End-of-Life Care for Patients With Psychiatric Disorders

willyam/AdobeStock

CATEGORY 1 CME

Premiere Date: September 20, 2024

Expiration Date: March 20, 2026

This activity offers CE credits for:

1. Physicians (CME)

2. Other

All other clinicians either will receive a CME Attendance Certificate or may choose any of the types of CE credit being offered.

ACTIVITY GOAL

To inform readers of how best to provide end-of-life care to patients with psychiatric disorder.

LEARNING OBJECTIVES

1. Describe and discuss the nature and causes of hastened death in patients with psychiatric disorders, including foreseeably hastened death.

2. Describe potential roles for palliative care in psychiatric patients with treatment unresponsive late-stage psychiatric disorders.

TARGET AUDIENCE

This accredited continuing education (CE) activity is intended for psychiatrists, psychologists, primary care physicians, physician assistants, nurse practitioners, and other health care professionals who seek to improve their care for patients with mental health disorders.

ACCREDITATION/CREDIT DESIGNATION/FINANCIAL SUPPORT

This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of Physicians’ Education Resource,® LLC, and Psychiatric Times.® Physicians’ Education Resource, LLC, is accredited by the ACCME to provide continuing medical education for physicians.

Physicians’ Education Resource, LLC, designates this enduring material for a maximum of 1.5 AMA PRA Category 1 Credits.™ Physicians should claim only the credit commensurate with the extent of their participation in the activity.

This activity is funded entirely by Physicians’ Education Resource, LLC. No commercial support was received.

OFF-LABEL DISCLOSURE/DISCLAIMER

This accredited CE activity may or may not discuss investigational, unapproved, or off-label use of drugs. Participants are advised to consult prescribing information for any products discussed. The information provided in this accredited CE activity is for continuing medical education purposes only and is not meant to substitute for the independent clinical judgment of a physician relative to diagnostic or treatment options for a specific patient’s medical condition. The opinions expressed in the content are solely those of the individual faculty members and do not reflect those of Physicians’ Education Resource, LLC.

FACULTY, STAFF, AND PLANNERS’ DISCLOSURES AND CONFLICT OF INTEREST (COI) MITIGATION

None of the staff of Physicians’ Education Resource, LLC, or Psychiatric Times or the planners or the authors of this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, reselling, or distributing health care products used by or on patients.

For content-related questions, email us at PTEditor@mmhgroup.com; for questions concerning the accreditation of this CME activity or how to claim credit, please contact info@gotoper.com and include "End-of-Life Care for Patients With Psychiatric Disorders" in the subject line.

HOW TO CLAIM CREDIT

Once you have read the article, please use the following URL to evaluate and request credit: https://education.gotoper.com/activity/ptcme24sept24. If you do not already have an account with PER,® you will be prompted to create one. You must have an account to evaluate and request credit for this activity.

Caring for psychiatrically healthy individuals at the end of life is typically emotionally taxing and burdensome. Caring for individuals with psychiatric disorders at the end of life is often considerably more challenging.

Most individuals aspire to a “good death,” typified by being free from physical pain, lucid, in dignified circumstances, attended by loved ones, surrounded with flowers and family photos, leaving a legacy, anticipating a positive obituary, experiencing few regrets, and having prepared a will and a prearranged funeral.¹ Practically speaking, fewer individuals probably experience such good deaths than not,² and such good deaths are undoubtedly less frequent among patients with psychiatric disorders.

Figure 1. Cause of Death Among Individuals With Mental Disorders^3-5

Individuals with psychiatric disorders frequently have foreshortened lives. Average life expectancies are often a decade or 2 shorter than population averages. Among individuals with mental disorders, approximately 67% of deaths are due to natural causes, 18% to unnatural causes, and the remainder to other or unknown causes (Figure 1).^3-5 Added burdens include adverse medication effects, poor social conditions, greater difficulties accessing health care, poor self-care, alienation from or contentious relations with families, increased rates of accidents and homicides, and, at times, repeated self-harming behaviors.

In contrast to individuals with psychiatric disorders who die “with” their disorders but from natural causes such as cardiovascular diseases or cancer, some individuals die “from” their psychiatric disorders, documented as immediate causes on death certificates.⁶ Whereas many patients with psychiatric disorders are beset by conditions that indirectly contribute to their deaths (eg, obesity), other processes contribute more directly (eg, tobacco, alcohol, and other substance use disorders) or are directly consequential (eg, inescapable, persistent suicidal ruminations or command auditory hallucinations leading to suicide) (Figure 2). Although specific causes of death in psychiatric patients have been categorized in detail, trajectories leading to these deaths have been less well delineated, particularly toward the end of life.

Figure 2. Conditions that contribute to death in patients with psychiatric disorders

Some individuals who die from their psychiatric disorders face predictably foreshortened lives, such as those with persistent severe difficult-to-treat alcohol and other substance use disorders, unrelenting suicidal impulses, and severe and persistent eating disorders. Some of these individuals manifest trajectories characterized as “slow suicides.”^7-9 These patients have often been told or have said to themselves, “If you continue to act this way, you are going to die.” Too often, they are correct. These difficult-to-treat conditions sometimes result from patients not responding to available treatments and sometimes from rejecting treatment. Despite some clinicians’ reluctance to acknowledge that psychiatric disorders can themselves be the cause of death, at end of life some psychiatric disorders clearly result in terminal conditions, as sometimes seen in patients with anorexia nervosa.^10,11

Individuals demonstrating foreseeably foreshortened lives have been tentatively characterized as manifesting “likely fatal trajectories” (LFTs), which sometimes culminate in “end-stage psychiatric disorders.”¹¹ Individuals with psychiatric disorders on an LFT demonstrate the following characteristics¹¹:

1. Relentlessly or cumulatively self-destructive behaviors, no single one intended or likely to be lethal, but which at some point may result in a lethal episode (ie, the straw that broke the camel’s back). Examples: escalating alcohol use, substance use, slow starvation or gorging, extreme risk-taking or other self-injurious behaviors, repeated injection with unknown substances.
2. Intermittently or consistently showing attitudes of despair, hopelessness, loss of dignity, sometimes accompanied by self-destructive thoughts indicating that, at least momentarily, they no longer care about whether they live or die—about what happens to them (“Who cares?!”).
3. Characteristics irrespective of legal status or decisional capacity; irrespective of active, ineffective, intolerable, inaccessible, or refused treatment; and irrespective of whether the individual expressly indicates a wish to die.

Despite best efforts by families and professionals to intervene and reverse these downward courses, these processes sometimes accelerate to the point where patients’ death trajectories are highly unlikely to be reversible. At these points, patients could be considered to be dying “from” their psychiatric disorders, entering end stages of LFT.

End-Stage Psychiatric Disorder

• The individual demonstrates a clinical status and persistent behaviors increasing in intensity and/or severity, associated with deteriorating psychiatric disorders and increasing frailty. These conditions clearly can lead directly, inevitably, and at times irreversibly to hastened natural or unnatural death. These can be seen in individuals with severe anorexia nervosa whose BMIs fall precipitously and who nevertheless refuse to eat or accept treatment, in individuals with alcohol use disorder who continue to drink alcohol despite suffering from severe liver failure and cirrhosis, and in individuals with treatment nonresponsive psychotic illness who repeatedly follow command hallucinations to throw themselves down on the ground, resulting in devastating and eventually fatal neurologic injuries.
• Absent (or sometimes, despite) major changes in treatment acceptance/adherence/efficacy, clinical opinion estimates that death is likely to occur within months to no more than several years.
• These characteristics are present irrespective of legal status or decisional capacity; irrespective of active, ineffective, intolerable, inaccessible, or refused treatment; and irrespective of whether the individual expressly indicates a wish to die.

Caring for Patients at End of Life

Specific guidance regarding how to care for patients with psychiatric disorders at the end of life has received insufficient attention, particularly for those with foreseeably foreshortened lives. For patients who are not agreeable to participating in treatment, much remains to be learned about whether and when restrictive interventions might be effective, legally permissible, and ethically justified.¹¹ These interventions are always difficult to effect and may cause patients and stakeholders considerable iatrogenic traumas, distress, and loss of dignity.

Absent effective treatments, clinicians are still morally obligated to care for these patients and minimize their suffering. Both mental health and general medical clinicians involved in long-term care with these patients are likely to understand the importance of their ongoing relationships; these clinicians would be disinclined to simply stop all care despite a patient who is uncooperative or refuses disease-modifying treatments. In some instances, unless suitable and meaningful referrals are made, clinicians’ withdrawal from treatment could constitute abandonment. These circumstances offer opportunities to introduce palliative approaches.

As its primary aim, palliative care prioritizes quality of life, providing care consistent with a patient’s goals, and preventing and relieving suffering.¹² Palliative care approaches have been deemed appropriate for patients with psychiatric disorders at certain points of clinical care, usually when patients have stopped responding to and/or stopped participating in recovery-oriented care but still hope to mitigate suffering from their disorders and circumstances. Diagnoses suitable for such care mentioned by scholars include refractory schizophrenia, bipolar disorders, major depressive disorders, and anorexia nervosa.^13-15 Exactly when palliative approaches can be instituted depends on patients’ clinical status, skills of clinicians in describing and implementing care plans, and patients’ acceptance of these approaches.

The mainstay of palliative care is an interdisciplinary, whole-person therapeutic assessment and care plan that emphasizes physical, social, emotional, spiritual, and relational health; privileging therapeutic alliance; compassionate witnessing; and quality of life. When aptly applied, palliative care improves quality of life, caregiver burden, and end-of-life care outcomes, and decreases acute care use and costs.^16,17 When patients become debilitated and demonstrate limited life expectancy, goals focus on spiritual wholeness and peaceful death. Wherever possible, compulsory interventions are avoided.

Eligibility for hospice care under Medicare can be established when a person has a 6-month or less expected survival resulting from the expected progression of their qualifying illness. In practice, end-of-life care, including hospice care, is often instituted when patients are days to weeks away from death.¹⁸ Most studies show that patients dying from psychiatric disorders are less likely to receive palliative or hospice care and more likely to die alone or in nursing homes than in the presence of their families.^19-25 For example, studies from Australia, New Zealand, and Canada suggest that patients with serious mental illness are 2 to 4 times less likely than others to access palliative care services in the last months of life.²⁴ Rather than “death with dignity,” patients dying from psychiatric disorders are more likely to experience “death with indignity.”

These factors underscore the importance of developing palliative and hospice care providers specially trained on issues that might be anticipated in caring for patients with psychiatric disorders and their families, and for empowering nonspecialists who are comfortable providing meaningful palliative care.^26-28

Accordingly, as patients with psychiatric disorders approach end of life, wherever possible caregivers are advised to engage patients and their families in developing patient- and family-centered care plans so that patients’ and families’ physical, social, and psychiatric needs can be recognized and addressed, to assist coping and reduce suffering. Advance care planning should address preferences concerning palliative and hospice care, including attempts to address where patients wish to die. Hospice services should be provided at home, nursing homes, hospitals, or other facilities. Although assuring “good deaths” can be challenging, systematic efforts can assist patients with psychiatric disorders to achieve deaths with dignity rather than indignity.

Contemporary discussions concerning end-of-life issues of patients with psychiatric disorders also raise considerations of medical aid in dying (MAiD) for patients with intractable suffering attributed to their disorders.²⁹ The Netherlands, Belgium, Luxembourg, and Switzerland currently permit MAiD for patients with intractable suffering due to psychiatric disorders, and Canada is now scheduled to follow suit in 2027.³⁰ Over time, public opinion in these countries has shifted toward increasing acceptance of such interventions.³¹ However, no jurisdiction in the US authorizes MAiD for such purposes. Numerous, fraught, and divisive cultural and ethical considerations are at play.³² Some distinguished American psychiatrists have objected to any considerations of MAiD for patients with psychiatric disorders. Their objections have been based on religious, historical, and cultural arguments, all of which have influenced contemporary ethical formulations by professional societies. Controversially, they often claim that all patients with psychiatric disorders are so vulnerable that they cannot be granted the agency or decisional capacity necessary to make autonomous decisions involving MAiD. Nevertheless, we can anticipate learning a great deal from the European and Canadian experiences, observing how opinions concerning these issues evolve among various American subpopulations, and seeing what transpires if permissive legislation is passed in 1 or more states.

Case Study Example

This case study is adapted from reference 33.

“Ms Adams” was a 30-year-old woman who presented to clinic, referred by her primary care physician, for help managing her psychiatric medications. Her weight was 64 pounds (body mass index [BMI] of 10.9). Ms Adams suffered anorexia nervosa, binge-purge subtype, and obsessive-compulsive disorder (OCD), first diagnosed at age 19. She described multiple episodes of prior treatment, including 2 attempts at residential eating disorder programs, a 2-year inpatient certification, and several more years of participation in an eating disorders day hospital program. She limited herself to no more than 300 calories daily, ran up to 2 hours every day, and had multiple exercise rituals. She participated in several months of medication management, supportive therapy, and case management in the clinic, during which time she incurred repeated injuries due to passing out, hitting her head, and dangerous falls while exercising. Consequently, she was involuntarily hospitalized.

Ms Adams refused eating disorders treatment, and no eating disorder program would accept her on an involuntary status. All the local, highly experienced eating disorder experts who had worked with Ms Adams extensively over the past 10 years were consulted. They all considered her anorexia nervosa to be refractory to treatment with any currently available method.

The medical center’s ethics committee was consulted but had no experience or points of reference regarding how to manage this patient, who was chronically a danger to herself, unwilling to engage in further treatments, and unresponsive to all prior attempts to treat her involuntarily. Hospital attorneys opined that Ms Adams would most likely not meet criteria for court ordered guardianship. The patient’s family, overwhelmed and burned out, refused to assume guardianship.

Given her history, treatment, and resource limitations, and in the opinion of hospital attorneys, there were no legal grounds for prolonged forced intervention. The treatment team and the ethics committee determined that her impairments were likely to lead to her death. At the request of staff and with the patient’s consent, the palliative care team met with the patient, the patient’s family, and the outpatient treatment team, including psychiatry and internal medicine, to discuss shifting Ms Adams’ care to a palliative treatment stance.

The clinicians explained that Ms Adams would receive no further involuntary treatment for her eating disorder. If she chose to pursue treatment, she would be assisted, but the staff would not force her into any involuntary placements or impose any treatment she did not want. There would be no weigh-ins, no calorie or exercise monitoring, no intramuscular medications, and no required therapy sessions. She would be offered outpatient therapy only as she felt desirable and necessary. Psychiatric medications would be prescribed as the patient deemed necessary to help manage depression, anxiety, and insomnia. The patient would receive weekly visits from a palliative care nurse, who would work with her to manage her symptoms and keep her comfortable. The palliative care team eventually agreed to work with Ms Adams and agreed to provide her with support regardless of her belief that she was not likely to die from her condition. She was discharged from the hospital weighing 85 pounds (BMI of 14.6).

Immediately upon discharge, Ms Adams resumed her strict caloric restriction and exercising, leading to new stress fractures. During 1 emergency department visit, she weighed 55 pounds (BMI 9.4), with blood pressure of 40/30. Given her precarious weight and ongoing self-destructive behaviors, the treatment team prognosticated that her life expectancy would be short, and home hospice services were offered. After several weeks of palliative care and further emergency department visits, Ms Adams eventually became so weak that she was moved to an inpatient hospice, where she died 3 weeks later.

Dr Yager is a professor emeritus in the Department of Psychiatry, University of Colorado School of Medicine, Anschutz Medical Campus. Dr Treem is regional medical director of Palliative Care and Hospice at Mid-Atlantic Permanente Medical Group. Dr Strouse is professor of clinical psychiatry and the inaugural holder of the Maddie Katz Chair in Palliative Care Research and Education. He is also vice-chair for clinical affairs in the Department of Psychiatry and Biobehavioral Sciences at the UCLA David Geffen School of Medicine.

References

1. Shneidman E. Criteria for a good death. Suicide Life Threat Behav. 2007;37(3):245-247.

2. National Center for Health Statistics. QuickStats: percentage of deaths, by place of death — National Vital Statistics System, United States, 2000–2018. MMWR Morb Mortal Wkly Rep. 2020;69(19):611.

3. Nordentoft M, Wahlbeck K, Hällgren J, et al. Excess mortality, causes of death and life expectancy in 270,770 patients with recent onset of mental disorders in Denmark, Finland and Sweden. PLoS One. 2013;8(1):e55176.

4. Olfson M, Gerhard T, Huang C, et al. Premature mortality among adults with schizophrenia in the United States. JAMA Psychiatry. 2015;72(12):1172-1181.

5. Walker ER, McGee RE, Druss BG. Mortality in mental disorders and global disease burden implications: a systematic review and meta-analysis. JAMA Psychiatry. 2015;72(4):334-341.

6. Bohnert ASB, Sen S. Deaths attributed to psychiatric disorders in the United States, 2010-2018. Am J Public Health. 2020;110(12):1825-1827.

7. Dedesma RK, Kallivayalil D, Albanese MJ, Eisen JC. A slow suicide: the seemingly infinite cycle of alcohol and trauma in a middle-aged woman. Harv Rev Psychiatry. 2014;22(1):46-54.

8. Ekeberg O, Ellingsen O, Jacobsen D. Suicide and other causes of death in a five-year follow-up of patients treated for self-poisoning in Oslo. Acta Psychiatr Scand. 1991;83(6):432-437.

9. Kidd SA, Kral MJ. Suicide and prostitution among street youth: a qualitative analysis. Adolescence. 2002;37(146):411-430.

10. Gaudiani JL, Bogetz A, Yager J. Terminal anorexia nervosa: three cases and proposed clinical characteristics. J Eat Disord. 2022;10(1):23.

11. Yager J, Treem J, Strouse TB. Foreseeably early deaths in patients with psychiatric disorders: challenges in caring for patients manifesting likely fatal trajectories. J Mental Dis. Forthcoming June 21, 2024.

12. Treem J, Yager J, Gaudiani JL. A life-affirming palliative care model for severe and enduring anorexia nervosa. AMA J Ethics. 2023;25(9):E703-E709.

13. Chan KY, Yap DYH, Singh Harry Gill H. Rethinking palliative care in psychiatry. JAMA Psychiatry. 2023;80(11):1089-1090.

14. Trachsel M, Irwin SA, Biller-Andorno N, et al. Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks. BMC Psychiatry. 2016;16:260.

15. Westermair AL, Buchman DZ, Levitt S, et al. Palliative psychiatry in a narrow and in a broad sense: a concept clarification. Aust N Z J Psychiatry. 2022;56(12):1535-1541.

16. Dalal S, Bruera E. End-of-life care matters: palliative cancer care results in better care and lower costs. Oncologist. 2017;22(4):361-368.

17. Kavalieratos D, Corbelli J, Zhang D, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104-2114.

18. Schüttengruber G, Großschädl F, Lohrmann C. A consensus definition of end of life from an international and interdisciplinary perspective: a Delphi panel study. J Palliat Med. 2022;25(11):1677-1685.

19. Chochinov HM, Martens PJ, Prior HJ, Kredentser MS. Comparative health care use patterns of people with schizophrenia near the end of life: a population-based study in Manitoba, Canada. Schizophr Res. 2012;141(2-3):241-246.

20. Coffey M, Edwards D, Anstey S, et al. End-of-life care for people with severe mental illness: mixed methods systematic review and thematic synthesis of published case studies (the MENLOC study). BMJ Open. 2022;12(2):e053223.

21. Donald EE, Stajduhar KI. A scoping review of palliative care for persons with severe persistent mental illness. Palliat Support Care. 2019;17(4):479-487.

22. Edwards D, Anstey S, Coffey M, et al. End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study). Palliat Med. 2021;35(10):1747-1760.

23. Lavin K, Davydow DS, Downey L, et al. Effect of psychiatric illness on acute care utilization at end of life from serious medical illness. J Pain Symptom Manage. 2017;54(2):176-185.e1.

24. Shalev D, Fields L, Shapiro PA. End-of-life care in individuals with serious mental illness. Psychosomatics. 2020;61(5):428-435.

25. Wilson R, Hepgul N, Higginson IJ, Gao W. End-of-life care and place of death in adults with serious mental illness: a systematic review and narrative synthesis. Palliat Med. 2020;34(1):49-68.

26. Evenblij K, Widdershoven GAM, Onwuteaka-Philipsen BD, et al. Palliative care in mental health facilities from the perspective of nurses: a mixed-methods study. J Psychiatr Ment Health Nurs. 2016;23(6-7):409-418.

27. Hinrichs KLM, Woolverton CB, Meyerson JL. Help me understand: providing palliative care to individuals with serious mental illness. Am J Hosp Palliat Care. 2022;39(2):250-257.

28. Morgan BD. “No right place to die”: nursing attitudes and needs in caring for people with serious mental illness at end-of-life. J Am Psychiatr Nurses Assoc. 2016;22(1):31-42.

29. Yager J, Strouse TB, Treem J. The quest for humane termination of intractable suffering may be an uphill struggle, not a downhill slide on a slippery slope. Am J Bioeth. 2023;23(11):107-109.

30. Government of Canada. Medical assistance in dying: overview. Accessed June 24, 2024. https://www.canada.ca/en/health-canada/services/health-services-benefits/medical-assistance-dying.html

31. Yager J. Contending with preplanned death: questions for clinicians. J Psychiatr Pract. 2017;23(5):366-374.

32. Brodeur J, Links PS, Boursiquot PE, Snelgrove N. Medical assistance in dying for patients with borderline personality disorder: considerations and concerns. Can J Psychiatry. 2022;67(1):16-20.

33. Lopez A, Yager J, Feinstein RE. Medical futility and psychiatry: palliative care and hospice care as a last resort in the treatment of refractory anorexia nervosa. Int J Eat Disord. 2010;43(4):372-377.