In this CME article, learn how best to provide end-of-life care to patients with psychiatric disorders.
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.
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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.
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.
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:
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
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
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