Hospice & Palliative Medicine

The VHA has a unique responsibility to provide excellent, patient-centered care to the veterans who have served the U.S. long after their active military service has ended. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely and efficient health care. The need to travel for cancer care, sometimes for long distances over long periods, adds an additional disparity and puts veterans at higher risk for delays in care. Cancer care navigation teams (CCNTs) were established at the VA Puget Sound Health Care System (VAPSHCS) in Seattle, Washington, and throughout the Veterans Integrated Service Network, region 20 (VISN 20), which consists of a large geographical area that includes Alaska, Washington, Oregon, Idaho and one county in both Montana and California. These teams use an interdisciplinary approach to providing personalized assistance, support, and resources to veterans with cancer and their families who require travel for cancer care.

The CCNTs identify and minimize clinical and psychosocial barriers throughout the cancer care continuum. Although structured to address the unique needs and barriers of the veteran population within the VA, CCNT may also be used as a model for patients receiving cancer care within other complex and decentralized health care systems.

Patient Navigation in Cancer Care

The term navigation in the context of cancer care originated in 1990 at Harlem Hospital Center in New York City. The term described an intervention to address barriers to care experienced by a population of low income African American women with breast cancer. By applying patient navigation in addition to offering free and low-cost breast cancer screening and exams for high-risk patients, the 5-year survival rate in this disadvantaged population of women increased from 39% to 70%.¹

Since then, navigation programs in cancer care have been adopted in health care settings around the world. Many different models have been described within the literature.^2-5 Patient navigation is perhaps best recognized as a means to decrease health disparities by addressing barriers to health care, which may include lack of insurance, poverty, medical or psychiatric comorbidities, low health literacy, food insecurity, and homelessness. By identifying and addressing these barriers to care in high-risk populations, patient navigation programs have demonstrated positive outcomes, including improvement in cancer screening rates, timeliness of care, medication adherence, and patient satisfaction.^6-10 Although there is a large amount of literature on navigation in cancer care, there is minimal literature that focuses on navigation in the veteran population and health care system.

Barriers to Cancer Care

The VA is a national health care system composed of community clinics, hospitals, and major referral centers that deliver comprehensive health care to veterans. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely, efficient health care. Research studies have documented significant differences among veterans receiving health care through the VHA compared with veterans who receive health care from other sources. Veterans enrolled at the VA are more likely to be poorer, older, African American, less well educated, unemployed or underemployed, lack social support, and in poorer physical and mental health compared with the general population or with veterans who do not use VA health care.^11-13 Such health disparities have been linked to delays in timely access to health care.¹¹

In a study comparing an age-adjusted ambulatory care population with veterans receiving care at the VA, VA patients were also found to be 3 times more likely to have ever been diagnosed with cancer.¹² Exposures to carcinogens during their military service, such as Agent Orange, may contribute to this difference.¹⁴ Veterans have higher rates of posttraumatic stress disorder (PTSD) and other mental health disorders from military combat experiences or other traumas; these conditions can be exacerbated by the distress of a cancer diagnosis.^15-17

Veterans requiring specialty care, such as cancer-related care, are referred within the VISN and may need to travel long distances in to access these specialty providers. Continuity of care is challenged during cancer diagnosis, staging, treatment, and surveillance when some aspects of care may be completed at geographically distant sites or by community providers if unavailable through the local VA. Appointments for care occur within each specialty service, and staff and clinic availability limit scheduling. There are no formal mechanisms for coordinating visits for efficiency or minimizing travel burden. The electronic medical record (EMR) at the VA can be helpful in accessing information from remote locations but does not easily integrate medical information from different facilities. Clinical data, such as recommendations for follow-up care, may take time and patience to access.

These challenges to the delivery of timely, efficient, patient-centered cancer care were documented in a cancer needs assessment performed in 2012 across VISN 20 (Figure 1). In response, a 3-year pilot program was initiated to implement a network of CCNTs in 8 VA facilities across the region.

Planning and Implementation

The VAPSHCS is a major referral center for cancer care that serves veterans living in VISN 20. On average, about 1,000 new cancers are diagnosed, and VAPSHCS sees 2,000 unique veterans for cancer care annually (Figure 2).One-quarter of these veterans are from out of state. For veterans living in Washington, nearly half traveled 50 miles or more to access cancer services at VAPSHCS. VA Puget Sound implemented its CCNT in the fall of 2014 and consists of an advanced practice registered nurse practitioner (ARNP), registered nurse (RN), social worker (SW), and program support assistant (PSA).

Veterans in identified priority cohorts thought to be at highest risk for barriers to cancer care are enrolled in navigation services. These priority groups include those veterans referred from another regional VA facility, those living more than 100 miles from the VAPSHCS, those referred for multimodality care (eg, surgery with neoadjuvant chemoradiation), and those with significant psychosocial barriers to care. Veterans are identified by the CCNT through a formal consult, notification from the CCNT at another VA facility, a cancer conference, a review of pathology results, and in some cases by veteran self-referral.

As it develops further capacity, CCNT will add other high-risk groups. Ideally, CCNT will eventually be a resource all veterans referred to VAPSHCS for cancer care, so all veterans may be assessed for potential barriers to care and be provided with much needed support and resources.

The CCNT is proactive and systematic in its navigation processes. Where possible, CCNT members are cross-trained to provide role coverage. The team reviews medical records for veterans actively enrolled in CCNT services weekly, to identify new barriers to care and address them in a timely manner. A robust data tracking system (created using a relational database) allows for storage of updated patient information and assigns tasks within the team, tracks upcoming appointments to support coordination, identifies travel and lodging needs, and assures follow-up care is completed. It also generates lists used for routine rounding on patient groups, treatment summary reports, and survivorship care plans.

The CCNT uses standardized assessment tools, including a navigation intake form, the National Comprehensive Cancer Network (NCCN) Distress Thermometer, and a functional assessment. Communication is an essential part of the navigation team, which addresses veteran’s identified needs by conducting weekly rounds within the interdisciplinary team to share information and collaborate.

The team has weekly telephone calls with its CCNTs from referring facilities to discuss veterans at all stages of the cancer continuum and facilitate transfer of information between facilities and providers, including needed diagnostic services and follow-up recommendations. The CCNT also facilitates communication with PSHCS specialty services by actively participating in multidisciplinary rounds and cancer conference.

Finally, although the CCNT follows individual veterans, the team also recognizes its role in identifying and addressing system barriers to cancer care. Collaborating with its partners within the facility and across the network, the team has improved access to services, created teaching tools that can be shared across disciplines, and implemented new procedures and policies to meet the American College of Surgeons Commission on Cancer accreditation standards and improve the cancer care system as a whole.

VAPSHCS Cancer Navigation Model

The VAPSHCS cancer navigation model is divided into 4 main processes based on the cancer care continuum. To illustrate this navigation model, this paper follows the journey of a 57-year-old male veteran referred to PSHCS with newly diagnosed head and neck cancer. He is divorced, with very little social support and lives in a remote area about 60 miles from his primary VA facility and more than 400 miles from PSHCS. His case was presented at the PSHCS facility cancer conference, where concurrent chemotherapy and radiation was recommended. This particular treatment consists of daily radiation and weekly chemotherapy over 6 to 7 weeks. The CCNT staff recognized that this veteran met criteria for navigation, entered him in the tracking database, and notified his referring facility CCNT of the plan of care.

Preconsult

Prior to veterans traveling to VAPSHCS for a new diagnosis or suspicion of cancer, the first goal is to identify any potential barriers to travel. It is a financial burden for many veterans to travel, and in the past, travel has prevented veterans from attending their specialty consult appointments. It is the role of the CCNT PSA to contact the veteran by telephone, introduce their services, provide education about available travel and lodging benefits, and schedule a visit with the CCNT RN to coincide with the veteran’s scheduled other specialty appointments.

In this case, the CCNT PSA contacted the veteran with information about the VAPSHCS, placed a lodging consult to arrange hotel accommodations for the veteran while in Seattle, and provided information regarding transportation from the hotel to the VA. The CCNT also identified that the veteran required a radiation oncology consultation and dental evaluation to proceed with a treatment plan. To decrease travel burden with additional trips to Seattle, the PSA contacted these specialty services to schedule the appointments. The PSA then assembled and mailed a packet of information to the veteran, which included details about how to pack and prepare for the trip, a facility map, and a hotel shuttle schedule.

Consult Visit and Planning

When veterans arrive at VAPSHCS, the CCNT RN meets them and completes an intake form. This standardized questionnaire identifies potential barriers to cancer care and supports the need for referrals to services, such as a dietitian, chaplain, palliative care, social work, physical and occupational therapy, travel, or lodging.

During this visit, the CCNT RN also asks the veteran to complete a NCCN Distress Thermometer. This thermometer assessment tool screens for physical, emotional, and practical needs that are specific to cancer. In this particular veteran’s situation, the distress level was 7 out of 10 (a score of 4 or greater triggersan automatic consult to social work once the results are entered in the EMR). Based on the outcomes information obtained from the intake form and NCCN Distress Thermometer, the CCNT RN made referrals to SW, chaplain services, and the oncology dietitian.

During the CCNT RN visit, nurse identified that the veteran’s financial situation had changed significantly resulting in less income and causing financial distress. The veteran was encouraged to complete an updated benefit renewal form with the SW that would likely eliminate his required copays for medical visits and prescription medications during the 6 weeks of chemotherapy and radiation. This need was communicated to the CCNT SW. The RN provided the veteran with information about VA resources to support him during cancer treatment, including meal options and support groups for both veterans and caregivers. They discussed the likely plan of care, including disease progress, information on prescribed drugs, dental evaluation and extractions as needed, placement of a feeding tube and a central line, and gave the veteran written brochures to review at his convenience. The RN also reviewed the logistics of a prolonged stay for the recommended course of chemotherapy and radiation.

During the initial CCNT intake process, the RN identified that the veteran would be without a caregiver and would be staying alone in lodging throughout his cancer treatment. The RN then completed a functional assessment of safety risks while lodging alone during this extended time. This brief questionnaire identifies any deficits in a veteran’s activity of daily living that may influence safety while lodging alone. The assessment is documented in the EMR, and if any concerns are identified, these are discussed with the veteran and a team of medical providers. If necessary, interventions are put into place before the veteran’s return for treatment. Potential safeguards may include obtaining safety equipment (eg, walker and bath chair), identifying an appropriate caregiver, or referring the veteran to a skilled nursing facility for the duration of treatment.

Following the veteran’s consultation visits, he went home with a return date 2 weeks later to start treatment. The VAPSHCS CCNT discussed the plan of care with his local CCNT, which facilitated placement of his feeding tube and addressed other symptom management concerns. The local CCNT SW completed advanced directives with the veteran and coordinated his travel back to VAPSHCS to begin treatment.

During Treatment

Veterans traveling from other VA facilities are away from their primary care providers (PCPs) for a number of weeks. Other specialty providers see a veteran during cancer treatment; however, the CCNT ARNP supports primary care needs while the veteran is away from their home VA facility. The ARNP is able to address chronic or acute medical issues before the start of treatment to prevent delays in cancer care.

Once the veteran returned to VAPSHCS to initiate therapy, the CCNT ARNP completed a history and physical examination to identify and address any active medical problems and document past medical history and current medication list in the EMR. This provides easy access to a thorough and complete baseline to both the oncology and radiation oncology providers. The ARNP examination revealed a new neck wound on the veteran, likely related to his cancer, and an urgent consult was placed to wound care. The otolaryngology, oncology, and radiation oncology departments were alerted to this development so they could assess the patient and adjust treatment plans as necessary. The veteran also required a refill of his blood pressure medication and had a number of questions regarding his upcoming treatment, which were addressed during the visit.

Within the first 2 days of the veteran’s return, he was scheduled to meet with the CCNT SW who reviewed and documented his advanced directive within the system, assessed his distress, provided therapeutic counseling, and completed the health benefit renewal form. Given the veteran’s financial status, the SW was able to help him apply for financial hardship to cover the costs of the care he had already received and assisted him with securing an appointment with the Social Security Administration (SSA) for disability benefits. The CCNT SW then helped the veteran complete a phone interview with the SSA and complete the application process. The SW also helped him complete the application for VA service-connected compensation and pension disability benefits.

Throughout his treatment course, the CCNT continued to be a resource for the veteran. Because he had PTSD and was uncomfortable attending support groups, the CCNT SW met with him weekly to provide counseling and psychosocial support. He stopped by the CCNT office on several occasions to report how he was doing, and the team provided assistance in obtaining supplies for his feeding tube and managing a complication that arose with his lodging. In preparation for his treatment completion and return home, the VAPSHCS CCNT communicated with his local CCNT to describe follow-up needs and ensure appropriate medical visits were scheduled. His travel home was arranged by the VAPSHCS PSA.

Treatment Completion

Before leaving VAPSHCS, the veteran was scheduled and seen in the clinic by the ARNP, where he received a written comprehensive treatment summary. The summary documented his cancer diagnosis, treatment, complications, and recommendations for follow-up care. He had the opportunity to ask questions about his treatment, and a clinical assessment was made for adverse effects. Appropriate interventions also were identified and addressed. A comprehensive treatment summary note was documented in the EMR and sent to his PCP and other medical specialists at his home facility to assure continuity of care.

The VAPSHCS CCNT continued to communicate weekly with the veteran’s home CCNT following his return, to ensure he received appropriate follow-up care and addressed questions and needs that arose. The veteran’s home CCNT continued to monitor the veteran for 1 year post treatment and communicate with VAPSHCS CCNT.

Conclusion

The VA is in a unique position to meet the needs of veterans by providing comprehensive care with sensitivity to military culture, access to a range of complicated benefits awarded to veterans, particularly those with servicerelated exposures or injuries, and specialists in diagnosis and treatment of physical and mental consequences of their service. Patient navigation helps ensure veterans can access these services, maintain continuity of care despite referrals across large geographic regions, and receive support while receiving cancer treatment at the VA.

Use of an interdisciplinary team, including an ARNP, RN, SW, and PSA is vital to fully address the wide range of physical, psychosocial, and practical barriers to care that a veteran may experience. Since September 2014, PSHCS has enrolled more than 500 veterans with CCNT, and nearly 200 are actively being followed and provided with navigation services at any given time (Figure 3). By proactively identifying and addressing barriers to care, the advocacy provided by CCNT has averted patient safety risks, made better use of limited veteran and VA resources, and provided patient-centered care to veterans.

Evaluation is currently underway to measure the impact of the program and develop metrics for the CCNT. Given the needs of the patient population, the team hopes to see further expansion of CCNT in order to reach more risk groups. Institutional support and funding for patient navigation should be a high priority as the VA strives to provide excellent, patient-centered care.

Acknowledgements
The authors would like first and foremost to give a special thank-you to the veterans for their service to our country. In addition, the authors would like to thank champions for the cancer care navigation team, including Dr. Daniel Wu, chief of oncology; and Dr. Peter Wu, cancer committee chair and surgical oncologist, and Sandra Solomon, nurse manager of the Cancer Care Clinic and inpatient cancer unit at VA Puget Sound Health Care System; Dr. Carol Sprague, staff physician and clinical lead VISN 20 Cancer Care Platform, Judy McConnachie, MPH, administrative director, Clinical Business Intelligence Northwest Innovation Center, VA Portland Health Care System in Portland, Oregon; and Tracy Weistreich, PhD, RN, associate director Patient Care Services at VA Roseburg Healthcare System in Roseburg, Oregon; and the VISN 20 Executive Cancer Care Platform Advisory Board.

The authors would also like to acknowledge all the VISN 20 network cancer care navigation teams at the following sites: Anchorage, Alaska; Boise, Idaho; Portland, Oregon; Roseburg, Oregon; Spokane, Washington; Walla Walla, Washington; and White City, Oregon. Team members at each site have been an integral part of the development and success of the VAPSHCS CCNT.

The authors are also grateful to all of the nurse coordinators and providers within all the specialty services at Puget Sound Health Care Systems, including oncology, radiation oncology, cancer care, otolaryngology, general surgery, palliative care, dental and primary care, for their collaboration with veteran care.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

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The VHA has a unique responsibility to provide excellent, patient-centered care to the veterans who have served the U.S. long after their active military service has ended. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely and efficient health care. The need to travel for cancer care, sometimes for long distances over long periods, adds an additional disparity and puts veterans at higher risk for delays in care. Cancer care navigation teams (CCNTs) were established at the VA Puget Sound Health Care System (VAPSHCS) in Seattle, Washington, and throughout the Veterans Integrated Service Network, region 20 (VISN 20), which consists of a large geographical area that includes Alaska, Washington, Oregon, Idaho and one county in both Montana and California. These teams use an interdisciplinary approach to providing personalized assistance, support, and resources to veterans with cancer and their families who require travel for cancer care.

The CCNTs identify and minimize clinical and psychosocial barriers throughout the cancer care continuum. Although structured to address the unique needs and barriers of the veteran population within the VA, CCNT may also be used as a model for patients receiving cancer care within other complex and decentralized health care systems.

Patient Navigation in Cancer Care

The term navigation in the context of cancer care originated in 1990 at Harlem Hospital Center in New York City. The term described an intervention to address barriers to care experienced by a population of low income African American women with breast cancer. By applying patient navigation in addition to offering free and low-cost breast cancer screening and exams for high-risk patients, the 5-year survival rate in this disadvantaged population of women increased from 39% to 70%.¹

Since then, navigation programs in cancer care have been adopted in health care settings around the world. Many different models have been described within the literature.^2-5 Patient navigation is perhaps best recognized as a means to decrease health disparities by addressing barriers to health care, which may include lack of insurance, poverty, medical or psychiatric comorbidities, low health literacy, food insecurity, and homelessness. By identifying and addressing these barriers to care in high-risk populations, patient navigation programs have demonstrated positive outcomes, including improvement in cancer screening rates, timeliness of care, medication adherence, and patient satisfaction.^6-10 Although there is a large amount of literature on navigation in cancer care, there is minimal literature that focuses on navigation in the veteran population and health care system.

Barriers to Cancer Care

The VA is a national health care system composed of community clinics, hospitals, and major referral centers that deliver comprehensive health care to veterans. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely, efficient health care. Research studies have documented significant differences among veterans receiving health care through the VHA compared with veterans who receive health care from other sources. Veterans enrolled at the VA are more likely to be poorer, older, African American, less well educated, unemployed or underemployed, lack social support, and in poorer physical and mental health compared with the general population or with veterans who do not use VA health care.^11-13 Such health disparities have been linked to delays in timely access to health care.¹¹

In a study comparing an age-adjusted ambulatory care population with veterans receiving care at the VA, VA patients were also found to be 3 times more likely to have ever been diagnosed with cancer.¹² Exposures to carcinogens during their military service, such as Agent Orange, may contribute to this difference.¹⁴ Veterans have higher rates of posttraumatic stress disorder (PTSD) and other mental health disorders from military combat experiences or other traumas; these conditions can be exacerbated by the distress of a cancer diagnosis.^15-17

Veterans requiring specialty care, such as cancer-related care, are referred within the VISN and may need to travel long distances in to access these specialty providers. Continuity of care is challenged during cancer diagnosis, staging, treatment, and surveillance when some aspects of care may be completed at geographically distant sites or by community providers if unavailable through the local VA. Appointments for care occur within each specialty service, and staff and clinic availability limit scheduling. There are no formal mechanisms for coordinating visits for efficiency or minimizing travel burden. The electronic medical record (EMR) at the VA can be helpful in accessing information from remote locations but does not easily integrate medical information from different facilities. Clinical data, such as recommendations for follow-up care, may take time and patience to access.

These challenges to the delivery of timely, efficient, patient-centered cancer care were documented in a cancer needs assessment performed in 2012 across VISN 20 (Figure 1). In response, a 3-year pilot program was initiated to implement a network of CCNTs in 8 VA facilities across the region.

Planning and Implementation

The VAPSHCS is a major referral center for cancer care that serves veterans living in VISN 20. On average, about 1,000 new cancers are diagnosed, and VAPSHCS sees 2,000 unique veterans for cancer care annually (Figure 2).One-quarter of these veterans are from out of state. For veterans living in Washington, nearly half traveled 50 miles or more to access cancer services at VAPSHCS. VA Puget Sound implemented its CCNT in the fall of 2014 and consists of an advanced practice registered nurse practitioner (ARNP), registered nurse (RN), social worker (SW), and program support assistant (PSA).

Veterans in identified priority cohorts thought to be at highest risk for barriers to cancer care are enrolled in navigation services. These priority groups include those veterans referred from another regional VA facility, those living more than 100 miles from the VAPSHCS, those referred for multimodality care (eg, surgery with neoadjuvant chemoradiation), and those with significant psychosocial barriers to care. Veterans are identified by the CCNT through a formal consult, notification from the CCNT at another VA facility, a cancer conference, a review of pathology results, and in some cases by veteran self-referral.

As it develops further capacity, CCNT will add other high-risk groups. Ideally, CCNT will eventually be a resource all veterans referred to VAPSHCS for cancer care, so all veterans may be assessed for potential barriers to care and be provided with much needed support and resources.

The CCNT is proactive and systematic in its navigation processes. Where possible, CCNT members are cross-trained to provide role coverage. The team reviews medical records for veterans actively enrolled in CCNT services weekly, to identify new barriers to care and address them in a timely manner. A robust data tracking system (created using a relational database) allows for storage of updated patient information and assigns tasks within the team, tracks upcoming appointments to support coordination, identifies travel and lodging needs, and assures follow-up care is completed. It also generates lists used for routine rounding on patient groups, treatment summary reports, and survivorship care plans.

The CCNT uses standardized assessment tools, including a navigation intake form, the National Comprehensive Cancer Network (NCCN) Distress Thermometer, and a functional assessment. Communication is an essential part of the navigation team, which addresses veteran’s identified needs by conducting weekly rounds within the interdisciplinary team to share information and collaborate.

The team has weekly telephone calls with its CCNTs from referring facilities to discuss veterans at all stages of the cancer continuum and facilitate transfer of information between facilities and providers, including needed diagnostic services and follow-up recommendations. The CCNT also facilitates communication with PSHCS specialty services by actively participating in multidisciplinary rounds and cancer conference.

Finally, although the CCNT follows individual veterans, the team also recognizes its role in identifying and addressing system barriers to cancer care. Collaborating with its partners within the facility and across the network, the team has improved access to services, created teaching tools that can be shared across disciplines, and implemented new procedures and policies to meet the American College of Surgeons Commission on Cancer accreditation standards and improve the cancer care system as a whole.

VAPSHCS Cancer Navigation Model

The VAPSHCS cancer navigation model is divided into 4 main processes based on the cancer care continuum. To illustrate this navigation model, this paper follows the journey of a 57-year-old male veteran referred to PSHCS with newly diagnosed head and neck cancer. He is divorced, with very little social support and lives in a remote area about 60 miles from his primary VA facility and more than 400 miles from PSHCS. His case was presented at the PSHCS facility cancer conference, where concurrent chemotherapy and radiation was recommended. This particular treatment consists of daily radiation and weekly chemotherapy over 6 to 7 weeks. The CCNT staff recognized that this veteran met criteria for navigation, entered him in the tracking database, and notified his referring facility CCNT of the plan of care.

Preconsult

Prior to veterans traveling to VAPSHCS for a new diagnosis or suspicion of cancer, the first goal is to identify any potential barriers to travel. It is a financial burden for many veterans to travel, and in the past, travel has prevented veterans from attending their specialty consult appointments. It is the role of the CCNT PSA to contact the veteran by telephone, introduce their services, provide education about available travel and lodging benefits, and schedule a visit with the CCNT RN to coincide with the veteran’s scheduled other specialty appointments.

In this case, the CCNT PSA contacted the veteran with information about the VAPSHCS, placed a lodging consult to arrange hotel accommodations for the veteran while in Seattle, and provided information regarding transportation from the hotel to the VA. The CCNT also identified that the veteran required a radiation oncology consultation and dental evaluation to proceed with a treatment plan. To decrease travel burden with additional trips to Seattle, the PSA contacted these specialty services to schedule the appointments. The PSA then assembled and mailed a packet of information to the veteran, which included details about how to pack and prepare for the trip, a facility map, and a hotel shuttle schedule.

Consult Visit and Planning

When veterans arrive at VAPSHCS, the CCNT RN meets them and completes an intake form. This standardized questionnaire identifies potential barriers to cancer care and supports the need for referrals to services, such as a dietitian, chaplain, palliative care, social work, physical and occupational therapy, travel, or lodging.

During this visit, the CCNT RN also asks the veteran to complete a NCCN Distress Thermometer. This thermometer assessment tool screens for physical, emotional, and practical needs that are specific to cancer. In this particular veteran’s situation, the distress level was 7 out of 10 (a score of 4 or greater triggersan automatic consult to social work once the results are entered in the EMR). Based on the outcomes information obtained from the intake form and NCCN Distress Thermometer, the CCNT RN made referrals to SW, chaplain services, and the oncology dietitian.

During the CCNT RN visit, nurse identified that the veteran’s financial situation had changed significantly resulting in less income and causing financial distress. The veteran was encouraged to complete an updated benefit renewal form with the SW that would likely eliminate his required copays for medical visits and prescription medications during the 6 weeks of chemotherapy and radiation. This need was communicated to the CCNT SW. The RN provided the veteran with information about VA resources to support him during cancer treatment, including meal options and support groups for both veterans and caregivers. They discussed the likely plan of care, including disease progress, information on prescribed drugs, dental evaluation and extractions as needed, placement of a feeding tube and a central line, and gave the veteran written brochures to review at his convenience. The RN also reviewed the logistics of a prolonged stay for the recommended course of chemotherapy and radiation.

During the initial CCNT intake process, the RN identified that the veteran would be without a caregiver and would be staying alone in lodging throughout his cancer treatment. The RN then completed a functional assessment of safety risks while lodging alone during this extended time. This brief questionnaire identifies any deficits in a veteran’s activity of daily living that may influence safety while lodging alone. The assessment is documented in the EMR, and if any concerns are identified, these are discussed with the veteran and a team of medical providers. If necessary, interventions are put into place before the veteran’s return for treatment. Potential safeguards may include obtaining safety equipment (eg, walker and bath chair), identifying an appropriate caregiver, or referring the veteran to a skilled nursing facility for the duration of treatment.

Following the veteran’s consultation visits, he went home with a return date 2 weeks later to start treatment. The VAPSHCS CCNT discussed the plan of care with his local CCNT, which facilitated placement of his feeding tube and addressed other symptom management concerns. The local CCNT SW completed advanced directives with the veteran and coordinated his travel back to VAPSHCS to begin treatment.

During Treatment

Veterans traveling from other VA facilities are away from their primary care providers (PCPs) for a number of weeks. Other specialty providers see a veteran during cancer treatment; however, the CCNT ARNP supports primary care needs while the veteran is away from their home VA facility. The ARNP is able to address chronic or acute medical issues before the start of treatment to prevent delays in cancer care.

Once the veteran returned to VAPSHCS to initiate therapy, the CCNT ARNP completed a history and physical examination to identify and address any active medical problems and document past medical history and current medication list in the EMR. This provides easy access to a thorough and complete baseline to both the oncology and radiation oncology providers. The ARNP examination revealed a new neck wound on the veteran, likely related to his cancer, and an urgent consult was placed to wound care. The otolaryngology, oncology, and radiation oncology departments were alerted to this development so they could assess the patient and adjust treatment plans as necessary. The veteran also required a refill of his blood pressure medication and had a number of questions regarding his upcoming treatment, which were addressed during the visit.

Within the first 2 days of the veteran’s return, he was scheduled to meet with the CCNT SW who reviewed and documented his advanced directive within the system, assessed his distress, provided therapeutic counseling, and completed the health benefit renewal form. Given the veteran’s financial status, the SW was able to help him apply for financial hardship to cover the costs of the care he had already received and assisted him with securing an appointment with the Social Security Administration (SSA) for disability benefits. The CCNT SW then helped the veteran complete a phone interview with the SSA and complete the application process. The SW also helped him complete the application for VA service-connected compensation and pension disability benefits.

Throughout his treatment course, the CCNT continued to be a resource for the veteran. Because he had PTSD and was uncomfortable attending support groups, the CCNT SW met with him weekly to provide counseling and psychosocial support. He stopped by the CCNT office on several occasions to report how he was doing, and the team provided assistance in obtaining supplies for his feeding tube and managing a complication that arose with his lodging. In preparation for his treatment completion and return home, the VAPSHCS CCNT communicated with his local CCNT to describe follow-up needs and ensure appropriate medical visits were scheduled. His travel home was arranged by the VAPSHCS PSA.

Treatment Completion

Before leaving VAPSHCS, the veteran was scheduled and seen in the clinic by the ARNP, where he received a written comprehensive treatment summary. The summary documented his cancer diagnosis, treatment, complications, and recommendations for follow-up care. He had the opportunity to ask questions about his treatment, and a clinical assessment was made for adverse effects. Appropriate interventions also were identified and addressed. A comprehensive treatment summary note was documented in the EMR and sent to his PCP and other medical specialists at his home facility to assure continuity of care.

The VAPSHCS CCNT continued to communicate weekly with the veteran’s home CCNT following his return, to ensure he received appropriate follow-up care and addressed questions and needs that arose. The veteran’s home CCNT continued to monitor the veteran for 1 year post treatment and communicate with VAPSHCS CCNT.

Conclusion

The VA is in a unique position to meet the needs of veterans by providing comprehensive care with sensitivity to military culture, access to a range of complicated benefits awarded to veterans, particularly those with servicerelated exposures or injuries, and specialists in diagnosis and treatment of physical and mental consequences of their service. Patient navigation helps ensure veterans can access these services, maintain continuity of care despite referrals across large geographic regions, and receive support while receiving cancer treatment at the VA.

Use of an interdisciplinary team, including an ARNP, RN, SW, and PSA is vital to fully address the wide range of physical, psychosocial, and practical barriers to care that a veteran may experience. Since September 2014, PSHCS has enrolled more than 500 veterans with CCNT, and nearly 200 are actively being followed and provided with navigation services at any given time (Figure 3). By proactively identifying and addressing barriers to care, the advocacy provided by CCNT has averted patient safety risks, made better use of limited veteran and VA resources, and provided patient-centered care to veterans.

Evaluation is currently underway to measure the impact of the program and develop metrics for the CCNT. Given the needs of the patient population, the team hopes to see further expansion of CCNT in order to reach more risk groups. Institutional support and funding for patient navigation should be a high priority as the VA strives to provide excellent, patient-centered care.

Acknowledgements
The authors would like first and foremost to give a special thank-you to the veterans for their service to our country. In addition, the authors would like to thank champions for the cancer care navigation team, including Dr. Daniel Wu, chief of oncology; and Dr. Peter Wu, cancer committee chair and surgical oncologist, and Sandra Solomon, nurse manager of the Cancer Care Clinic and inpatient cancer unit at VA Puget Sound Health Care System; Dr. Carol Sprague, staff physician and clinical lead VISN 20 Cancer Care Platform, Judy McConnachie, MPH, administrative director, Clinical Business Intelligence Northwest Innovation Center, VA Portland Health Care System in Portland, Oregon; and Tracy Weistreich, PhD, RN, associate director Patient Care Services at VA Roseburg Healthcare System in Roseburg, Oregon; and the VISN 20 Executive Cancer Care Platform Advisory Board.

The authors would also like to acknowledge all the VISN 20 network cancer care navigation teams at the following sites: Anchorage, Alaska; Boise, Idaho; Portland, Oregon; Roseburg, Oregon; Spokane, Washington; Walla Walla, Washington; and White City, Oregon. Team members at each site have been an integral part of the development and success of the VAPSHCS CCNT.

The authors are also grateful to all of the nurse coordinators and providers within all the specialty services at Puget Sound Health Care Systems, including oncology, radiation oncology, cancer care, otolaryngology, general surgery, palliative care, dental and primary care, for their collaboration with veteran care.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Click here to continue reading.

The VHA has a unique responsibility to provide excellent, patient-centered care to the veterans who have served the U.S. long after their active military service has ended. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely and efficient health care. The need to travel for cancer care, sometimes for long distances over long periods, adds an additional disparity and puts veterans at higher risk for delays in care. Cancer care navigation teams (CCNTs) were established at the VA Puget Sound Health Care System (VAPSHCS) in Seattle, Washington, and throughout the Veterans Integrated Service Network, region 20 (VISN 20), which consists of a large geographical area that includes Alaska, Washington, Oregon, Idaho and one county in both Montana and California. These teams use an interdisciplinary approach to providing personalized assistance, support, and resources to veterans with cancer and their families who require travel for cancer care.

The CCNTs identify and minimize clinical and psychosocial barriers throughout the cancer care continuum. Although structured to address the unique needs and barriers of the veteran population within the VA, CCNT may also be used as a model for patients receiving cancer care within other complex and decentralized health care systems.

Patient Navigation in Cancer Care

The term navigation in the context of cancer care originated in 1990 at Harlem Hospital Center in New York City. The term described an intervention to address barriers to care experienced by a population of low income African American women with breast cancer. By applying patient navigation in addition to offering free and low-cost breast cancer screening and exams for high-risk patients, the 5-year survival rate in this disadvantaged population of women increased from 39% to 70%.¹

Since then, navigation programs in cancer care have been adopted in health care settings around the world. Many different models have been described within the literature.^2-5 Patient navigation is perhaps best recognized as a means to decrease health disparities by addressing barriers to health care, which may include lack of insurance, poverty, medical or psychiatric comorbidities, low health literacy, food insecurity, and homelessness. By identifying and addressing these barriers to care in high-risk populations, patient navigation programs have demonstrated positive outcomes, including improvement in cancer screening rates, timeliness of care, medication adherence, and patient satisfaction.^6-10 Although there is a large amount of literature on navigation in cancer care, there is minimal literature that focuses on navigation in the veteran population and health care system.

Barriers to Cancer Care

The VA is a national health care system composed of community clinics, hospitals, and major referral centers that deliver comprehensive health care to veterans. For veterans diagnosed with cancer, the physical, mental, and financial consequences can pose significant hardships and create barriers to obtaining timely, efficient health care. Research studies have documented significant differences among veterans receiving health care through the VHA compared with veterans who receive health care from other sources. Veterans enrolled at the VA are more likely to be poorer, older, African American, less well educated, unemployed or underemployed, lack social support, and in poorer physical and mental health compared with the general population or with veterans who do not use VA health care.^11-13 Such health disparities have been linked to delays in timely access to health care.¹¹

In a study comparing an age-adjusted ambulatory care population with veterans receiving care at the VA, VA patients were also found to be 3 times more likely to have ever been diagnosed with cancer.¹² Exposures to carcinogens during their military service, such as Agent Orange, may contribute to this difference.¹⁴ Veterans have higher rates of posttraumatic stress disorder (PTSD) and other mental health disorders from military combat experiences or other traumas; these conditions can be exacerbated by the distress of a cancer diagnosis.^15-17

Veterans requiring specialty care, such as cancer-related care, are referred within the VISN and may need to travel long distances in to access these specialty providers. Continuity of care is challenged during cancer diagnosis, staging, treatment, and surveillance when some aspects of care may be completed at geographically distant sites or by community providers if unavailable through the local VA. Appointments for care occur within each specialty service, and staff and clinic availability limit scheduling. There are no formal mechanisms for coordinating visits for efficiency or minimizing travel burden. The electronic medical record (EMR) at the VA can be helpful in accessing information from remote locations but does not easily integrate medical information from different facilities. Clinical data, such as recommendations for follow-up care, may take time and patience to access.

These challenges to the delivery of timely, efficient, patient-centered cancer care were documented in a cancer needs assessment performed in 2012 across VISN 20 (Figure 1). In response, a 3-year pilot program was initiated to implement a network of CCNTs in 8 VA facilities across the region.

Planning and Implementation

The VAPSHCS is a major referral center for cancer care that serves veterans living in VISN 20. On average, about 1,000 new cancers are diagnosed, and VAPSHCS sees 2,000 unique veterans for cancer care annually (Figure 2).One-quarter of these veterans are from out of state. For veterans living in Washington, nearly half traveled 50 miles or more to access cancer services at VAPSHCS. VA Puget Sound implemented its CCNT in the fall of 2014 and consists of an advanced practice registered nurse practitioner (ARNP), registered nurse (RN), social worker (SW), and program support assistant (PSA).

Veterans in identified priority cohorts thought to be at highest risk for barriers to cancer care are enrolled in navigation services. These priority groups include those veterans referred from another regional VA facility, those living more than 100 miles from the VAPSHCS, those referred for multimodality care (eg, surgery with neoadjuvant chemoradiation), and those with significant psychosocial barriers to care. Veterans are identified by the CCNT through a formal consult, notification from the CCNT at another VA facility, a cancer conference, a review of pathology results, and in some cases by veteran self-referral.

As it develops further capacity, CCNT will add other high-risk groups. Ideally, CCNT will eventually be a resource all veterans referred to VAPSHCS for cancer care, so all veterans may be assessed for potential barriers to care and be provided with much needed support and resources.

The CCNT is proactive and systematic in its navigation processes. Where possible, CCNT members are cross-trained to provide role coverage. The team reviews medical records for veterans actively enrolled in CCNT services weekly, to identify new barriers to care and address them in a timely manner. A robust data tracking system (created using a relational database) allows for storage of updated patient information and assigns tasks within the team, tracks upcoming appointments to support coordination, identifies travel and lodging needs, and assures follow-up care is completed. It also generates lists used for routine rounding on patient groups, treatment summary reports, and survivorship care plans.

The CCNT uses standardized assessment tools, including a navigation intake form, the National Comprehensive Cancer Network (NCCN) Distress Thermometer, and a functional assessment. Communication is an essential part of the navigation team, which addresses veteran’s identified needs by conducting weekly rounds within the interdisciplinary team to share information and collaborate.

The team has weekly telephone calls with its CCNTs from referring facilities to discuss veterans at all stages of the cancer continuum and facilitate transfer of information between facilities and providers, including needed diagnostic services and follow-up recommendations. The CCNT also facilitates communication with PSHCS specialty services by actively participating in multidisciplinary rounds and cancer conference.

Finally, although the CCNT follows individual veterans, the team also recognizes its role in identifying and addressing system barriers to cancer care. Collaborating with its partners within the facility and across the network, the team has improved access to services, created teaching tools that can be shared across disciplines, and implemented new procedures and policies to meet the American College of Surgeons Commission on Cancer accreditation standards and improve the cancer care system as a whole.

VAPSHCS Cancer Navigation Model

The VAPSHCS cancer navigation model is divided into 4 main processes based on the cancer care continuum. To illustrate this navigation model, this paper follows the journey of a 57-year-old male veteran referred to PSHCS with newly diagnosed head and neck cancer. He is divorced, with very little social support and lives in a remote area about 60 miles from his primary VA facility and more than 400 miles from PSHCS. His case was presented at the PSHCS facility cancer conference, where concurrent chemotherapy and radiation was recommended. This particular treatment consists of daily radiation and weekly chemotherapy over 6 to 7 weeks. The CCNT staff recognized that this veteran met criteria for navigation, entered him in the tracking database, and notified his referring facility CCNT of the plan of care.

Preconsult

Prior to veterans traveling to VAPSHCS for a new diagnosis or suspicion of cancer, the first goal is to identify any potential barriers to travel. It is a financial burden for many veterans to travel, and in the past, travel has prevented veterans from attending their specialty consult appointments. It is the role of the CCNT PSA to contact the veteran by telephone, introduce their services, provide education about available travel and lodging benefits, and schedule a visit with the CCNT RN to coincide with the veteran’s scheduled other specialty appointments.

In this case, the CCNT PSA contacted the veteran with information about the VAPSHCS, placed a lodging consult to arrange hotel accommodations for the veteran while in Seattle, and provided information regarding transportation from the hotel to the VA. The CCNT also identified that the veteran required a radiation oncology consultation and dental evaluation to proceed with a treatment plan. To decrease travel burden with additional trips to Seattle, the PSA contacted these specialty services to schedule the appointments. The PSA then assembled and mailed a packet of information to the veteran, which included details about how to pack and prepare for the trip, a facility map, and a hotel shuttle schedule.

Consult Visit and Planning

When veterans arrive at VAPSHCS, the CCNT RN meets them and completes an intake form. This standardized questionnaire identifies potential barriers to cancer care and supports the need for referrals to services, such as a dietitian, chaplain, palliative care, social work, physical and occupational therapy, travel, or lodging.

During this visit, the CCNT RN also asks the veteran to complete a NCCN Distress Thermometer. This thermometer assessment tool screens for physical, emotional, and practical needs that are specific to cancer. In this particular veteran’s situation, the distress level was 7 out of 10 (a score of 4 or greater triggersan automatic consult to social work once the results are entered in the EMR). Based on the outcomes information obtained from the intake form and NCCN Distress Thermometer, the CCNT RN made referrals to SW, chaplain services, and the oncology dietitian.

During the CCNT RN visit, nurse identified that the veteran’s financial situation had changed significantly resulting in less income and causing financial distress. The veteran was encouraged to complete an updated benefit renewal form with the SW that would likely eliminate his required copays for medical visits and prescription medications during the 6 weeks of chemotherapy and radiation. This need was communicated to the CCNT SW. The RN provided the veteran with information about VA resources to support him during cancer treatment, including meal options and support groups for both veterans and caregivers. They discussed the likely plan of care, including disease progress, information on prescribed drugs, dental evaluation and extractions as needed, placement of a feeding tube and a central line, and gave the veteran written brochures to review at his convenience. The RN also reviewed the logistics of a prolonged stay for the recommended course of chemotherapy and radiation.

During the initial CCNT intake process, the RN identified that the veteran would be without a caregiver and would be staying alone in lodging throughout his cancer treatment. The RN then completed a functional assessment of safety risks while lodging alone during this extended time. This brief questionnaire identifies any deficits in a veteran’s activity of daily living that may influence safety while lodging alone. The assessment is documented in the EMR, and if any concerns are identified, these are discussed with the veteran and a team of medical providers. If necessary, interventions are put into place before the veteran’s return for treatment. Potential safeguards may include obtaining safety equipment (eg, walker and bath chair), identifying an appropriate caregiver, or referring the veteran to a skilled nursing facility for the duration of treatment.

Following the veteran’s consultation visits, he went home with a return date 2 weeks later to start treatment. The VAPSHCS CCNT discussed the plan of care with his local CCNT, which facilitated placement of his feeding tube and addressed other symptom management concerns. The local CCNT SW completed advanced directives with the veteran and coordinated his travel back to VAPSHCS to begin treatment.

During Treatment

Veterans traveling from other VA facilities are away from their primary care providers (PCPs) for a number of weeks. Other specialty providers see a veteran during cancer treatment; however, the CCNT ARNP supports primary care needs while the veteran is away from their home VA facility. The ARNP is able to address chronic or acute medical issues before the start of treatment to prevent delays in cancer care.

Once the veteran returned to VAPSHCS to initiate therapy, the CCNT ARNP completed a history and physical examination to identify and address any active medical problems and document past medical history and current medication list in the EMR. This provides easy access to a thorough and complete baseline to both the oncology and radiation oncology providers. The ARNP examination revealed a new neck wound on the veteran, likely related to his cancer, and an urgent consult was placed to wound care. The otolaryngology, oncology, and radiation oncology departments were alerted to this development so they could assess the patient and adjust treatment plans as necessary. The veteran also required a refill of his blood pressure medication and had a number of questions regarding his upcoming treatment, which were addressed during the visit.

Within the first 2 days of the veteran’s return, he was scheduled to meet with the CCNT SW who reviewed and documented his advanced directive within the system, assessed his distress, provided therapeutic counseling, and completed the health benefit renewal form. Given the veteran’s financial status, the SW was able to help him apply for financial hardship to cover the costs of the care he had already received and assisted him with securing an appointment with the Social Security Administration (SSA) for disability benefits. The CCNT SW then helped the veteran complete a phone interview with the SSA and complete the application process. The SW also helped him complete the application for VA service-connected compensation and pension disability benefits.

Throughout his treatment course, the CCNT continued to be a resource for the veteran. Because he had PTSD and was uncomfortable attending support groups, the CCNT SW met with him weekly to provide counseling and psychosocial support. He stopped by the CCNT office on several occasions to report how he was doing, and the team provided assistance in obtaining supplies for his feeding tube and managing a complication that arose with his lodging. In preparation for his treatment completion and return home, the VAPSHCS CCNT communicated with his local CCNT to describe follow-up needs and ensure appropriate medical visits were scheduled. His travel home was arranged by the VAPSHCS PSA.

Treatment Completion

Before leaving VAPSHCS, the veteran was scheduled and seen in the clinic by the ARNP, where he received a written comprehensive treatment summary. The summary documented his cancer diagnosis, treatment, complications, and recommendations for follow-up care. He had the opportunity to ask questions about his treatment, and a clinical assessment was made for adverse effects. Appropriate interventions also were identified and addressed. A comprehensive treatment summary note was documented in the EMR and sent to his PCP and other medical specialists at his home facility to assure continuity of care.

The VAPSHCS CCNT continued to communicate weekly with the veteran’s home CCNT following his return, to ensure he received appropriate follow-up care and addressed questions and needs that arose. The veteran’s home CCNT continued to monitor the veteran for 1 year post treatment and communicate with VAPSHCS CCNT.

Conclusion

The VA is in a unique position to meet the needs of veterans by providing comprehensive care with sensitivity to military culture, access to a range of complicated benefits awarded to veterans, particularly those with servicerelated exposures or injuries, and specialists in diagnosis and treatment of physical and mental consequences of their service. Patient navigation helps ensure veterans can access these services, maintain continuity of care despite referrals across large geographic regions, and receive support while receiving cancer treatment at the VA.

Use of an interdisciplinary team, including an ARNP, RN, SW, and PSA is vital to fully address the wide range of physical, psychosocial, and practical barriers to care that a veteran may experience. Since September 2014, PSHCS has enrolled more than 500 veterans with CCNT, and nearly 200 are actively being followed and provided with navigation services at any given time (Figure 3). By proactively identifying and addressing barriers to care, the advocacy provided by CCNT has averted patient safety risks, made better use of limited veteran and VA resources, and provided patient-centered care to veterans.

Evaluation is currently underway to measure the impact of the program and develop metrics for the CCNT. Given the needs of the patient population, the team hopes to see further expansion of CCNT in order to reach more risk groups. Institutional support and funding for patient navigation should be a high priority as the VA strives to provide excellent, patient-centered care.

Acknowledgements
The authors would like first and foremost to give a special thank-you to the veterans for their service to our country. In addition, the authors would like to thank champions for the cancer care navigation team, including Dr. Daniel Wu, chief of oncology; and Dr. Peter Wu, cancer committee chair and surgical oncologist, and Sandra Solomon, nurse manager of the Cancer Care Clinic and inpatient cancer unit at VA Puget Sound Health Care System; Dr. Carol Sprague, staff physician and clinical lead VISN 20 Cancer Care Platform, Judy McConnachie, MPH, administrative director, Clinical Business Intelligence Northwest Innovation Center, VA Portland Health Care System in Portland, Oregon; and Tracy Weistreich, PhD, RN, associate director Patient Care Services at VA Roseburg Healthcare System in Roseburg, Oregon; and the VISN 20 Executive Cancer Care Platform Advisory Board.

The authors would also like to acknowledge all the VISN 20 network cancer care navigation teams at the following sites: Anchorage, Alaska; Boise, Idaho; Portland, Oregon; Roseburg, Oregon; Spokane, Washington; Walla Walla, Washington; and White City, Oregon. Team members at each site have been an integral part of the development and success of the VAPSHCS CCNT.

The authors are also grateful to all of the nurse coordinators and providers within all the specialty services at Puget Sound Health Care Systems, including oncology, radiation oncology, cancer care, otolaryngology, general surgery, palliative care, dental and primary care, for their collaboration with veteran care.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Click here to continue reading.

 Federal Practitioner talks one-on-one with Louis Fiore, MD, MPH, the executive director of the Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC), which the VA created as 1 of 3 epidemiological research centers. At MAVERIC Fiore is spearheading a precision oncology program, which is developing precision oncology best practices; enhancing patient and provider engagement; and fostering collaboration among the VA, National Cancer Institute, academia, and other health care systems to provide cancer patients with access to clinical trial participation.

 Federal Practitioner talks one-on-one with Louis Fiore, MD, MPH, the executive director of the Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC), which the VA created as 1 of 3 epidemiological research centers. At MAVERIC Fiore is spearheading a precision oncology program, which is developing precision oncology best practices; enhancing patient and provider engagement; and fostering collaboration among the VA, National Cancer Institute, academia, and other health care systems to provide cancer patients with access to clinical trial participation.

 Federal Practitioner talks one-on-one with Louis Fiore, MD, MPH, the executive director of the Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC), which the VA created as 1 of 3 epidemiological research centers. At MAVERIC Fiore is spearheading a precision oncology program, which is developing precision oncology best practices; enhancing patient and provider engagement; and fostering collaboration among the VA, National Cancer Institute, academia, and other health care systems to provide cancer patients with access to clinical trial participation.

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.