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Who Gets to Determine Whether Home Is “Unsafe” at the End of Life?
Sometimes a patient at the end of life (EOL) just wants to go home. We recently treated such a patient, “Joe,” a 66-year-old veteran with end-stage chronic obstructive pulmonary disorder (COPD), severe hearing loss, and heavy alcohol use. A neighbor brought Joe to the hospital when he developed a urinary tract infection. Before hospitalization, Joe spent his days in bed. His neighbor was his designated health care agent (HCA) and caregiver, dropping off meals and bringing Joe to medical appointments. Joe had no other social support. In the hospital, Joe could not participate in physical therapy (PT) evaluations due to severe dyspnea on exertion. He was recommended for home PT, a home health aide, and home nursing, but Joe declined these services out of concern for encroachment on his independence. Given his heavy alcohol use, limited support, and functional limitations, the hospitalist team felt that Joe would be best served in a skilled nursing facility. As the palliative care team, we were consulted and felt that he was eligible for hospice. Joe simply wanted to go home.
Many patients like Joe experience functional decline at EOL, leading to increased care needs and transitions between sites of care.1 Some hospitalized patients at EOL want to transition directly to home, but due to their limited functioning and social support, discharge home may be deemed unsafe by health care professionals (HCPs). Clinicians then face the difficult balancing act of honoring patient wishes and avoiding a bad outcome. For patients at EOL, issues of capacity and risk become particularly salient. Furthermore, the unique structure of the US Department of Veterans Affairs (VA) health system and the psychosocial needs of some veterans add additional considerations for complex EOL discharges.2
End-of-life Decision Making
While patients may express strong preferences regarding their health care, their decision-making ability may worsen as they approach EOL. Contributing factors include older age, effects of hospitalization, treatment adverse effects, and comorbidities, including cognitive impairment. Studies of terminally ill patients show high rates of impaired decisional capacity.3,4 It is critical to assess capacity as part of discharge planning. Even when patients have the capacity, families and caregivers have an important voice, since they are often instrumental in maintaining patients at home.
Defining Risk
Determining whether a discharge is risky or unsafe is highly subjective, with differing opinions among clinicians and between patients and clinicians.5-7 In a qualitative study by Coombs and colleagues, HCPs tended toward a risk-averse approach to discharge decisions, sometimes favoring discharge to care facilities despite patient preferences.6 This approach also reflects pressures from the health care system to decrease the length of stay and reduce readmissions, important metrics for patient care and cost containment. However, keeping patients hospitalized or in nursing facilities does not completely mitigate risks (eg, falls) and carries other hazards (eg, nosocomial infections), as highlighted during the COVID-19 pandemic.7,8 The prospect of malpractice lawsuits and HCP moral distress about perceived risky home situations can also understandably affect decision making.
At the same time, risk calculation changes depending on the patient’s clinical status and priorities. Coombs and colleagues found that in contrast to clinicians, patients nearing EOL are willing to accept increasing risks and suboptimal living conditions to remain at home.6 What may be intolerable for a younger, healthier patient with a long life expectancy may be acceptable for someone who is approaching EOL. In our framework, a risky home discharge at EOL is considered one in which other adverse events, such as falls or inadequate symptom management, are likely.
Ethical Considerations
Unsafe discharges are challenging in part because some of the pillars of medical ethics can conflict. Prior articles have analyzed the ethical concerns of unsafe discharges in detail.9-11 Briefly, when patients wish to return home against initial medical recommendations, treatment teams may focus on the principles of beneficence and nonmaleficence, as exemplified by the desire to minimize harm, and justice, in which clinicians consider resource allocation and risks that a home discharge poses to family members, caregivers, and home health professionals. However, autonomy is important to consider as well. The concept of dignity of risk highlights the imperative to respect others’ decisions even when they increase the chance of harm, particularly given the overall shift in medicine from paternalism to shared decision making.12 Accommodating patient choice in how and where health care is received allows patients to regain some control over their lives, thereby enhancing their quality of life and promoting patient dignity, especially in their remaining days.13
Discharge Risk Framework
Our risk assessment framework helps clinicians more objectively identify factors that increase or decrease risk, inform discharge planning, partner with patients and families, give patients a prominent role in EOL decisions, and mitigate the risk of a bad outcome. This concept has been used in psychiatry, in which formal suicide assessment includes identifying risk factors and protective factors to estimate suicide risk and determine interventions.14 Similar to suicide risk estimation, this framework is based on clinical judgment rather than a specific calculation.
While this framework serves as a guide for determining and mitigating risk, we encourage teams to consider legal or ethical consultations in challenging cases, such as those in which patients lack both capacity and an involved HCA.
Step 1: Determine the patient’s capacity regarding disposition planning. Patients at EOL are at a higher risk of impaired decision-making capabilities; therefore, capacity evaluation is a critical step.
Step 2: Identify risk factors and protective factors for discharge home. Risk factors are intrinsic and extrinsic factors that increase risk such as functional or sensory impairments. Protective factors are intrinsic and extrinsic factors that decrease risk, including a good understanding of illness and consistent connection with the health care system (Table 1).
Step 3: Determine discharge to home risk level based on identified risk factors and protective factors. Patients may be at low, moderate, or high risk of having an adverse event, such as a fall or inadequate symptom control (Table 2).
Step 4: Identify risk mitigation strategies. These should be tailored to the patient based on the factors identified in Step 2. Examples include home nursing and therapy, mental health treatment, a medical alert system, and frequent contact between the patient and health care team.
Step 5: Meet with inpatient and outpatient HCP teams. Meetings should include the primary care professional (PCP) or relevant subspecialist, such as an oncologist for patients with cancer. For veterans receiving care solely at a local VA medical center, this can be easier to facilitate, but for veterans who receive care through both VA and non-VA systems, this step may require additional coordination. We also recommend including interdisciplinary team members, such as social workers, case managers, and the relevant home care or hospice agency. Certain agencies may decline admission if they perceive increased risk, such as no 24-hour care, perceived self-neglect, and limited instrumental support. During this meeting, HCPs discuss risk mitigation strategies identified in Step 4 and create a plan to propose to patients and families.
Step 6: Meet with patient, HCA, and family members. In addition to sharing information about prognosis, assessing caregiver capabilities and burden can guide conversations about discharge. The discharge plan should be determined through shared decision making.11 If the patient lacks capacity regarding disposition planning, this should be shared with the HCA. However, even when patients lack capacity, it is important to continue to engage them to understand their goals and preferences.
Step 7: Maximize risk mitigation strategies. If a moderate- or high-risk discharge is requested, the health care team should maximize risk mitigation strategies. For low-risk discharges, risk mitigation strategies can still promote safety, especially since risk increases as patients progress toward EOL. In some instances, patients, their HCAs, or caregivers may decline all risk mitigation strategies despite best efforts to communicate and negotiate options. In such circumstances, we recommend discussing the case with the outpatient team for a warm handoff. HCPs should also document all efforts (helpful from a legal standpoint as well as for the patient’s future treatment teams) and respect the decision to discharge home.
Applying the Framework
Our patient Joe provides a good illustration of how to implement this EOL framework. He was deemed to have the capacity to make decisions regarding discharge (Step 1). We determined his risk factors and protective factors for discharge (Step 2). His poor functional status, limited instrumental support, heavy alcohol use, rejection of home services, and communication barriers due to severe hearing impairment all increased his risk. Protective factors included an appreciation of functional limitations, intact cognition, and an involved HCA. Based on his limited instrumental support and poor function but good insight into limitations, discharge home was deemed to be of moderate risk (Step 3). Although risk factors such as alcohol use and severe hearing impairment could have raised his level to high risk, we felt that his involved HCA maintained him in the moderate-risk category.
We worked with the hospitalist team, PT, and audiology to identify multiple risk mitigation strategies: frequent phone calls between the HCA and outpatient palliative care team, home PT to improve transfers from bed to bedside commode, home nursing services either through a routine agency or hospice, and hearing aids for better communication (Steps 4 and 5). We then proposed these strategies to Joe and his HCA (Step 6). Due to concerns about infringement on his independence, Joe declined all home services but agreed to twice-daily check-ins by his HCA, frequent communication between his HCA and our team, and new hearing aids.
Joe returned home with the agreed-upon risk mitigation strategies in place (Step 7). Despite clinicians’ original reservations about sending Joe home without formal services, his HCA maintained close contact with our team, noting that Joe remained stable and happy to be at home in the months following discharge.
Conclusions
Fortunately, VA HCPs operate in an integrated health care system with access to psychological, social, and at-home medical support that can help mitigate risks. Still, we have benefitted from having a tool to help us evaluate risk systematically. Even if patients, families, and HCPs disagree on ideal discharge plans, this tool helps clinicians approach discharges methodically while maintaining open communication and partnership with patients. In doing so, our framework reflects the shift in medical culture from a patriarchal approach to shared decision-making practices regarding all aspects of medical care. Furthermore, we hope that this can help reduce clinician moral distress stemming from these challenging cases.
Future research on best practices for discharge risk assessment and optimizing home safety are needed. We also hope to evaluate the impact and effectiveness of our framework through interviews with key stakeholders. For Joe and other veterans like him, where to spend their final days may be the last important decision they make in life, and our framework allows for their voices to be better heard throughout the decision-making process.
Acknowledgments
We thank Brooke Lifland, MD, for her theoretical contributions to the concept behind this paper.
1. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US); March 19, 2015.
2. Casarett D, Pickard A, Amos Bailey F, et al. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement. J Pain Symptom Manage. 2008;35(2):115-125. doi:10.1016/j.jpainsymman.2007.03.008
3. Kolva E, Rosenfeld B, Brescia R, Comfort C. Assessing decision-making capacity at end of life. Gen Hosp Psychiatry. 2014;36(4):392-397. doi:10.1016/j.genhosppsych.2014.02.013
4. Kolva E, Rosenfeld B, Saracino R. Assessing the decision-making capacity of terminally ill patients with cancer. Am J Geriatr Psychiatry. 2018;26(5):523-531. doi:10.1016/j.jagp.2017.11.012
5. Macmillan MS. Hospital staff’s perceptions of risk associated with the discharge of elderly people from acute hospital care. J Adv Nurs. 1994;19(2):249-256. doi:10.1111/j.1365-2648.1994.tb01078.x
6. Coombs MA, Parker R, de Vries K. Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making. Palliat Med. 2017;31(7):617-624. doi:10.1177/0269216316673476
7. Hyslop B. ‘Not safe for discharge’? Words, values, and person-centred care. Age Ageing. 2020;49(3):334-336. doi:10.1093/ageing/afz170
8. Goodacre S. Safe discharge: an irrational, unhelpful and unachievable concept. Emerg Med J. 2006;23(10):753-755. doi:10.1136/emj.2006.037903
9. Swidler RN, Seastrum T, Shelton W. Difficult hospital inpatient discharge decisions: ethical, legal and clinical practice issues. Am J Bioeth. 2007;7(3):23-28. doi:10.1080/15265160601171739
10. Hill J, Filer W. Safety and ethical considerations in discharging patients to suboptimal living situations. AMA J Ethics. 2015;17(6):506-510. Published 2015 Jun 1. doi:10.1001/journalofethics.2015.17.6.ecas2-1506
11. West JC. What is an ethically informed approach to managing patient safety risk during discharge planning?. AMA J Ethics. 2020;22(11):E919-E923. Published 2020 Nov 1. doi:10.1001/amajethics.2020.919
12. Mukherjee D. Discharge decisions and the dignity of risk. Hastings Cent Rep. 2015;45(3):7-8. doi:10.1002/hast.441
13. Wheatley VJ, Baker JI. “Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care. Postgrad Med J. 2007;83(984):643-648. doi:10.1136/pgmj.2007.058487
14. Work Group on Suicidal Behaviors. Practice guideline for the assessment and treatment of patients with suicidal behaviors. Am J Psychiatry. 2003;160(suppl 11):1-60.
Sometimes a patient at the end of life (EOL) just wants to go home. We recently treated such a patient, “Joe,” a 66-year-old veteran with end-stage chronic obstructive pulmonary disorder (COPD), severe hearing loss, and heavy alcohol use. A neighbor brought Joe to the hospital when he developed a urinary tract infection. Before hospitalization, Joe spent his days in bed. His neighbor was his designated health care agent (HCA) and caregiver, dropping off meals and bringing Joe to medical appointments. Joe had no other social support. In the hospital, Joe could not participate in physical therapy (PT) evaluations due to severe dyspnea on exertion. He was recommended for home PT, a home health aide, and home nursing, but Joe declined these services out of concern for encroachment on his independence. Given his heavy alcohol use, limited support, and functional limitations, the hospitalist team felt that Joe would be best served in a skilled nursing facility. As the palliative care team, we were consulted and felt that he was eligible for hospice. Joe simply wanted to go home.
Many patients like Joe experience functional decline at EOL, leading to increased care needs and transitions between sites of care.1 Some hospitalized patients at EOL want to transition directly to home, but due to their limited functioning and social support, discharge home may be deemed unsafe by health care professionals (HCPs). Clinicians then face the difficult balancing act of honoring patient wishes and avoiding a bad outcome. For patients at EOL, issues of capacity and risk become particularly salient. Furthermore, the unique structure of the US Department of Veterans Affairs (VA) health system and the psychosocial needs of some veterans add additional considerations for complex EOL discharges.2
End-of-life Decision Making
While patients may express strong preferences regarding their health care, their decision-making ability may worsen as they approach EOL. Contributing factors include older age, effects of hospitalization, treatment adverse effects, and comorbidities, including cognitive impairment. Studies of terminally ill patients show high rates of impaired decisional capacity.3,4 It is critical to assess capacity as part of discharge planning. Even when patients have the capacity, families and caregivers have an important voice, since they are often instrumental in maintaining patients at home.
Defining Risk
Determining whether a discharge is risky or unsafe is highly subjective, with differing opinions among clinicians and between patients and clinicians.5-7 In a qualitative study by Coombs and colleagues, HCPs tended toward a risk-averse approach to discharge decisions, sometimes favoring discharge to care facilities despite patient preferences.6 This approach also reflects pressures from the health care system to decrease the length of stay and reduce readmissions, important metrics for patient care and cost containment. However, keeping patients hospitalized or in nursing facilities does not completely mitigate risks (eg, falls) and carries other hazards (eg, nosocomial infections), as highlighted during the COVID-19 pandemic.7,8 The prospect of malpractice lawsuits and HCP moral distress about perceived risky home situations can also understandably affect decision making.
At the same time, risk calculation changes depending on the patient’s clinical status and priorities. Coombs and colleagues found that in contrast to clinicians, patients nearing EOL are willing to accept increasing risks and suboptimal living conditions to remain at home.6 What may be intolerable for a younger, healthier patient with a long life expectancy may be acceptable for someone who is approaching EOL. In our framework, a risky home discharge at EOL is considered one in which other adverse events, such as falls or inadequate symptom management, are likely.
Ethical Considerations
Unsafe discharges are challenging in part because some of the pillars of medical ethics can conflict. Prior articles have analyzed the ethical concerns of unsafe discharges in detail.9-11 Briefly, when patients wish to return home against initial medical recommendations, treatment teams may focus on the principles of beneficence and nonmaleficence, as exemplified by the desire to minimize harm, and justice, in which clinicians consider resource allocation and risks that a home discharge poses to family members, caregivers, and home health professionals. However, autonomy is important to consider as well. The concept of dignity of risk highlights the imperative to respect others’ decisions even when they increase the chance of harm, particularly given the overall shift in medicine from paternalism to shared decision making.12 Accommodating patient choice in how and where health care is received allows patients to regain some control over their lives, thereby enhancing their quality of life and promoting patient dignity, especially in their remaining days.13
Discharge Risk Framework
Our risk assessment framework helps clinicians more objectively identify factors that increase or decrease risk, inform discharge planning, partner with patients and families, give patients a prominent role in EOL decisions, and mitigate the risk of a bad outcome. This concept has been used in psychiatry, in which formal suicide assessment includes identifying risk factors and protective factors to estimate suicide risk and determine interventions.14 Similar to suicide risk estimation, this framework is based on clinical judgment rather than a specific calculation.
While this framework serves as a guide for determining and mitigating risk, we encourage teams to consider legal or ethical consultations in challenging cases, such as those in which patients lack both capacity and an involved HCA.
Step 1: Determine the patient’s capacity regarding disposition planning. Patients at EOL are at a higher risk of impaired decision-making capabilities; therefore, capacity evaluation is a critical step.
Step 2: Identify risk factors and protective factors for discharge home. Risk factors are intrinsic and extrinsic factors that increase risk such as functional or sensory impairments. Protective factors are intrinsic and extrinsic factors that decrease risk, including a good understanding of illness and consistent connection with the health care system (Table 1).
Step 3: Determine discharge to home risk level based on identified risk factors and protective factors. Patients may be at low, moderate, or high risk of having an adverse event, such as a fall or inadequate symptom control (Table 2).
Step 4: Identify risk mitigation strategies. These should be tailored to the patient based on the factors identified in Step 2. Examples include home nursing and therapy, mental health treatment, a medical alert system, and frequent contact between the patient and health care team.
Step 5: Meet with inpatient and outpatient HCP teams. Meetings should include the primary care professional (PCP) or relevant subspecialist, such as an oncologist for patients with cancer. For veterans receiving care solely at a local VA medical center, this can be easier to facilitate, but for veterans who receive care through both VA and non-VA systems, this step may require additional coordination. We also recommend including interdisciplinary team members, such as social workers, case managers, and the relevant home care or hospice agency. Certain agencies may decline admission if they perceive increased risk, such as no 24-hour care, perceived self-neglect, and limited instrumental support. During this meeting, HCPs discuss risk mitigation strategies identified in Step 4 and create a plan to propose to patients and families.
Step 6: Meet with patient, HCA, and family members. In addition to sharing information about prognosis, assessing caregiver capabilities and burden can guide conversations about discharge. The discharge plan should be determined through shared decision making.11 If the patient lacks capacity regarding disposition planning, this should be shared with the HCA. However, even when patients lack capacity, it is important to continue to engage them to understand their goals and preferences.
Step 7: Maximize risk mitigation strategies. If a moderate- or high-risk discharge is requested, the health care team should maximize risk mitigation strategies. For low-risk discharges, risk mitigation strategies can still promote safety, especially since risk increases as patients progress toward EOL. In some instances, patients, their HCAs, or caregivers may decline all risk mitigation strategies despite best efforts to communicate and negotiate options. In such circumstances, we recommend discussing the case with the outpatient team for a warm handoff. HCPs should also document all efforts (helpful from a legal standpoint as well as for the patient’s future treatment teams) and respect the decision to discharge home.
Applying the Framework
Our patient Joe provides a good illustration of how to implement this EOL framework. He was deemed to have the capacity to make decisions regarding discharge (Step 1). We determined his risk factors and protective factors for discharge (Step 2). His poor functional status, limited instrumental support, heavy alcohol use, rejection of home services, and communication barriers due to severe hearing impairment all increased his risk. Protective factors included an appreciation of functional limitations, intact cognition, and an involved HCA. Based on his limited instrumental support and poor function but good insight into limitations, discharge home was deemed to be of moderate risk (Step 3). Although risk factors such as alcohol use and severe hearing impairment could have raised his level to high risk, we felt that his involved HCA maintained him in the moderate-risk category.
We worked with the hospitalist team, PT, and audiology to identify multiple risk mitigation strategies: frequent phone calls between the HCA and outpatient palliative care team, home PT to improve transfers from bed to bedside commode, home nursing services either through a routine agency or hospice, and hearing aids for better communication (Steps 4 and 5). We then proposed these strategies to Joe and his HCA (Step 6). Due to concerns about infringement on his independence, Joe declined all home services but agreed to twice-daily check-ins by his HCA, frequent communication between his HCA and our team, and new hearing aids.
Joe returned home with the agreed-upon risk mitigation strategies in place (Step 7). Despite clinicians’ original reservations about sending Joe home without formal services, his HCA maintained close contact with our team, noting that Joe remained stable and happy to be at home in the months following discharge.
Conclusions
Fortunately, VA HCPs operate in an integrated health care system with access to psychological, social, and at-home medical support that can help mitigate risks. Still, we have benefitted from having a tool to help us evaluate risk systematically. Even if patients, families, and HCPs disagree on ideal discharge plans, this tool helps clinicians approach discharges methodically while maintaining open communication and partnership with patients. In doing so, our framework reflects the shift in medical culture from a patriarchal approach to shared decision-making practices regarding all aspects of medical care. Furthermore, we hope that this can help reduce clinician moral distress stemming from these challenging cases.
Future research on best practices for discharge risk assessment and optimizing home safety are needed. We also hope to evaluate the impact and effectiveness of our framework through interviews with key stakeholders. For Joe and other veterans like him, where to spend their final days may be the last important decision they make in life, and our framework allows for their voices to be better heard throughout the decision-making process.
Acknowledgments
We thank Brooke Lifland, MD, for her theoretical contributions to the concept behind this paper.
Sometimes a patient at the end of life (EOL) just wants to go home. We recently treated such a patient, “Joe,” a 66-year-old veteran with end-stage chronic obstructive pulmonary disorder (COPD), severe hearing loss, and heavy alcohol use. A neighbor brought Joe to the hospital when he developed a urinary tract infection. Before hospitalization, Joe spent his days in bed. His neighbor was his designated health care agent (HCA) and caregiver, dropping off meals and bringing Joe to medical appointments. Joe had no other social support. In the hospital, Joe could not participate in physical therapy (PT) evaluations due to severe dyspnea on exertion. He was recommended for home PT, a home health aide, and home nursing, but Joe declined these services out of concern for encroachment on his independence. Given his heavy alcohol use, limited support, and functional limitations, the hospitalist team felt that Joe would be best served in a skilled nursing facility. As the palliative care team, we were consulted and felt that he was eligible for hospice. Joe simply wanted to go home.
Many patients like Joe experience functional decline at EOL, leading to increased care needs and transitions between sites of care.1 Some hospitalized patients at EOL want to transition directly to home, but due to their limited functioning and social support, discharge home may be deemed unsafe by health care professionals (HCPs). Clinicians then face the difficult balancing act of honoring patient wishes and avoiding a bad outcome. For patients at EOL, issues of capacity and risk become particularly salient. Furthermore, the unique structure of the US Department of Veterans Affairs (VA) health system and the psychosocial needs of some veterans add additional considerations for complex EOL discharges.2
End-of-life Decision Making
While patients may express strong preferences regarding their health care, their decision-making ability may worsen as they approach EOL. Contributing factors include older age, effects of hospitalization, treatment adverse effects, and comorbidities, including cognitive impairment. Studies of terminally ill patients show high rates of impaired decisional capacity.3,4 It is critical to assess capacity as part of discharge planning. Even when patients have the capacity, families and caregivers have an important voice, since they are often instrumental in maintaining patients at home.
Defining Risk
Determining whether a discharge is risky or unsafe is highly subjective, with differing opinions among clinicians and between patients and clinicians.5-7 In a qualitative study by Coombs and colleagues, HCPs tended toward a risk-averse approach to discharge decisions, sometimes favoring discharge to care facilities despite patient preferences.6 This approach also reflects pressures from the health care system to decrease the length of stay and reduce readmissions, important metrics for patient care and cost containment. However, keeping patients hospitalized or in nursing facilities does not completely mitigate risks (eg, falls) and carries other hazards (eg, nosocomial infections), as highlighted during the COVID-19 pandemic.7,8 The prospect of malpractice lawsuits and HCP moral distress about perceived risky home situations can also understandably affect decision making.
At the same time, risk calculation changes depending on the patient’s clinical status and priorities. Coombs and colleagues found that in contrast to clinicians, patients nearing EOL are willing to accept increasing risks and suboptimal living conditions to remain at home.6 What may be intolerable for a younger, healthier patient with a long life expectancy may be acceptable for someone who is approaching EOL. In our framework, a risky home discharge at EOL is considered one in which other adverse events, such as falls or inadequate symptom management, are likely.
Ethical Considerations
Unsafe discharges are challenging in part because some of the pillars of medical ethics can conflict. Prior articles have analyzed the ethical concerns of unsafe discharges in detail.9-11 Briefly, when patients wish to return home against initial medical recommendations, treatment teams may focus on the principles of beneficence and nonmaleficence, as exemplified by the desire to minimize harm, and justice, in which clinicians consider resource allocation and risks that a home discharge poses to family members, caregivers, and home health professionals. However, autonomy is important to consider as well. The concept of dignity of risk highlights the imperative to respect others’ decisions even when they increase the chance of harm, particularly given the overall shift in medicine from paternalism to shared decision making.12 Accommodating patient choice in how and where health care is received allows patients to regain some control over their lives, thereby enhancing their quality of life and promoting patient dignity, especially in their remaining days.13
Discharge Risk Framework
Our risk assessment framework helps clinicians more objectively identify factors that increase or decrease risk, inform discharge planning, partner with patients and families, give patients a prominent role in EOL decisions, and mitigate the risk of a bad outcome. This concept has been used in psychiatry, in which formal suicide assessment includes identifying risk factors and protective factors to estimate suicide risk and determine interventions.14 Similar to suicide risk estimation, this framework is based on clinical judgment rather than a specific calculation.
While this framework serves as a guide for determining and mitigating risk, we encourage teams to consider legal or ethical consultations in challenging cases, such as those in which patients lack both capacity and an involved HCA.
Step 1: Determine the patient’s capacity regarding disposition planning. Patients at EOL are at a higher risk of impaired decision-making capabilities; therefore, capacity evaluation is a critical step.
Step 2: Identify risk factors and protective factors for discharge home. Risk factors are intrinsic and extrinsic factors that increase risk such as functional or sensory impairments. Protective factors are intrinsic and extrinsic factors that decrease risk, including a good understanding of illness and consistent connection with the health care system (Table 1).
Step 3: Determine discharge to home risk level based on identified risk factors and protective factors. Patients may be at low, moderate, or high risk of having an adverse event, such as a fall or inadequate symptom control (Table 2).
Step 4: Identify risk mitigation strategies. These should be tailored to the patient based on the factors identified in Step 2. Examples include home nursing and therapy, mental health treatment, a medical alert system, and frequent contact between the patient and health care team.
Step 5: Meet with inpatient and outpatient HCP teams. Meetings should include the primary care professional (PCP) or relevant subspecialist, such as an oncologist for patients with cancer. For veterans receiving care solely at a local VA medical center, this can be easier to facilitate, but for veterans who receive care through both VA and non-VA systems, this step may require additional coordination. We also recommend including interdisciplinary team members, such as social workers, case managers, and the relevant home care or hospice agency. Certain agencies may decline admission if they perceive increased risk, such as no 24-hour care, perceived self-neglect, and limited instrumental support. During this meeting, HCPs discuss risk mitigation strategies identified in Step 4 and create a plan to propose to patients and families.
Step 6: Meet with patient, HCA, and family members. In addition to sharing information about prognosis, assessing caregiver capabilities and burden can guide conversations about discharge. The discharge plan should be determined through shared decision making.11 If the patient lacks capacity regarding disposition planning, this should be shared with the HCA. However, even when patients lack capacity, it is important to continue to engage them to understand their goals and preferences.
Step 7: Maximize risk mitigation strategies. If a moderate- or high-risk discharge is requested, the health care team should maximize risk mitigation strategies. For low-risk discharges, risk mitigation strategies can still promote safety, especially since risk increases as patients progress toward EOL. In some instances, patients, their HCAs, or caregivers may decline all risk mitigation strategies despite best efforts to communicate and negotiate options. In such circumstances, we recommend discussing the case with the outpatient team for a warm handoff. HCPs should also document all efforts (helpful from a legal standpoint as well as for the patient’s future treatment teams) and respect the decision to discharge home.
Applying the Framework
Our patient Joe provides a good illustration of how to implement this EOL framework. He was deemed to have the capacity to make decisions regarding discharge (Step 1). We determined his risk factors and protective factors for discharge (Step 2). His poor functional status, limited instrumental support, heavy alcohol use, rejection of home services, and communication barriers due to severe hearing impairment all increased his risk. Protective factors included an appreciation of functional limitations, intact cognition, and an involved HCA. Based on his limited instrumental support and poor function but good insight into limitations, discharge home was deemed to be of moderate risk (Step 3). Although risk factors such as alcohol use and severe hearing impairment could have raised his level to high risk, we felt that his involved HCA maintained him in the moderate-risk category.
We worked with the hospitalist team, PT, and audiology to identify multiple risk mitigation strategies: frequent phone calls between the HCA and outpatient palliative care team, home PT to improve transfers from bed to bedside commode, home nursing services either through a routine agency or hospice, and hearing aids for better communication (Steps 4 and 5). We then proposed these strategies to Joe and his HCA (Step 6). Due to concerns about infringement on his independence, Joe declined all home services but agreed to twice-daily check-ins by his HCA, frequent communication between his HCA and our team, and new hearing aids.
Joe returned home with the agreed-upon risk mitigation strategies in place (Step 7). Despite clinicians’ original reservations about sending Joe home without formal services, his HCA maintained close contact with our team, noting that Joe remained stable and happy to be at home in the months following discharge.
Conclusions
Fortunately, VA HCPs operate in an integrated health care system with access to psychological, social, and at-home medical support that can help mitigate risks. Still, we have benefitted from having a tool to help us evaluate risk systematically. Even if patients, families, and HCPs disagree on ideal discharge plans, this tool helps clinicians approach discharges methodically while maintaining open communication and partnership with patients. In doing so, our framework reflects the shift in medical culture from a patriarchal approach to shared decision-making practices regarding all aspects of medical care. Furthermore, we hope that this can help reduce clinician moral distress stemming from these challenging cases.
Future research on best practices for discharge risk assessment and optimizing home safety are needed. We also hope to evaluate the impact and effectiveness of our framework through interviews with key stakeholders. For Joe and other veterans like him, where to spend their final days may be the last important decision they make in life, and our framework allows for their voices to be better heard throughout the decision-making process.
Acknowledgments
We thank Brooke Lifland, MD, for her theoretical contributions to the concept behind this paper.
1. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US); March 19, 2015.
2. Casarett D, Pickard A, Amos Bailey F, et al. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement. J Pain Symptom Manage. 2008;35(2):115-125. doi:10.1016/j.jpainsymman.2007.03.008
3. Kolva E, Rosenfeld B, Brescia R, Comfort C. Assessing decision-making capacity at end of life. Gen Hosp Psychiatry. 2014;36(4):392-397. doi:10.1016/j.genhosppsych.2014.02.013
4. Kolva E, Rosenfeld B, Saracino R. Assessing the decision-making capacity of terminally ill patients with cancer. Am J Geriatr Psychiatry. 2018;26(5):523-531. doi:10.1016/j.jagp.2017.11.012
5. Macmillan MS. Hospital staff’s perceptions of risk associated with the discharge of elderly people from acute hospital care. J Adv Nurs. 1994;19(2):249-256. doi:10.1111/j.1365-2648.1994.tb01078.x
6. Coombs MA, Parker R, de Vries K. Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making. Palliat Med. 2017;31(7):617-624. doi:10.1177/0269216316673476
7. Hyslop B. ‘Not safe for discharge’? Words, values, and person-centred care. Age Ageing. 2020;49(3):334-336. doi:10.1093/ageing/afz170
8. Goodacre S. Safe discharge: an irrational, unhelpful and unachievable concept. Emerg Med J. 2006;23(10):753-755. doi:10.1136/emj.2006.037903
9. Swidler RN, Seastrum T, Shelton W. Difficult hospital inpatient discharge decisions: ethical, legal and clinical practice issues. Am J Bioeth. 2007;7(3):23-28. doi:10.1080/15265160601171739
10. Hill J, Filer W. Safety and ethical considerations in discharging patients to suboptimal living situations. AMA J Ethics. 2015;17(6):506-510. Published 2015 Jun 1. doi:10.1001/journalofethics.2015.17.6.ecas2-1506
11. West JC. What is an ethically informed approach to managing patient safety risk during discharge planning?. AMA J Ethics. 2020;22(11):E919-E923. Published 2020 Nov 1. doi:10.1001/amajethics.2020.919
12. Mukherjee D. Discharge decisions and the dignity of risk. Hastings Cent Rep. 2015;45(3):7-8. doi:10.1002/hast.441
13. Wheatley VJ, Baker JI. “Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care. Postgrad Med J. 2007;83(984):643-648. doi:10.1136/pgmj.2007.058487
14. Work Group on Suicidal Behaviors. Practice guideline for the assessment and treatment of patients with suicidal behaviors. Am J Psychiatry. 2003;160(suppl 11):1-60.
1. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US); March 19, 2015.
2. Casarett D, Pickard A, Amos Bailey F, et al. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement. J Pain Symptom Manage. 2008;35(2):115-125. doi:10.1016/j.jpainsymman.2007.03.008
3. Kolva E, Rosenfeld B, Brescia R, Comfort C. Assessing decision-making capacity at end of life. Gen Hosp Psychiatry. 2014;36(4):392-397. doi:10.1016/j.genhosppsych.2014.02.013
4. Kolva E, Rosenfeld B, Saracino R. Assessing the decision-making capacity of terminally ill patients with cancer. Am J Geriatr Psychiatry. 2018;26(5):523-531. doi:10.1016/j.jagp.2017.11.012
5. Macmillan MS. Hospital staff’s perceptions of risk associated with the discharge of elderly people from acute hospital care. J Adv Nurs. 1994;19(2):249-256. doi:10.1111/j.1365-2648.1994.tb01078.x
6. Coombs MA, Parker R, de Vries K. Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making. Palliat Med. 2017;31(7):617-624. doi:10.1177/0269216316673476
7. Hyslop B. ‘Not safe for discharge’? Words, values, and person-centred care. Age Ageing. 2020;49(3):334-336. doi:10.1093/ageing/afz170
8. Goodacre S. Safe discharge: an irrational, unhelpful and unachievable concept. Emerg Med J. 2006;23(10):753-755. doi:10.1136/emj.2006.037903
9. Swidler RN, Seastrum T, Shelton W. Difficult hospital inpatient discharge decisions: ethical, legal and clinical practice issues. Am J Bioeth. 2007;7(3):23-28. doi:10.1080/15265160601171739
10. Hill J, Filer W. Safety and ethical considerations in discharging patients to suboptimal living situations. AMA J Ethics. 2015;17(6):506-510. Published 2015 Jun 1. doi:10.1001/journalofethics.2015.17.6.ecas2-1506
11. West JC. What is an ethically informed approach to managing patient safety risk during discharge planning?. AMA J Ethics. 2020;22(11):E919-E923. Published 2020 Nov 1. doi:10.1001/amajethics.2020.919
12. Mukherjee D. Discharge decisions and the dignity of risk. Hastings Cent Rep. 2015;45(3):7-8. doi:10.1002/hast.441
13. Wheatley VJ, Baker JI. “Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care. Postgrad Med J. 2007;83(984):643-648. doi:10.1136/pgmj.2007.058487
14. Work Group on Suicidal Behaviors. Practice guideline for the assessment and treatment of patients with suicidal behaviors. Am J Psychiatry. 2003;160(suppl 11):1-60.
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<root generator="drupal.xsl" gversion="1.7"> <header> <fileName>1123 FED EOL</fileName> <TBEID>0C02E7CC.SIG</TBEID> <TBUniqueIdentifier>NJ_0C02E7CC</TBUniqueIdentifier> <newsOrJournal>Journal</newsOrJournal> <publisherName>Frontline Medical Communications Inc.</publisherName> <storyname/> <articleType>1</articleType> <TBLocation>Copyfitting-FED</TBLocation> <QCDate/> <firstPublished>20231103T223641</firstPublished> <LastPublished>20231103T223641</LastPublished> <pubStatus qcode="stat:"/> <embargoDate/> <killDate/> <CMSDate>20231103T223641</CMSDate> <articleSource/> <facebookInfo/> <meetingNumber/> <byline/> <bylineText>Jessica X. Zuo, MDa,b; Andrea Ruskin, MDc; Margaret R. Bauer, PhDc</bylineText> <bylineFull/> <bylineTitleText/> <USOrGlobal/> <wireDocType/> <newsDocType/> <journalDocType/> <linkLabel/> <pageRange/> <citation/> <quizID/> <indexIssueDate/> <itemClass qcode="ninat:text"/> <provider qcode="provider:"> <name/> <rightsInfo> <copyrightHolder> <name/> </copyrightHolder> <copyrightNotice/> </rightsInfo> </provider> <abstract/> <metaDescription>Sometimes a patient at the end of life (EOL) just wants to go home. We recently treated such a patient, “Joe,” a 66-year-old veteran with end-stage chronic obst</metaDescription> <articlePDF/> <teaserImage/> <title>Who Gets to Determine Whether Home Is “Unsafe” at the End of Life?</title> <deck/> <eyebrow>Commentary</eyebrow> <disclaimer/> <AuthorList/> <articleURL/> <doi/> <pubMedID/> <publishXMLStatus/> <publishXMLVersion>1</publishXMLVersion> <useEISSN>0</useEISSN> <urgency/> <pubPubdateYear>2023</pubPubdateYear> <pubPubdateMonth>November</pubPubdateMonth> <pubPubdateDay/> <pubVolume>40</pubVolume> <pubNumber>11</pubNumber> <wireChannels/> <primaryCMSID/> <CMSIDs> <CMSID>2951</CMSID> <CMSID>3639</CMSID> </CMSIDs> <keywords/> <seeAlsos/> <publications_g> <publicationData> <publicationCode>FED</publicationCode> <pubIssueName>November 2023</pubIssueName> <pubArticleType>Feature Articles | 3639</pubArticleType> <pubTopics/> <pubCategories/> <pubSections> <pubSection>Feature | 2951<pubSubsection/></pubSection> </pubSections> <journalTitle>Fed Pract</journalTitle> <journalFullTitle>Federal Practitioner</journalFullTitle> <copyrightStatement>Copyright 2017 Frontline Medical Communications Inc., Parsippany, NJ, USA. All rights reserved.</copyrightStatement> </publicationData> </publications_g> <publications> <term canonical="true">16</term> </publications> <sections> <term canonical="true">52</term> </sections> <topics> <term canonical="true">223</term> </topics> <links/> </header> <itemSet> <newsItem> <itemMeta> <itemRole>Main</itemRole> <itemClass>text</itemClass> <title>Who Gets to Determine Whether Home Is “Unsafe” at the End of Life?</title> <deck/> </itemMeta> <itemContent> <p class="abstract"><b>Background: </b>At the end of life, some patients wish to be discharged directly home from the hospital, but health care teams may consider this unsafe, raising concerns for capacity and risk. However, defining risk is subjective and impacted by values, preferences, and clinical status. Accommodating patient preferences in discharge destinations can promote autonomy, dignity, and quality of life at the end of life.<br/><br/><b>Observations: </b>We developed a risk assessment framework to help clinicians objectively identify risk factors and protective factors and develop a comprehensive discharge plan. We applied this framework to a veteran nearing the end of life and he was able to successfully return home from the hospital.<b>Conclusions: </b>Approaching end-of-life discharges with a framework can inform discharge planning and lessen the risk of adverse events. Importantly, this framework can help clinicians communicate better and partner with patients and their loved ones in prioritizing patient values and preferences.</p> <p><span class="Drop">S</span>ometimes a patient at the end of life (EOL) just wants to go home. We recently treated such a patient, “Joe,” a 66-year-old veteran with end-stage chronic obstructive pulmonary disorder (COPD), severe hearing loss, and heavy alcohol use. A neighbor brought Joe to the hospital when he developed a urinary tract infection. Before hospitalization, Joe spent his days in bed. His neighbor was his designated health care agent (HCA) and caregiver, dropping off meals and bringing Joe to medical appointments. Joe had no other social support. In the hospital, Joe could not participate in physical therapy (PT) evaluations due to severe dyspnea on exertion. He was recommended for home PT, a home health aide, and home nursing, but Joe declined these services out of concern for encroachment on his independence. Given his heavy alcohol use, limited support, and functional limitations, the hospitalist team felt that Joe would be best served in a skilled nursing facility. As the palliative care team, we were consulted and felt that he was eligible for hospice. Joe simply wanted to go home.</p> <p>Many patients like Joe experience functional decline at EOL, leading to increased care needs and transitions between sites of care.<sup>1</sup> Some hospitalized patients at EOL want to transition directly to home, but due to their limited functioning and social support, discharge home may be deemed unsafe by health care professionals (HCPs). Clinicians then face the difficult balancing act of honoring patient wishes and avoiding a bad outcome. For patients at EOL, issues of capacity and risk become particularly salient. Furthermore, the unique structure of the US Department of Veterans Affairs (VA) health system and the psychosocial needs of some veterans add additional considerations for complex EOL discharges.<sup>2</sup></p> <h2>End-of-life Decision Making</h2> <p>While patients may express strong preferences regarding their health care, their decision-making ability may worsen as they approach EOL. Contributing factors include older age, effects of hospitalization, treatment adverse effects, and comorbidities, including cognitive impairment. Studies of terminally ill patients show high rates of impaired decisional capacity.<sup>3,4</sup> It is critical to assess capacity as part of discharge planning. Even when patients have the capacity, families and caregivers have an important voice, since they are often instrumental in maintaining patients at home.</p> <h3>Defining Risk</h3> <p>Determining whether a discharge is risky or unsafe is highly subjective, with differing opinions among clinicians and between patients and clinicians.<sup>5-7</sup> In a qualitative study by Coombs and colleagues, HCPs tended toward a risk-averse approach to discharge decisions, sometimes favoring discharge to care facilities despite patient preferences.<sup>6</sup> This approach also reflects pressures from the health care system to decrease the length of stay and reduce readmissions, important metrics for patient care and cost containment. However, keeping patients hospitalized or in nursing facilities does not completely mitigate risks (eg, falls) and carries other hazards (eg, nosocomial infections), as highlighted during the COVID-19 pandemic.<sup>7,8</sup> The prospect of malpractice lawsuits and HCP moral distress about perceived risky home situations can also understandably affect decision making. </p> <p>At the same time, risk calculation changes depending on the patient’s clinical status and priorities. Coombs and colleagues found that in contrast to clinicians, patients nearing EOL are willing to accept increasing risks and suboptimal living conditions to remain at home.<sup>6</sup> What may be intolerable for a younger, healthier patient with a long life expectancy may be acceptable for someone who is approaching EOL. In our framework, a risky home discharge at EOL is considered one in which other adverse events, such as falls or inadequate symptom management, are likely.</p> <h3>Ethical Considerations</h3> <p>Unsafe discharges are challenging in part because some of the pillars of medical ethics can conflict. Prior articles have analyzed the ethical concerns of unsafe discharges in detail.<sup>9-11</sup> Briefly, when patients wish to return home against initial medical recommendations, treatment teams may focus on the principles of beneficence and nonmaleficence, as exemplified by the desire to minimize harm, and justice, in which clinicians consider resource allocation and risks that a home discharge poses to family members, caregivers, and home health professionals. However, autonomy is important to consider as well. The concept of dignity of risk highlights the imperative to respect others’ decisions even when they increase the chance of harm, particularly given the overall shift in medicine from paternalism to shared decision making.<sup>12</sup> Accommodating patient choice in how and where health care is received allows patients to regain some control over their lives, thereby enhancing their quality of life and promoting patient dignity, especially in their remaining days.<sup>13</sup> </p> <h2>Discharge Risk Framework </h2> <p>Our risk assessment framework helps clinicians more objectively identify factors that increase or decrease risk, inform discharge planning, partner with patients and families, give patients a prominent role in EOL decisions, and mitigate the risk of a bad outcome. This concept has been used in psychiatry, in which formal suicide assessment includes identifying risk factors and protective factors to estimate suicide risk and determine interventions.<sup>14</sup> Similar to suicide risk estimation, this framework is based on clinical judgment rather than a specific calculation.</p> <p>While this framework serves as a guide for determining and mitigating risk, we encourage teams to consider legal or ethical consultations in challenging cases, such as those in which patients lack both capacity and an involved HCA.</p> <p><b>Step 1: Determine the patient’s capacity regarding disposition planning.</b> Patients at EOL are at a higher risk of impaired decision-making capabilities; therefore, capacity evaluation is a critical step.<b>Step 2: Identify risk factors and protective factors for discharge home.</b> Risk factors are intrinsic and extrinsic factors that increase risk such as functional or sensory impairments. Protective factors are intrinsic and extrinsic factors that decrease risk, including a good understanding of illness and consistent connection with the health care system (Table 1).<b>Step 3: Determine discharge to home risk level based on identified risk factors and protective factors.</b> Patients may be at low, moderate, or high risk of having an adverse event, such as a fall or inadequate symptom control (Table 2).<br/><br/><b>Step 4: Identify risk mitigation strategies.</b> These should be tailored to the patient based on the factors identified in Step 2. Examples include home nursing and therapy, mental health treatment, a medical alert system, and frequent contact between the patient and health care team.<b>Step 5: Meet with inpatient and outpatient HCP teams.</b> Meetings should include the primary care professional (PCP) or relevant subspecialist, such as an oncologist for patients with cancer. For veterans receiving care solely at a local VA medical center, this can be easier to facilitate, but for veterans who receive care through both VA and non-VA systems, this step may require additional coordination. We also recommend including interdisciplinary team members, such as social workers, case managers, and the relevant home care or hospice agency. Certain agencies may decline admission if they perceive increased risk, such as no 24-hour care, perceived self-neglect, and limited instrumental support. During this meeting, HCPs discuss risk mitigation strategies identified in Step 4 and create a plan to propose to patients and families.<br/><br/><b>Step 6: Meet with patient, HCA, and family members.</b> In addition to sharing information about prognosis, assessing caregiver capabilities and burden can guide conversations about discharge. The discharge plan should be determined through shared decision making.<sup>11</sup> If the patient lacks capacity regarding disposition planning, this should be shared with the HCA. However, even when patients lack capacity, it is important to continue to engage them to understand their goals and preferences.<b>Step 7: Maximize risk mitigation strategies.</b> If a moderate- or high-risk discharge is requested, the health care team should maximize risk mitigation strategies. For low-risk discharges, risk mitigation strategies can still promote safety, especially since risk increases as patients progress toward EOL. In some instances, patients, their HCAs, or caregivers may decline all risk mitigation strategies despite best efforts to communicate and negotiate options. In such circumstances, we recommend discussing the case with the outpatient team for a warm handoff. HCPs should also document all efforts (helpful from a legal standpoint as well as for the patient’s future treatment teams) and respect the decision to discharge home.</p> <h3>Applying the Framework</h3> <p>Our patient Joe provides a good illustration of how to implement this EOL framework. He was deemed to have the capacity to make decisions regarding discharge (Step 1). We determined his risk factors and protective factors for discharge (Step 2). His poor functional status, limited instrumental support, heavy alcohol use, rejection of home services, and communication barriers due to severe hearing impairment all increased his risk. Protective factors included an appreciation of functional limitations, intact cognition, and an involved HCA. Based on his limited instrumental support and poor function but good insight into limitations, discharge home was deemed to be of moderate risk (Step 3). Although risk factors such as alcohol use and severe hearing impairment could have raised his level to high risk, we felt that his involved HCA maintained him in the moderate-risk category. </p> <p>We worked with the hospitalist team, PT, and audiology to identify multiple risk mitigation strategies: frequent phone calls between the HCA and outpatient palliative care team, home PT to improve transfers from bed to bedside commode, home nursing services either through a routine agency or hospice, and hearing aids for better communication (Steps 4 and 5). We then proposed these strategies to Joe and his HCA (Step 6). Due to concerns about infringement on his independence, Joe declined all home services but agreed to twice-daily check-ins by his HCA, frequent communication between his HCA and our team, and new hearing aids. <br/><br/>Joe returned home with the agreed-upon risk mitigation strategies in place (Step 7). Despite clinicians’ original reservations about sending Joe home without formal services, his HCA maintained close contact with our team, noting that Joe remained stable and happy to be at home in the months following discharge. </p> <h2>Conclusions</h2> <p>Fortunately, VA HCPs operate in an integrated health care system with access to psychological, social, and at-home medical support that can help mitigate risks. Still, we have benefitted from having a tool to help us evaluate risk systematically. Even if patients, families, and HCPs disagree on ideal discharge plans, this tool helps clinicians approach discharges methodically while maintaining open communication and partnership with patients. In doing so, our framework reflects the shift in medical culture from a patriarchal approach to shared decision-making practices regarding all aspects of medical care. Furthermore, we hope that this can help reduce clinician moral distress stemming from these challenging cases.</p> <p>Future research on best practices for discharge risk assessment and optimizing home safety are needed. We also hope to evaluate the impact and effectiveness of our framework through interviews with key stakeholders. For Joe and other veterans like him, where to spend their final days may be the last important decision they make in life, and our framework allows for their voices to be better heard throughout the decision-making process. </p> <h3> Acknowledgments </h3> <p> <em>We thank Brooke Lifland, MD, for her theoretical contributions to the concept behind this paper.</em> </p> <h3> Author affiliations </h3> <p> <em><sup>a</sup>University of Pennsylvania, Philadelphia<br/><br/><sup>b</sup>Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania<br/><br/><sup>c</sup>Veterans Affairs Connecticut Healthcare System, West Haven</em> </p> <h3> Author disclosures </h3> <p> <em>At the time of this work, Jessica Zuo was funded as a Geriatric Medicine Education Fellow by the Connecticut Older Adult Collaboration for Health 4M (COACH 4M) grant, a Geriatric Workforce Enhancement Program funded by the Health Resources and Services Administration (HRSA). The COACH 4M grant and HRSA had no role in the development of this work or the preparation of this manuscript. The authors report no actual or potential conflicts of interest with regard to this article.</em> </p> <h3> Disclaimer </h3> <p> <em>The opinions expressed herein are those of the authors and do not necessarily reflect those of <i>Federal Practitioner,</i> Frontline Medical Communications Inc., the US Government, or any of its agencies.</em> </p> <h3> Ethics and consent </h3> <p> <em>Verbal consent was obtained from the veteran reported.</em> </p> <h3> References </h3> <p class="reference"> 1. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. <i>Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life</i>. Washington (DC): National Academies Press (US); March 19, 2015.<br/><br/> 2. Casarett D, Pickard A, Amos Bailey F, et al. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement. <i>J Pain Symptom Manage</i>. 2008;35(2):115-125. doi:10.1016/j.jpainsymman.2007.03.008<br/><br/> 3. Kolva E, Rosenfeld B, Brescia R, Comfort C. Assessing decision-making capacity at end of life. <i>Gen Hosp Psychiatry</i>. 2014;36(4):392-397. doi:10.1016/j.genhosppsych.2014.02.013<br/><br/> 4. Kolva E, Rosenfeld B, Saracino R. Assessing the decision-making capacity of terminally ill patients with cancer. <i>Am J Geriatr Psychiatry</i>. 2018;26(5):523-531. doi:10.1016/j.jagp.2017.11.012<br/><br/> 5. Macmillan MS. Hospital staff’s perceptions of risk associated with the discharge of elderly people from acute hospital care. <i>J Adv Nurs</i>. 1994;19(2):249-256. doi:10.1111/j.1365-2648.1994.tb01078.x<br/><br/> 6. Coombs MA, Parker R, de Vries K. Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making. <i>Palliat Med</i>. 2017;31(7):617-624. doi:10.1177/0269216316673476<br/><br/> 7. Hyslop B. ‘Not safe for discharge’? Words, values, and person-centred care. <i>Age Ageing</i>. 2020;49(3):334-336. doi:10.1093/ageing/afz170<br/><br/> 8. Goodacre S. Safe discharge: an irrational, unhelpful and unachievable concept. <i>Emerg Med J</i>. 2006;23(10):753-755. doi:10.1136/emj.2006.037903<br/><br/> 9. Swidler RN, Seastrum T, Shelton W. Difficult hospital inpatient discharge decisions: ethical, legal and clinical practice issues. <i>Am J Bioeth</i>. 2007;7(3):23-28. doi:10.1080/15265160601171739<br/><br/>10. Hill J, Filer W. Safety and ethical considerations in discharging patients to suboptimal living situations. <i>AMA J Ethics</i>. 2015;17(6):506-510. Published 2015 Jun 1. doi:10.1001/journalofethics.2015.17.6.ecas2-1506<br/><br/>11. West JC. What is an ethically informed approach to managing patient safety risk during discharge planning?. <i>AMA J Ethics</i>. 2020;22(11):E919-E923. Published 2020 Nov 1. doi:10.1001/amajethics.2020.919<br/><br/>12. Mukherjee D. Discharge decisions and the dignity of risk. <i>Hastings Cent Rep</i>. 2015;45(3):7-8. doi:10.1002/hast.441<br/><br/>13. Wheatley VJ, Baker JI. “Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care. <i>Postgrad Med J</i>. 2007;83(984):643-648. doi:10.1136/pgmj.2007.058487<br/><br/>14. Work Group on Suicidal Behaviors. Practice guideline for the assessment and treatment of patients with suicidal behaviors. <i>Am J Psychiatry</i>. 2003;160(suppl 11):1-60.</p> </itemContent> </newsItem> </itemSet></root>
An Interdisciplinary Approach to Metastatic Pancreatic Cancer and Comorbid Opioid Use Disorder Treatment Within a VA Health Care System
A multidisciplinary approach provided safe and feasible cancer treatment in a patient with advanced pancreatic cancer and coexisting active substance use disorder.
Substance use disorders (SUDs) are an important but understudied aspect of treating patients diagnosed with cancer. Substance use can affect cancer treatment outcomes, including morbidity and mortality.1,2 Additionally, patients with cancer and SUD may have unique psychosocial needs that require close attention and management. There is a paucity of data regarding the best approach to treating such patients. For example, cocaine use may increase the cardiovascular and hematologic risk of some traditional chemotherapy agents.3,4 Newer targeted agents and immunotherapies remain understudied with respect to SUD risk.
Although the US Department of Veterans Affairs (VA) has established helpful clinical practice guidelines for the treatment of SUD, there are no guidelines for treating patients with SUD and cancer.5 Clinicians have limited confidence in treatment approach, and treatment is inconsistent among oncologists nationwide even within the same practice. Furthermore, it can be challenging to safely prescribe opioids for cancer-related pain in individuals with SUD. There is a high risk of SUD and mental health disorders in veterans, making this population particularly vulnerable. We report a case of a male with metastatic pancreatic cancer, severe opioid use disorder (OUD) and moderate cocaine use disorder (CUD) who received pain management and cancer treatment under the direction of a multidisciplinary team approach.
Case Report
A 63-year-old male with a medical history of HIV treated with highly active antiretroviral therapy (HAART), compensated cirrhosis, severe OUD, moderate CUD, and sedative use disorder in sustained remission was admitted to the West Haven campus of the VA Connecticut Healthcare System (VACHS) with abdominal pain, weight loss and fatigue. He used heroin 1 month prior to his admission and reported regular cocaine and marijuana use (Table 1). He was diagnosed with HIV in 1989, and his medical history included herpes zoster and oral candidiasis but no other opportunistic infections. Several months prior to this admission, he had an undetectable viral load and CD4 count of 688.
At the time of this admission, the patient was adherent to methadone treatment. He reported increased abdominal pain. Computed tomography (CT) showed a 2.4-cm mass in the pancreatic uncinate process, multiple liver metastases, retroperitoneal lymphadenopathy, and small lung nodules. A CT-guided liver biopsy showed adenocarcinoma consistent with a primary cancer of the pancreas. Given the complexity of the case, a multidisciplinary team approach was used to treat his cancer and the sequelae safely, including the oncology team, community living center team, palliative care team, and interprofessional opioid reassessment clinic team (ORC).
Cancer Treatment
Chemotherapy with FOLFIRINOX (leucovorin calcium, fluorouracil, irinotecan hydrochloride, and oxaliplatin) was recommended. The first cycle of treatment originally was planned for the outpatient setting, and a peripherally inserted central catheter (PICC) line was placed. However, after a urine toxicology test was positive for cocaine, the PICC line was removed due to concern for possible use of PICC line for nonprescribed substance use. The patient expressed suicidal ideation at the time and was admitted for psychiatric consult and pain control. Cycle 1 FOLFIRINOX was started during this admission. A PICC line was again put in place and then removed before discharge. A celiac plexus block was performed several days after this admission for pain control.
Given concern about cocaine use increasing the risk of cardiac toxicity with FOLFIRINOX treatment, treating providers sconsulted with the community living center (CLC) about possible admission for future chemotherapy administration and pain management. The CLC at VACHS has 38 beds for rehabilitation, long-term care, and hospice with the mission to restore each veteran to his or her highest level of well-being. After discussion with this patient and CLC staff, he agreed to a CLC admission. The patient agreed to remain in the facility, wear a secure care device, and not leave without staff accompaniment. He was able to obtain a 2-hour pass to pay bills and rent. During the 2 months he was admitted to the CLC he would present to the VACHS Cancer Center for chemotherapy every 2 weeks. He completed 6 cycles of chemotherapy while admitted. During the admission, he was transferred to active medical service for 2 days for fever and malaise, and then returned to the CLC. The patient elected to leave the CLC after 2 months as the inability to see close friends was interfering with his quality of life.
Upon being discharged from the CLC, shared decision making took place with the patient to establish a new treatment plan. In collaboration with the patient, a plan was made to admit him every 2 weeks for continued chemotherapy. A PICC line was placed on each day of admission and removed prior to discharge. It was also agreed that treatment would be delayed if a urine drug test was positive for cocaine on the morning of admission. The patient was also seen by ORC every 2 weeks after being discharged from the CLC.
Imaging after cycle 6 showed decreased size of liver metastases, retroperitoneal lymph nodes, and pancreas mass. Cancer antigen 19-9 (CA19-9) tumor marker was reduced from 3513 U/mL pretreatment to 50 U/mL after cycle 7. Chemotherapy cycle 7 was delayed 6 days due to active cocaine and heroin use. A repeat urine was obtained several days later, which was negative for cocaine, and he was admitted for cycle 7 chemotherapy. Using this treatment approach of admissions for every cycle, the patient was able to receive 11 cycles of FOLFIRINOX with clinical benefit.
Palliative Care/Pain Management
Safely treating the patient’s malignant pain in the context of his OUD was critically important. In order to do this the palliative care team worked closely alongside ORC, is a multidisciplinary team consisting of health care providers (HCPs) from addiction psychiatry, internal medicine, health psychology and pharmacy who are consulted to evaluate veterans’ current opioid regimens and make recommendations to optimize both safety and efficacy. ORC followed this particular veteran as an outpatient and consulted on pain issues during his admission. They recommended the continuation of methadone at 120 mg daily and increased oral oxycodone to 30 mg every 6 hours, and then further increased to 45 mg every 6 hours. He continued to have increased pain despite higher doses of oxycodone, and pain medication was changed to oral hydromorphone 28 mg every 6 hours with the continuation of methadone. ORC and the palliative care team obtained consent from the veteran and a release of Information form signed by the patient to contact his community methadone clinic for further collaboration around pain management throughout the time caring for the veteran.
Even with improvement in disease based on imaging and tumor markers, opioid medications could not be decreased in this case. This is likely in part due to the multidimensional nature of pain. Careful assessment of the biologic, emotional, social, and spiritual contributors to pain is needed in the management of pain, especially at end of life.6 Nonpharmacologic pain management strategies used in this case included a transcutaneous electrical nerve stimulation unit, moist heat, celiac plexus block, and emotional support.
Psychosocial Issues/Substance Use
Psychosocial support for the patient was provided by the interdisciplinary palliative care team and the ORC team in both the inpatient and outpatient settings. Despite efforts from case management to get the veteran home services once discharged from the CLC, he declined repeatedly. Thus, the CLC social worker obtained a guardian alert for the veteran on discharge.
Close outpatient follow-up for medical and psychosocial support was very critical. When an outpatient, the veteran was scheduled for biweekly appointments with palliative care or ORC. When admitted to the hospital, the palliative care team medical director and psychologist conducted joint visits with him. Although he denied depressed mood and anxiety throughout his treatment, he often reflected on regrets that he had as he faced the end of his life. Specifically, he shared thoughts about being estranged from his surviving brother given his long struggle with substance use. Although he did not think a relationship was possible with his brother at the end of life, he still cared deeply for him and wanted to make him aware of his pancreatic cancer diagnosis. This was particularly important to him because their late brother had also died of pancreatic cancer. It was the patient’s wish at the end of his life to alert his surviving brother of his diagnosis so he and his children could get adequate screening throughout their lives. Although he had spoken of this desire often, it wasn’t until his disease progressed and he elected to transition to hospice that he felt ready to write the letter. The palliative care team assisted the veteran in writing and mailing a letter to his brother informing him of his diagnosis and transition to hospice as well as communicating that his brother and his family had been in his thoughts at the end of his life. The patient’s brother received this letter and with assistance from the CLC social worker made arrangements to visit the veteran at bedside at the inpatient CLC hospice unit the final days of his life.
Discussion
There are very little data on the safety of cancer-directed therapy in patients with active SUD. The limited studies that have been done showed conflicting results.
A retrospective study among women with co-occurring SUD and locally advanced cervical cancer who were undergoing primary radiation therapy found that SUD was not associated with a difference in toxicity or survival outcomes.7 However, other research suggests that SUD may be associated with an increase in all-cause mortality as well as other adverse outcomes for patients and health care systems (eg, emergency department visits, hospitalizations).8 A retrospective study of patients with a history of SUD and nonsmall cell lung cancer showed that these patients had higher rates of depression, less family support, increased rates of missed appointments, more emergency department visits and more hospitalizations.9 Patients with chronic myeloid leukemia or myelodysplastic syndromes who had long-term cocaine use had a 6-fold increased risk of death, which was not found in patients who had long-term alcohol or marijuana use.2
The limited data highlight the need for careful consideration of ways to mitigate potentially adverse outcomes in this population while still providing clinically indicated cancer treatment. Integrated VA health care systems provide unique resources that can maximize veteran safety during cancer treatment. Utilization of VA resources and close interdisciplinary collaboration across VA HCPs can help to ensure equitable access to state-of-the-art cancer therapies for veterans with comorbid SUD.
VA Services for Patients With Comorbidities
This case highlights several distinct aspects of VA health care that make it possible to safely treat individuals with complex comorbidities. One important aspect of this was collaboration with the CLC to admit the veteran for his initial treatment after a positive cocaine test. CLC admission was nonpunitive and allowed ongoing involvement in the VA community. This provided an essential, safe, and structured environment in which 6 cycles of chemotherapy could be delivered.
Although the patient left the CLC after 2 months due to floor restrictions negatively impacting his quality of life and ability to spend time with close friends, several important events occurred during this stay. First, the patient established close relationships with the CLC staff and the palliative care team; both groups followed him throughout his inpatient and outpatient care. These relationships proved essential throughout his care as they were the foundation of difficult conversations about substance use, treatment adherence, and eventually, transition to hospice.
In addition, the opportunity to administer 6 cycles of chemotherapy at the CLC was enough to lead to clinical benefit and radiographic response to treatment. Clinical benefits while in the CLC included maintenance of a good appetite, 15-lb weight gain and preserved performance status (ECOG [Eastern Cooperative Group]-1), which allowed him to actively participate in multiple social and recreational activities while in the CLC. From early conversations, this patient was clear that he wanted treatment as long as his life could be prolonged with good quality of life. Having evidence of the benefit of treatment, at least initially, increased the patient’s confidence in treatment. There were a few conversations when the challenges of treatment mounted (eg, pain, needs for abstinence from cocaine prior to admission for chemotherapy, frequent doctor appointments), and the patient would remind himself of these data to recommit himself to treatment. The opportunity to admit him to the inpatient VA facility, including bed availability for 3 days during his treatment once he left the CLC was important. This plan to admit the patient following a negative urine toxicology test for cocaine was made collaboratively with the veteran and the oncology and palliative care teams. The plan allowed the patient to achieve his treatment goals while maintaining his safety and reducing theoretical cardiac toxicities with his cancer treatment.
Finally, the availability of a multidisciplinary team approach including palliative care, oncology, psychology, addiction medicine and addiction psychiatry, was critical for addressing the veteran’s malignant pain. Palliative care worked in close collaboration with the ORC to prescribe and renew pain medications. ORC offered ongoing consultation on pain management in the context of OUD. As the veteran’s cancer progressed and functional decline prohibited his daily attendance at the community methadone clinic, palliative care and ORC met with the methadone clinic to arrange a less frequent methadone pickup schedule (the patient previously needed daily pickup). Non-VA settings may not have access to these resources to safely treat the biopsychosocial issues that arise in complex cases.
Substance Use and Cancer Treatments
This case raises several critical questions for oncologic care. Cocaine and fluorouracil are both associated with cardiotoxicity, and many oncologists would not feel it is safe to administer a regimen containing fluorouracil to a patient with active cocaine use. The National Comprehensive Cancer Network (NCCN) panel recommends FOLFIRINOX as a preferred category 1 recommendation for first-line treatment of patients with advanced pancreas cancer with good performance status.10 This recommendation is based on the PRODIGE trial, which has shown improved overall survival (OS): 11.1 vs 6.8 months for patients who received single-agent gemcitabine.11 If patients are not candidates for FOLFIRINOX and have good performance status, the NCCN recommends gemcitabine plus albumin-bound paclitaxel with category 1 level of evidence based on the IMPACT trial, which showed improvement in OS (8.7 vs 6.6 months compared with single-agent gemcitabine).12
Some oncologists may have additional concerns administering fluorouracil treatment alternatives (such as gemcitabine and albumin-bound paclitaxel) to individuals with active SUD because of concerns about altered mental status impacting the ability to report important adverse effects. In the absence of sufficient data, HCPs must determine whether they feel it is safe to administer these agents in individuals with active cocaine use. However, denying these patients the possible benefits of standard-of-care life-prolonging therapies without established data raises concerns regarding the ethics of such practices. There is concern that the stigma surrounding cocaine use might contribute to withholding treatment, while treatment is continued for individuals taking prescribed stimulant medications that also have cardiotoxicity risks. VA health care facilities are uniquely situated to use all available resources to address these issues using interprofessional patient-centered care and determine the most optimal treatment based on a risk/benefit discussion between the patient and the HCP.
Similarly, this case also raised questions among HCPs about the safety of using an indwelling port for treatment in a patient with SUD. In the current case there was concern about keeping in a port for a patient with a history of IV drug use; therefore, a PICC line was initiated and removed at each admission. Without guidelines in these situations, HCPs are left to weigh the risks and benefits of using a port or a PICC for individuals with recent or current substance use without formal data, which can lead to inconsistent access to care. More guidance is needed for these situations.
SUD Screening
This case begs the question of whether oncologists are adequately screening for a range of SUDs, and when they encounter an issue, how they are addressing it. Many oncologists do not receive adequate training on assessment of current or recent substance use. There are health care and systems-level practices that may increase patient safety for individuals with ongoing substance use who are undergoing cancer treatment. Training on obtaining appropriate substance use histories, motivational interviewing to resolve ambivalence about substance use in the direction of change, and shared decision making about treatment options could increase confidence in understanding and addressing substance use issues. It is also important to educate oncologists on how to address patients who return to or continued substance use during treatment. In this case the collaboration from palliative care, psychology, addiction medicine, and addiction psychiatry through the ORC was essential in assisting with ongoing assessment of substance use, guiding difficult conversations about the impact of substance use on the treatment plan, and identifying risk-mitigation strategies. Close collaboration and full utilization of all VA resources allowed this patient to receive first-line treatment for pancreatic cancer in order to reach his goal of prolonging his life while maintaining acceptable quality of life. Table 2 provides best practices for management of patients with comorbid SUD and cancer.
More research is needed into cancer treatment for patients with SUD, especially in the current era of cancer care using novel cancer treatments leading to significantly improved survival in many cancer types. Ideally, oncologists should be routinely or consistently screening patients for substance use, including alcohol. The patient should participate in this decision-making process after being educated about the risks and benefits. These patients can be followed using a multimodal approach to increase their rates of success and improve their quality of life. Although the literature is limited and no formal guidelines are available, VA oncologists are fortunate to have a range of resources available to them to navigate these difficult cases. Veterans have elevated rates of SUD, making this a critical issue to consider in the VA.13 It is the hope that this case can highlight how to take advantage of the many VA resources in order to ensure equitable cancer care for all veterans.
Conclusions
This case demonstrates that cancer-directed treatment is safe and feasible in a patient with advanced pancreatic cancer and coexisting active SUD by using a multidisciplinary approach. The multidisciplinary team included palliative care, oncology, psychology, addiction medicine, and addiction psychiatry. Critical steps for a successful outcome include gathering history about SUD; motivational interviewing to resolve ambivalence about treatment for SUD; shared decision making about cancer treatment; and risk-reduction strategies in pain and SUD management.
Treatment advancements in many cancer types have led to significantly longer survival, and it is critical to develop safe protocols to treat patients with active SUD so they also can derive benefit from these very significant medical advancements.
Acknowledgments
Michal Rose, MD, Director of VACHS Cancer Center, and Chandrika Kumar, MD, Director of VACHS Community Living Center, for their collaboration in care for this veteran.
1. Chang G, Meadows ME, Jones JA, Antin JH, Orav EJ. Substance use and survival after treatment for chronic myelogenous leukemia (CML) or myelodysplastic syndrome (MDS). Am J Drug Alcohol Ab. 2010;36(1):1-6. doi:10.3109/00952990903490758
2. Stagno S, Busby K, Shapiro A, Kotz M. Patients at risk: addressing addiction in patients undergoing hematopoietic SCT. Bone Marrow Transplant. 2008;42(4):221-226. doi:10.1038/bmt.2008.211
3. Arora NP. Cutaneous vasculopathy and neutropenia associated with levamisole-adulterated cocaine. Am J Med Sci. 2013;345(1):45-51. doi:10.1097/MAJ.0b013e31825b2b50
4. Schwartz BG, Rezkalla S, Kloner RA. Cardiovascular effects of cocaine. Circulation. 2010;122(24):2558-2569. doi:10.1161/CIRCULATIONAHA.110.940569
5. US Department of Veterans Affairs, US Department of Defense. VA/DoD clinical practice guideline for the management of substance use disorders. Published 2015. Accessed July 8, 2021. https://www.healthquality.va.gov/guidelines/MH/sud/VADODSUDCPGRevised22216.pdf
6. Mehta A, Chan LS. Understanding of the concept of “total pain”: a prerequisite for pain control. J Hosp Palliat Nurs. 2008;10(1):26-32. doi:10.1097/01.NJH.0000306714.50539.1a
7. Rubinsak LA, Terplan M, Martin CE, Fields EC, McGuire WP, Temkin SM. Co-occurring substance use disorder: The impact on treatment adherence in women with locally advanced cervical cancer. Gynecol Oncol Rep. 2019;28:116-119. Published 2019 Mar 27. doi:10.1016/j.gore.2019.03.016
8. Chhatre S, Metzger DS, Malkowicz SB, Woody G, Jayadevappa R. Substance use disorder and its effects on outcomes in men with advanced-stage prostate cancer. Cancer. 2014;120(21):3338-3345. doi:10.1002/cncr.28861
9. Concannon K, Thayer JH, Hicks R, et al. Outcomes among patients with a history of substance abuse in non-small cell lung cancer: a county hospital experience. J Clin Onc. 2019;37(15)(suppl):e20031-e20031. doi:10.1200/JCO.2019.37.15
10. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: pancreatic adenocarcinoma. Version 2.2021. Updated February 25, 2021. Accessed July 8, 2021. https://www.nccn.org/professionals/physician_gls/pdf/pancreatic.pdf
11. Conroy T, Desseigne F, Ychou M, et al. FOLFIRINOX versus gemcitabine for metastatic pancreatic cancer. N Engl J Med. 2011;364(19):1817-1825. doi:10.1056/NEJMoa1011923
12. Von Hoff DD, Ervin T, Arena FP, et al. Increased survival in pancreatic cancer with nab-paclitaxel plus gemcitabine. N Engl J Med. 2013;369(18):1691-1703. doi:10.1056/NEJMoa1304369
13. Seal KH, Cohen G, Waldrop A, Cohen BE, Maguen S, Ren L. Substance use disorders in Iraq and Afghanistan veterans in VA healthcare, 2001-2010: Implications for screening, diagnosis and treatment. Drug Alcohol Depend. 2011;116(1-3):93-101. doi:10.1016/j.drugalcdep.2010.11.027
14. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed. American Psychiatric Association; 2013.
A multidisciplinary approach provided safe and feasible cancer treatment in a patient with advanced pancreatic cancer and coexisting active substance use disorder.
A multidisciplinary approach provided safe and feasible cancer treatment in a patient with advanced pancreatic cancer and coexisting active substance use disorder.
Substance use disorders (SUDs) are an important but understudied aspect of treating patients diagnosed with cancer. Substance use can affect cancer treatment outcomes, including morbidity and mortality.1,2 Additionally, patients with cancer and SUD may have unique psychosocial needs that require close attention and management. There is a paucity of data regarding the best approach to treating such patients. For example, cocaine use may increase the cardiovascular and hematologic risk of some traditional chemotherapy agents.3,4 Newer targeted agents and immunotherapies remain understudied with respect to SUD risk.
Although the US Department of Veterans Affairs (VA) has established helpful clinical practice guidelines for the treatment of SUD, there are no guidelines for treating patients with SUD and cancer.5 Clinicians have limited confidence in treatment approach, and treatment is inconsistent among oncologists nationwide even within the same practice. Furthermore, it can be challenging to safely prescribe opioids for cancer-related pain in individuals with SUD. There is a high risk of SUD and mental health disorders in veterans, making this population particularly vulnerable. We report a case of a male with metastatic pancreatic cancer, severe opioid use disorder (OUD) and moderate cocaine use disorder (CUD) who received pain management and cancer treatment under the direction of a multidisciplinary team approach.
Case Report
A 63-year-old male with a medical history of HIV treated with highly active antiretroviral therapy (HAART), compensated cirrhosis, severe OUD, moderate CUD, and sedative use disorder in sustained remission was admitted to the West Haven campus of the VA Connecticut Healthcare System (VACHS) with abdominal pain, weight loss and fatigue. He used heroin 1 month prior to his admission and reported regular cocaine and marijuana use (Table 1). He was diagnosed with HIV in 1989, and his medical history included herpes zoster and oral candidiasis but no other opportunistic infections. Several months prior to this admission, he had an undetectable viral load and CD4 count of 688.
At the time of this admission, the patient was adherent to methadone treatment. He reported increased abdominal pain. Computed tomography (CT) showed a 2.4-cm mass in the pancreatic uncinate process, multiple liver metastases, retroperitoneal lymphadenopathy, and small lung nodules. A CT-guided liver biopsy showed adenocarcinoma consistent with a primary cancer of the pancreas. Given the complexity of the case, a multidisciplinary team approach was used to treat his cancer and the sequelae safely, including the oncology team, community living center team, palliative care team, and interprofessional opioid reassessment clinic team (ORC).
Cancer Treatment
Chemotherapy with FOLFIRINOX (leucovorin calcium, fluorouracil, irinotecan hydrochloride, and oxaliplatin) was recommended. The first cycle of treatment originally was planned for the outpatient setting, and a peripherally inserted central catheter (PICC) line was placed. However, after a urine toxicology test was positive for cocaine, the PICC line was removed due to concern for possible use of PICC line for nonprescribed substance use. The patient expressed suicidal ideation at the time and was admitted for psychiatric consult and pain control. Cycle 1 FOLFIRINOX was started during this admission. A PICC line was again put in place and then removed before discharge. A celiac plexus block was performed several days after this admission for pain control.
Given concern about cocaine use increasing the risk of cardiac toxicity with FOLFIRINOX treatment, treating providers sconsulted with the community living center (CLC) about possible admission for future chemotherapy administration and pain management. The CLC at VACHS has 38 beds for rehabilitation, long-term care, and hospice with the mission to restore each veteran to his or her highest level of well-being. After discussion with this patient and CLC staff, he agreed to a CLC admission. The patient agreed to remain in the facility, wear a secure care device, and not leave without staff accompaniment. He was able to obtain a 2-hour pass to pay bills and rent. During the 2 months he was admitted to the CLC he would present to the VACHS Cancer Center for chemotherapy every 2 weeks. He completed 6 cycles of chemotherapy while admitted. During the admission, he was transferred to active medical service for 2 days for fever and malaise, and then returned to the CLC. The patient elected to leave the CLC after 2 months as the inability to see close friends was interfering with his quality of life.
Upon being discharged from the CLC, shared decision making took place with the patient to establish a new treatment plan. In collaboration with the patient, a plan was made to admit him every 2 weeks for continued chemotherapy. A PICC line was placed on each day of admission and removed prior to discharge. It was also agreed that treatment would be delayed if a urine drug test was positive for cocaine on the morning of admission. The patient was also seen by ORC every 2 weeks after being discharged from the CLC.
Imaging after cycle 6 showed decreased size of liver metastases, retroperitoneal lymph nodes, and pancreas mass. Cancer antigen 19-9 (CA19-9) tumor marker was reduced from 3513 U/mL pretreatment to 50 U/mL after cycle 7. Chemotherapy cycle 7 was delayed 6 days due to active cocaine and heroin use. A repeat urine was obtained several days later, which was negative for cocaine, and he was admitted for cycle 7 chemotherapy. Using this treatment approach of admissions for every cycle, the patient was able to receive 11 cycles of FOLFIRINOX with clinical benefit.
Palliative Care/Pain Management
Safely treating the patient’s malignant pain in the context of his OUD was critically important. In order to do this the palliative care team worked closely alongside ORC, is a multidisciplinary team consisting of health care providers (HCPs) from addiction psychiatry, internal medicine, health psychology and pharmacy who are consulted to evaluate veterans’ current opioid regimens and make recommendations to optimize both safety and efficacy. ORC followed this particular veteran as an outpatient and consulted on pain issues during his admission. They recommended the continuation of methadone at 120 mg daily and increased oral oxycodone to 30 mg every 6 hours, and then further increased to 45 mg every 6 hours. He continued to have increased pain despite higher doses of oxycodone, and pain medication was changed to oral hydromorphone 28 mg every 6 hours with the continuation of methadone. ORC and the palliative care team obtained consent from the veteran and a release of Information form signed by the patient to contact his community methadone clinic for further collaboration around pain management throughout the time caring for the veteran.
Even with improvement in disease based on imaging and tumor markers, opioid medications could not be decreased in this case. This is likely in part due to the multidimensional nature of pain. Careful assessment of the biologic, emotional, social, and spiritual contributors to pain is needed in the management of pain, especially at end of life.6 Nonpharmacologic pain management strategies used in this case included a transcutaneous electrical nerve stimulation unit, moist heat, celiac plexus block, and emotional support.
Psychosocial Issues/Substance Use
Psychosocial support for the patient was provided by the interdisciplinary palliative care team and the ORC team in both the inpatient and outpatient settings. Despite efforts from case management to get the veteran home services once discharged from the CLC, he declined repeatedly. Thus, the CLC social worker obtained a guardian alert for the veteran on discharge.
Close outpatient follow-up for medical and psychosocial support was very critical. When an outpatient, the veteran was scheduled for biweekly appointments with palliative care or ORC. When admitted to the hospital, the palliative care team medical director and psychologist conducted joint visits with him. Although he denied depressed mood and anxiety throughout his treatment, he often reflected on regrets that he had as he faced the end of his life. Specifically, he shared thoughts about being estranged from his surviving brother given his long struggle with substance use. Although he did not think a relationship was possible with his brother at the end of life, he still cared deeply for him and wanted to make him aware of his pancreatic cancer diagnosis. This was particularly important to him because their late brother had also died of pancreatic cancer. It was the patient’s wish at the end of his life to alert his surviving brother of his diagnosis so he and his children could get adequate screening throughout their lives. Although he had spoken of this desire often, it wasn’t until his disease progressed and he elected to transition to hospice that he felt ready to write the letter. The palliative care team assisted the veteran in writing and mailing a letter to his brother informing him of his diagnosis and transition to hospice as well as communicating that his brother and his family had been in his thoughts at the end of his life. The patient’s brother received this letter and with assistance from the CLC social worker made arrangements to visit the veteran at bedside at the inpatient CLC hospice unit the final days of his life.
Discussion
There are very little data on the safety of cancer-directed therapy in patients with active SUD. The limited studies that have been done showed conflicting results.
A retrospective study among women with co-occurring SUD and locally advanced cervical cancer who were undergoing primary radiation therapy found that SUD was not associated with a difference in toxicity or survival outcomes.7 However, other research suggests that SUD may be associated with an increase in all-cause mortality as well as other adverse outcomes for patients and health care systems (eg, emergency department visits, hospitalizations).8 A retrospective study of patients with a history of SUD and nonsmall cell lung cancer showed that these patients had higher rates of depression, less family support, increased rates of missed appointments, more emergency department visits and more hospitalizations.9 Patients with chronic myeloid leukemia or myelodysplastic syndromes who had long-term cocaine use had a 6-fold increased risk of death, which was not found in patients who had long-term alcohol or marijuana use.2
The limited data highlight the need for careful consideration of ways to mitigate potentially adverse outcomes in this population while still providing clinically indicated cancer treatment. Integrated VA health care systems provide unique resources that can maximize veteran safety during cancer treatment. Utilization of VA resources and close interdisciplinary collaboration across VA HCPs can help to ensure equitable access to state-of-the-art cancer therapies for veterans with comorbid SUD.
VA Services for Patients With Comorbidities
This case highlights several distinct aspects of VA health care that make it possible to safely treat individuals with complex comorbidities. One important aspect of this was collaboration with the CLC to admit the veteran for his initial treatment after a positive cocaine test. CLC admission was nonpunitive and allowed ongoing involvement in the VA community. This provided an essential, safe, and structured environment in which 6 cycles of chemotherapy could be delivered.
Although the patient left the CLC after 2 months due to floor restrictions negatively impacting his quality of life and ability to spend time with close friends, several important events occurred during this stay. First, the patient established close relationships with the CLC staff and the palliative care team; both groups followed him throughout his inpatient and outpatient care. These relationships proved essential throughout his care as they were the foundation of difficult conversations about substance use, treatment adherence, and eventually, transition to hospice.
In addition, the opportunity to administer 6 cycles of chemotherapy at the CLC was enough to lead to clinical benefit and radiographic response to treatment. Clinical benefits while in the CLC included maintenance of a good appetite, 15-lb weight gain and preserved performance status (ECOG [Eastern Cooperative Group]-1), which allowed him to actively participate in multiple social and recreational activities while in the CLC. From early conversations, this patient was clear that he wanted treatment as long as his life could be prolonged with good quality of life. Having evidence of the benefit of treatment, at least initially, increased the patient’s confidence in treatment. There were a few conversations when the challenges of treatment mounted (eg, pain, needs for abstinence from cocaine prior to admission for chemotherapy, frequent doctor appointments), and the patient would remind himself of these data to recommit himself to treatment. The opportunity to admit him to the inpatient VA facility, including bed availability for 3 days during his treatment once he left the CLC was important. This plan to admit the patient following a negative urine toxicology test for cocaine was made collaboratively with the veteran and the oncology and palliative care teams. The plan allowed the patient to achieve his treatment goals while maintaining his safety and reducing theoretical cardiac toxicities with his cancer treatment.
Finally, the availability of a multidisciplinary team approach including palliative care, oncology, psychology, addiction medicine and addiction psychiatry, was critical for addressing the veteran’s malignant pain. Palliative care worked in close collaboration with the ORC to prescribe and renew pain medications. ORC offered ongoing consultation on pain management in the context of OUD. As the veteran’s cancer progressed and functional decline prohibited his daily attendance at the community methadone clinic, palliative care and ORC met with the methadone clinic to arrange a less frequent methadone pickup schedule (the patient previously needed daily pickup). Non-VA settings may not have access to these resources to safely treat the biopsychosocial issues that arise in complex cases.
Substance Use and Cancer Treatments
This case raises several critical questions for oncologic care. Cocaine and fluorouracil are both associated with cardiotoxicity, and many oncologists would not feel it is safe to administer a regimen containing fluorouracil to a patient with active cocaine use. The National Comprehensive Cancer Network (NCCN) panel recommends FOLFIRINOX as a preferred category 1 recommendation for first-line treatment of patients with advanced pancreas cancer with good performance status.10 This recommendation is based on the PRODIGE trial, which has shown improved overall survival (OS): 11.1 vs 6.8 months for patients who received single-agent gemcitabine.11 If patients are not candidates for FOLFIRINOX and have good performance status, the NCCN recommends gemcitabine plus albumin-bound paclitaxel with category 1 level of evidence based on the IMPACT trial, which showed improvement in OS (8.7 vs 6.6 months compared with single-agent gemcitabine).12
Some oncologists may have additional concerns administering fluorouracil treatment alternatives (such as gemcitabine and albumin-bound paclitaxel) to individuals with active SUD because of concerns about altered mental status impacting the ability to report important adverse effects. In the absence of sufficient data, HCPs must determine whether they feel it is safe to administer these agents in individuals with active cocaine use. However, denying these patients the possible benefits of standard-of-care life-prolonging therapies without established data raises concerns regarding the ethics of such practices. There is concern that the stigma surrounding cocaine use might contribute to withholding treatment, while treatment is continued for individuals taking prescribed stimulant medications that also have cardiotoxicity risks. VA health care facilities are uniquely situated to use all available resources to address these issues using interprofessional patient-centered care and determine the most optimal treatment based on a risk/benefit discussion between the patient and the HCP.
Similarly, this case also raised questions among HCPs about the safety of using an indwelling port for treatment in a patient with SUD. In the current case there was concern about keeping in a port for a patient with a history of IV drug use; therefore, a PICC line was initiated and removed at each admission. Without guidelines in these situations, HCPs are left to weigh the risks and benefits of using a port or a PICC for individuals with recent or current substance use without formal data, which can lead to inconsistent access to care. More guidance is needed for these situations.
SUD Screening
This case begs the question of whether oncologists are adequately screening for a range of SUDs, and when they encounter an issue, how they are addressing it. Many oncologists do not receive adequate training on assessment of current or recent substance use. There are health care and systems-level practices that may increase patient safety for individuals with ongoing substance use who are undergoing cancer treatment. Training on obtaining appropriate substance use histories, motivational interviewing to resolve ambivalence about substance use in the direction of change, and shared decision making about treatment options could increase confidence in understanding and addressing substance use issues. It is also important to educate oncologists on how to address patients who return to or continued substance use during treatment. In this case the collaboration from palliative care, psychology, addiction medicine, and addiction psychiatry through the ORC was essential in assisting with ongoing assessment of substance use, guiding difficult conversations about the impact of substance use on the treatment plan, and identifying risk-mitigation strategies. Close collaboration and full utilization of all VA resources allowed this patient to receive first-line treatment for pancreatic cancer in order to reach his goal of prolonging his life while maintaining acceptable quality of life. Table 2 provides best practices for management of patients with comorbid SUD and cancer.
More research is needed into cancer treatment for patients with SUD, especially in the current era of cancer care using novel cancer treatments leading to significantly improved survival in many cancer types. Ideally, oncologists should be routinely or consistently screening patients for substance use, including alcohol. The patient should participate in this decision-making process after being educated about the risks and benefits. These patients can be followed using a multimodal approach to increase their rates of success and improve their quality of life. Although the literature is limited and no formal guidelines are available, VA oncologists are fortunate to have a range of resources available to them to navigate these difficult cases. Veterans have elevated rates of SUD, making this a critical issue to consider in the VA.13 It is the hope that this case can highlight how to take advantage of the many VA resources in order to ensure equitable cancer care for all veterans.
Conclusions
This case demonstrates that cancer-directed treatment is safe and feasible in a patient with advanced pancreatic cancer and coexisting active SUD by using a multidisciplinary approach. The multidisciplinary team included palliative care, oncology, psychology, addiction medicine, and addiction psychiatry. Critical steps for a successful outcome include gathering history about SUD; motivational interviewing to resolve ambivalence about treatment for SUD; shared decision making about cancer treatment; and risk-reduction strategies in pain and SUD management.
Treatment advancements in many cancer types have led to significantly longer survival, and it is critical to develop safe protocols to treat patients with active SUD so they also can derive benefit from these very significant medical advancements.
Acknowledgments
Michal Rose, MD, Director of VACHS Cancer Center, and Chandrika Kumar, MD, Director of VACHS Community Living Center, for their collaboration in care for this veteran.
Substance use disorders (SUDs) are an important but understudied aspect of treating patients diagnosed with cancer. Substance use can affect cancer treatment outcomes, including morbidity and mortality.1,2 Additionally, patients with cancer and SUD may have unique psychosocial needs that require close attention and management. There is a paucity of data regarding the best approach to treating such patients. For example, cocaine use may increase the cardiovascular and hematologic risk of some traditional chemotherapy agents.3,4 Newer targeted agents and immunotherapies remain understudied with respect to SUD risk.
Although the US Department of Veterans Affairs (VA) has established helpful clinical practice guidelines for the treatment of SUD, there are no guidelines for treating patients with SUD and cancer.5 Clinicians have limited confidence in treatment approach, and treatment is inconsistent among oncologists nationwide even within the same practice. Furthermore, it can be challenging to safely prescribe opioids for cancer-related pain in individuals with SUD. There is a high risk of SUD and mental health disorders in veterans, making this population particularly vulnerable. We report a case of a male with metastatic pancreatic cancer, severe opioid use disorder (OUD) and moderate cocaine use disorder (CUD) who received pain management and cancer treatment under the direction of a multidisciplinary team approach.
Case Report
A 63-year-old male with a medical history of HIV treated with highly active antiretroviral therapy (HAART), compensated cirrhosis, severe OUD, moderate CUD, and sedative use disorder in sustained remission was admitted to the West Haven campus of the VA Connecticut Healthcare System (VACHS) with abdominal pain, weight loss and fatigue. He used heroin 1 month prior to his admission and reported regular cocaine and marijuana use (Table 1). He was diagnosed with HIV in 1989, and his medical history included herpes zoster and oral candidiasis but no other opportunistic infections. Several months prior to this admission, he had an undetectable viral load and CD4 count of 688.
At the time of this admission, the patient was adherent to methadone treatment. He reported increased abdominal pain. Computed tomography (CT) showed a 2.4-cm mass in the pancreatic uncinate process, multiple liver metastases, retroperitoneal lymphadenopathy, and small lung nodules. A CT-guided liver biopsy showed adenocarcinoma consistent with a primary cancer of the pancreas. Given the complexity of the case, a multidisciplinary team approach was used to treat his cancer and the sequelae safely, including the oncology team, community living center team, palliative care team, and interprofessional opioid reassessment clinic team (ORC).
Cancer Treatment
Chemotherapy with FOLFIRINOX (leucovorin calcium, fluorouracil, irinotecan hydrochloride, and oxaliplatin) was recommended. The first cycle of treatment originally was planned for the outpatient setting, and a peripherally inserted central catheter (PICC) line was placed. However, after a urine toxicology test was positive for cocaine, the PICC line was removed due to concern for possible use of PICC line for nonprescribed substance use. The patient expressed suicidal ideation at the time and was admitted for psychiatric consult and pain control. Cycle 1 FOLFIRINOX was started during this admission. A PICC line was again put in place and then removed before discharge. A celiac plexus block was performed several days after this admission for pain control.
Given concern about cocaine use increasing the risk of cardiac toxicity with FOLFIRINOX treatment, treating providers sconsulted with the community living center (CLC) about possible admission for future chemotherapy administration and pain management. The CLC at VACHS has 38 beds for rehabilitation, long-term care, and hospice with the mission to restore each veteran to his or her highest level of well-being. After discussion with this patient and CLC staff, he agreed to a CLC admission. The patient agreed to remain in the facility, wear a secure care device, and not leave without staff accompaniment. He was able to obtain a 2-hour pass to pay bills and rent. During the 2 months he was admitted to the CLC he would present to the VACHS Cancer Center for chemotherapy every 2 weeks. He completed 6 cycles of chemotherapy while admitted. During the admission, he was transferred to active medical service for 2 days for fever and malaise, and then returned to the CLC. The patient elected to leave the CLC after 2 months as the inability to see close friends was interfering with his quality of life.
Upon being discharged from the CLC, shared decision making took place with the patient to establish a new treatment plan. In collaboration with the patient, a plan was made to admit him every 2 weeks for continued chemotherapy. A PICC line was placed on each day of admission and removed prior to discharge. It was also agreed that treatment would be delayed if a urine drug test was positive for cocaine on the morning of admission. The patient was also seen by ORC every 2 weeks after being discharged from the CLC.
Imaging after cycle 6 showed decreased size of liver metastases, retroperitoneal lymph nodes, and pancreas mass. Cancer antigen 19-9 (CA19-9) tumor marker was reduced from 3513 U/mL pretreatment to 50 U/mL after cycle 7. Chemotherapy cycle 7 was delayed 6 days due to active cocaine and heroin use. A repeat urine was obtained several days later, which was negative for cocaine, and he was admitted for cycle 7 chemotherapy. Using this treatment approach of admissions for every cycle, the patient was able to receive 11 cycles of FOLFIRINOX with clinical benefit.
Palliative Care/Pain Management
Safely treating the patient’s malignant pain in the context of his OUD was critically important. In order to do this the palliative care team worked closely alongside ORC, is a multidisciplinary team consisting of health care providers (HCPs) from addiction psychiatry, internal medicine, health psychology and pharmacy who are consulted to evaluate veterans’ current opioid regimens and make recommendations to optimize both safety and efficacy. ORC followed this particular veteran as an outpatient and consulted on pain issues during his admission. They recommended the continuation of methadone at 120 mg daily and increased oral oxycodone to 30 mg every 6 hours, and then further increased to 45 mg every 6 hours. He continued to have increased pain despite higher doses of oxycodone, and pain medication was changed to oral hydromorphone 28 mg every 6 hours with the continuation of methadone. ORC and the palliative care team obtained consent from the veteran and a release of Information form signed by the patient to contact his community methadone clinic for further collaboration around pain management throughout the time caring for the veteran.
Even with improvement in disease based on imaging and tumor markers, opioid medications could not be decreased in this case. This is likely in part due to the multidimensional nature of pain. Careful assessment of the biologic, emotional, social, and spiritual contributors to pain is needed in the management of pain, especially at end of life.6 Nonpharmacologic pain management strategies used in this case included a transcutaneous electrical nerve stimulation unit, moist heat, celiac plexus block, and emotional support.
Psychosocial Issues/Substance Use
Psychosocial support for the patient was provided by the interdisciplinary palliative care team and the ORC team in both the inpatient and outpatient settings. Despite efforts from case management to get the veteran home services once discharged from the CLC, he declined repeatedly. Thus, the CLC social worker obtained a guardian alert for the veteran on discharge.
Close outpatient follow-up for medical and psychosocial support was very critical. When an outpatient, the veteran was scheduled for biweekly appointments with palliative care or ORC. When admitted to the hospital, the palliative care team medical director and psychologist conducted joint visits with him. Although he denied depressed mood and anxiety throughout his treatment, he often reflected on regrets that he had as he faced the end of his life. Specifically, he shared thoughts about being estranged from his surviving brother given his long struggle with substance use. Although he did not think a relationship was possible with his brother at the end of life, he still cared deeply for him and wanted to make him aware of his pancreatic cancer diagnosis. This was particularly important to him because their late brother had also died of pancreatic cancer. It was the patient’s wish at the end of his life to alert his surviving brother of his diagnosis so he and his children could get adequate screening throughout their lives. Although he had spoken of this desire often, it wasn’t until his disease progressed and he elected to transition to hospice that he felt ready to write the letter. The palliative care team assisted the veteran in writing and mailing a letter to his brother informing him of his diagnosis and transition to hospice as well as communicating that his brother and his family had been in his thoughts at the end of his life. The patient’s brother received this letter and with assistance from the CLC social worker made arrangements to visit the veteran at bedside at the inpatient CLC hospice unit the final days of his life.
Discussion
There are very little data on the safety of cancer-directed therapy in patients with active SUD. The limited studies that have been done showed conflicting results.
A retrospective study among women with co-occurring SUD and locally advanced cervical cancer who were undergoing primary radiation therapy found that SUD was not associated with a difference in toxicity or survival outcomes.7 However, other research suggests that SUD may be associated with an increase in all-cause mortality as well as other adverse outcomes for patients and health care systems (eg, emergency department visits, hospitalizations).8 A retrospective study of patients with a history of SUD and nonsmall cell lung cancer showed that these patients had higher rates of depression, less family support, increased rates of missed appointments, more emergency department visits and more hospitalizations.9 Patients with chronic myeloid leukemia or myelodysplastic syndromes who had long-term cocaine use had a 6-fold increased risk of death, which was not found in patients who had long-term alcohol or marijuana use.2
The limited data highlight the need for careful consideration of ways to mitigate potentially adverse outcomes in this population while still providing clinically indicated cancer treatment. Integrated VA health care systems provide unique resources that can maximize veteran safety during cancer treatment. Utilization of VA resources and close interdisciplinary collaboration across VA HCPs can help to ensure equitable access to state-of-the-art cancer therapies for veterans with comorbid SUD.
VA Services for Patients With Comorbidities
This case highlights several distinct aspects of VA health care that make it possible to safely treat individuals with complex comorbidities. One important aspect of this was collaboration with the CLC to admit the veteran for his initial treatment after a positive cocaine test. CLC admission was nonpunitive and allowed ongoing involvement in the VA community. This provided an essential, safe, and structured environment in which 6 cycles of chemotherapy could be delivered.
Although the patient left the CLC after 2 months due to floor restrictions negatively impacting his quality of life and ability to spend time with close friends, several important events occurred during this stay. First, the patient established close relationships with the CLC staff and the palliative care team; both groups followed him throughout his inpatient and outpatient care. These relationships proved essential throughout his care as they were the foundation of difficult conversations about substance use, treatment adherence, and eventually, transition to hospice.
In addition, the opportunity to administer 6 cycles of chemotherapy at the CLC was enough to lead to clinical benefit and radiographic response to treatment. Clinical benefits while in the CLC included maintenance of a good appetite, 15-lb weight gain and preserved performance status (ECOG [Eastern Cooperative Group]-1), which allowed him to actively participate in multiple social and recreational activities while in the CLC. From early conversations, this patient was clear that he wanted treatment as long as his life could be prolonged with good quality of life. Having evidence of the benefit of treatment, at least initially, increased the patient’s confidence in treatment. There were a few conversations when the challenges of treatment mounted (eg, pain, needs for abstinence from cocaine prior to admission for chemotherapy, frequent doctor appointments), and the patient would remind himself of these data to recommit himself to treatment. The opportunity to admit him to the inpatient VA facility, including bed availability for 3 days during his treatment once he left the CLC was important. This plan to admit the patient following a negative urine toxicology test for cocaine was made collaboratively with the veteran and the oncology and palliative care teams. The plan allowed the patient to achieve his treatment goals while maintaining his safety and reducing theoretical cardiac toxicities with his cancer treatment.
Finally, the availability of a multidisciplinary team approach including palliative care, oncology, psychology, addiction medicine and addiction psychiatry, was critical for addressing the veteran’s malignant pain. Palliative care worked in close collaboration with the ORC to prescribe and renew pain medications. ORC offered ongoing consultation on pain management in the context of OUD. As the veteran’s cancer progressed and functional decline prohibited his daily attendance at the community methadone clinic, palliative care and ORC met with the methadone clinic to arrange a less frequent methadone pickup schedule (the patient previously needed daily pickup). Non-VA settings may not have access to these resources to safely treat the biopsychosocial issues that arise in complex cases.
Substance Use and Cancer Treatments
This case raises several critical questions for oncologic care. Cocaine and fluorouracil are both associated with cardiotoxicity, and many oncologists would not feel it is safe to administer a regimen containing fluorouracil to a patient with active cocaine use. The National Comprehensive Cancer Network (NCCN) panel recommends FOLFIRINOX as a preferred category 1 recommendation for first-line treatment of patients with advanced pancreas cancer with good performance status.10 This recommendation is based on the PRODIGE trial, which has shown improved overall survival (OS): 11.1 vs 6.8 months for patients who received single-agent gemcitabine.11 If patients are not candidates for FOLFIRINOX and have good performance status, the NCCN recommends gemcitabine plus albumin-bound paclitaxel with category 1 level of evidence based on the IMPACT trial, which showed improvement in OS (8.7 vs 6.6 months compared with single-agent gemcitabine).12
Some oncologists may have additional concerns administering fluorouracil treatment alternatives (such as gemcitabine and albumin-bound paclitaxel) to individuals with active SUD because of concerns about altered mental status impacting the ability to report important adverse effects. In the absence of sufficient data, HCPs must determine whether they feel it is safe to administer these agents in individuals with active cocaine use. However, denying these patients the possible benefits of standard-of-care life-prolonging therapies without established data raises concerns regarding the ethics of such practices. There is concern that the stigma surrounding cocaine use might contribute to withholding treatment, while treatment is continued for individuals taking prescribed stimulant medications that also have cardiotoxicity risks. VA health care facilities are uniquely situated to use all available resources to address these issues using interprofessional patient-centered care and determine the most optimal treatment based on a risk/benefit discussion between the patient and the HCP.
Similarly, this case also raised questions among HCPs about the safety of using an indwelling port for treatment in a patient with SUD. In the current case there was concern about keeping in a port for a patient with a history of IV drug use; therefore, a PICC line was initiated and removed at each admission. Without guidelines in these situations, HCPs are left to weigh the risks and benefits of using a port or a PICC for individuals with recent or current substance use without formal data, which can lead to inconsistent access to care. More guidance is needed for these situations.
SUD Screening
This case begs the question of whether oncologists are adequately screening for a range of SUDs, and when they encounter an issue, how they are addressing it. Many oncologists do not receive adequate training on assessment of current or recent substance use. There are health care and systems-level practices that may increase patient safety for individuals with ongoing substance use who are undergoing cancer treatment. Training on obtaining appropriate substance use histories, motivational interviewing to resolve ambivalence about substance use in the direction of change, and shared decision making about treatment options could increase confidence in understanding and addressing substance use issues. It is also important to educate oncologists on how to address patients who return to or continued substance use during treatment. In this case the collaboration from palliative care, psychology, addiction medicine, and addiction psychiatry through the ORC was essential in assisting with ongoing assessment of substance use, guiding difficult conversations about the impact of substance use on the treatment plan, and identifying risk-mitigation strategies. Close collaboration and full utilization of all VA resources allowed this patient to receive first-line treatment for pancreatic cancer in order to reach his goal of prolonging his life while maintaining acceptable quality of life. Table 2 provides best practices for management of patients with comorbid SUD and cancer.
More research is needed into cancer treatment for patients with SUD, especially in the current era of cancer care using novel cancer treatments leading to significantly improved survival in many cancer types. Ideally, oncologists should be routinely or consistently screening patients for substance use, including alcohol. The patient should participate in this decision-making process after being educated about the risks and benefits. These patients can be followed using a multimodal approach to increase their rates of success and improve their quality of life. Although the literature is limited and no formal guidelines are available, VA oncologists are fortunate to have a range of resources available to them to navigate these difficult cases. Veterans have elevated rates of SUD, making this a critical issue to consider in the VA.13 It is the hope that this case can highlight how to take advantage of the many VA resources in order to ensure equitable cancer care for all veterans.
Conclusions
This case demonstrates that cancer-directed treatment is safe and feasible in a patient with advanced pancreatic cancer and coexisting active SUD by using a multidisciplinary approach. The multidisciplinary team included palliative care, oncology, psychology, addiction medicine, and addiction psychiatry. Critical steps for a successful outcome include gathering history about SUD; motivational interviewing to resolve ambivalence about treatment for SUD; shared decision making about cancer treatment; and risk-reduction strategies in pain and SUD management.
Treatment advancements in many cancer types have led to significantly longer survival, and it is critical to develop safe protocols to treat patients with active SUD so they also can derive benefit from these very significant medical advancements.
Acknowledgments
Michal Rose, MD, Director of VACHS Cancer Center, and Chandrika Kumar, MD, Director of VACHS Community Living Center, for their collaboration in care for this veteran.
1. Chang G, Meadows ME, Jones JA, Antin JH, Orav EJ. Substance use and survival after treatment for chronic myelogenous leukemia (CML) or myelodysplastic syndrome (MDS). Am J Drug Alcohol Ab. 2010;36(1):1-6. doi:10.3109/00952990903490758
2. Stagno S, Busby K, Shapiro A, Kotz M. Patients at risk: addressing addiction in patients undergoing hematopoietic SCT. Bone Marrow Transplant. 2008;42(4):221-226. doi:10.1038/bmt.2008.211
3. Arora NP. Cutaneous vasculopathy and neutropenia associated with levamisole-adulterated cocaine. Am J Med Sci. 2013;345(1):45-51. doi:10.1097/MAJ.0b013e31825b2b50
4. Schwartz BG, Rezkalla S, Kloner RA. Cardiovascular effects of cocaine. Circulation. 2010;122(24):2558-2569. doi:10.1161/CIRCULATIONAHA.110.940569
5. US Department of Veterans Affairs, US Department of Defense. VA/DoD clinical practice guideline for the management of substance use disorders. Published 2015. Accessed July 8, 2021. https://www.healthquality.va.gov/guidelines/MH/sud/VADODSUDCPGRevised22216.pdf
6. Mehta A, Chan LS. Understanding of the concept of “total pain”: a prerequisite for pain control. J Hosp Palliat Nurs. 2008;10(1):26-32. doi:10.1097/01.NJH.0000306714.50539.1a
7. Rubinsak LA, Terplan M, Martin CE, Fields EC, McGuire WP, Temkin SM. Co-occurring substance use disorder: The impact on treatment adherence in women with locally advanced cervical cancer. Gynecol Oncol Rep. 2019;28:116-119. Published 2019 Mar 27. doi:10.1016/j.gore.2019.03.016
8. Chhatre S, Metzger DS, Malkowicz SB, Woody G, Jayadevappa R. Substance use disorder and its effects on outcomes in men with advanced-stage prostate cancer. Cancer. 2014;120(21):3338-3345. doi:10.1002/cncr.28861
9. Concannon K, Thayer JH, Hicks R, et al. Outcomes among patients with a history of substance abuse in non-small cell lung cancer: a county hospital experience. J Clin Onc. 2019;37(15)(suppl):e20031-e20031. doi:10.1200/JCO.2019.37.15
10. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: pancreatic adenocarcinoma. Version 2.2021. Updated February 25, 2021. Accessed July 8, 2021. https://www.nccn.org/professionals/physician_gls/pdf/pancreatic.pdf
11. Conroy T, Desseigne F, Ychou M, et al. FOLFIRINOX versus gemcitabine for metastatic pancreatic cancer. N Engl J Med. 2011;364(19):1817-1825. doi:10.1056/NEJMoa1011923
12. Von Hoff DD, Ervin T, Arena FP, et al. Increased survival in pancreatic cancer with nab-paclitaxel plus gemcitabine. N Engl J Med. 2013;369(18):1691-1703. doi:10.1056/NEJMoa1304369
13. Seal KH, Cohen G, Waldrop A, Cohen BE, Maguen S, Ren L. Substance use disorders in Iraq and Afghanistan veterans in VA healthcare, 2001-2010: Implications for screening, diagnosis and treatment. Drug Alcohol Depend. 2011;116(1-3):93-101. doi:10.1016/j.drugalcdep.2010.11.027
14. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed. American Psychiatric Association; 2013.
1. Chang G, Meadows ME, Jones JA, Antin JH, Orav EJ. Substance use and survival after treatment for chronic myelogenous leukemia (CML) or myelodysplastic syndrome (MDS). Am J Drug Alcohol Ab. 2010;36(1):1-6. doi:10.3109/00952990903490758
2. Stagno S, Busby K, Shapiro A, Kotz M. Patients at risk: addressing addiction in patients undergoing hematopoietic SCT. Bone Marrow Transplant. 2008;42(4):221-226. doi:10.1038/bmt.2008.211
3. Arora NP. Cutaneous vasculopathy and neutropenia associated with levamisole-adulterated cocaine. Am J Med Sci. 2013;345(1):45-51. doi:10.1097/MAJ.0b013e31825b2b50
4. Schwartz BG, Rezkalla S, Kloner RA. Cardiovascular effects of cocaine. Circulation. 2010;122(24):2558-2569. doi:10.1161/CIRCULATIONAHA.110.940569
5. US Department of Veterans Affairs, US Department of Defense. VA/DoD clinical practice guideline for the management of substance use disorders. Published 2015. Accessed July 8, 2021. https://www.healthquality.va.gov/guidelines/MH/sud/VADODSUDCPGRevised22216.pdf
6. Mehta A, Chan LS. Understanding of the concept of “total pain”: a prerequisite for pain control. J Hosp Palliat Nurs. 2008;10(1):26-32. doi:10.1097/01.NJH.0000306714.50539.1a
7. Rubinsak LA, Terplan M, Martin CE, Fields EC, McGuire WP, Temkin SM. Co-occurring substance use disorder: The impact on treatment adherence in women with locally advanced cervical cancer. Gynecol Oncol Rep. 2019;28:116-119. Published 2019 Mar 27. doi:10.1016/j.gore.2019.03.016
8. Chhatre S, Metzger DS, Malkowicz SB, Woody G, Jayadevappa R. Substance use disorder and its effects on outcomes in men with advanced-stage prostate cancer. Cancer. 2014;120(21):3338-3345. doi:10.1002/cncr.28861
9. Concannon K, Thayer JH, Hicks R, et al. Outcomes among patients with a history of substance abuse in non-small cell lung cancer: a county hospital experience. J Clin Onc. 2019;37(15)(suppl):e20031-e20031. doi:10.1200/JCO.2019.37.15
10. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: pancreatic adenocarcinoma. Version 2.2021. Updated February 25, 2021. Accessed July 8, 2021. https://www.nccn.org/professionals/physician_gls/pdf/pancreatic.pdf
11. Conroy T, Desseigne F, Ychou M, et al. FOLFIRINOX versus gemcitabine for metastatic pancreatic cancer. N Engl J Med. 2011;364(19):1817-1825. doi:10.1056/NEJMoa1011923
12. Von Hoff DD, Ervin T, Arena FP, et al. Increased survival in pancreatic cancer with nab-paclitaxel plus gemcitabine. N Engl J Med. 2013;369(18):1691-1703. doi:10.1056/NEJMoa1304369
13. Seal KH, Cohen G, Waldrop A, Cohen BE, Maguen S, Ren L. Substance use disorders in Iraq and Afghanistan veterans in VA healthcare, 2001-2010: Implications for screening, diagnosis and treatment. Drug Alcohol Depend. 2011;116(1-3):93-101. doi:10.1016/j.drugalcdep.2010.11.027
14. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed. American Psychiatric Association; 2013.
VA Connecticut Friendly Phone Call Program (FPCP): A Collaborative, Team-based Approach to Alleviating Loneliness related to Social Isolation in Veterans with Cancer During the Covid-19 Pandemic
BACKGROUND: At VACHS, we identified oncology patients at risk for loneliness subsequent to COVID-19 social distancing recommendations. Cancer patients are older, more physically frail and immune compromised, making them high-risk for complications related to covid-19 infection. Given this risk, social isolation might extend significantly beyond the initial period of lockdown for oncology patients. To protect this vulnerable population, we shifted from face-to-face visits to telemedicine. A workgroup formed to develop an intervention to support Veterans at-risk for prolonged isolation. Social isolation is a well-established risk factor for poor health and mortality (Caccioppo & Hawkley, 2003). For individuals with cancer, social isolation has been linked to poorer survival (Reynolds & Kaplan, 1990; Hislop, Waxler, Coldman, Elwood, and Kan, 1987). Research in woman with ovarian cancer suggests that limited social support is associated with higher angiogenic cytokine levels (Costanzo et al., 2005). Thus, bolstering social support for individuals with cancer is important for both psychological wellbeing as well as possibly for cancer outcomes.
METHODS: A Friendly Phone Call Program (FPCP) was developed in collaboration by the Cancer Coordinator, Health Psychologist, Recreation Therapist and Social Worker to support Veterans who live alone, are elderly, or are physically frail throughout the COVID- 19 pandemic. Oncology providers were educated to identify socially isolated Veterans at-risk for distress during their phone appointments. The FPCP was notified of referrals by alert in CPRS. Charts were reviewed and triaged to the appropriate team member (i.e., psychology, recreation therapy, or social work). Follow-up phone calls were made utilizing a script to introduce FPCP and educate patients on available psychosocial services. In concert with FPCP, recreation therapy groups were offered by phone.
RESULTS: From 4/1/20 to 6/30/20, oncology providers identified 45 patients with psychosocial needs related to social isolation. 23 received outreach from Recreation Therapy, 9 by mental health, 8 by Social Work and 3 get weekly check-in calls from the Cancer Coordinator. 2 patients have since passed away.
CONCLUSIONS: VACHS developed a collaborative, multidisciplinary intervention that identifies patients at risk for psychosocial distress related to loneliness and provides ongoing, individualized, emotional support using existing staff and technology that is replicable in any VA setting.
BACKGROUND: At VACHS, we identified oncology patients at risk for loneliness subsequent to COVID-19 social distancing recommendations. Cancer patients are older, more physically frail and immune compromised, making them high-risk for complications related to covid-19 infection. Given this risk, social isolation might extend significantly beyond the initial period of lockdown for oncology patients. To protect this vulnerable population, we shifted from face-to-face visits to telemedicine. A workgroup formed to develop an intervention to support Veterans at-risk for prolonged isolation. Social isolation is a well-established risk factor for poor health and mortality (Caccioppo & Hawkley, 2003). For individuals with cancer, social isolation has been linked to poorer survival (Reynolds & Kaplan, 1990; Hislop, Waxler, Coldman, Elwood, and Kan, 1987). Research in woman with ovarian cancer suggests that limited social support is associated with higher angiogenic cytokine levels (Costanzo et al., 2005). Thus, bolstering social support for individuals with cancer is important for both psychological wellbeing as well as possibly for cancer outcomes.
METHODS: A Friendly Phone Call Program (FPCP) was developed in collaboration by the Cancer Coordinator, Health Psychologist, Recreation Therapist and Social Worker to support Veterans who live alone, are elderly, or are physically frail throughout the COVID- 19 pandemic. Oncology providers were educated to identify socially isolated Veterans at-risk for distress during their phone appointments. The FPCP was notified of referrals by alert in CPRS. Charts were reviewed and triaged to the appropriate team member (i.e., psychology, recreation therapy, or social work). Follow-up phone calls were made utilizing a script to introduce FPCP and educate patients on available psychosocial services. In concert with FPCP, recreation therapy groups were offered by phone.
RESULTS: From 4/1/20 to 6/30/20, oncology providers identified 45 patients with psychosocial needs related to social isolation. 23 received outreach from Recreation Therapy, 9 by mental health, 8 by Social Work and 3 get weekly check-in calls from the Cancer Coordinator. 2 patients have since passed away.
CONCLUSIONS: VACHS developed a collaborative, multidisciplinary intervention that identifies patients at risk for psychosocial distress related to loneliness and provides ongoing, individualized, emotional support using existing staff and technology that is replicable in any VA setting.
BACKGROUND: At VACHS, we identified oncology patients at risk for loneliness subsequent to COVID-19 social distancing recommendations. Cancer patients are older, more physically frail and immune compromised, making them high-risk for complications related to covid-19 infection. Given this risk, social isolation might extend significantly beyond the initial period of lockdown for oncology patients. To protect this vulnerable population, we shifted from face-to-face visits to telemedicine. A workgroup formed to develop an intervention to support Veterans at-risk for prolonged isolation. Social isolation is a well-established risk factor for poor health and mortality (Caccioppo & Hawkley, 2003). For individuals with cancer, social isolation has been linked to poorer survival (Reynolds & Kaplan, 1990; Hislop, Waxler, Coldman, Elwood, and Kan, 1987). Research in woman with ovarian cancer suggests that limited social support is associated with higher angiogenic cytokine levels (Costanzo et al., 2005). Thus, bolstering social support for individuals with cancer is important for both psychological wellbeing as well as possibly for cancer outcomes.
METHODS: A Friendly Phone Call Program (FPCP) was developed in collaboration by the Cancer Coordinator, Health Psychologist, Recreation Therapist and Social Worker to support Veterans who live alone, are elderly, or are physically frail throughout the COVID- 19 pandemic. Oncology providers were educated to identify socially isolated Veterans at-risk for distress during their phone appointments. The FPCP was notified of referrals by alert in CPRS. Charts were reviewed and triaged to the appropriate team member (i.e., psychology, recreation therapy, or social work). Follow-up phone calls were made utilizing a script to introduce FPCP and educate patients on available psychosocial services. In concert with FPCP, recreation therapy groups were offered by phone.
RESULTS: From 4/1/20 to 6/30/20, oncology providers identified 45 patients with psychosocial needs related to social isolation. 23 received outreach from Recreation Therapy, 9 by mental health, 8 by Social Work and 3 get weekly check-in calls from the Cancer Coordinator. 2 patients have since passed away.
CONCLUSIONS: VACHS developed a collaborative, multidisciplinary intervention that identifies patients at risk for psychosocial distress related to loneliness and provides ongoing, individualized, emotional support using existing staff and technology that is replicable in any VA setting.