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Walking the Line: Balancing Autonomy and Safety at End-of-Life
Background
The goal of hospice and palliative care is to provide comfort and dignity for individuals by honoring autonomy and patient preferences at endof- life. These standards can be difficult to balance when concerns around decision-making capacity and safety arise. The Veteran’s Health Administration has numerous resources to support interdisciplinary teams. We present a case study highlighting conflict between these ethical principles
Case Presentation
Veteran is a 66-year-old male with metastatic neuroendocrine cancer to brain and co-occurring polysubstance use disorder. Veteran agreed to VA inpatient hospice due to functional decline and limited social support at home. Day passes were initially allowed but later restricted due to multiple safety concerns surrounding mental status, smoking on campus and unauthorized passes. Behaviors escalated and veteran removed secure care monitor, left the unit without notifying staff, and erratically drove off campus prompting local police involvement.
Discussion
Patient demonstrated a preference to attend Alcoholics Anonymous meetings in person, to use his vehicle and to live at home. Given the complexity of this case, we turned to the National Center for Ethics in Health Care for input. This included guidance about legal and ethical limitations and recommendations for ongoing assessment and documentation of decisionmaking capacity and use of a surrogate.
Results
As veteran’s mental status declined, veteran no longer demonstrated the capacity to understand the safety risks of driving or living at home. His sister served as his health care agent and was opposed to home discharge due to safety concerns. The interdisciplinary team attempted to focus on respecting veteran’s dignity and autonomy as veteran approached end-oflife. Conflicts arose between the ethical pillars of autonomy, non-maleficence, community safety, and legal risks to institution. Lessons learned included the importance of daily safety huddles, ensuring secure care system functions properly, performing ongoing capacity assessments, and improving pre-admission screening.
Conclusions
Balancing autonomy and patient prefpreferences in VA hospice care demands continuous evaluation and adjustment of care plans. Legal and institutional ethics can be consulted to assist providers in formulating optimal plans and to guide use of ethical pillars within the VA framework.
Background
The goal of hospice and palliative care is to provide comfort and dignity for individuals by honoring autonomy and patient preferences at endof- life. These standards can be difficult to balance when concerns around decision-making capacity and safety arise. The Veteran’s Health Administration has numerous resources to support interdisciplinary teams. We present a case study highlighting conflict between these ethical principles
Case Presentation
Veteran is a 66-year-old male with metastatic neuroendocrine cancer to brain and co-occurring polysubstance use disorder. Veteran agreed to VA inpatient hospice due to functional decline and limited social support at home. Day passes were initially allowed but later restricted due to multiple safety concerns surrounding mental status, smoking on campus and unauthorized passes. Behaviors escalated and veteran removed secure care monitor, left the unit without notifying staff, and erratically drove off campus prompting local police involvement.
Discussion
Patient demonstrated a preference to attend Alcoholics Anonymous meetings in person, to use his vehicle and to live at home. Given the complexity of this case, we turned to the National Center for Ethics in Health Care for input. This included guidance about legal and ethical limitations and recommendations for ongoing assessment and documentation of decisionmaking capacity and use of a surrogate.
Results
As veteran’s mental status declined, veteran no longer demonstrated the capacity to understand the safety risks of driving or living at home. His sister served as his health care agent and was opposed to home discharge due to safety concerns. The interdisciplinary team attempted to focus on respecting veteran’s dignity and autonomy as veteran approached end-oflife. Conflicts arose between the ethical pillars of autonomy, non-maleficence, community safety, and legal risks to institution. Lessons learned included the importance of daily safety huddles, ensuring secure care system functions properly, performing ongoing capacity assessments, and improving pre-admission screening.
Conclusions
Balancing autonomy and patient prefpreferences in VA hospice care demands continuous evaluation and adjustment of care plans. Legal and institutional ethics can be consulted to assist providers in formulating optimal plans and to guide use of ethical pillars within the VA framework.
Background
The goal of hospice and palliative care is to provide comfort and dignity for individuals by honoring autonomy and patient preferences at endof- life. These standards can be difficult to balance when concerns around decision-making capacity and safety arise. The Veteran’s Health Administration has numerous resources to support interdisciplinary teams. We present a case study highlighting conflict between these ethical principles
Case Presentation
Veteran is a 66-year-old male with metastatic neuroendocrine cancer to brain and co-occurring polysubstance use disorder. Veteran agreed to VA inpatient hospice due to functional decline and limited social support at home. Day passes were initially allowed but later restricted due to multiple safety concerns surrounding mental status, smoking on campus and unauthorized passes. Behaviors escalated and veteran removed secure care monitor, left the unit without notifying staff, and erratically drove off campus prompting local police involvement.
Discussion
Patient demonstrated a preference to attend Alcoholics Anonymous meetings in person, to use his vehicle and to live at home. Given the complexity of this case, we turned to the National Center for Ethics in Health Care for input. This included guidance about legal and ethical limitations and recommendations for ongoing assessment and documentation of decisionmaking capacity and use of a surrogate.
Results
As veteran’s mental status declined, veteran no longer demonstrated the capacity to understand the safety risks of driving or living at home. His sister served as his health care agent and was opposed to home discharge due to safety concerns. The interdisciplinary team attempted to focus on respecting veteran’s dignity and autonomy as veteran approached end-oflife. Conflicts arose between the ethical pillars of autonomy, non-maleficence, community safety, and legal risks to institution. Lessons learned included the importance of daily safety huddles, ensuring secure care system functions properly, performing ongoing capacity assessments, and improving pre-admission screening.
Conclusions
Balancing autonomy and patient prefpreferences in VA hospice care demands continuous evaluation and adjustment of care plans. Legal and institutional ethics can be consulted to assist providers in formulating optimal plans and to guide use of ethical pillars within the VA framework.
ENT Multidisciplinary Workgroup
Background
The care of veterans with head and neck cancers requires a team approach among multiple disciplines throughout the entire trajectory of their cancer treatment course. Veterans with head and neck cancer have complicated treatments including surgery, radiation, chemotherapy and reconstructive surgery which can affect swallow function, speech, taste and physical appearance. Many patients who get treated for head and neck cancer will have lasting side effects of treatment. Veterans with cancer are more likely than the general population to have mental health comorbidities such as anxiety, depression and PTSD. Many head and neck cancer patients have used tobacco and/or alcohol as coping mechanisms for these issues. A new diagnosis of cancer may exacerbate their mental illness. Tobacco cessation may exacerbate anxiety for patients who have used tobacco as a coping mechanism. Ongoing alcohol use can complicate treatment. All of these issues can create delays in care.
Methods
In August 2019, a task force (“the ENT Multidisciplinary Workgroup”) was formed at VA Connecticut Healthcare System (“VACHS”) including representatives from ENT, Speech Pathology, Nutrition, Palliative Care and Oncology with the specific goal of improved coordination of care for head and neck cancer patients. Regular weekly meetings began in September 2019 to identify and track patients and to make referrals for appropriate diagnostic testing, treatment and supportive care.
Discussion
Weekly meeting among the core members of the ENT workgroup led to identification of patient needs earlier in the illness course than was observed prior to this workgroup initiative. Each week several opportunities are identified to improve patient care. This is a dynamic, ongoing process that has improved communication among key members of the interdisciplinary team that cares for these very complex patients and has led to the development of quality improvement initiatives that are reproducible at other VA sites.
Background
The care of veterans with head and neck cancers requires a team approach among multiple disciplines throughout the entire trajectory of their cancer treatment course. Veterans with head and neck cancer have complicated treatments including surgery, radiation, chemotherapy and reconstructive surgery which can affect swallow function, speech, taste and physical appearance. Many patients who get treated for head and neck cancer will have lasting side effects of treatment. Veterans with cancer are more likely than the general population to have mental health comorbidities such as anxiety, depression and PTSD. Many head and neck cancer patients have used tobacco and/or alcohol as coping mechanisms for these issues. A new diagnosis of cancer may exacerbate their mental illness. Tobacco cessation may exacerbate anxiety for patients who have used tobacco as a coping mechanism. Ongoing alcohol use can complicate treatment. All of these issues can create delays in care.
Methods
In August 2019, a task force (“the ENT Multidisciplinary Workgroup”) was formed at VA Connecticut Healthcare System (“VACHS”) including representatives from ENT, Speech Pathology, Nutrition, Palliative Care and Oncology with the specific goal of improved coordination of care for head and neck cancer patients. Regular weekly meetings began in September 2019 to identify and track patients and to make referrals for appropriate diagnostic testing, treatment and supportive care.
Discussion
Weekly meeting among the core members of the ENT workgroup led to identification of patient needs earlier in the illness course than was observed prior to this workgroup initiative. Each week several opportunities are identified to improve patient care. This is a dynamic, ongoing process that has improved communication among key members of the interdisciplinary team that cares for these very complex patients and has led to the development of quality improvement initiatives that are reproducible at other VA sites.
Background
The care of veterans with head and neck cancers requires a team approach among multiple disciplines throughout the entire trajectory of their cancer treatment course. Veterans with head and neck cancer have complicated treatments including surgery, radiation, chemotherapy and reconstructive surgery which can affect swallow function, speech, taste and physical appearance. Many patients who get treated for head and neck cancer will have lasting side effects of treatment. Veterans with cancer are more likely than the general population to have mental health comorbidities such as anxiety, depression and PTSD. Many head and neck cancer patients have used tobacco and/or alcohol as coping mechanisms for these issues. A new diagnosis of cancer may exacerbate their mental illness. Tobacco cessation may exacerbate anxiety for patients who have used tobacco as a coping mechanism. Ongoing alcohol use can complicate treatment. All of these issues can create delays in care.
Methods
In August 2019, a task force (“the ENT Multidisciplinary Workgroup”) was formed at VA Connecticut Healthcare System (“VACHS”) including representatives from ENT, Speech Pathology, Nutrition, Palliative Care and Oncology with the specific goal of improved coordination of care for head and neck cancer patients. Regular weekly meetings began in September 2019 to identify and track patients and to make referrals for appropriate diagnostic testing, treatment and supportive care.
Discussion
Weekly meeting among the core members of the ENT workgroup led to identification of patient needs earlier in the illness course than was observed prior to this workgroup initiative. Each week several opportunities are identified to improve patient care. This is a dynamic, ongoing process that has improved communication among key members of the interdisciplinary team that cares for these very complex patients and has led to the development of quality improvement initiatives that are reproducible at other VA sites.