients who reported using these services responded that they would recommend them.
Challenges
Despite the progress made at VACHS, there are significant challenges to meeting the CoC revised standard 3.3, which requires that 25% of patients treated with a stage I, II, or III cancer receive a Cancer Survivor Treatment Summary at an in-person visit in 2016. These relate primarily to multiple competing demands on provider time. In addition, 63.5% of patients who had been provided with a SCP at an in-person visit and responded to a satisfaction survey said they had not received the SCP. More research is needed to inform practice changes to optimize ongoing education and post-treatment care for veterans who are cancer survivors.
Conclusion
VA cancer centers seeking to ACoS CoC accreditation are required to provide a written summary of cancer treatment and plan for survivorship care to patients
diagnosed with at stage I, II, or III malignancy and treated at their facility. This requirement necessitates a significant ongoing investment in clinician and administrative workload to comply with the standard. The Comprehensive Cancer Center at VACHS, building on work by the SSIG, developed a concise note template in CPRS that enables oncology clinicians to create a treatment summary for each patient who meets criteria. During this process, VACHS has developed resources that may be useful to other VA cancer centers who are working to create this process. Clinicians interested in trialing the VACHS Cancer Survivor Treatment Summary template are encouraged to contact the author for additional information.
Visit www.fedprac.com/avahoupdates for an exclusive video interview with the author.
Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies.
Acknowledgments
This project was a team effort. The author thanks the following VACHS colleagues for their input and support for this project: Michal Rose, MD, cancer center director; Donna Connery, tumor registrar; Renee Midgett, former clinical applications coordinator; Robert Troy Nall, health systems specialist; Forms Committee; Clarice Grens, APRN; and Jessica Barber, PhD, clinical psychologist as well as Members of VA Survivorship special interest group.
Click here to read the digital edition.
In 2012, staff at the Comprehensive Cancer Center of VA Connecticut Healthcare System in West Haven (VACHS) decided to create a template for a Cancer Survivorship Treatment Summary and Care Plan (Survivorship Care Plan [SCP] and treatment summary are used interchangeably in this article and refer to the same document) in the VACHS Computerized Patient Record System (CPRS) to be used as one component of a Multidisciplinary Cancer Survivorship Clinic. The clinic’s providers would be advanced practice registered nurses (APRNs), based in the Comprehensive Cancer Center of VACHS. This quality improvement project was created in response to the American College of Surgeons (ACoS) Commission on Cancer (CoC) Standard 3.3, effective January 1, 2012, which mandated that the cancer committee “develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment.”1 According to ACoS CoC the process should be monitored, evaluated, presented, and documented at least annually to the cancer committee.
Creating the CPRS template took 9 months before the first SCPs were provided to patients in July 2013. Since that time, 210 SCPs have been provided to VACHS patients. Patient response was positive. Since implementation, patients have told their provider that they found the SCP’s list of signs and symptoms of cancer recurrence a helpful and reassuring resource.
Objective
This project is designed to be road map for other VA providers to follow by offering a review of the processes and resources that VACHS used and to share lessons learned.
The SCP is an important component of the survivorship standard of care. The CoC Standard 3.3 (version 2016) mandated that SCPs must be provided during an in-person meeting to an annually increasing percentage of patients initially diagnosed and treated for stage I, II, or III cancer in a given year—10% for those diagnosed and treated in 2015 and 25% for those diagnosed and treated in 2016 with increases in the required percentage each year thereafter. The mandated increase from 10% in 2015 to 25% in 2016 is significant and requires substantial resources to meet. Cancer centers seeking to achieve or maintain ACoS accreditation must fulfill this standard.2
It is important to establish a robust SCP process proactively. The percentage of SCPs provided that is mandated by the CoC continues to rise annually and the rate of survivorship also is expected to rise. The January 2016 CoC update clarified the phase-in of this standard over 4 years: (1) 2015: Implement a process to provide treatment summaries to at least 10% of patients treated for stage I-III cancer; (2) By end of 2016: Provide treatment summaries to at least 25% of eligible patients; (3) By end of 2017: Provide treatment summaries to at least 50% of eligible patients; and (4) By end of 2018: Provide treatment summaries to at least 75% of eligible patients.2
Background
In the fall of 2012, the project began with listening to survivors. The VA Survivorship Special Interest Group (SSIG) already had done significant work throughout the national VA system.3 The VACHS staff participated in monthly SSIG conference calls and reviewed the extensive resources created by its members, which is available through an internal VA website (Figure).
The VACHS staff reviewed the experiences of 2 VA sites using a draft CPRS survivorship care plan template. They also spent a day observing an established survivorship clinic at the VACHS academic affiliate Yale-New Haven Hospital (YNHH) in November of 2012. At that time, the YNHH clinic format was a 2-visit model for patients who had completed treatment. During their first visit to the YNHH clinic, patients meet with 4 members of an interdisciplinary team: a medical provider, a dietician, a physical therapist, and a social worker. At the end of the visit, the patient receives a SCP, a comprehensive document based on a template from the Livestrong organization.4 The second visit is scheduled 3 months later to follow up with patients and address any ongoing concerns. Patients then would be discharged from the survivorship clinic.
Given the complicated needs of the VA patient population, VACHS staff wanted to create a survivorship clinic that would provide regular, close followup by a multidisciplinary team within the existing hematology/oncology outpatient clinic. This design was believed to better serve veteran cancer survivors than a stand-alone clinic.
Clinic Creation
The VACHS chief of oncology, the cancer registrar, and the cancer care coordinator met in October 2012 to review Standard 3.3 and determine the best approach for VACHS patients. A plan to phase survivorship care into the existing hematology/oncology clinic was established. The group identified appropriate cancer survivor patients who would be followed by an APRN and a medical doctor. After reviewing the most common cancers treated at VACHS, it was decided to start the survivorship clinic with patients who had been treated for stage I lung cancer, stage I or II colorectal cancer, and/or stage I melanoma. These patients are not usually treated with chemotherapy, are less likely to relapse given early stage, and generally would be expected to be less complicated medically than would patients with more advanced disease. Patients previously treated for more advanced cancers would continue to be followed by medical doctors unless determined to be appropriate for migration to this new clinic.
The VACHS staff chose to embed this new clinic within existing APRN hematology/oncology clinics. Survivorship clinic visits were not restricted to a particular date or time in order to maximize efficiency as the workload associated with this clinic was not initially known. To track patient volume in the clinic, VACHS staff created the following note titles for patients being followed in the survivorship clinic: (1) Hem/Onc APRN Survivorship Clinic Initial Consult; (2) Hem/Onc APRN Cancer Survivorship Note; and (3) Cancer Survivor Treatment Summary. Unique note titles can be searched in VistA to create real-time reporting, thereby enabling staff to monitor the size, demographics, and workload associated with this clinic.
Vision for Care
The goals of survivorship care at VACHS were (1) to prevent, detect early, and treat complications from cancer treatment through regular clinic visits and ongoing education and support; (2) to provide holistic, individualized medical care and psychosocial support for veterans who are cancer survivors; (3) to maximize health, quality of life, and longevity; and (4) to facilitate appropriate referrals.
The VACHS clinic model incorporated: (1) regular clinic visits and follow-up with laboratories and imaging for 5 years, based on National Comprehensive Cancer Network (NCCN) guidelines; (2) monitoring for psychosocial distress at each visit, using a modified version of the NCCN Distress Thermometer, and a registered nurse or health tech documenting scores in CPRS with a templated Distress Screening note; (3) referrals to nutrition, health psychology, social work, physical therapy, smoking cessation, and the palliative care team as appropriate; (4) education about diagnosis, risk factors, and healthy living; and (5) reviewing the SCP to each patient.
The VACHS approach was designed to be patientcentered by incorporating individualized surveillance and screening guidelines, wellness education tailored to cancer type and treatment history, psychosocial support for survivors and their families through individual therapy and support groups for patients and families, and individual exercise and fitness recommendations through physical therapy and pulmonary rehabilitation referrals.
Needs Assessment
The VACHS cancer care coordinator worked with the tumor registrar to generate an initial referral patient list. Patients were identified in the tumor registry who met these criteria: diagnosed with stage I lung cancer or stage I or II colorectal cancer and treated at VACHS between 2008 and 2012. Initial research showed that there were 117 patients followed in the VACHS hematology/oncology clinic in the fall of 2012 who met the criteria. At that time, 80% of the patients identified were being followed by an attending oncology physician and 20% by an oncology APRN (Table).
Based on this initial analysis, the projected patient load for this clinic was anticipated to be 100 patients annually with between 2 and 4 annual visits each. Of note, in 2013 VACHS started a low-dose chest computed tomography screening program for patients who met high-risk criteria. The number of patients diagnosed and treated for stage I non-small cell lung cancer at VACHS during 2014 and 2015 was more than double the number treated in 2012.
Partnering With IT
The VACHS cancer care coordinator contacted the VISN 1 clinical application coordinator (CAC) in October 2012 who then reached out to her counterpart in Boston, where the sample CPRS template from the survivorship toolkit (toolkit template) was being tested. In November 2012, the VACHS CAC loaded the toolkit template into the test folder of the template drawer of VACHS CPRS. Changes were made over time to shorten the toolkit template to include the relevant information using the shortest number of words.
The template was modified by deleting 3 sections. The appointment list and the medication list were eliminated from the template as it was felt that these change with each visit. The psychosocial distress assessment also was eliminated as this score was known to change from visit to visit.
A separate initiative was undertaken simultaneously to address the need to monitor oncology patients for psychosocial distress regularly. Health psychology providers at VACHS used the NCCN Distress Thermometer to monitor distress in oncology patients. The team elected to take the distress assessment language out of the SCP and create a separate note template to record the distress scores for VACHS patients. The group chose the note titles Cancer Survivor Treatment Summary and Patient Distress Screening to clarify the purpose of the notes and to make searching CPRS or VistA for the note titles easier for providers or researchers.
CPRS Template Format
The VACHS team decided to create a short, clear, document that included diagnosis (date, location, pathology, staging), treatment (types, dates, locations, complications), disease-specific plan for surveillance, healthy living guidelines, and contact information for the survivorship provider.
The template was designed to be relatively simple for a provider to create, using check boxes that would populate the template with disease-specific care plans based on NCCN guidelines.
Review Process
The VACHS team’s original goal was to provide the first treatment summary to a patient on January 1, 2013, 10 weeks after the initial meeting with the CAC. This turned out to be overly optimistic. The VACHS Forms Committee meets once a month at VACHS. There is a formal review process for CPRS templates and all the decision makers must be present (Review Process Time Line).
The changes requested by the VACHS Forms Committee included taking out medications/appointments sections; spelling out all abbreviations; asking the educational coordinator to review educational portion of the template to make sure it complies with guidelines and reading level; and adding fields next to date of diagnosis field and, in every instance of treatment, dates for author to indicate where the diagnosis was made and where the treatment occurred.
Implementation
Starting with the list originally generated by the tumor registrar, the VACHS team set a goal of about 100 patients to be followed in an APRN survivorship clinic to focus on stage I lung cancer, stage I and II colorectal cancer, and stage I melanoma patients. As appropriate, patients were transitioned from being followed by a fellow or attending MD at the VACHS hematology/oncology clinic to the APRN survivorship clinic. As patients were seen in clinic for scheduled surveillance visits, the APRN survivorship clinic provider reviewed the process of creating a treatment summary with each patient and family as appropriate and reviewed their history with them in person to make sure that any complications related to treatment were identified. During each survivorship clinic visit, the provider verbally reviewed the plan for surveillance and signs and symptoms of recurrence to report to their clinician before providing the SCP to the patient.
Over the past 3 years, the VACHS Cancer Center has incorporated a hematology/oncology dietician, a health psychologist, a social worker, and a physical therapist into the outpatient clinic; all are usually available for sameday referrals. During regular survivorship visits, the survivorship APRN reviews any needs the veteran has and makes appropriate referrals. Palliative care personnel also are available in the cancer center during outpatient clinics for same-day consults. Survivorship patients are not automatically scheduled to see members of the team; rather, appropriate referrals are made via consults in CPRS after meeting with patients and assessing their needs.
In the past 3 years, 2 support groups were created, one for VACHS cancer center patients and one for caregivers. These groups are well attended by oncology and survivorship patients.
As part of the patient’s initial visit, the survivorship APRN reviews the patient’s information in CPRS and systematically reviews the original pathology, surgery, and tumor board notes as well as any notes related to treatments both within the VA system and in the community and creates the treatment summary CPRS note. In cases in which the patient had treatment at an outside facility, the patient signs a release of information form and original documentation of that treatment is requested. The completion of the SCP depends on the timing of when all appropriate information is available to be reviewed. As with all templates, minor editing is done to create the final note.
Once the survivorship APRN completes and signs the SCP, the patient’s primary care provider is added as a cosigner to the note. The patient receives the signed SCP at the visit. The January 2016 CoC Standard 3.3 update specifies that the SCP must be provided to the patient at an in-person visit and not mailed. As the SCP is a signed note in CPRS, it is easy to keep track of the date on which the information was reviewed and documented. If there are changes, such as a new cancer diagnoses or subsequent treatments, it is clear when the original information was documented. After providing the SCP to the patient and reviewing the document at an in-person meeting with the patient, the survivorship APRN documents the date that the SCP was provided to the patient in the progress note in CPRS. Once signed, the SCP is available to all providers within VACHS and able to be printed.
To date, 210 treatment summaries have been created for and provided to patients. Only 1 provider, the cancer care coordinator, is currently using the template, but use is not restricted. Patient feedback has been favorable: Patients state that the list of symptoms included in the treatment summary is useful. Patients report sharing the document with outside providers. The treatment summary also provides patients and families with a predictable plan for surveillance and regular in-person follow-up.
Patient Satsfaction Survey
In March 2015, VACHS conducted a patient satisfaction survey of 98 patients who had been provided with treatment summaries to better understand the impact on patients. This survey assessed quality measures, including patient’s confidence in their understanding of their cancer diagnosis, stage, treatment history, and plan for surveillance. Patient satisfaction with the resources available to them for healthy living also was measured, as was patient satisfaction with their survivorship and oncology providers and awareness that they had received a care plan.
Surveys were mailed to all VACHS survivorship patients for whom the treatment summaries were created who were still living and had not experienced a recurrence. The list of survey recipients was generated by searching VistA for the unique note title: Cancer Survivor Treatment Summary.
Sixty-six patients responded, a 67% response rate. The primary cancer diagnoses of the 66 study participants were lung (62.5%), colorectal (21.9%), melanoma (7.8%), head and neck (3.1%), and more than 1 malignancy (15.6%). Of the 66 respondents, 36.5% acknowledged receiving a treatment summary (23 patients).
Of those who acknowledge receiving a treatment summary, two-thirds stated that they have referred to the treatment summary for details about their diagnosis, treatment, plan for surveillance, and symptoms to report to practitioner. Between 73% and 76% were highly confident and between 22% and 25% were somewhat confident in their knowledge of their type of cancer, stage, treatment history and surveillance plan (> 90% positive response). The majority (66%) of patients were highly confident, and 32% were somewhat confident that there are resources available at VA to support their healthy lifestyle (98% positive response).
The survey also noted that 86% report being highly satisfied with care, and 92.4% are highly confident that their caregiver will provide compassionate care. Participants state that they have used the nutrition consults (38.5%), physical therapy (23%), health psychology (15.5%), smoking cessation (15.3%), and social work (10%). Of note, almost all those patients who reported using these services responded that they would recommend them.
Challenges
Despite the progress made at VACHS, there are significant challenges to meeting the CoC revised standard 3.3, which requires that 25% of patients treated with a stage I, II, or III cancer receive a Cancer Survivor Treatment Summary at an in-person visit in 2016. These relate primarily to multiple competing demands on provider time. In addition, 63.5% of patients who had been provided with a SCP at an in-person visit and responded to a satisfaction survey said they had not received the SCP. More research is needed to inform practice changes to optimize ongoing education and post-treatment care for veterans who are cancer survivors.
Conclusion
VA cancer centers seeking to ACoS CoC accreditation are required to provide a written summary of cancer treatment and plan for survivorship care to patients
diagnosed with at stage I, II, or III malignancy and treated at their facility. This requirement necessitates a significant ongoing investment in clinician and administrative workload to comply with the standard. The Comprehensive Cancer Center at VACHS, building on work by the SSIG, developed a concise note template in CPRS that enables oncology clinicians to create a treatment summary for each patient who meets criteria. During this process, VACHS has developed resources that may be useful to other VA cancer centers who are working to create this process. Clinicians interested in trialing the VACHS Cancer Survivor Treatment Summary template are encouraged to contact the author for additional information.
Visit www.fedprac.com/avahoupdates for an exclusive video interview with the author.
Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies.
Acknowledgments
This project was a team effort. The author thanks the following VACHS colleagues for their input and support for this project: Michal Rose, MD, cancer center director; Donna Connery, tumor registrar; Renee Midgett, former clinical applications coordinator; Robert Troy Nall, health systems specialist; Forms Committee; Clarice Grens, APRN; and Jessica Barber, PhD, clinical psychologist as well as Members of VA Survivorship special interest group.
Click here to read the digital edition.
1. American College of Surgeons Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx. Accessed January 18, 2017.
2. American College of Surgeons Commission on Cancer. Cancer program standards: ensuring patient-centered care 2016 Edition. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Accessed January 18, 2017.
3. Smith J, Arfons L, Cmolik B, Moye J, Ballard E, Haggstrom D. Development and implementation of a veterans’ cancer survivorship program. Fed Pract. 2015;32(suppl 1):42S-48S..
4. National Comprehensive Cancer Network. NCCN distress thermometer and problem list for patients. http://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf. Updated May 6, 2016. Accessed January 18, 2016.
1. American College of Surgeons Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx. Accessed January 18, 2017.
2. American College of Surgeons Commission on Cancer. Cancer program standards: ensuring patient-centered care 2016 Edition. https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Accessed January 18, 2017.
3. Smith J, Arfons L, Cmolik B, Moye J, Ballard E, Haggstrom D. Development and implementation of a veterans’ cancer survivorship program. Fed Pract. 2015;32(suppl 1):42S-48S..
4. National Comprehensive Cancer Network. NCCN distress thermometer and problem list for patients. http://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf. Updated May 6, 2016. Accessed January 18, 2016.
Palliative care underutilized in dementia patients with acute abdomen
Despite high rates of in-hospital mortality and nonroutine discharge, palliative care is underutilized in patients with dementia and acute abdominal emergency, according to findings published in Surgery.
“Currently little is known about palliative care utilization among patients with dementia in possible need of surgical intervention. This raises the question of whether the acute surgical emergency represents an appropriate episode during which to introduce palliative care for patients with dementia,” wrote Ana Berlin, MD, FACS, of the department of surgery at New Jersey Medical School, Newark, N.J., and her coauthors (Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048).
Of 15,209 patients aged 50 years and older with dementia and acute abdomen, 7.5% received palliative care. Patients discharged nonroutinely and patients treated operatively were less likely to receive palliative care, the researchers reported.
Dr. Berlin and her colleagues used the National Inpatient Sample database to identify patients with dementia and acute abdomen who were admitted nonelectively between 2009 and 2013. They used ICD-9 primary and secondary codes to limit surgical diagnoses to gastrointestinal obstruction, ischemia, and perforation.
Overall, 50.9% of patients were admitted for gastrointestinal obstruction, 39.8% for perforation, 5.1% for bowel ischemia, and 4.3% for mixed pathology; 17.8% of patients were managed operatively.
Patients with intestinal ischemia had the highest rate of both operation and mortality, at 22.8% and 27.6%, respectively. These patients also had the lowest rate of routine discharge, at 15.9%, the authors said. In comparison, patients with obstruction had surgical intervention and in-hospital mortality rates of 17% and 10.1%, respectively, and a routine discharge rate of 20.9%. Patients with perforation had an operation rate of 13.8%, in-hospital mortality rate of 6.8%, and routine discharge rate of 26.9%.
The palliative care utilization rate overall was 7.5%. Patients with mixed pathology who did not have surgery were most likely to receive palliative care, at 21.1%, noted Dr. Berlin and her coauthors.
Patients who died postoperatively were less likely than were those who died without surgical intervention to have received palliative care (20.9% vs. 31.4%; odds ratio = 0.63, 95% confidence interval, 0.46-0.86; P = .0039), and those who were discharged nonroutinely after an operation were less likely than were patients who were discharged nonroutinely without an operation to receive palliative care (3.7% vs. 7.0%; OR = 0.44, 95% CI, 0.34-0.57; P less than .0001).
Lastly, patients who received palliative care had shorter median hospital stays than did those who did not receive palliative care (5 days vs. 6 days; P less than .0001). These patients also had lower median hospital charges ($29,500 vs. $31,600; P = .0403).
The results identify two subsets of patients with unmet palliative care needs: patients requiring operative intervention, and patients with a diagnosis of intestinal ischemia, the authors said. In addition, the findings suggest that “surgeons should consider initiating palliative care … early in the hospital course for patients with dementia presenting with acute surgical abdomen,” they wrote.
“Both hip fracture and intensive care unit admission in patients with dementia have been described as appropriate triggers for palliative care assessment. ... Acute abdominal emergency [may also represent] an appropriate episode during which to introduce palliative care for patients with dementia,” they concluded.
The study was funded by the Rutgers New Jersey Medical School department of surgery and the New Jersey Medical School Hispanic Center of Excellence, Health Resources, and Services Administration. No other disclosures were reported.
SOURCE: Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048.
Few surgeons would argue that a patient with dementia and an acute abdomen would be less appropriate for a palliative care consultation than demented patients with a hip fracture or ICU admission who have been shown to benefit from triggered palliative care consults. However, the dynamic interaction between patient, family, and surgeon, described by Thomas Miner as the “palliative triangle,” will likely prevent universal acceptance of triggered consults (Ann Surg Oncol. 2002;9[7]:696-709). Despite the current trend of increasingly algorithmic care, there is still a need for surgeon autonomy for treatment decisions even when the recommended triggered intervention is highly appropriate. A mentor of mine put it, “I never do things routinely, but there are some things I do all the time.” As the benefits of palliative care become more evident, the referrals for palliative care for this latest indication will become “some things I do all the time” just as pharmacokinetics referrals have become for antibiotics, anticoagulation, and total parenteral nutrition.
Few surgeons would argue that a patient with dementia and an acute abdomen would be less appropriate for a palliative care consultation than demented patients with a hip fracture or ICU admission who have been shown to benefit from triggered palliative care consults. However, the dynamic interaction between patient, family, and surgeon, described by Thomas Miner as the “palliative triangle,” will likely prevent universal acceptance of triggered consults (Ann Surg Oncol. 2002;9[7]:696-709). Despite the current trend of increasingly algorithmic care, there is still a need for surgeon autonomy for treatment decisions even when the recommended triggered intervention is highly appropriate. A mentor of mine put it, “I never do things routinely, but there are some things I do all the time.” As the benefits of palliative care become more evident, the referrals for palliative care for this latest indication will become “some things I do all the time” just as pharmacokinetics referrals have become for antibiotics, anticoagulation, and total parenteral nutrition.
Few surgeons would argue that a patient with dementia and an acute abdomen would be less appropriate for a palliative care consultation than demented patients with a hip fracture or ICU admission who have been shown to benefit from triggered palliative care consults. However, the dynamic interaction between patient, family, and surgeon, described by Thomas Miner as the “palliative triangle,” will likely prevent universal acceptance of triggered consults (Ann Surg Oncol. 2002;9[7]:696-709). Despite the current trend of increasingly algorithmic care, there is still a need for surgeon autonomy for treatment decisions even when the recommended triggered intervention is highly appropriate. A mentor of mine put it, “I never do things routinely, but there are some things I do all the time.” As the benefits of palliative care become more evident, the referrals for palliative care for this latest indication will become “some things I do all the time” just as pharmacokinetics referrals have become for antibiotics, anticoagulation, and total parenteral nutrition.
Despite high rates of in-hospital mortality and nonroutine discharge, palliative care is underutilized in patients with dementia and acute abdominal emergency, according to findings published in Surgery.
“Currently little is known about palliative care utilization among patients with dementia in possible need of surgical intervention. This raises the question of whether the acute surgical emergency represents an appropriate episode during which to introduce palliative care for patients with dementia,” wrote Ana Berlin, MD, FACS, of the department of surgery at New Jersey Medical School, Newark, N.J., and her coauthors (Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048).
Of 15,209 patients aged 50 years and older with dementia and acute abdomen, 7.5% received palliative care. Patients discharged nonroutinely and patients treated operatively were less likely to receive palliative care, the researchers reported.
Dr. Berlin and her colleagues used the National Inpatient Sample database to identify patients with dementia and acute abdomen who were admitted nonelectively between 2009 and 2013. They used ICD-9 primary and secondary codes to limit surgical diagnoses to gastrointestinal obstruction, ischemia, and perforation.
Overall, 50.9% of patients were admitted for gastrointestinal obstruction, 39.8% for perforation, 5.1% for bowel ischemia, and 4.3% for mixed pathology; 17.8% of patients were managed operatively.
Patients with intestinal ischemia had the highest rate of both operation and mortality, at 22.8% and 27.6%, respectively. These patients also had the lowest rate of routine discharge, at 15.9%, the authors said. In comparison, patients with obstruction had surgical intervention and in-hospital mortality rates of 17% and 10.1%, respectively, and a routine discharge rate of 20.9%. Patients with perforation had an operation rate of 13.8%, in-hospital mortality rate of 6.8%, and routine discharge rate of 26.9%.
The palliative care utilization rate overall was 7.5%. Patients with mixed pathology who did not have surgery were most likely to receive palliative care, at 21.1%, noted Dr. Berlin and her coauthors.
Patients who died postoperatively were less likely than were those who died without surgical intervention to have received palliative care (20.9% vs. 31.4%; odds ratio = 0.63, 95% confidence interval, 0.46-0.86; P = .0039), and those who were discharged nonroutinely after an operation were less likely than were patients who were discharged nonroutinely without an operation to receive palliative care (3.7% vs. 7.0%; OR = 0.44, 95% CI, 0.34-0.57; P less than .0001).
Lastly, patients who received palliative care had shorter median hospital stays than did those who did not receive palliative care (5 days vs. 6 days; P less than .0001). These patients also had lower median hospital charges ($29,500 vs. $31,600; P = .0403).
The results identify two subsets of patients with unmet palliative care needs: patients requiring operative intervention, and patients with a diagnosis of intestinal ischemia, the authors said. In addition, the findings suggest that “surgeons should consider initiating palliative care … early in the hospital course for patients with dementia presenting with acute surgical abdomen,” they wrote.
“Both hip fracture and intensive care unit admission in patients with dementia have been described as appropriate triggers for palliative care assessment. ... Acute abdominal emergency [may also represent] an appropriate episode during which to introduce palliative care for patients with dementia,” they concluded.
The study was funded by the Rutgers New Jersey Medical School department of surgery and the New Jersey Medical School Hispanic Center of Excellence, Health Resources, and Services Administration. No other disclosures were reported.
SOURCE: Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048.
Despite high rates of in-hospital mortality and nonroutine discharge, palliative care is underutilized in patients with dementia and acute abdominal emergency, according to findings published in Surgery.
“Currently little is known about palliative care utilization among patients with dementia in possible need of surgical intervention. This raises the question of whether the acute surgical emergency represents an appropriate episode during which to introduce palliative care for patients with dementia,” wrote Ana Berlin, MD, FACS, of the department of surgery at New Jersey Medical School, Newark, N.J., and her coauthors (Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048).
Of 15,209 patients aged 50 years and older with dementia and acute abdomen, 7.5% received palliative care. Patients discharged nonroutinely and patients treated operatively were less likely to receive palliative care, the researchers reported.
Dr. Berlin and her colleagues used the National Inpatient Sample database to identify patients with dementia and acute abdomen who were admitted nonelectively between 2009 and 2013. They used ICD-9 primary and secondary codes to limit surgical diagnoses to gastrointestinal obstruction, ischemia, and perforation.
Overall, 50.9% of patients were admitted for gastrointestinal obstruction, 39.8% for perforation, 5.1% for bowel ischemia, and 4.3% for mixed pathology; 17.8% of patients were managed operatively.
Patients with intestinal ischemia had the highest rate of both operation and mortality, at 22.8% and 27.6%, respectively. These patients also had the lowest rate of routine discharge, at 15.9%, the authors said. In comparison, patients with obstruction had surgical intervention and in-hospital mortality rates of 17% and 10.1%, respectively, and a routine discharge rate of 20.9%. Patients with perforation had an operation rate of 13.8%, in-hospital mortality rate of 6.8%, and routine discharge rate of 26.9%.
The palliative care utilization rate overall was 7.5%. Patients with mixed pathology who did not have surgery were most likely to receive palliative care, at 21.1%, noted Dr. Berlin and her coauthors.
Patients who died postoperatively were less likely than were those who died without surgical intervention to have received palliative care (20.9% vs. 31.4%; odds ratio = 0.63, 95% confidence interval, 0.46-0.86; P = .0039), and those who were discharged nonroutinely after an operation were less likely than were patients who were discharged nonroutinely without an operation to receive palliative care (3.7% vs. 7.0%; OR = 0.44, 95% CI, 0.34-0.57; P less than .0001).
Lastly, patients who received palliative care had shorter median hospital stays than did those who did not receive palliative care (5 days vs. 6 days; P less than .0001). These patients also had lower median hospital charges ($29,500 vs. $31,600; P = .0403).
The results identify two subsets of patients with unmet palliative care needs: patients requiring operative intervention, and patients with a diagnosis of intestinal ischemia, the authors said. In addition, the findings suggest that “surgeons should consider initiating palliative care … early in the hospital course for patients with dementia presenting with acute surgical abdomen,” they wrote.
“Both hip fracture and intensive care unit admission in patients with dementia have been described as appropriate triggers for palliative care assessment. ... Acute abdominal emergency [may also represent] an appropriate episode during which to introduce palliative care for patients with dementia,” they concluded.
The study was funded by the Rutgers New Jersey Medical School department of surgery and the New Jersey Medical School Hispanic Center of Excellence, Health Resources, and Services Administration. No other disclosures were reported.
SOURCE: Surgery. 2017 Dec 4. doi: 10.1016/j.surg.2017.09.048.
FROM SURGERY
Key clinical point: Despite high mortality and frequent nonroutine discharges, palliative care is underutilized in dementia patients with acute abdominal emergency.
Major finding: Among dementia patients with acute abdominal emergency, 7.5% received palliative care.
Data source: A retrospective analysis of 15,209 patients aged 50 years and older from the National Inpatient Sample, for the period of 2009-2013.
Disclosures: The study was funded by the Rutgers New Jersey Medical School Department of Surgery and the New Jersey Medical School Hispanic Center of Excellence, Health Resources, and Services Administration.
SOURCE: Surgery. 2017 Dec 4. doi: http://dx.doi.org/10.1016/j.surg.2017.09.048.
The opioid epidemic, surgeons, and palliative care
Recent public and professional attention to what is now called the opioid epidemic has obvious implications for surgery and palliative care. Because of the status of “epidemic,” there is a sense of urgency within the surgical and palliative care community to reevaluate the assessment and treatment of patients for whom opioid therapy is being considered.
Although the liberal use of opioids is a common stereotype of palliative care, the use of opioids in the palliative care setting is part of a complex assessment and treatment process. Opioid use in this setting is analogous to palliative surgery in the surgical palliative care setting: It is one tool, and it is most effective and safe when based on an assessment of the more general picture. A fundamental concept of palliative care, “total pain,” provides a basis for improved pain management that goes far beyond the use and dependency on opioid therapy. Dame Cicely Saunders, who was mentored by a surgeon and later became a Fellow of the Royal College of Surgeons, defined the concept of total pain as the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles (BMJ. 2005 Jul 23;331[7510]:238). Blake Cady, a preeminent surgeon and surgical educator, once wrote that the day-to-day decisions in surgery are best made in the context of a surgical philosophy of care (J Am Coll Surg. 2005 Feb;200[2]:285-90). This applies to all interventions. Total-pain assessment provides us the opportunity to identify nonphysical factors associated with pain that might not indicate opioid use or even contraindicate their use. Existential distress or spiritual pain in a delirious or underassessed patient can be indistinguishable from physical distress. Socioeconomic factors, such as an inability to pay for medical care, can present as pain.
Surgeons are uniquely positioned as “listening posts” in the overall campaign to curb opioid misuse. They can identify patients at risk for or diagnosed with substance use disorder so they can be managed or referred for specialist treatment appropriately.
Awareness of other dimensions of pain will enhance their efficacy in this role.
Opioid sparing is a key tactic in the strategy for controlling opioid use and minimizing opioid-induced side effects. Occasionally surgical or interventional radiologic procedures are useful for this purpose.
There are immediate, specific actions surgeons can take in order to constructively participate in opioid use reform:
- Expand your patient’s pain history to include nonphysical dimensions of pain and refer appropriately.
- Know your opioids; carry an opioid conversion table. Errors in opioid conversion can result in significant undertreatment of pain but can result in overdosage just as easily.
- Know your pharmacist. Pharmacists are valuable allies in safe opioid prescribing and monitoring practices.
- Be wary of “standardized” order sets that include opioids. There is no standard dose or standard patient as we are rapidly learning from genomics.
- Utilize your state’s patient drug-monitoring program – a new pain for clinicians, but some headaches are worth it. It clearly has already put the brakes on opioid prescribing.
Given the recent public and professional attention to the problems of opioid misuse, there is a long-overdue opportunity to reassess not only the indications and management of opioid therapy but also our more general approach to the management of pain. There is now an opportunity for surgeons to play a major role in improving opioid-prescribing practice. One potentially successful approach could be better assessment and management of pain through an awareness and application of palliative care principles. Like all encounters with uncertainty, the best way out of the current opioid dilemma is the way through: Surgeons should not abandon opioids but – in conjunction with nurses, palliative care practitioners, pharmacists, and pain and anesthesia specialists – reinvent their role in the war on suffering.
Dr. Dunn is the medical director of the palliative care consultation service at the University of Pittsburgh Medical Center Hamot in Erie, Pa., and vice chair of the ACS Committee on Surgical Palliative Care.
Recent public and professional attention to what is now called the opioid epidemic has obvious implications for surgery and palliative care. Because of the status of “epidemic,” there is a sense of urgency within the surgical and palliative care community to reevaluate the assessment and treatment of patients for whom opioid therapy is being considered.
Although the liberal use of opioids is a common stereotype of palliative care, the use of opioids in the palliative care setting is part of a complex assessment and treatment process. Opioid use in this setting is analogous to palliative surgery in the surgical palliative care setting: It is one tool, and it is most effective and safe when based on an assessment of the more general picture. A fundamental concept of palliative care, “total pain,” provides a basis for improved pain management that goes far beyond the use and dependency on opioid therapy. Dame Cicely Saunders, who was mentored by a surgeon and later became a Fellow of the Royal College of Surgeons, defined the concept of total pain as the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles (BMJ. 2005 Jul 23;331[7510]:238). Blake Cady, a preeminent surgeon and surgical educator, once wrote that the day-to-day decisions in surgery are best made in the context of a surgical philosophy of care (J Am Coll Surg. 2005 Feb;200[2]:285-90). This applies to all interventions. Total-pain assessment provides us the opportunity to identify nonphysical factors associated with pain that might not indicate opioid use or even contraindicate their use. Existential distress or spiritual pain in a delirious or underassessed patient can be indistinguishable from physical distress. Socioeconomic factors, such as an inability to pay for medical care, can present as pain.
Surgeons are uniquely positioned as “listening posts” in the overall campaign to curb opioid misuse. They can identify patients at risk for or diagnosed with substance use disorder so they can be managed or referred for specialist treatment appropriately.
Awareness of other dimensions of pain will enhance their efficacy in this role.
Opioid sparing is a key tactic in the strategy for controlling opioid use and minimizing opioid-induced side effects. Occasionally surgical or interventional radiologic procedures are useful for this purpose.
There are immediate, specific actions surgeons can take in order to constructively participate in opioid use reform:
- Expand your patient’s pain history to include nonphysical dimensions of pain and refer appropriately.
- Know your opioids; carry an opioid conversion table. Errors in opioid conversion can result in significant undertreatment of pain but can result in overdosage just as easily.
- Know your pharmacist. Pharmacists are valuable allies in safe opioid prescribing and monitoring practices.
- Be wary of “standardized” order sets that include opioids. There is no standard dose or standard patient as we are rapidly learning from genomics.
- Utilize your state’s patient drug-monitoring program – a new pain for clinicians, but some headaches are worth it. It clearly has already put the brakes on opioid prescribing.
Given the recent public and professional attention to the problems of opioid misuse, there is a long-overdue opportunity to reassess not only the indications and management of opioid therapy but also our more general approach to the management of pain. There is now an opportunity for surgeons to play a major role in improving opioid-prescribing practice. One potentially successful approach could be better assessment and management of pain through an awareness and application of palliative care principles. Like all encounters with uncertainty, the best way out of the current opioid dilemma is the way through: Surgeons should not abandon opioids but – in conjunction with nurses, palliative care practitioners, pharmacists, and pain and anesthesia specialists – reinvent their role in the war on suffering.
Dr. Dunn is the medical director of the palliative care consultation service at the University of Pittsburgh Medical Center Hamot in Erie, Pa., and vice chair of the ACS Committee on Surgical Palliative Care.
Recent public and professional attention to what is now called the opioid epidemic has obvious implications for surgery and palliative care. Because of the status of “epidemic,” there is a sense of urgency within the surgical and palliative care community to reevaluate the assessment and treatment of patients for whom opioid therapy is being considered.
Although the liberal use of opioids is a common stereotype of palliative care, the use of opioids in the palliative care setting is part of a complex assessment and treatment process. Opioid use in this setting is analogous to palliative surgery in the surgical palliative care setting: It is one tool, and it is most effective and safe when based on an assessment of the more general picture. A fundamental concept of palliative care, “total pain,” provides a basis for improved pain management that goes far beyond the use and dependency on opioid therapy. Dame Cicely Saunders, who was mentored by a surgeon and later became a Fellow of the Royal College of Surgeons, defined the concept of total pain as the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles (BMJ. 2005 Jul 23;331[7510]:238). Blake Cady, a preeminent surgeon and surgical educator, once wrote that the day-to-day decisions in surgery are best made in the context of a surgical philosophy of care (J Am Coll Surg. 2005 Feb;200[2]:285-90). This applies to all interventions. Total-pain assessment provides us the opportunity to identify nonphysical factors associated with pain that might not indicate opioid use or even contraindicate their use. Existential distress or spiritual pain in a delirious or underassessed patient can be indistinguishable from physical distress. Socioeconomic factors, such as an inability to pay for medical care, can present as pain.
Surgeons are uniquely positioned as “listening posts” in the overall campaign to curb opioid misuse. They can identify patients at risk for or diagnosed with substance use disorder so they can be managed or referred for specialist treatment appropriately.
Awareness of other dimensions of pain will enhance their efficacy in this role.
Opioid sparing is a key tactic in the strategy for controlling opioid use and minimizing opioid-induced side effects. Occasionally surgical or interventional radiologic procedures are useful for this purpose.
There are immediate, specific actions surgeons can take in order to constructively participate in opioid use reform:
- Expand your patient’s pain history to include nonphysical dimensions of pain and refer appropriately.
- Know your opioids; carry an opioid conversion table. Errors in opioid conversion can result in significant undertreatment of pain but can result in overdosage just as easily.
- Know your pharmacist. Pharmacists are valuable allies in safe opioid prescribing and monitoring practices.
- Be wary of “standardized” order sets that include opioids. There is no standard dose or standard patient as we are rapidly learning from genomics.
- Utilize your state’s patient drug-monitoring program – a new pain for clinicians, but some headaches are worth it. It clearly has already put the brakes on opioid prescribing.
Given the recent public and professional attention to the problems of opioid misuse, there is a long-overdue opportunity to reassess not only the indications and management of opioid therapy but also our more general approach to the management of pain. There is now an opportunity for surgeons to play a major role in improving opioid-prescribing practice. One potentially successful approach could be better assessment and management of pain through an awareness and application of palliative care principles. Like all encounters with uncertainty, the best way out of the current opioid dilemma is the way through: Surgeons should not abandon opioids but – in conjunction with nurses, palliative care practitioners, pharmacists, and pain and anesthesia specialists – reinvent their role in the war on suffering.
Dr. Dunn is the medical director of the palliative care consultation service at the University of Pittsburgh Medical Center Hamot in Erie, Pa., and vice chair of the ACS Committee on Surgical Palliative Care.
Delivering Palliative Care in a Community Hospital: Experiences and Lessons Learned from the Front Lines
From the Division of Palliative Care, Butler Health System, Butler, PA (Drs. Stein, Reefer, Selvaggi, Ms. Doverspike); the University of Pittsburgh Medical Center, Pittsburgh, PA (Dr. Rajagopal); and the Duke Cancer Institute and Duke Fuqua School of Business, Durham, NC (Dr. Kamal).
Abstract
- Objective: To describe an approach to develop a community-centric palliative care program in a rural community health system and to review data collected over the program’s first year.
- Methods: We describe the underlying foundations of our program development including the health system’s prioritization of a palliative care program, funding opportunities, collaboration with community supports, and the importance of building a team and program that reflects a community’s needs. Data were collected through a program-maintained spreadsheet and a data monitoring system available through the Global Palliative Care Quality Alliance.
- Results: 516 new inpatient consultations were seen during the first year, for a penetration of 3.7%. The demographics of the patients who received consultation reflect that of the surrounding community. Over 50% of patients seen within the first year died, and hospice utilization at home and within facilities and inpatient hospice units increased. In addition, 79% of the patients seen by the palliative care team had a confirmed code status of do not resuscitate and do not intubate.
- Conclusions: Butler Health System’s approach to development of a palliative care program has resulted in increasing utilization of palliative care services in the hospital. Having hospital administration support, community support, and understanding the individualized needs of a community has been essential for the program’s expansion.
Key words: palliative care; program development; community hospital; rural.
Since its inception, palliative care has been committed to providing specialty-level consultation services to individuals with serious illness and their loved ones. The field has focused heavily on growth and acceptance, consistently moving upstream with regards to illness trajectory, across diseases, and across demographic variables such as age (eg, pediatric quality of life programs) and race (eg, community outreach programs addressing racial disparities in hospice use). An important frontier that remains challenging for much of the field is expansion into the community setting, where resources, implicit acceptance, and patient populations may vary.
As health system leaders appreciate the positive impacts palliative medicine on patient care and care quality, barriers to implementing palliative care programs in community hospitals must be addressed in ways tailored to the unique needs of smaller organizations and their communities. The goal of this paper is to outline the approach taken to develop Butler Health System’s community-centric palliative care program, describe our program’s underlying foundation rooted in community supports, and recount steps we have taken thus far to impact patient care in our hospital, health system, and community through the program’s first year.
Community Hospital Palliative Care—The Necessity and the Challenges
Palliative care has made strides in its growth and acceptance in the last decade; yet, the distribution of that growth has been skewed. Although 67% of hospitals now report access to specialist palliative care programs, most of the 148% growth over the last decade has been actualized in larger hospitals. Ninety percent of hospitals with greater than 300 beds report palliative care service availability whereas only 56% of small hospitals were identified to have this specialty care [1].
The inequity of access is also seen in other countries. A recent Canadian study retrospectively examined access to care of 23,860 deceased patients in Nova Scotia. Although they found 40.9% of study subjects were enrolled in a palliative care program at urban, academic centers, patients in a rural setting were only a third as likely to be enrolled in a palliative care program [2]. This access gap has important effects on patient-level outcomes, as evidence has consistently demonstrated that patients in rural settings who receive palliative care have decreased unnecessary hospitalizations and less in-hospital deaths [3].
While evidence of improved outcomes is strong, important barriers stand in the way. In a 2013 study, 374 health care providers at 236 rural hospitals in 7 states were interviewed to determine barriers to providing palliative care in rural settings. Barriers identified include a lack of administrative support, access to basic palliative care training for primary care physicians, and limited relationships to hospices [4]. Additional challenges include lack of access to tertiary-level specialty clinicians, access to and misconceptions about prescription medications, transportation for patients and providers, and incorporating a patient’s community supports [5–7].
Proposed Solutions
Techniques to improve palliative care access for rural and community centers that have been previously reviewed in the literature include videoconferencing with tertiary care experts in palliative care and education through small community-level lectures [8–10]. Goals of rural and suburban palliative care programs are broadly similar to programs at academic medical centers; however, few studies have identified impact of palliative medicine on patient care in community settings. In one suburban practice, a study found that patients were more likely to die at home if they had multiple caregivers, increased length of time under palliative care, and older age upon referral [11].
The United States has few large-scale pilot programs attempting to address the palliative needs of a more suburban or rural population. Of these, the Minnesota Rural Palliative Care Initiative developed by Stratis Health is perhaps the best publicized. Stratis Health developed and led an 18-month learning collaborative from October 2008 to April 2010 through which community teams developed or improved palliative care services. Through this initiative, a community-based health care practice model was developed that took advantage of the strong interrelationships within rural communities. After 18 months, 6 out of 10 rural Minnesota communities had formal palliative care programs, and 8 to 9 out of 10 had capabilities to at least address advance directives as well as provider and community education [12]. In another initiative, the NIH established a new suburban clinic with tertiary providers specifically for resource intensive, underserved patients [13]. The clinic was established by partnering with a service that was already in place in the community. Twenty-seven patients were seen within 7 months. The most common consults were patients with numerous comorbidities and chronic pain rather than terminal diagnoses. Given the intensive need of these patients, the authors felt that a consultation service and an interdisciplinary team that included psychosocial/spiritual/social work providers offered the most efficient method of delivering advanced palliative care needs.
The research regarding both solutions to challenges and novel methods of addressing the care gap remains sparse as evidenced by the conclusions of multiple systematic reviews and meta-analyses and the inability of the Cochrane review to find papers meeting inclusion criteria regarding techniques of community support in palliative care [14,15]. There remains a need to identify practical techniques of implementing palliative care in rural and suburban settings.
The Butler Health System Experience
In August 2015, we set out to start the first hospital-based palliative care consultation service in the Butler Health System. The health system is a nonprofit, single-hospital system anchored by Butler Memorial Hospital, a 294-bed community hospital located within a rural Pennsylvania county of 186,000 residents, 35 miles north of Pittsburgh. Butler County consists of a predominantly white, non-Hispanic population with over 15% of the residents being older than 65 years of age. The median household income is $61,000 earned primarily through blue collar occupations [16]. Driven by 53 employed primary care physicians, the health system provides services for 75,000 patients at sites covering an area of 4000 square miles. The hospital provides general medical, critical, surgical and subspecialty care and behavior health services as a regional referral center for 4 surrounding rural counties, accepting 12,500 inpatient admissions annually. A hospitalist service admits the majority of oncology patients, and the intensive care unit (ICU) is an open unit, where patients are admitted to the hospitalist, primary care, or surgical service.
While no formal needs assessment was performed prior to program development, perceptions of inadequate pain control, overuse of naloxone, underutilization of hospice services, and lack of consistent quality in end-of-life care were identified. These concerns were voiced at the levels of direct patient care on the floors, and by nursing and physician hospital leadership. Prior to our program, the chief medical officer attended the national Center to Advance Palliative Care conference to better understand the field of palliative care and its impact on improving quality of care. Concurrently, our health system was expanding its inpatient capabilities (eg, advanced neurologic and cardiac services), resulting in admissions with increased disease severity and illness complexity. With the vision of improved patient care, prioritizing quality end-of-life care and symptom management, the hospital board and administration overwhelmingly supported the development of the palliative care program, philosophically and financially.
Laying a Foundation—Funding, Collaboration, and Team Building
Funding and staffing are 2 important factors when building any program. Sources of funding for palliative care programs may include hospital support, billing revenue, grants, and philanthropy. Program development was a priority for the hospital and community. To help offset costs, efforts to raise financial support focused on utilizing the health system’s annual fundraising events. Through the generosity of individuals in the community, the hospital’s annual gala event, and donations from the hospital’s auxiliary, a total of $230,000 was raised prior to program initiation. Funds budgeted through direct hospital support and fundraising were allocated towards hiring palliative care team members and community marketing projects.
The hospital’s surrounding community is fortunate to have 2 local inpatient hospice facilities, and these relationships were imperative to providing quality end-of-life care preceding our palliative care program. A formal partnership was previously established with one while the other remains an important referral facility due to its proximity to the hospital. These hospice services are encouraged to participate in our weekly palliative care interdisciplinary team meetings. Their incorporation has improved coordination, continuity, and translation of care upon patient discharge from the acute hospital setting. Additionally, the relationships have been beneficial in tracking patients’ outcomes and data collection.
The standard structure of a palliative care team described by the Joint Commission and National Consensus Panel for Palliative Care consists of a physician, registered nurse or advanced practice provider, chaplaincy, and social work. Despite this recommendation, less than 40% of surveyed hospitals met the criteria, and less than 25% have dedicated funding to cover these positions [17]. Upon inception of our palliative care program, 2.6 funded full-time equivalents (FTEs) were allocated. These positions included a physician (1.0 FTE), a physician assistant (1.0 FTE), and a part time palliative care social worker (0.6 FTE). The 2015 National Palliative Care Registry found that 3.2 funded FTEs per 10,000 admissions is the average for hospitals with 150 to 299 beds [17]. The uncertainty of the utilization and consult volume, and the limited amount of qualified palliative care trained practitioners, resulted in the palliative program starting below this mean at 2.1 funded FTEs per 10,000 admissions. All the funded positions were located on site at the hospital. The pre-existing volunteer hospital chaplain service was identified as the pastoral care component for the program.
Increased FTEs have been associated with increased palliative care service penetration and ultimately in decreased time to consult [18]. In response to increasing consult volumes, concerns for delays in time to consult, and in preparation for expansion to an outpatient service, the palliative care department acquired an additional funded physician FTE (1.0). Ultimately the service reached a total of 3.6 FTE for inpatient services during its first 12 months; proportionately this resulted in an increase to 2.9 FTE per 10,000 admissions based on the yearly admission rate of 12,500 patients.
Educational Outreach
The success of a palliative care program depends on other clinicians’ acceptance and referral to the clinical program. We took a 2-pronged approach, focusing on both hospital-based and community-based education. The hospital-based nursing education included 30-minute presentations on general overviews of palliative care, differences between palliative care and hospice, and acute symptom management at the end of life. The palliative care team presented to all medical, surgical, and intensive care units and encompassed all shifts of nursing staff. These lectures included pre- and post-tests to assess for impact and feedback. Similar educational presentations, as well as an hour-long presentation on opioids and palliative care, were available for physicians for CME opportunities. We also distributed concise palliative care referral packets to outpatient primary care offices through the health system’s marketing team. The referral packets included examples of diagnoses, clinical scenarios, and symptoms to assist in the physicians’ understanding of palliative care services. The palliative care team also met with clinic office managers to discuss the program and answer questions.
There were also educational opportunities for patients and families in our community. Taking advantage of previously developed partnerships between the hospital system and local media outlets, the palliative care team performed local radio spots to educate the community on topics including an overview of palliative care, how to request palliative care, and the difference between palliative care and hospice care. We partnered with a local hospice agency and developed a well-received bereavement seminar for patients, family members, and employees and included the topic of advanced care planning.
Data Collection
We collect data using 2 different tools: a self-maintained spreadsheet shared between our palliative care clinicians, and a collective data tool (QDACT) included in our membership with and maintained by the Global Palliative Care Quality Alliance. Data collected and tracked in our spreadsheet includes date of consult, patient age, primary and secondary diagnoses, disposition, goals of care discussions, date of death, and 30-day readmissions. Through the QDACT data monitoring program, we are tracking and analyzing quality measures including symptom assessment and management and code status conversion. The QDACT database also provides financial data specific to our institution such as cost savings based on our billing, readmission rates, and length of stay.
Results
Projections, Volumes, and Penetration
Prior to the start of our program, our chief medical office used Center to Advance Palliative Care tools to project inpatient consultation volumes at our institution. Variables that are recommended by this center to guide projections include number of hospital admissions per year, hospital occupancy, disposition to hospice, as well as generalized estimations of inpatient mortality rates. Based on our data, it was expected that our program would receive 204 new inpatient consults in our first year, and 774 follow-up visits. Our actual new inpatient consults totaled 516, with 919 follow-up visits. Palliative care penetration (percentage of annual hospital admissions seen by the palliative care team) our first year was 3.7% (Table 1). 
Consultation Demographics
The demographics of the patients seen by the palliative care team reflect that of Butler County’s Medicare fee-for-service (FFS) population (Table 2); however, differences were seen at the state and national level with regard to ethnicity (Table 2). 
Almost half of consultations (49%) were placed by the hospitalist service. Since the ICU is an open unit, critical care consults are not adequately reflected by analysis of the ordering physician alone. Analysis of consultation location revealed that 27% of inpatient consults were located within the ICU.
Patient Outcomes and Disposition
Outcomes and discharge data from the first year were collected and reviewed. Ten percent of the patients seen by palliative care died in the hospital, and 51% of patients that were seen by palliative care died within the program’s first year. Thirty-seven percent of patients discharged from the hospital utilized hospice services at home, in residential nursing facility, or at an inpatient hospice unit. The remaining 53% were discharged without hospice services to home or facility (Figure).
Hospice utilization by the health system increased during our first year. Compared to the 2014 calendar year, there were a total of 263 referrals for hospice services. During the first year of the palliative care program, which started August 2015, there were a total of 293 referrals. Of the 293 total hospice referrals, 190 (64.8%) of these referrals were for patients seen by the palliative care team.
Change of Code Status
Code status and changes in codes status data were collected. Of 462 individual patients prior to or at the time of palliative care consults, 43% were full code, 4% limited code, 8% unknown status, and 45% Do Not Resuscitate. After palliative care consult, 61% of the patients who were previously full/limited/unknown converted to do not resuscitate and do not intubate status. In total, 79% of patients seen by palliative care had a confirmed code status of Do Not Resuscitate and Do Not Intubate status after consult.
Discussion
In our first year, our palliative care program exceeded the expected number of inpatient consults, corresponding with a penetration of 3.7%. With the increase of funded FTEs, preliminary data shows that the department’s penetration continues to rise remaining consistent with the data and expectations [18]. During the second year, it is anticipated that over 600 inpatient palliative care consultations will be performed with an estimated penetration of 4%. This increasing penetration reflects the rising utilization of palliative care within our hospital. Since inception of the program, the service has expanded into an outpatient clinic 2 days per week. The palliative care clinic is staffed by a registered nurse (funded 0.6 FTE) and covered by the same physicians and physician assistant providing the inpatient services. The department acquired an unfunded but designated chaplaincy volunteer to assist with patients’ spiritual needs. We believe that the success of our program during the first year was related to multiple factors: a focus of integration and education by the palliative care department, health system administration buy-in, and identification of surrounding community needs.
In addition to patient care, our palliative care department also prioritizes “tangible” impacts to better establish our contributions to the health system. We have done this through participation on hospital committees, hospital policy revision teams, and by developing innovative solutions such as a terminal extubation protocol and order set for our ICU. The health system and its administration have recognized the importance of educating nursing and physician staff on palliative care services, and have supported these continued efforts alongside our clinical obligations.
Concurrent with administration buy-in, financial supports for our palliative care services were initially supplemented by the health system. Our department understands the importance of recognizing limitations of resources in communities and their hospitals. In efforts to minimize the department’s impact on our own health system’s financial resources, we have strived to offset our costs. We helped the hospital system meet pay-for-performance palliative care metrics set by the large local insurers resulting in financial hospital reimbursement valued at $600,000 in 2016.
The question of how the program may translate into other communities raises a major limitation: the homogeneity our population. The community surrounding the hospital is primarily Caucasian, with minimal representation of minority populations. While the patient population seen by our palliative care team is reflective of our surrounding county, it does not represent Medicare FFS beneficiaries on a national level or many other types of community hospitals across the country. Variations of ethnicity, age, diagnoses, and faith are fundamental, which highlights the importance of understanding the community in which a program is developed.
The rising trajectory of our palliative care service utilization has prompted a discussion of future endeavors for our program. Expectations for a continued shortage of hospice and palliative care physicians [19] and concerns for practitioner burnout [20] underlie our thoughtful approach to expansion of inpatient and outpatient services. At this time, potential projects include a consultation trigger system and incorporation of palliative care providers in ICU rounding, as well as possible expansion of outpatient services through implantation of an advanced practitioner into surrounding nursing homes and primary care offices.
We have found a growing utilization of our program at Butler Health System. Our first year experience has highlighted the importance of identifying community and hospital administrative champions as a foundation. Additionally, understanding the specific characteristics of one’s surrounding community may allow for improved integration and acceptance of palliative care in a community setting. Our program continues to work with the health system, community, and philanthropic organizations to expand the ever-growing need for palliative care services.
1. Dumanovsky T, Augustin R, Rogers M, et al. The growth of palliative care in U.S. hospitals: a status report. J Palliat Med 2016;19:8–15.
2. Lavergne MR, Lethbridge L, Johnston G, et al. Examining palliative care program use and place of death in rural and urban contexts: a Canadian population-based study using linked data. Rural Remote Health 2015;15:3134.
3. Seow H, Brazil K, Sussman J, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ 2014;348:g3496.
4. Fink RM, Oman KS, Youngwerth J, et al. A palliative care needs assessment of rural hospitals. J Palliat Med 2013;16:638–44.
5. Dumont S, Jacobs P, Turcotte V, et al. Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life. J Palliat Med 2015;29:908–17.
6. Kaasalainen S, Brazil K, Williams A, et al. Nurses' experiences providing palliative care to individuals living in rural communities: aspects of the physical residential setting. Rural Remote Health 2014;14:2728.
7. Ahmed N, Bestall JC, Ahmedzai SH, et al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. J Palliat Med 2004;18:525–42.
8. Ray RA, Fried O, Lindsay D. Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations. BMC Health Serv Res 2014;14:272.
9. Bakitas MA, Elk R, Astin M, et al. Systematic review of palliative care in the rural setting. Cancer Control 2015;22:450–64.
10. Akiyama M, Hirai K, Takebayashi T, et al. The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public. Support Care Cancer 2016;24: 347–56.
11. Maida V. Factors that promote success in home palliative care: a study of a large suburban palliative care practice. J Palliat Care 2002;18:282–6.
12. Ceronsky L, Shearer J, Weng K, et al. Minnesota Rural Palliative Care Initiative: building palliative care capacity in rural Minnesota. J Palliat Med 2013;16:310–3.
13. Aggarwal SK, Ghosh A, Cheng MJ, et al. Initiating pain and palliative care outpatient services for the suburban underserved in Montgomery County, Maryland: Lessons learned at the NIH Clinical Center and MobileMed. Palliat Support Care 2015;16:1–6.
14. Rainsford S, MacLeod RD, Glasgow NJ. Place of death in rural palliative care: A systematic review. J Palliat Med 2016;30:745–63.
15. Horey D, Street AF, O'Connor M, et al. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Rev 2015 Jul 20;(7):CD009500.
16. The United States Census Bureau: QuickFacts: Butler County, Pennsylvania. Accessed 10 Mar 2017 at www.census.gov/quickfacts/table/PST045216/42019,00.
17. Spetz J, Dudley N, Trupin L, et al. Few hospital palliative care programs meet national staffing recommendations. Health Aff 2016;35:1690–7.
18. Dumanovsky T, Rogers M, Spragens LH, et al. Impact of Staffing on Access to Palliative Care in U.S. Hospitals. J Palliat Med. 2015 Dec; 18(12). Pages 998-999.
19. Lupu D, American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage 2010;40:899–911.
20. Kamal AH, Bull JK, Wolf SP, et al. Prevalence and predictors of burnout among hospice and palliative care clinicians in the U.S. J Pain Symptom Manage 2016;51:690–6.
From the Division of Palliative Care, Butler Health System, Butler, PA (Drs. Stein, Reefer, Selvaggi, Ms. Doverspike); the University of Pittsburgh Medical Center, Pittsburgh, PA (Dr. Rajagopal); and the Duke Cancer Institute and Duke Fuqua School of Business, Durham, NC (Dr. Kamal).
Abstract
- Objective: To describe an approach to develop a community-centric palliative care program in a rural community health system and to review data collected over the program’s first year.
- Methods: We describe the underlying foundations of our program development including the health system’s prioritization of a palliative care program, funding opportunities, collaboration with community supports, and the importance of building a team and program that reflects a community’s needs. Data were collected through a program-maintained spreadsheet and a data monitoring system available through the Global Palliative Care Quality Alliance.
- Results: 516 new inpatient consultations were seen during the first year, for a penetration of 3.7%. The demographics of the patients who received consultation reflect that of the surrounding community. Over 50% of patients seen within the first year died, and hospice utilization at home and within facilities and inpatient hospice units increased. In addition, 79% of the patients seen by the palliative care team had a confirmed code status of do not resuscitate and do not intubate.
- Conclusions: Butler Health System’s approach to development of a palliative care program has resulted in increasing utilization of palliative care services in the hospital. Having hospital administration support, community support, and understanding the individualized needs of a community has been essential for the program’s expansion.
Key words: palliative care; program development; community hospital; rural.
Since its inception, palliative care has been committed to providing specialty-level consultation services to individuals with serious illness and their loved ones. The field has focused heavily on growth and acceptance, consistently moving upstream with regards to illness trajectory, across diseases, and across demographic variables such as age (eg, pediatric quality of life programs) and race (eg, community outreach programs addressing racial disparities in hospice use). An important frontier that remains challenging for much of the field is expansion into the community setting, where resources, implicit acceptance, and patient populations may vary.
As health system leaders appreciate the positive impacts palliative medicine on patient care and care quality, barriers to implementing palliative care programs in community hospitals must be addressed in ways tailored to the unique needs of smaller organizations and their communities. The goal of this paper is to outline the approach taken to develop Butler Health System’s community-centric palliative care program, describe our program’s underlying foundation rooted in community supports, and recount steps we have taken thus far to impact patient care in our hospital, health system, and community through the program’s first year.
Community Hospital Palliative Care—The Necessity and the Challenges
Palliative care has made strides in its growth and acceptance in the last decade; yet, the distribution of that growth has been skewed. Although 67% of hospitals now report access to specialist palliative care programs, most of the 148% growth over the last decade has been actualized in larger hospitals. Ninety percent of hospitals with greater than 300 beds report palliative care service availability whereas only 56% of small hospitals were identified to have this specialty care [1].
The inequity of access is also seen in other countries. A recent Canadian study retrospectively examined access to care of 23,860 deceased patients in Nova Scotia. Although they found 40.9% of study subjects were enrolled in a palliative care program at urban, academic centers, patients in a rural setting were only a third as likely to be enrolled in a palliative care program [2]. This access gap has important effects on patient-level outcomes, as evidence has consistently demonstrated that patients in rural settings who receive palliative care have decreased unnecessary hospitalizations and less in-hospital deaths [3].
While evidence of improved outcomes is strong, important barriers stand in the way. In a 2013 study, 374 health care providers at 236 rural hospitals in 7 states were interviewed to determine barriers to providing palliative care in rural settings. Barriers identified include a lack of administrative support, access to basic palliative care training for primary care physicians, and limited relationships to hospices [4]. Additional challenges include lack of access to tertiary-level specialty clinicians, access to and misconceptions about prescription medications, transportation for patients and providers, and incorporating a patient’s community supports [5–7].
Proposed Solutions
Techniques to improve palliative care access for rural and community centers that have been previously reviewed in the literature include videoconferencing with tertiary care experts in palliative care and education through small community-level lectures [8–10]. Goals of rural and suburban palliative care programs are broadly similar to programs at academic medical centers; however, few studies have identified impact of palliative medicine on patient care in community settings. In one suburban practice, a study found that patients were more likely to die at home if they had multiple caregivers, increased length of time under palliative care, and older age upon referral [11].
The United States has few large-scale pilot programs attempting to address the palliative needs of a more suburban or rural population. Of these, the Minnesota Rural Palliative Care Initiative developed by Stratis Health is perhaps the best publicized. Stratis Health developed and led an 18-month learning collaborative from October 2008 to April 2010 through which community teams developed or improved palliative care services. Through this initiative, a community-based health care practice model was developed that took advantage of the strong interrelationships within rural communities. After 18 months, 6 out of 10 rural Minnesota communities had formal palliative care programs, and 8 to 9 out of 10 had capabilities to at least address advance directives as well as provider and community education [12]. In another initiative, the NIH established a new suburban clinic with tertiary providers specifically for resource intensive, underserved patients [13]. The clinic was established by partnering with a service that was already in place in the community. Twenty-seven patients were seen within 7 months. The most common consults were patients with numerous comorbidities and chronic pain rather than terminal diagnoses. Given the intensive need of these patients, the authors felt that a consultation service and an interdisciplinary team that included psychosocial/spiritual/social work providers offered the most efficient method of delivering advanced palliative care needs.
The research regarding both solutions to challenges and novel methods of addressing the care gap remains sparse as evidenced by the conclusions of multiple systematic reviews and meta-analyses and the inability of the Cochrane review to find papers meeting inclusion criteria regarding techniques of community support in palliative care [14,15]. There remains a need to identify practical techniques of implementing palliative care in rural and suburban settings.
The Butler Health System Experience
In August 2015, we set out to start the first hospital-based palliative care consultation service in the Butler Health System. The health system is a nonprofit, single-hospital system anchored by Butler Memorial Hospital, a 294-bed community hospital located within a rural Pennsylvania county of 186,000 residents, 35 miles north of Pittsburgh. Butler County consists of a predominantly white, non-Hispanic population with over 15% of the residents being older than 65 years of age. The median household income is $61,000 earned primarily through blue collar occupations [16]. Driven by 53 employed primary care physicians, the health system provides services for 75,000 patients at sites covering an area of 4000 square miles. The hospital provides general medical, critical, surgical and subspecialty care and behavior health services as a regional referral center for 4 surrounding rural counties, accepting 12,500 inpatient admissions annually. A hospitalist service admits the majority of oncology patients, and the intensive care unit (ICU) is an open unit, where patients are admitted to the hospitalist, primary care, or surgical service.
While no formal needs assessment was performed prior to program development, perceptions of inadequate pain control, overuse of naloxone, underutilization of hospice services, and lack of consistent quality in end-of-life care were identified. These concerns were voiced at the levels of direct patient care on the floors, and by nursing and physician hospital leadership. Prior to our program, the chief medical officer attended the national Center to Advance Palliative Care conference to better understand the field of palliative care and its impact on improving quality of care. Concurrently, our health system was expanding its inpatient capabilities (eg, advanced neurologic and cardiac services), resulting in admissions with increased disease severity and illness complexity. With the vision of improved patient care, prioritizing quality end-of-life care and symptom management, the hospital board and administration overwhelmingly supported the development of the palliative care program, philosophically and financially.
Laying a Foundation—Funding, Collaboration, and Team Building
Funding and staffing are 2 important factors when building any program. Sources of funding for palliative care programs may include hospital support, billing revenue, grants, and philanthropy. Program development was a priority for the hospital and community. To help offset costs, efforts to raise financial support focused on utilizing the health system’s annual fundraising events. Through the generosity of individuals in the community, the hospital’s annual gala event, and donations from the hospital’s auxiliary, a total of $230,000 was raised prior to program initiation. Funds budgeted through direct hospital support and fundraising were allocated towards hiring palliative care team members and community marketing projects.
The hospital’s surrounding community is fortunate to have 2 local inpatient hospice facilities, and these relationships were imperative to providing quality end-of-life care preceding our palliative care program. A formal partnership was previously established with one while the other remains an important referral facility due to its proximity to the hospital. These hospice services are encouraged to participate in our weekly palliative care interdisciplinary team meetings. Their incorporation has improved coordination, continuity, and translation of care upon patient discharge from the acute hospital setting. Additionally, the relationships have been beneficial in tracking patients’ outcomes and data collection.
The standard structure of a palliative care team described by the Joint Commission and National Consensus Panel for Palliative Care consists of a physician, registered nurse or advanced practice provider, chaplaincy, and social work. Despite this recommendation, less than 40% of surveyed hospitals met the criteria, and less than 25% have dedicated funding to cover these positions [17]. Upon inception of our palliative care program, 2.6 funded full-time equivalents (FTEs) were allocated. These positions included a physician (1.0 FTE), a physician assistant (1.0 FTE), and a part time palliative care social worker (0.6 FTE). The 2015 National Palliative Care Registry found that 3.2 funded FTEs per 10,000 admissions is the average for hospitals with 150 to 299 beds [17]. The uncertainty of the utilization and consult volume, and the limited amount of qualified palliative care trained practitioners, resulted in the palliative program starting below this mean at 2.1 funded FTEs per 10,000 admissions. All the funded positions were located on site at the hospital. The pre-existing volunteer hospital chaplain service was identified as the pastoral care component for the program.
Increased FTEs have been associated with increased palliative care service penetration and ultimately in decreased time to consult [18]. In response to increasing consult volumes, concerns for delays in time to consult, and in preparation for expansion to an outpatient service, the palliative care department acquired an additional funded physician FTE (1.0). Ultimately the service reached a total of 3.6 FTE for inpatient services during its first 12 months; proportionately this resulted in an increase to 2.9 FTE per 10,000 admissions based on the yearly admission rate of 12,500 patients.
Educational Outreach
The success of a palliative care program depends on other clinicians’ acceptance and referral to the clinical program. We took a 2-pronged approach, focusing on both hospital-based and community-based education. The hospital-based nursing education included 30-minute presentations on general overviews of palliative care, differences between palliative care and hospice, and acute symptom management at the end of life. The palliative care team presented to all medical, surgical, and intensive care units and encompassed all shifts of nursing staff. These lectures included pre- and post-tests to assess for impact and feedback. Similar educational presentations, as well as an hour-long presentation on opioids and palliative care, were available for physicians for CME opportunities. We also distributed concise palliative care referral packets to outpatient primary care offices through the health system’s marketing team. The referral packets included examples of diagnoses, clinical scenarios, and symptoms to assist in the physicians’ understanding of palliative care services. The palliative care team also met with clinic office managers to discuss the program and answer questions.
There were also educational opportunities for patients and families in our community. Taking advantage of previously developed partnerships between the hospital system and local media outlets, the palliative care team performed local radio spots to educate the community on topics including an overview of palliative care, how to request palliative care, and the difference between palliative care and hospice care. We partnered with a local hospice agency and developed a well-received bereavement seminar for patients, family members, and employees and included the topic of advanced care planning.
Data Collection
We collect data using 2 different tools: a self-maintained spreadsheet shared between our palliative care clinicians, and a collective data tool (QDACT) included in our membership with and maintained by the Global Palliative Care Quality Alliance. Data collected and tracked in our spreadsheet includes date of consult, patient age, primary and secondary diagnoses, disposition, goals of care discussions, date of death, and 30-day readmissions. Through the QDACT data monitoring program, we are tracking and analyzing quality measures including symptom assessment and management and code status conversion. The QDACT database also provides financial data specific to our institution such as cost savings based on our billing, readmission rates, and length of stay.
Results
Projections, Volumes, and Penetration
Prior to the start of our program, our chief medical office used Center to Advance Palliative Care tools to project inpatient consultation volumes at our institution. Variables that are recommended by this center to guide projections include number of hospital admissions per year, hospital occupancy, disposition to hospice, as well as generalized estimations of inpatient mortality rates. Based on our data, it was expected that our program would receive 204 new inpatient consults in our first year, and 774 follow-up visits. Our actual new inpatient consults totaled 516, with 919 follow-up visits. Palliative care penetration (percentage of annual hospital admissions seen by the palliative care team) our first year was 3.7% (Table 1).
Consultation Demographics
The demographics of the patients seen by the palliative care team reflect that of Butler County’s Medicare fee-for-service (FFS) population (Table 2); however, differences were seen at the state and national level with regard to ethnicity (Table 2).
Almost half of consultations (49%) were placed by the hospitalist service. Since the ICU is an open unit, critical care consults are not adequately reflected by analysis of the ordering physician alone. Analysis of consultation location revealed that 27% of inpatient consults were located within the ICU.
Patient Outcomes and Disposition
Outcomes and discharge data from the first year were collected and reviewed. Ten percent of the patients seen by palliative care died in the hospital, and 51% of patients that were seen by palliative care died within the program’s first year. Thirty-seven percent of patients discharged from the hospital utilized hospice services at home, in residential nursing facility, or at an inpatient hospice unit. The remaining 53% were discharged without hospice services to home or facility (Figure).
Hospice utilization by the health system increased during our first year. Compared to the 2014 calendar year, there were a total of 263 referrals for hospice services. During the first year of the palliative care program, which started August 2015, there were a total of 293 referrals. Of the 293 total hospice referrals, 190 (64.8%) of these referrals were for patients seen by the palliative care team.
Change of Code Status
Code status and changes in codes status data were collected. Of 462 individual patients prior to or at the time of palliative care consults, 43% were full code, 4% limited code, 8% unknown status, and 45% Do Not Resuscitate. After palliative care consult, 61% of the patients who were previously full/limited/unknown converted to do not resuscitate and do not intubate status. In total, 79% of patients seen by palliative care had a confirmed code status of Do Not Resuscitate and Do Not Intubate status after consult.
Discussion
In our first year, our palliative care program exceeded the expected number of inpatient consults, corresponding with a penetration of 3.7%. With the increase of funded FTEs, preliminary data shows that the department’s penetration continues to rise remaining consistent with the data and expectations [18]. During the second year, it is anticipated that over 600 inpatient palliative care consultations will be performed with an estimated penetration of 4%. This increasing penetration reflects the rising utilization of palliative care within our hospital. Since inception of the program, the service has expanded into an outpatient clinic 2 days per week. The palliative care clinic is staffed by a registered nurse (funded 0.6 FTE) and covered by the same physicians and physician assistant providing the inpatient services. The department acquired an unfunded but designated chaplaincy volunteer to assist with patients’ spiritual needs. We believe that the success of our program during the first year was related to multiple factors: a focus of integration and education by the palliative care department, health system administration buy-in, and identification of surrounding community needs.
In addition to patient care, our palliative care department also prioritizes “tangible” impacts to better establish our contributions to the health system. We have done this through participation on hospital committees, hospital policy revision teams, and by developing innovative solutions such as a terminal extubation protocol and order set for our ICU. The health system and its administration have recognized the importance of educating nursing and physician staff on palliative care services, and have supported these continued efforts alongside our clinical obligations.
Concurrent with administration buy-in, financial supports for our palliative care services were initially supplemented by the health system. Our department understands the importance of recognizing limitations of resources in communities and their hospitals. In efforts to minimize the department’s impact on our own health system’s financial resources, we have strived to offset our costs. We helped the hospital system meet pay-for-performance palliative care metrics set by the large local insurers resulting in financial hospital reimbursement valued at $600,000 in 2016.
The question of how the program may translate into other communities raises a major limitation: the homogeneity our population. The community surrounding the hospital is primarily Caucasian, with minimal representation of minority populations. While the patient population seen by our palliative care team is reflective of our surrounding county, it does not represent Medicare FFS beneficiaries on a national level or many other types of community hospitals across the country. Variations of ethnicity, age, diagnoses, and faith are fundamental, which highlights the importance of understanding the community in which a program is developed.
The rising trajectory of our palliative care service utilization has prompted a discussion of future endeavors for our program. Expectations for a continued shortage of hospice and palliative care physicians [19] and concerns for practitioner burnout [20] underlie our thoughtful approach to expansion of inpatient and outpatient services. At this time, potential projects include a consultation trigger system and incorporation of palliative care providers in ICU rounding, as well as possible expansion of outpatient services through implantation of an advanced practitioner into surrounding nursing homes and primary care offices.
We have found a growing utilization of our program at Butler Health System. Our first year experience has highlighted the importance of identifying community and hospital administrative champions as a foundation. Additionally, understanding the specific characteristics of one’s surrounding community may allow for improved integration and acceptance of palliative care in a community setting. Our program continues to work with the health system, community, and philanthropic organizations to expand the ever-growing need for palliative care services.
From the Division of Palliative Care, Butler Health System, Butler, PA (Drs. Stein, Reefer, Selvaggi, Ms. Doverspike); the University of Pittsburgh Medical Center, Pittsburgh, PA (Dr. Rajagopal); and the Duke Cancer Institute and Duke Fuqua School of Business, Durham, NC (Dr. Kamal).
Abstract
- Objective: To describe an approach to develop a community-centric palliative care program in a rural community health system and to review data collected over the program’s first year.
- Methods: We describe the underlying foundations of our program development including the health system’s prioritization of a palliative care program, funding opportunities, collaboration with community supports, and the importance of building a team and program that reflects a community’s needs. Data were collected through a program-maintained spreadsheet and a data monitoring system available through the Global Palliative Care Quality Alliance.
- Results: 516 new inpatient consultations were seen during the first year, for a penetration of 3.7%. The demographics of the patients who received consultation reflect that of the surrounding community. Over 50% of patients seen within the first year died, and hospice utilization at home and within facilities and inpatient hospice units increased. In addition, 79% of the patients seen by the palliative care team had a confirmed code status of do not resuscitate and do not intubate.
- Conclusions: Butler Health System’s approach to development of a palliative care program has resulted in increasing utilization of palliative care services in the hospital. Having hospital administration support, community support, and understanding the individualized needs of a community has been essential for the program’s expansion.
Key words: palliative care; program development; community hospital; rural.
Since its inception, palliative care has been committed to providing specialty-level consultation services to individuals with serious illness and their loved ones. The field has focused heavily on growth and acceptance, consistently moving upstream with regards to illness trajectory, across diseases, and across demographic variables such as age (eg, pediatric quality of life programs) and race (eg, community outreach programs addressing racial disparities in hospice use). An important frontier that remains challenging for much of the field is expansion into the community setting, where resources, implicit acceptance, and patient populations may vary.
As health system leaders appreciate the positive impacts palliative medicine on patient care and care quality, barriers to implementing palliative care programs in community hospitals must be addressed in ways tailored to the unique needs of smaller organizations and their communities. The goal of this paper is to outline the approach taken to develop Butler Health System’s community-centric palliative care program, describe our program’s underlying foundation rooted in community supports, and recount steps we have taken thus far to impact patient care in our hospital, health system, and community through the program’s first year.
Community Hospital Palliative Care—The Necessity and the Challenges
Palliative care has made strides in its growth and acceptance in the last decade; yet, the distribution of that growth has been skewed. Although 67% of hospitals now report access to specialist palliative care programs, most of the 148% growth over the last decade has been actualized in larger hospitals. Ninety percent of hospitals with greater than 300 beds report palliative care service availability whereas only 56% of small hospitals were identified to have this specialty care [1].
The inequity of access is also seen in other countries. A recent Canadian study retrospectively examined access to care of 23,860 deceased patients in Nova Scotia. Although they found 40.9% of study subjects were enrolled in a palliative care program at urban, academic centers, patients in a rural setting were only a third as likely to be enrolled in a palliative care program [2]. This access gap has important effects on patient-level outcomes, as evidence has consistently demonstrated that patients in rural settings who receive palliative care have decreased unnecessary hospitalizations and less in-hospital deaths [3].
While evidence of improved outcomes is strong, important barriers stand in the way. In a 2013 study, 374 health care providers at 236 rural hospitals in 7 states were interviewed to determine barriers to providing palliative care in rural settings. Barriers identified include a lack of administrative support, access to basic palliative care training for primary care physicians, and limited relationships to hospices [4]. Additional challenges include lack of access to tertiary-level specialty clinicians, access to and misconceptions about prescription medications, transportation for patients and providers, and incorporating a patient’s community supports [5–7].
Proposed Solutions
Techniques to improve palliative care access for rural and community centers that have been previously reviewed in the literature include videoconferencing with tertiary care experts in palliative care and education through small community-level lectures [8–10]. Goals of rural and suburban palliative care programs are broadly similar to programs at academic medical centers; however, few studies have identified impact of palliative medicine on patient care in community settings. In one suburban practice, a study found that patients were more likely to die at home if they had multiple caregivers, increased length of time under palliative care, and older age upon referral [11].
The United States has few large-scale pilot programs attempting to address the palliative needs of a more suburban or rural population. Of these, the Minnesota Rural Palliative Care Initiative developed by Stratis Health is perhaps the best publicized. Stratis Health developed and led an 18-month learning collaborative from October 2008 to April 2010 through which community teams developed or improved palliative care services. Through this initiative, a community-based health care practice model was developed that took advantage of the strong interrelationships within rural communities. After 18 months, 6 out of 10 rural Minnesota communities had formal palliative care programs, and 8 to 9 out of 10 had capabilities to at least address advance directives as well as provider and community education [12]. In another initiative, the NIH established a new suburban clinic with tertiary providers specifically for resource intensive, underserved patients [13]. The clinic was established by partnering with a service that was already in place in the community. Twenty-seven patients were seen within 7 months. The most common consults were patients with numerous comorbidities and chronic pain rather than terminal diagnoses. Given the intensive need of these patients, the authors felt that a consultation service and an interdisciplinary team that included psychosocial/spiritual/social work providers offered the most efficient method of delivering advanced palliative care needs.
The research regarding both solutions to challenges and novel methods of addressing the care gap remains sparse as evidenced by the conclusions of multiple systematic reviews and meta-analyses and the inability of the Cochrane review to find papers meeting inclusion criteria regarding techniques of community support in palliative care [14,15]. There remains a need to identify practical techniques of implementing palliative care in rural and suburban settings.
The Butler Health System Experience
In August 2015, we set out to start the first hospital-based palliative care consultation service in the Butler Health System. The health system is a nonprofit, single-hospital system anchored by Butler Memorial Hospital, a 294-bed community hospital located within a rural Pennsylvania county of 186,000 residents, 35 miles north of Pittsburgh. Butler County consists of a predominantly white, non-Hispanic population with over 15% of the residents being older than 65 years of age. The median household income is $61,000 earned primarily through blue collar occupations [16]. Driven by 53 employed primary care physicians, the health system provides services for 75,000 patients at sites covering an area of 4000 square miles. The hospital provides general medical, critical, surgical and subspecialty care and behavior health services as a regional referral center for 4 surrounding rural counties, accepting 12,500 inpatient admissions annually. A hospitalist service admits the majority of oncology patients, and the intensive care unit (ICU) is an open unit, where patients are admitted to the hospitalist, primary care, or surgical service.
While no formal needs assessment was performed prior to program development, perceptions of inadequate pain control, overuse of naloxone, underutilization of hospice services, and lack of consistent quality in end-of-life care were identified. These concerns were voiced at the levels of direct patient care on the floors, and by nursing and physician hospital leadership. Prior to our program, the chief medical officer attended the national Center to Advance Palliative Care conference to better understand the field of palliative care and its impact on improving quality of care. Concurrently, our health system was expanding its inpatient capabilities (eg, advanced neurologic and cardiac services), resulting in admissions with increased disease severity and illness complexity. With the vision of improved patient care, prioritizing quality end-of-life care and symptom management, the hospital board and administration overwhelmingly supported the development of the palliative care program, philosophically and financially.
Laying a Foundation—Funding, Collaboration, and Team Building
Funding and staffing are 2 important factors when building any program. Sources of funding for palliative care programs may include hospital support, billing revenue, grants, and philanthropy. Program development was a priority for the hospital and community. To help offset costs, efforts to raise financial support focused on utilizing the health system’s annual fundraising events. Through the generosity of individuals in the community, the hospital’s annual gala event, and donations from the hospital’s auxiliary, a total of $230,000 was raised prior to program initiation. Funds budgeted through direct hospital support and fundraising were allocated towards hiring palliative care team members and community marketing projects.
The hospital’s surrounding community is fortunate to have 2 local inpatient hospice facilities, and these relationships were imperative to providing quality end-of-life care preceding our palliative care program. A formal partnership was previously established with one while the other remains an important referral facility due to its proximity to the hospital. These hospice services are encouraged to participate in our weekly palliative care interdisciplinary team meetings. Their incorporation has improved coordination, continuity, and translation of care upon patient discharge from the acute hospital setting. Additionally, the relationships have been beneficial in tracking patients’ outcomes and data collection.
The standard structure of a palliative care team described by the Joint Commission and National Consensus Panel for Palliative Care consists of a physician, registered nurse or advanced practice provider, chaplaincy, and social work. Despite this recommendation, less than 40% of surveyed hospitals met the criteria, and less than 25% have dedicated funding to cover these positions [17]. Upon inception of our palliative care program, 2.6 funded full-time equivalents (FTEs) were allocated. These positions included a physician (1.0 FTE), a physician assistant (1.0 FTE), and a part time palliative care social worker (0.6 FTE). The 2015 National Palliative Care Registry found that 3.2 funded FTEs per 10,000 admissions is the average for hospitals with 150 to 299 beds [17]. The uncertainty of the utilization and consult volume, and the limited amount of qualified palliative care trained practitioners, resulted in the palliative program starting below this mean at 2.1 funded FTEs per 10,000 admissions. All the funded positions were located on site at the hospital. The pre-existing volunteer hospital chaplain service was identified as the pastoral care component for the program.
Increased FTEs have been associated with increased palliative care service penetration and ultimately in decreased time to consult [18]. In response to increasing consult volumes, concerns for delays in time to consult, and in preparation for expansion to an outpatient service, the palliative care department acquired an additional funded physician FTE (1.0). Ultimately the service reached a total of 3.6 FTE for inpatient services during its first 12 months; proportionately this resulted in an increase to 2.9 FTE per 10,000 admissions based on the yearly admission rate of 12,500 patients.
Educational Outreach
The success of a palliative care program depends on other clinicians’ acceptance and referral to the clinical program. We took a 2-pronged approach, focusing on both hospital-based and community-based education. The hospital-based nursing education included 30-minute presentations on general overviews of palliative care, differences between palliative care and hospice, and acute symptom management at the end of life. The palliative care team presented to all medical, surgical, and intensive care units and encompassed all shifts of nursing staff. These lectures included pre- and post-tests to assess for impact and feedback. Similar educational presentations, as well as an hour-long presentation on opioids and palliative care, were available for physicians for CME opportunities. We also distributed concise palliative care referral packets to outpatient primary care offices through the health system’s marketing team. The referral packets included examples of diagnoses, clinical scenarios, and symptoms to assist in the physicians’ understanding of palliative care services. The palliative care team also met with clinic office managers to discuss the program and answer questions.
There were also educational opportunities for patients and families in our community. Taking advantage of previously developed partnerships between the hospital system and local media outlets, the palliative care team performed local radio spots to educate the community on topics including an overview of palliative care, how to request palliative care, and the difference between palliative care and hospice care. We partnered with a local hospice agency and developed a well-received bereavement seminar for patients, family members, and employees and included the topic of advanced care planning.
Data Collection
We collect data using 2 different tools: a self-maintained spreadsheet shared between our palliative care clinicians, and a collective data tool (QDACT) included in our membership with and maintained by the Global Palliative Care Quality Alliance. Data collected and tracked in our spreadsheet includes date of consult, patient age, primary and secondary diagnoses, disposition, goals of care discussions, date of death, and 30-day readmissions. Through the QDACT data monitoring program, we are tracking and analyzing quality measures including symptom assessment and management and code status conversion. The QDACT database also provides financial data specific to our institution such as cost savings based on our billing, readmission rates, and length of stay.
Results
Projections, Volumes, and Penetration
Prior to the start of our program, our chief medical office used Center to Advance Palliative Care tools to project inpatient consultation volumes at our institution. Variables that are recommended by this center to guide projections include number of hospital admissions per year, hospital occupancy, disposition to hospice, as well as generalized estimations of inpatient mortality rates. Based on our data, it was expected that our program would receive 204 new inpatient consults in our first year, and 774 follow-up visits. Our actual new inpatient consults totaled 516, with 919 follow-up visits. Palliative care penetration (percentage of annual hospital admissions seen by the palliative care team) our first year was 3.7% (Table 1).
Consultation Demographics
The demographics of the patients seen by the palliative care team reflect that of Butler County’s Medicare fee-for-service (FFS) population (Table 2); however, differences were seen at the state and national level with regard to ethnicity (Table 2).
Almost half of consultations (49%) were placed by the hospitalist service. Since the ICU is an open unit, critical care consults are not adequately reflected by analysis of the ordering physician alone. Analysis of consultation location revealed that 27% of inpatient consults were located within the ICU.
Patient Outcomes and Disposition
Outcomes and discharge data from the first year were collected and reviewed. Ten percent of the patients seen by palliative care died in the hospital, and 51% of patients that were seen by palliative care died within the program’s first year. Thirty-seven percent of patients discharged from the hospital utilized hospice services at home, in residential nursing facility, or at an inpatient hospice unit. The remaining 53% were discharged without hospice services to home or facility (Figure).
Hospice utilization by the health system increased during our first year. Compared to the 2014 calendar year, there were a total of 263 referrals for hospice services. During the first year of the palliative care program, which started August 2015, there were a total of 293 referrals. Of the 293 total hospice referrals, 190 (64.8%) of these referrals were for patients seen by the palliative care team.
Change of Code Status
Code status and changes in codes status data were collected. Of 462 individual patients prior to or at the time of palliative care consults, 43% were full code, 4% limited code, 8% unknown status, and 45% Do Not Resuscitate. After palliative care consult, 61% of the patients who were previously full/limited/unknown converted to do not resuscitate and do not intubate status. In total, 79% of patients seen by palliative care had a confirmed code status of Do Not Resuscitate and Do Not Intubate status after consult.
Discussion
In our first year, our palliative care program exceeded the expected number of inpatient consults, corresponding with a penetration of 3.7%. With the increase of funded FTEs, preliminary data shows that the department’s penetration continues to rise remaining consistent with the data and expectations [18]. During the second year, it is anticipated that over 600 inpatient palliative care consultations will be performed with an estimated penetration of 4%. This increasing penetration reflects the rising utilization of palliative care within our hospital. Since inception of the program, the service has expanded into an outpatient clinic 2 days per week. The palliative care clinic is staffed by a registered nurse (funded 0.6 FTE) and covered by the same physicians and physician assistant providing the inpatient services. The department acquired an unfunded but designated chaplaincy volunteer to assist with patients’ spiritual needs. We believe that the success of our program during the first year was related to multiple factors: a focus of integration and education by the palliative care department, health system administration buy-in, and identification of surrounding community needs.
In addition to patient care, our palliative care department also prioritizes “tangible” impacts to better establish our contributions to the health system. We have done this through participation on hospital committees, hospital policy revision teams, and by developing innovative solutions such as a terminal extubation protocol and order set for our ICU. The health system and its administration have recognized the importance of educating nursing and physician staff on palliative care services, and have supported these continued efforts alongside our clinical obligations.
Concurrent with administration buy-in, financial supports for our palliative care services were initially supplemented by the health system. Our department understands the importance of recognizing limitations of resources in communities and their hospitals. In efforts to minimize the department’s impact on our own health system’s financial resources, we have strived to offset our costs. We helped the hospital system meet pay-for-performance palliative care metrics set by the large local insurers resulting in financial hospital reimbursement valued at $600,000 in 2016.
The question of how the program may translate into other communities raises a major limitation: the homogeneity our population. The community surrounding the hospital is primarily Caucasian, with minimal representation of minority populations. While the patient population seen by our palliative care team is reflective of our surrounding county, it does not represent Medicare FFS beneficiaries on a national level or many other types of community hospitals across the country. Variations of ethnicity, age, diagnoses, and faith are fundamental, which highlights the importance of understanding the community in which a program is developed.
The rising trajectory of our palliative care service utilization has prompted a discussion of future endeavors for our program. Expectations for a continued shortage of hospice and palliative care physicians [19] and concerns for practitioner burnout [20] underlie our thoughtful approach to expansion of inpatient and outpatient services. At this time, potential projects include a consultation trigger system and incorporation of palliative care providers in ICU rounding, as well as possible expansion of outpatient services through implantation of an advanced practitioner into surrounding nursing homes and primary care offices.
We have found a growing utilization of our program at Butler Health System. Our first year experience has highlighted the importance of identifying community and hospital administrative champions as a foundation. Additionally, understanding the specific characteristics of one’s surrounding community may allow for improved integration and acceptance of palliative care in a community setting. Our program continues to work with the health system, community, and philanthropic organizations to expand the ever-growing need for palliative care services.
1. Dumanovsky T, Augustin R, Rogers M, et al. The growth of palliative care in U.S. hospitals: a status report. J Palliat Med 2016;19:8–15.
2. Lavergne MR, Lethbridge L, Johnston G, et al. Examining palliative care program use and place of death in rural and urban contexts: a Canadian population-based study using linked data. Rural Remote Health 2015;15:3134.
3. Seow H, Brazil K, Sussman J, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ 2014;348:g3496.
4. Fink RM, Oman KS, Youngwerth J, et al. A palliative care needs assessment of rural hospitals. J Palliat Med 2013;16:638–44.
5. Dumont S, Jacobs P, Turcotte V, et al. Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life. J Palliat Med 2015;29:908–17.
6. Kaasalainen S, Brazil K, Williams A, et al. Nurses' experiences providing palliative care to individuals living in rural communities: aspects of the physical residential setting. Rural Remote Health 2014;14:2728.
7. Ahmed N, Bestall JC, Ahmedzai SH, et al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. J Palliat Med 2004;18:525–42.
8. Ray RA, Fried O, Lindsay D. Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations. BMC Health Serv Res 2014;14:272.
9. Bakitas MA, Elk R, Astin M, et al. Systematic review of palliative care in the rural setting. Cancer Control 2015;22:450–64.
10. Akiyama M, Hirai K, Takebayashi T, et al. The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public. Support Care Cancer 2016;24: 347–56.
11. Maida V. Factors that promote success in home palliative care: a study of a large suburban palliative care practice. J Palliat Care 2002;18:282–6.
12. Ceronsky L, Shearer J, Weng K, et al. Minnesota Rural Palliative Care Initiative: building palliative care capacity in rural Minnesota. J Palliat Med 2013;16:310–3.
13. Aggarwal SK, Ghosh A, Cheng MJ, et al. Initiating pain and palliative care outpatient services for the suburban underserved in Montgomery County, Maryland: Lessons learned at the NIH Clinical Center and MobileMed. Palliat Support Care 2015;16:1–6.
14. Rainsford S, MacLeod RD, Glasgow NJ. Place of death in rural palliative care: A systematic review. J Palliat Med 2016;30:745–63.
15. Horey D, Street AF, O'Connor M, et al. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Rev 2015 Jul 20;(7):CD009500.
16. The United States Census Bureau: QuickFacts: Butler County, Pennsylvania. Accessed 10 Mar 2017 at www.census.gov/quickfacts/table/PST045216/42019,00.
17. Spetz J, Dudley N, Trupin L, et al. Few hospital palliative care programs meet national staffing recommendations. Health Aff 2016;35:1690–7.
18. Dumanovsky T, Rogers M, Spragens LH, et al. Impact of Staffing on Access to Palliative Care in U.S. Hospitals. J Palliat Med. 2015 Dec; 18(12). Pages 998-999.
19. Lupu D, American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage 2010;40:899–911.
20. Kamal AH, Bull JK, Wolf SP, et al. Prevalence and predictors of burnout among hospice and palliative care clinicians in the U.S. J Pain Symptom Manage 2016;51:690–6.
1. Dumanovsky T, Augustin R, Rogers M, et al. The growth of palliative care in U.S. hospitals: a status report. J Palliat Med 2016;19:8–15.
2. Lavergne MR, Lethbridge L, Johnston G, et al. Examining palliative care program use and place of death in rural and urban contexts: a Canadian population-based study using linked data. Rural Remote Health 2015;15:3134.
3. Seow H, Brazil K, Sussman J, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ 2014;348:g3496.
4. Fink RM, Oman KS, Youngwerth J, et al. A palliative care needs assessment of rural hospitals. J Palliat Med 2013;16:638–44.
5. Dumont S, Jacobs P, Turcotte V, et al. Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life. J Palliat Med 2015;29:908–17.
6. Kaasalainen S, Brazil K, Williams A, et al. Nurses' experiences providing palliative care to individuals living in rural communities: aspects of the physical residential setting. Rural Remote Health 2014;14:2728.
7. Ahmed N, Bestall JC, Ahmedzai SH, et al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. J Palliat Med 2004;18:525–42.
8. Ray RA, Fried O, Lindsay D. Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations. BMC Health Serv Res 2014;14:272.
9. Bakitas MA, Elk R, Astin M, et al. Systematic review of palliative care in the rural setting. Cancer Control 2015;22:450–64.
10. Akiyama M, Hirai K, Takebayashi T, et al. The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public. Support Care Cancer 2016;24: 347–56.
11. Maida V. Factors that promote success in home palliative care: a study of a large suburban palliative care practice. J Palliat Care 2002;18:282–6.
12. Ceronsky L, Shearer J, Weng K, et al. Minnesota Rural Palliative Care Initiative: building palliative care capacity in rural Minnesota. J Palliat Med 2013;16:310–3.
13. Aggarwal SK, Ghosh A, Cheng MJ, et al. Initiating pain and palliative care outpatient services for the suburban underserved in Montgomery County, Maryland: Lessons learned at the NIH Clinical Center and MobileMed. Palliat Support Care 2015;16:1–6.
14. Rainsford S, MacLeod RD, Glasgow NJ. Place of death in rural palliative care: A systematic review. J Palliat Med 2016;30:745–63.
15. Horey D, Street AF, O'Connor M, et al. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Rev 2015 Jul 20;(7):CD009500.
16. The United States Census Bureau: QuickFacts: Butler County, Pennsylvania. Accessed 10 Mar 2017 at www.census.gov/quickfacts/table/PST045216/42019,00.
17. Spetz J, Dudley N, Trupin L, et al. Few hospital palliative care programs meet national staffing recommendations. Health Aff 2016;35:1690–7.
18. Dumanovsky T, Rogers M, Spragens LH, et al. Impact of Staffing on Access to Palliative Care in U.S. Hospitals. J Palliat Med. 2015 Dec; 18(12). Pages 998-999.
19. Lupu D, American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage 2010;40:899–911.
20. Kamal AH, Bull JK, Wolf SP, et al. Prevalence and predictors of burnout among hospice and palliative care clinicians in the U.S. J Pain Symptom Manage 2016;51:690–6.
Advance care planning benefit presents challenges
When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.
In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.
Staring in 2016, the Centers for Medicare & Medicaid Services began reimbursing physicians for advance care planning discussions with the approval of two new codes: 99497 and 99498. The codes pay about $86 for the first 30-minutes of a face-to-face conversation with a patient, family member, and/or surrogate and about $75 for additional sessions. Services can be furnished in both inpatient and ambulatory settings, and payment is not limited to particular physician specialties.
Dr. Sweet said that she uses these codes a couple times a week when patients visit for reasons such as routine hypertension or diabetes exams or annual Medicare wellness visits. To broach the subject, Dr. Sweet said it helps to have literature about advance care planning in the room that patients can review.
“It’s just a matter of bringing it up,” she said. “Considering some of the other codes, the advance care planning code is really pretty simple.”
However, doctors like Dr. Sweet appear to be in the minority when it comes to providing this service. Of the nearly 57 million beneficiaries enrolled in Medicare at the end of 2016, only about 1% received advance care planning sessions, according to analysis of Medicare data posted by Kaiser Health News. Nationwide, health providers submitted about $93 million in charges, of which $43 million was paid by Medicare.
Challenges deter conversations
During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.
Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.
“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.
“There are two pieces required to take advantage of the advance care planning benefit code: having the conversation and documenting it,” Dr. Fahy noted. “What I write at the end of a resident note or an advanced practice provider note is going to be more focused on the counseling I had with the patient about their condition, the evaluation, and what the treatment plan is going to be. For surgeons to utilize the advance care planning codes, they have to have knowledge of the code, which many do not; they must know the requirements for documenting the conversation; and they have to have the time needed to have the conversation while also addressing all of the surgery-specific issues that need to be covered during the visit. There are a number of hurdles to overcome.”
Danielle B. Scheurer, MD, a hospitalist and chief quality officer at the Medical University of South Carolina, Charleston, said that she, too, has not used advance care planning codes. The reimbursement tool is a positive step forward, she said, but so far, it’s not an easy insert into a hospitalist’s practice.
“It’s not top of mind as far as a billing practice,” she said. “It’s not built into the typical work flow. Obviously, it’s not every patient, it’s not everyday, so you have to remember to put it into your work flow. That’s probably the biggest barrier for most hospitalists: either not knowing about it at all or not yet figuring out how to weave it into what they already do.”
Overcoming hurdles through experience
Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.
Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.
At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.
“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”
“Most of my Medicare patients are folks that have four to five chronic medical conditions, and for them to make a 30-minute visit to the office and not talk about any of those conditions but to talk about home safety and advance directives and fall prevention, it’s hard for them to understand that,” he said.
Dr. Newman stresses that while the billing approach takes time to learn, the codes can be weaved into regular practice with some preparation and planning. At her practice, she primarily uses the codes for patients with challenging changes in their health status, sometimes setting up meetings in advance and, other times, conducting a spur-of-the-moment conversation.
“It’s a wonderful benefit,” she said. “I’m not surprised it’s taking awhile to take hold. The reason is you have to prepare for these visits. It takes preparation, including a chart review.”
A common misconception is that the visit must be scheduled separately and cannot be added to another visit, she said. Doctors can bill the advance care planning codes on the same day as an evaluation and management service. For instance, if a patient is accompanied by a family member and seen for routine follow-up, the physician can discuss the medical conditions first and later have a discussion about advance care planning. When billing, the physician can then use an evaluation and management code for the part of the visit related to the patient’s medical conditions and also bill for the advance care planning discussion using the new Medicare codes, Dr. Newman said.
“You’re allowed to use a modifier to attach to it to get paid for both on the same day,” she said. She suggested checking local Medicare policy for the use of the appropriate modifier, usually 26. “One thing that’s important to understand is there’s a lot of short discussions about advanced care planning that doesn’t fit the code. So if a patient wants to have a 5-minute conversation – that happens a lot – these will not be billable or counted under this new benefit. Fifteen minutes is the least amount of time that qualifies for 99497.”
Dr. Sweet said that she expects greater use of the codes as more doctors become aware of how they can be used.
“Once people use it a time or two, they will use it a lot more,” Dr. Sweet said. “It takes time to change, and it takes time to make time to do the things we need to do. But especially, as we move into high-value care, something like this hopefully, [doctors] will embrace.”
[email protected]
On Twitter @legal_med
When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.
In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.
Staring in 2016, the Centers for Medicare & Medicaid Services began reimbursing physicians for advance care planning discussions with the approval of two new codes: 99497 and 99498. The codes pay about $86 for the first 30-minutes of a face-to-face conversation with a patient, family member, and/or surrogate and about $75 for additional sessions. Services can be furnished in both inpatient and ambulatory settings, and payment is not limited to particular physician specialties.
Dr. Sweet said that she uses these codes a couple times a week when patients visit for reasons such as routine hypertension or diabetes exams or annual Medicare wellness visits. To broach the subject, Dr. Sweet said it helps to have literature about advance care planning in the room that patients can review.
“It’s just a matter of bringing it up,” she said. “Considering some of the other codes, the advance care planning code is really pretty simple.”
However, doctors like Dr. Sweet appear to be in the minority when it comes to providing this service. Of the nearly 57 million beneficiaries enrolled in Medicare at the end of 2016, only about 1% received advance care planning sessions, according to analysis of Medicare data posted by Kaiser Health News. Nationwide, health providers submitted about $93 million in charges, of which $43 million was paid by Medicare.
Challenges deter conversations
During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.
Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.
“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.
“There are two pieces required to take advantage of the advance care planning benefit code: having the conversation and documenting it,” Dr. Fahy noted. “What I write at the end of a resident note or an advanced practice provider note is going to be more focused on the counseling I had with the patient about their condition, the evaluation, and what the treatment plan is going to be. For surgeons to utilize the advance care planning codes, they have to have knowledge of the code, which many do not; they must know the requirements for documenting the conversation; and they have to have the time needed to have the conversation while also addressing all of the surgery-specific issues that need to be covered during the visit. There are a number of hurdles to overcome.”
Danielle B. Scheurer, MD, a hospitalist and chief quality officer at the Medical University of South Carolina, Charleston, said that she, too, has not used advance care planning codes. The reimbursement tool is a positive step forward, she said, but so far, it’s not an easy insert into a hospitalist’s practice.
“It’s not top of mind as far as a billing practice,” she said. “It’s not built into the typical work flow. Obviously, it’s not every patient, it’s not everyday, so you have to remember to put it into your work flow. That’s probably the biggest barrier for most hospitalists: either not knowing about it at all or not yet figuring out how to weave it into what they already do.”
Overcoming hurdles through experience
Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.
Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.
At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.
“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”
“Most of my Medicare patients are folks that have four to five chronic medical conditions, and for them to make a 30-minute visit to the office and not talk about any of those conditions but to talk about home safety and advance directives and fall prevention, it’s hard for them to understand that,” he said.
Dr. Newman stresses that while the billing approach takes time to learn, the codes can be weaved into regular practice with some preparation and planning. At her practice, she primarily uses the codes for patients with challenging changes in their health status, sometimes setting up meetings in advance and, other times, conducting a spur-of-the-moment conversation.
“It’s a wonderful benefit,” she said. “I’m not surprised it’s taking awhile to take hold. The reason is you have to prepare for these visits. It takes preparation, including a chart review.”
A common misconception is that the visit must be scheduled separately and cannot be added to another visit, she said. Doctors can bill the advance care planning codes on the same day as an evaluation and management service. For instance, if a patient is accompanied by a family member and seen for routine follow-up, the physician can discuss the medical conditions first and later have a discussion about advance care planning. When billing, the physician can then use an evaluation and management code for the part of the visit related to the patient’s medical conditions and also bill for the advance care planning discussion using the new Medicare codes, Dr. Newman said.
“You’re allowed to use a modifier to attach to it to get paid for both on the same day,” she said. She suggested checking local Medicare policy for the use of the appropriate modifier, usually 26. “One thing that’s important to understand is there’s a lot of short discussions about advanced care planning that doesn’t fit the code. So if a patient wants to have a 5-minute conversation – that happens a lot – these will not be billable or counted under this new benefit. Fifteen minutes is the least amount of time that qualifies for 99497.”
Dr. Sweet said that she expects greater use of the codes as more doctors become aware of how they can be used.
“Once people use it a time or two, they will use it a lot more,” Dr. Sweet said. “It takes time to change, and it takes time to make time to do the things we need to do. But especially, as we move into high-value care, something like this hopefully, [doctors] will embrace.”
[email protected]
On Twitter @legal_med
When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.
In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.
Staring in 2016, the Centers for Medicare & Medicaid Services began reimbursing physicians for advance care planning discussions with the approval of two new codes: 99497 and 99498. The codes pay about $86 for the first 30-minutes of a face-to-face conversation with a patient, family member, and/or surrogate and about $75 for additional sessions. Services can be furnished in both inpatient and ambulatory settings, and payment is not limited to particular physician specialties.
Dr. Sweet said that she uses these codes a couple times a week when patients visit for reasons such as routine hypertension or diabetes exams or annual Medicare wellness visits. To broach the subject, Dr. Sweet said it helps to have literature about advance care planning in the room that patients can review.
“It’s just a matter of bringing it up,” she said. “Considering some of the other codes, the advance care planning code is really pretty simple.”
However, doctors like Dr. Sweet appear to be in the minority when it comes to providing this service. Of the nearly 57 million beneficiaries enrolled in Medicare at the end of 2016, only about 1% received advance care planning sessions, according to analysis of Medicare data posted by Kaiser Health News. Nationwide, health providers submitted about $93 million in charges, of which $43 million was paid by Medicare.
Challenges deter conversations
During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.
Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.
“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.
“There are two pieces required to take advantage of the advance care planning benefit code: having the conversation and documenting it,” Dr. Fahy noted. “What I write at the end of a resident note or an advanced practice provider note is going to be more focused on the counseling I had with the patient about their condition, the evaluation, and what the treatment plan is going to be. For surgeons to utilize the advance care planning codes, they have to have knowledge of the code, which many do not; they must know the requirements for documenting the conversation; and they have to have the time needed to have the conversation while also addressing all of the surgery-specific issues that need to be covered during the visit. There are a number of hurdles to overcome.”
Danielle B. Scheurer, MD, a hospitalist and chief quality officer at the Medical University of South Carolina, Charleston, said that she, too, has not used advance care planning codes. The reimbursement tool is a positive step forward, she said, but so far, it’s not an easy insert into a hospitalist’s practice.
“It’s not top of mind as far as a billing practice,” she said. “It’s not built into the typical work flow. Obviously, it’s not every patient, it’s not everyday, so you have to remember to put it into your work flow. That’s probably the biggest barrier for most hospitalists: either not knowing about it at all or not yet figuring out how to weave it into what they already do.”
Overcoming hurdles through experience
Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.
Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.
At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.
“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”
“Most of my Medicare patients are folks that have four to five chronic medical conditions, and for them to make a 30-minute visit to the office and not talk about any of those conditions but to talk about home safety and advance directives and fall prevention, it’s hard for them to understand that,” he said.
Dr. Newman stresses that while the billing approach takes time to learn, the codes can be weaved into regular practice with some preparation and planning. At her practice, she primarily uses the codes for patients with challenging changes in their health status, sometimes setting up meetings in advance and, other times, conducting a spur-of-the-moment conversation.
“It’s a wonderful benefit,” she said. “I’m not surprised it’s taking awhile to take hold. The reason is you have to prepare for these visits. It takes preparation, including a chart review.”
A common misconception is that the visit must be scheduled separately and cannot be added to another visit, she said. Doctors can bill the advance care planning codes on the same day as an evaluation and management service. For instance, if a patient is accompanied by a family member and seen for routine follow-up, the physician can discuss the medical conditions first and later have a discussion about advance care planning. When billing, the physician can then use an evaluation and management code for the part of the visit related to the patient’s medical conditions and also bill for the advance care planning discussion using the new Medicare codes, Dr. Newman said.
“You’re allowed to use a modifier to attach to it to get paid for both on the same day,” she said. She suggested checking local Medicare policy for the use of the appropriate modifier, usually 26. “One thing that’s important to understand is there’s a lot of short discussions about advanced care planning that doesn’t fit the code. So if a patient wants to have a 5-minute conversation – that happens a lot – these will not be billable or counted under this new benefit. Fifteen minutes is the least amount of time that qualifies for 99497.”
Dr. Sweet said that she expects greater use of the codes as more doctors become aware of how they can be used.
“Once people use it a time or two, they will use it a lot more,” Dr. Sweet said. “It takes time to change, and it takes time to make time to do the things we need to do. But especially, as we move into high-value care, something like this hopefully, [doctors] will embrace.”
[email protected]
On Twitter @legal_med
Sneak Peek: The Hospital Leader blog – Sept. 2017
Wrongful Life
There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.
These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).
But for situations where the paperwork is clear, and the patient actually does receive undesired aggressive care, more plaintiff attorneys are taking on these cases of the “right to die,” since now more people are recognizing and accepting that unwanted life is a type of harm.
This brings to light two important considerations in how we use advanced care planning documentation:
1. These documents should be treated as dynamic decision-making documents, not static documents that are filled out and filed at a single point in time. Patient wishes can and do change due to a variety of factors; any changes should be repeatedly sought to ensure consistency with care plans.
2. These documents should be the start of a conversation, not the end of a conversation. Written documentation can still be wrought with ambiguity; a conversation about the document can help clarify desires and ensure that wishes and care plans match.
In our ongoing desire to “do no harm,” overtreatment is increasingly being recognized by patients and families as a type of harm. To avoid these potentially catastrophic situations, we should all use advanced care documentation as the start of a careful conversation about goals of care and treatment choices. Hospitalists should work with their interprofessional team members (for example, case managers, social workers, nurse navigators, and so on) to make sure every patient has, or is at least working on, advance care directives, and guide the patient and family in decision-making that puts them at ease. With our patients, we can help ensure concordance between their end-of-life wishes and our care plans.
Read the full post at hospitalleader.org.
Also on The Hospital Leader…
Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM
SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
Wrongful Life
There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.
These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).
But for situations where the paperwork is clear, and the patient actually does receive undesired aggressive care, more plaintiff attorneys are taking on these cases of the “right to die,” since now more people are recognizing and accepting that unwanted life is a type of harm.
This brings to light two important considerations in how we use advanced care planning documentation:
1. These documents should be treated as dynamic decision-making documents, not static documents that are filled out and filed at a single point in time. Patient wishes can and do change due to a variety of factors; any changes should be repeatedly sought to ensure consistency with care plans.
2. These documents should be the start of a conversation, not the end of a conversation. Written documentation can still be wrought with ambiguity; a conversation about the document can help clarify desires and ensure that wishes and care plans match.
In our ongoing desire to “do no harm,” overtreatment is increasingly being recognized by patients and families as a type of harm. To avoid these potentially catastrophic situations, we should all use advanced care documentation as the start of a careful conversation about goals of care and treatment choices. Hospitalists should work with their interprofessional team members (for example, case managers, social workers, nurse navigators, and so on) to make sure every patient has, or is at least working on, advance care directives, and guide the patient and family in decision-making that puts them at ease. With our patients, we can help ensure concordance between their end-of-life wishes and our care plans.
Read the full post at hospitalleader.org.
Also on The Hospital Leader…
Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM
SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
Wrongful Life
There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.
These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).
But for situations where the paperwork is clear, and the patient actually does receive undesired aggressive care, more plaintiff attorneys are taking on these cases of the “right to die,” since now more people are recognizing and accepting that unwanted life is a type of harm.
This brings to light two important considerations in how we use advanced care planning documentation:
1. These documents should be treated as dynamic decision-making documents, not static documents that are filled out and filed at a single point in time. Patient wishes can and do change due to a variety of factors; any changes should be repeatedly sought to ensure consistency with care plans.
2. These documents should be the start of a conversation, not the end of a conversation. Written documentation can still be wrought with ambiguity; a conversation about the document can help clarify desires and ensure that wishes and care plans match.
In our ongoing desire to “do no harm,” overtreatment is increasingly being recognized by patients and families as a type of harm. To avoid these potentially catastrophic situations, we should all use advanced care documentation as the start of a careful conversation about goals of care and treatment choices. Hospitalists should work with their interprofessional team members (for example, case managers, social workers, nurse navigators, and so on) to make sure every patient has, or is at least working on, advance care directives, and guide the patient and family in decision-making that puts them at ease. With our patients, we can help ensure concordance between their end-of-life wishes and our care plans.
Read the full post at hospitalleader.org.
Also on The Hospital Leader…
Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM
SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
Advance Care Planning: Making It Easier for Patients (and You)
With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.
For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).
Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.
LANDMARK EVENTS HAVE DEFINED ACP TODAY
In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.1 In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.2
Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.
In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.
In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.
The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by Congress in 1990. All federally funded health care facilities were now required to educate patients of their rights in determining their medical care and to ask about advance directives.3 The ACP movement gained additional momentum from the landmark SUPPORT study that documented shortcomings in communication between physicians and patients/families about treatment preferences and end-of-life care in US hospitals.4
In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.5
THE DEMONSTRATED BENEFITS OF ACP
When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.6 ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.6-8
More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.7 Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.7 When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satisfaction.9-11
One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.8
Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”13 While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.
A SNAPSHOT OF PARTICIPATION IN ACP
Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.16 In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.17 Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.18
PROVIDER AND PATIENT BARRIERS TO ACP
If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.
A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.19 Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.20,21
NATIONAL MODELS TO HELP WITH IMPLEMENTATION
The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.22 The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.22 Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.23,24
National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).
Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”
HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS
When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.25
When a patient is ready to have this conversation, your goal should be three-fold:26
- Help the patient articulate personal values, goals, and preferences.
- Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
- Help the patient translate expressed values into specific medical care plans, if applicable.
Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.
Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”27 If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.
Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.
BE SURE TO BILL FOR ACP SERVICES
To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.
CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.
CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.
CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.28
According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.
1. Kutner L. Due process of euthanasia: the living will, a proposal. Indiana Law J. 1969;44:539-554.
2. California Law Revision Commission. 2000 Health Care Decisions Law and Revised Power of Attorney Law. www.clrc.ca.gov/pub/Printed-Reports/Pub208.pdf. Accessed August 14, 2017.
3. H.R. 5067 - 101st Congress. Patient Self Determination Act of 1990. www.govtrack.us/congress/bills/101/hr5067. Accessed August 14, 2017.
4. The SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1995;274:1591-1598.
5. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
6. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: systematic review of evidence. Palliat Med. 2015;29:869-884.
7. Wright AA, Ray A, Mack JW, et al. Associations between end-of-life discussions, patient mental-health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673.
8. Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28:1000-1025.
9. Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
10. Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc. 2005;53:290-294.
11. Schamp R, Tenkku L. Managed death in a PACE: pathways in present and advance directives. J Am Med Dir Assoc. 2006;7:339-344.
12. Walczak A, Butow PN, Bu S, et al. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99:3-16.
13. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153:256-261.
14. Straton JB, Wang NY, Meoni LA, et al. Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors study. J Am Geriatr Soc. 2004;52:577-582.
15. Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166:890-895.
16. Rao JK, Anderson LA, Lin F, et al. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46:65-70.
17. Grudzen CR, Buonocore P, Steinberg J, et al; AAHPM Research Committee Writing Group. Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manage. 2016;51:647-651.
18. Jones AL, Moss AJ, Harris-Kojetin LD. Use of advance directives in long-term care populations. NCHS Data Brief. 2011;(54):1-8.
19. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10:e0116629.
20. Fried TR, Bullock K, Iannone L, et al. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57:1547-1555.
21. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39.
22. Winter L, Parks SM, Diamond JJ. Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. J Palliat Med. 2010;13:567-572.
23. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. www.nap.edu/read/18748/chapter/1. Accessed August 14, 2017.
24. Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56:1006-1013.
25. McMahan RD, Knight SJ, Fried TR, et al. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46:355-365.
26. Lum HD, Sudore RL, Bekelman DB. Advance care planning in the elderly. Med Clin North Am. 2015;99:391-403.
27. Lum HD, Sudore RL. Advance care planning and goals of care communication in older adults with cardiovascular disease and multi-morbidity. Clin Geriatr Med. 2016;32:247-260.
28. American College of Physicians. Advanced Care Planning: Implementation for practices. www.acponline.org/system/files/documents/practice-resources/business-resources/payment/advance_care_planning_toolkit.pdf. Accessed August 14, 2017.
With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.
For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).
Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.
LANDMARK EVENTS HAVE DEFINED ACP TODAY
In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.1 In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.2
Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.
In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.
In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.
The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by Congress in 1990. All federally funded health care facilities were now required to educate patients of their rights in determining their medical care and to ask about advance directives.3 The ACP movement gained additional momentum from the landmark SUPPORT study that documented shortcomings in communication between physicians and patients/families about treatment preferences and end-of-life care in US hospitals.4
In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.5
THE DEMONSTRATED BENEFITS OF ACP
When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.6 ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.6-8
More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.7 Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.7 When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satisfaction.9-11
One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.8
Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”13 While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.
A SNAPSHOT OF PARTICIPATION IN ACP
Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.16 In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.17 Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.18
PROVIDER AND PATIENT BARRIERS TO ACP
If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.
A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.19 Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.20,21
NATIONAL MODELS TO HELP WITH IMPLEMENTATION
The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.22 The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.22 Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.23,24
National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).
Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”
HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS
When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.25
When a patient is ready to have this conversation, your goal should be three-fold:26
- Help the patient articulate personal values, goals, and preferences.
- Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
- Help the patient translate expressed values into specific medical care plans, if applicable.
Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.
Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”27 If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.
Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.
BE SURE TO BILL FOR ACP SERVICES
To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.
CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.
CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.
CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.28
According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.
With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.
For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).
Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.
LANDMARK EVENTS HAVE DEFINED ACP TODAY
In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.1 In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.2
Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.
In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.
In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.
The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by Congress in 1990. All federally funded health care facilities were now required to educate patients of their rights in determining their medical care and to ask about advance directives.3 The ACP movement gained additional momentum from the landmark SUPPORT study that documented shortcomings in communication between physicians and patients/families about treatment preferences and end-of-life care in US hospitals.4
In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.5
THE DEMONSTRATED BENEFITS OF ACP
When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.6 ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.6-8
More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.7 Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.7 When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satisfaction.9-11
One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.8
Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”13 While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.
A SNAPSHOT OF PARTICIPATION IN ACP
Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.16 In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.17 Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.18
PROVIDER AND PATIENT BARRIERS TO ACP
If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.
A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.19 Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.20,21
NATIONAL MODELS TO HELP WITH IMPLEMENTATION
The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.22 The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.22 Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.23,24
National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).
Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”
HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS
When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.25
When a patient is ready to have this conversation, your goal should be three-fold:26
- Help the patient articulate personal values, goals, and preferences.
- Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
- Help the patient translate expressed values into specific medical care plans, if applicable.
Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.
Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”27 If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.
Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.
BE SURE TO BILL FOR ACP SERVICES
To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.
CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.
CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.
CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.28
According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.
1. Kutner L. Due process of euthanasia: the living will, a proposal. Indiana Law J. 1969;44:539-554.
2. California Law Revision Commission. 2000 Health Care Decisions Law and Revised Power of Attorney Law. www.clrc.ca.gov/pub/Printed-Reports/Pub208.pdf. Accessed August 14, 2017.
3. H.R. 5067 - 101st Congress. Patient Self Determination Act of 1990. www.govtrack.us/congress/bills/101/hr5067. Accessed August 14, 2017.
4. The SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1995;274:1591-1598.
5. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
6. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: systematic review of evidence. Palliat Med. 2015;29:869-884.
7. Wright AA, Ray A, Mack JW, et al. Associations between end-of-life discussions, patient mental-health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673.
8. Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28:1000-1025.
9. Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
10. Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc. 2005;53:290-294.
11. Schamp R, Tenkku L. Managed death in a PACE: pathways in present and advance directives. J Am Med Dir Assoc. 2006;7:339-344.
12. Walczak A, Butow PN, Bu S, et al. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99:3-16.
13. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153:256-261.
14. Straton JB, Wang NY, Meoni LA, et al. Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors study. J Am Geriatr Soc. 2004;52:577-582.
15. Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166:890-895.
16. Rao JK, Anderson LA, Lin F, et al. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46:65-70.
17. Grudzen CR, Buonocore P, Steinberg J, et al; AAHPM Research Committee Writing Group. Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manage. 2016;51:647-651.
18. Jones AL, Moss AJ, Harris-Kojetin LD. Use of advance directives in long-term care populations. NCHS Data Brief. 2011;(54):1-8.
19. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10:e0116629.
20. Fried TR, Bullock K, Iannone L, et al. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57:1547-1555.
21. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39.
22. Winter L, Parks SM, Diamond JJ. Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. J Palliat Med. 2010;13:567-572.
23. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. www.nap.edu/read/18748/chapter/1. Accessed August 14, 2017.
24. Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56:1006-1013.
25. McMahan RD, Knight SJ, Fried TR, et al. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46:355-365.
26. Lum HD, Sudore RL, Bekelman DB. Advance care planning in the elderly. Med Clin North Am. 2015;99:391-403.
27. Lum HD, Sudore RL. Advance care planning and goals of care communication in older adults with cardiovascular disease and multi-morbidity. Clin Geriatr Med. 2016;32:247-260.
28. American College of Physicians. Advanced Care Planning: Implementation for practices. www.acponline.org/system/files/documents/practice-resources/business-resources/payment/advance_care_planning_toolkit.pdf. Accessed August 14, 2017.
1. Kutner L. Due process of euthanasia: the living will, a proposal. Indiana Law J. 1969;44:539-554.
2. California Law Revision Commission. 2000 Health Care Decisions Law and Revised Power of Attorney Law. www.clrc.ca.gov/pub/Printed-Reports/Pub208.pdf. Accessed August 14, 2017.
3. H.R. 5067 - 101st Congress. Patient Self Determination Act of 1990. www.govtrack.us/congress/bills/101/hr5067. Accessed August 14, 2017.
4. The SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1995;274:1591-1598.
5. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
6. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: systematic review of evidence. Palliat Med. 2015;29:869-884.
7. Wright AA, Ray A, Mack JW, et al. Associations between end-of-life discussions, patient mental-health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673.
8. Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28:1000-1025.
9. Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
10. Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc. 2005;53:290-294.
11. Schamp R, Tenkku L. Managed death in a PACE: pathways in present and advance directives. J Am Med Dir Assoc. 2006;7:339-344.
12. Walczak A, Butow PN, Bu S, et al. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99:3-16.
13. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153:256-261.
14. Straton JB, Wang NY, Meoni LA, et al. Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors study. J Am Geriatr Soc. 2004;52:577-582.
15. Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166:890-895.
16. Rao JK, Anderson LA, Lin F, et al. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46:65-70.
17. Grudzen CR, Buonocore P, Steinberg J, et al; AAHPM Research Committee Writing Group. Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manage. 2016;51:647-651.
18. Jones AL, Moss AJ, Harris-Kojetin LD. Use of advance directives in long-term care populations. NCHS Data Brief. 2011;(54):1-8.
19. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10:e0116629.
20. Fried TR, Bullock K, Iannone L, et al. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57:1547-1555.
21. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39.
22. Winter L, Parks SM, Diamond JJ. Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. J Palliat Med. 2010;13:567-572.
23. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. www.nap.edu/read/18748/chapter/1. Accessed August 14, 2017.
24. Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56:1006-1013.
25. McMahan RD, Knight SJ, Fried TR, et al. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46:355-365.
26. Lum HD, Sudore RL, Bekelman DB. Advance care planning in the elderly. Med Clin North Am. 2015;99:391-403.
27. Lum HD, Sudore RL. Advance care planning and goals of care communication in older adults with cardiovascular disease and multi-morbidity. Clin Geriatr Med. 2016;32:247-260.
28. American College of Physicians. Advanced Care Planning: Implementation for practices. www.acponline.org/system/files/documents/practice-resources/business-resources/payment/advance_care_planning_toolkit.pdf. Accessed August 14, 2017.
The Search for Meaning After Surviving Cancer
Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.
Related: Social Interaction May Enhance Patient Survival After Chemotherapy
Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.
The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.
Related: Women Living Longer With Metastatic Breast Cancer
The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.
The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.
Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.
Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.
Related: Social Interaction May Enhance Patient Survival After Chemotherapy
Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.
The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.
Related: Women Living Longer With Metastatic Breast Cancer
The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.
The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.
Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.
Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.
Related: Social Interaction May Enhance Patient Survival After Chemotherapy
Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.
The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.
Related: Women Living Longer With Metastatic Breast Cancer
The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.
The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.
Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.
End-of-life advice: More than 500,000 chat on Medicare’s dime
The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.
But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.
“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”
Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.
In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.
Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.
Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.
That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.
“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”
Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.
Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.
“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.
In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.
“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”
There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.
Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”
Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.
“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”
That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.
“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.
The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.
But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.
“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”
Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.
In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.
Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.
Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.
That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.
“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”
Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.
Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.
“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.
In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.
“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”
There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.
Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”
Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.
“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”
That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.
“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.
The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.
But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.
“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”
Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.
In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.
Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.
Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.
That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.
“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”
Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.
Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.
“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.
In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.
“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”
There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.
Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”
Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.
“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”
That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.
“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.
Cancer the most common diagnosis in palliative care patients
More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.
A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.
A medical/surgical unit was the referring site for 43% of palliative care referrals in 2016, with 26% of patients coming from an intensive care unit, 13% from a step-down unit, and 8% from an oncology unit, they noted.
More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.
A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.
A medical/surgical unit was the referring site for 43% of palliative care referrals in 2016, with 26% of patients coming from an intensive care unit, 13% from a step-down unit, and 8% from an oncology unit, they noted.
More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.
A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.
A medical/surgical unit was the referring site for 43% of palliative care referrals in 2016, with 26% of patients coming from an intensive care unit, 13% from a step-down unit, and 8% from an oncology unit, they noted.