60: Care at the End of Life

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CHAPTER 60 Care at the End of Life

Rebecca W. Brendel, MD, JD, Lucy A. Epstein, MD, Ned H. Cassem, MA, PhL, MD, SJ, BD

KEY POINTS

• Psychiatrists face multiple challenges when caring for a dying patient, encompassing issues of diagnosis and treatment, as well as larger ethical and legal considerations.

• Psychiatrists may be uniquely effective in helping a dying patient by ensuring optimization of palliative care and by assisting the patient and his or her family in the dying process.

• Psychiatric issues (such as depression, anxiety, delirium, substance dependence, and coping difficulties) are common conditions seen in patients at the end of life.

• Suicidal thoughts should not be considered solely as “understandable” and should be addressed actively by the psychiatrist.

• Psychiatrists play an important role in the mediation of important ethical and legal considerations that may occur at the end of life.

OVERVIEW

With more than 2 million deaths each year in the United States,¹ providing both competent and compassionate care for patients at the end of life is a crucial task for physicians. Caring for patients at the end of life occurs amidst an often complex background of medical, psychiatric, ethical, and legal concerns. This chapter provides an overview of the central principles of care, diagnosis, and treatment of the dying patient from the psychiatric perspective. It also examines current concepts in ethics, as well as legal precedents that surround this evolving area of medicine, where advances in medical technology and practice have extended the human life span and led to the emergence of both opportunities and conflicts at the end of life.

End-of-life care may create tension between two essential medical principles: to do no harm (primum non nocere) and to relieve suffering. Caring for patients at the end of life is further complicated when the medically ill also suffer from psychiatric co-morbidities, such as major depression and anxiety. Finally, end-of-life decisions occur in a dynamic societal and legal context. For example, recent attention regarding end-of-life issues has focused on physician-assisted suicide and on legal cases that surround withdrawal of life-sustaining treatments (such as the case of Theresa Schiavo, a Florida woman in a minimally conscious state who died in 2005 after a protracted legal battle between her husband and her parents about whether her feeding tube should be removed).

GOALS OF TREATMENT

An important first step in the treatment of the dying patient is for the psychiatrist and the patient to define treatment goals. According to Saunders,² the primary aim of care is to help patients “feel like themselves” for as long as possible. Care at the end of life also offers an important opportunity, according to Kübler-Ross, to address and to complete “unfinished business.”³ Common themes in this category include reconciliation with estranged friends or family, resolution of conflicts with loved ones, and the pursuit of remaining hopes. Additionally, according to Kübler-Ross,³ patients who are dying go through a transformational process (which includes stages of denial, anger, bargaining, guilt/depression, and eventual acceptance). These stages may occur in a unique order, may occur simultaneously, and may last variable amounts of time. Psychiatrists and other physicians may assist the dying patient in the transition through these often difficult stages toward acceptance.

Hackett and Weisman ⁴ also developed five goals for “appropriate death” that may focus therapeutic efforts for the treatment of a dying patient. These goals include freedom from pain, optimal function within the constraints of disability, satisfaction of remaining wishes, recognition and resolution of residual conflict, and yielding of control to trusted individuals. Perhaps more important than any other principle in the treatment of the dying patient is that the treatment be individualized. That is, within these general goals and paradigms, each patient’s unique characteristics will necessitate careful tailoring of clinical interventions. This case-by-case approach can be accomplished only by getting to know the patient, by responding to his or her needs and interests, by proceeding at his or her pace, and by allowing him or her to shape the manner in which those in attendance behave. There is no one “best” way to die.

Hospice can provide an important function for the dying patient by incorporating spiritual and family support, pain management, respite services, and a multidisciplinary ap-proach to medical and nursing care. When St. Christopher’s Hospice opened in 1967 with Saunders as medical director, it was dedicated to enabling a patient, according to Saunders, “to live to the limit of his or her potential in physical strength, mental and emotional capacity, and social relationships.”² Saunders viewed hospice as the “alternative to the negative and socially dangerous suggestion that a patient with an incurable disease likely to cause suffering should have the legal option of actively hastened death, that is, euthanasia.”²

Currently, hospice provides home nursing, family support, spiritual counseling, pain treatment, medication, medical care, and some inpatient care for the terminally ill. In 1994,⁵ this numbered approximately 340,000 dying persons, and by 2005, more than 1 million patients received services from hospice.⁵ A decade ago, the average patient was enrolled roughly 1 month before his or her death, and the vast majority of patients had cancer.⁶^–⁸ According to 2005 data, cancer diagnoses now account for less than 50% of hospice admissions, and growth in these admissions has been attributable to dementia, stroke or coma, and lung diseases.⁵ The average length of hospice enrollment in 2005 was nearly 2 months, with a median duration of 26 days.⁵ These increases in lengths of stay (LOS) were attributed to a decrease in the number of hospice admissions of 7 days or less and an increase in patients who received care for 6 months or longer.⁵ Medicare pays for the vast majority of hospice services; in 2005 more than 80% of hospice patients received services through their Medicare benefits.⁵ To qualify for hospice benefits, potential recipients of hospice care must have their physician and the hospice medical director certify that they are terminally ill and that they will live 6 or fewer months if their illness runs its normal course.⁹

THE ROLE OF THE PSYCHIATRIST

Psychiatrists can play a crucial role in the effective management of patients at the end of life because of their abilities to appreciate the medical aspects of disease, to understand the highly subjective and individual factors that contribute to the personal significance of illness, to understand personality styles and traits, and to engage with patients to modulate maladaptive responses to illness.^10,¹¹ To this end, the psychiatrist may serve many functions, including facilitating medical treatment, augmenting communication among the patient and his or her caregivers, and modeling those qualities that may be helpful for the patient. Above all, the psychiatrist’s primary goals are the diagnosis and management of psychiatric symptoms and illnesses. As for all other patients, a consideration of all factors that contribute to psychiatric suffering, including biological illnesses (Axis I and III), psychological style (Axis II), psychosocial factors (Axis IV), and functional capacity (Axis V), is essential. The most common issues that lead to psychiatric interventions for the dying patient include major depression, anxiety, personality disorders, delirium and other organic brain syndromes, refractory pain, substance abuse, and difficulties surrounding bereavement.^12,¹³

Depression

The more seriously ill a person becomes, the more likely the person is to develop major depression.¹⁴ Careful vigilance for depression is necessary, as both symptoms of depression and the impact of depression on other aspects of the patient’s life and medical care are problematic. For example, Weisman formulated the wish to die as an existential signal that the person’s conviction “that his potential for being someone who matters has been exhausted.”¹⁵ Ganzini and colleagues¹⁶ documented that severely depressed patients made more restricted advance directives when depressed, and they changed them after their depression remitted. At Memorial Sloan Kettering Cancer Center, Breitbart and Holland¹⁷ compared terminally ill patients with cancer and acquired immunodeficiency syndrome (AIDS) with suicidal ideation to similar patients with-out suicidal ideation. The primary difference was the presence of depression in the patients with suicidal thoughts.¹⁷ Thus, aggressive treatment of depression is a cornerstone of care, as it dramatically decreases suffering and improves quality of life. In terms of specific treatments, psychiatrists may consider the use of rapidly acting treatments that target specific symptoms. In addition to antidepressants, stimulants are another useful class of agents; they have several advantages, including the rapid onset of improved mood and potentiation of co-administered narcotics (with less accompanying sedation).

Suicidal ideation, if it appears, should not be thought of as an “understandable” response but rather as a condition that warrants immediate investigation and treatment.¹³ It is also important to differentiate suicidal ideation from a stated desire to hasten death. The desire to hasten death has been identified consistently among a minority of terminally ill patients.¹⁸^–²⁰ While the desire to hasten death is frequently associated with depression, other factors (such as pain, existential concerns, loss of function, and social circumstances) also play critical roles.¹⁸^–²⁷ The psychiatric consultant needs to listen carefully to the patient who desires hastened death, to treat any underlying psychiatric or physical problem, and to take steps to lessen distress.²⁴

Anxiety

Anxiety frequently occurs as the end of life and requires psychiatric attention.^12,¹³ Impending death can generate severe anxiety in those who face death themselves, as well as their family members, friends, and caregivers. The patient who experiences anxiety surrounding death may not necessarily be able to articulate his or her fears, although anxiety may be related to prior losses or experiences that involve the death of others. Common fears associated with death include helplessness or loss of control, ideas of guilt and punishment, physical pain or injury, and abandonment.¹²^–¹⁴ ^,28 ^,29 The psychiatrist can be helpful by addressing these fears and by exploring issues of isolation, abandonment, and suffering. Appropriate attention should also be directed toward psychopharmacological management of anxiety symptoms.

Personality Considerations

The terminally ill patient who has a personality disorder (such as narcissistic or borderline personality disorder) or other coping difficulties can present a particular challenge for care providers. For such a patient, help is hard if not impossible to accept and trust, which can interfere with his or her ability to take comfort from those around them.^10,^12,¹³ For such a patient, much of the situation is out of his or her immediate control; this elicits regression and the use of more primitive defenses (such as splitting). This may manifest as poor communication with treaters, inadequate pain control, and difficulty in the resolution of interpersonal conflicts.¹³ Psychiatrists may find it useful to call on psychodynamic diagnostic and treatment skills to assist such a person in accepting palliative care.¹² Treaters can help to transform the negative countertransference (on the part of caretakers) into an understanding of how best to help the patient undergo the dying process.^12,¹³ Working closely with family and friends of the patient, as well as the medical team, is important in these situations.^12,¹³

Delirium and Cognitive Changes

As terminal illness progresses, medical complications (such as delirium and other cognitive changes) can occur. These complications can manifest as confusion, psychosis, agitation, or a multitude of other symptoms and can be caused by the medical illness, its treatment, or both. Effective management of changes in affect, behavior, and cognition due to delirium is important, as it can indicate worsening of medical illness and can greatly affect the quality of time spent with friends, family, and caretakers.^12,¹³

Pain

Pain management can be a complex challenge requiring extensive expertise. Freedom from pain is basic to every care plan, and it should be achievable in most cases.¹² However, for a multitude of reasons, pain is often undertreated by medical staff.³⁰^–³⁴ Pain management may be particularly challenging for a patient with a history of substance dependence; patients with a history of addiction are more likely to receive inadequate pain management than patients without a history of substance abuse or dependence.^11,^35,³⁶ This may be due to concerns about higher-than-expected (and escalating) doses of opiates, potential misuse or diversion, and fears of legal consequences of prescribing narcotics to a patient with substance dependence.^35,³⁷ Evidence of abuse may include unexpectedly positive results of toxicology screens, frequent requests for higher doses, recurrent reports of lost prescriptions, and multiple visits to various providers or emergency departments for prescription refills.³⁸ Physicians who prescribe to such patients may have divergent opinions on the treatment of substance dependence in the terminally ill. Some physicians feel that carefully monitoring a terminally ill patient on an opiate or actively treating the patient’s substance dependence deprives the patient; however, optimal relief of suffering mandates acknowledgement and treatment of active substance abuse issues.³⁹ The goal of care requires the physician to separate the management of the patient’s pain from the management of addiction and to treat both.^11,⁴⁰ Careful monitoring of a patient’s narcotic use, use of a multidisciplinary team, encouragement of substance abuse treatment, limitation of prescribing power to a single provider, and utilization of screening tests (e.g., urine toxicology) may all be useful in the management of the terminally ill person with substance dependence.⁴¹

Psychosocial Considerations

Optimal end-of-life care includes an understanding of the major areas of psychosocial concern, such as family, work, religion, faith, ethnicity, and culture. The presence of the family is crucial to help a patient resolve long-standing conflicts (if possible) and to provide a context for honoring and remembering the patient.¹² Psychiatrists can aid the family by encouraging the sharing of feelings among family members and by helping to create specific plans for the family (such as the compilation of commemorative items).¹³ At the same time, an understanding of the complexities of family interactions (both positive and negative) helps prevent harm to a potentially fragile family system. For example, a recent randomized clinical trial of family-focused grief therapy found that it could help prevent pathological grief in family members; however, it also had the potential to increase conflict in families where the level of hostility was high.⁴²

As with family relationships, a sense of vocational identity can help create meaning for a patient at the end of life.¹² For some, work can be critical for self-esteem. As a patient can begin to feel less valuable when work ceases or retirement arrives, the presence of former and current colleagues can be quite supportive.

Similarly, thoughtful discussion about a patient’s beliefs and faith can provide an opportunity for a patient to further his or her sense of meaning and thoughts about an afterlife.¹³ Many patients are grateful for the chance to express thoughts about their faith. The patient’s own clergyperson, if available, can often provide valuable information and insights about the patient and family and help smooth the course before death. Writers such as Allport⁴³ and Feifel⁴⁴ have contrasted an extrinsic religious orientation (in which religion is mainly a means to social status, security, or relief from guilt) with an intrinsic religious orientation (in which the values appear to be internalized and subscribed to as ends in themselves). Experimental work⁴⁵ and clinical experience¹² indicate that an extrinsic value system, without internalization, seems to offer less assistance in coping with a fatal illness than intrinsic religious commitment (which can offer considerable stability and strength).

Last, patients from underserved communities or minority populations within the United States may have needs that may not be served by the current health care system. Unfortunately, the same institutional, cultural, and individual factors that generate disparities in care for minority populations in general also affect care at the end of life.⁴⁶ These factors include lack of access to care, undertreatment of pain, and mistrust of the health care system.⁴⁶^–⁴⁸ Further, important differences among ethnic groups and cultures can be found at all segments of end-of-life care. For example, several studies have shown that African American patients, as well as older individuals from other ethnic backgrounds (such as Latino, Asian, or Native American), are somewhat less likely to have arranged for an advance directive as compared to Caucasian patients.⁴⁹ There are also important differences in terms of preferences for life-sustaining treatment. For example, in a study involving multiple ethnic groups, African Americans had the highest rate of preferring life-sustaining treatment, and European Americans had the lowest rates.⁵⁰ Multiple other studies have demonstrated a preference by African Americans to choose more life-sustaining treatment and cardiopulmonary resuscitation in the face of terminal illness.^46,⁵¹^–⁵⁴

Additionally, culture may also influence the decision-making process. For example, family-centered (rather than individual) decision-making is common in certain ethnic groups within the United States, which challenges the traditional Western model of the importance of individual autonomy.⁴⁶ Studies have found a higher use of family-centered decision-making among Latino and Asian groups in the United States, which may include the decision to disclose (or not to disclose) the diagnosis of a terminal illness to an individual patient.⁴⁹ Thus, attention to cultural competency by psychiatrists plays a significant role in mediating end-of-life care for patients from all ethnicities and cultures.

CHALLENGES FOR CARE PROVIDERS

The emotional intensity associated with providing empathy and support for the dying patient during a time of need may challenge and tire caregivers (such as family and professional staff). Caregivers may experience helplessness and despair in the face of their powerlessness over a patient’s approaching death. If left unaddressed, these feelings in caregivers can cause the caregiver to avoid the patient, to retreat, or even to convey to him or her how burdensome he or she is to caregivers. This could be devastating to the helpless patient who looks to his or her caregiver for hope. Hence, among the greatest psychological requirements for caregivers is to learn to live with negative feelings and to resist the urge to avoid the patient—actions that convey to the patient that he or she no longer matters. Certain traits make these empathic difficulties hazardous for some caregivers. Dependent persons who expect patients to appreciate, to thank, to love, and to nurture them are unconsciously prone to exhaust themselves regularly because they “can’t do too much.” This creates a pattern that may be sustainable for a patient with the capacity to nurture the caregiver, but it could have a disastrous outcome if the patient is depleted or intractably hostile. The harder the caregiver strives, the less rewarding the work becomes. Exhaustion and demoralization follow. Some caregivers want to please every physician they consult and come to similar exhaustion because many of these patients cannot improve.

ETHICS AND END-OF-LIFE CARE

Principles

End-of-life care, by its nature, carries a host of ethical questions that the psychiatrist is likely to encounter. A brief discussion of principles is not intended to supplant the need for concrete individualized judgments for every patient. Principles provide anchor points from which clinical reasoning can proceed—specifically, when limitation of life-supporting treatment is proposed.

The primary obligation of the physician to the patient in traditional medical ethics has been expressed in both positive and negative terms. The negative goal, always referred to first, is not to harm the patient (primum non nocere). The positive obligation is to restore health, to relieve suffering, or both. Our contemporary dilemma, as Slater ⁵⁵ has pointed out, arose because we now have many situations in which these two aims come into conflict (i.e., the more aggressive the efforts to reverse an incurable illness, the more suffering is inflicted on the patient). For example, if a 70-year-old man with large cell cancer of the lung is found to have metastatic spread of the disease to the other lung and to his liver, any treatment of the cancer is likely to make him feel worse and would be unlikely to prolong his survival.

Second, modern medicine respects patients’ right to autonomy. This principle guarantees any competent patient the right to refuse any treatment, even a life-saving one. This was the emphasis of the medical ethics of the 1970s and 1980s and it focused on refusing life-prolonging treatment, such as mechanical ventilation, and more recently, nutrition and hydration. Honoring such refusals presupposes that the patient is competent. It is important to remember that competent patients may make decisions that providers may view as irrational.⁵⁶ However, a patient cannot insist that the physician provide treatment that is considered futile.⁵⁷^–⁶⁰ Defining futility continues to be a goal of medical ethics as a balance is forged between the autonomy interest of patients to opt for aggressive treatment and concern by physicians that there is a duty not to offer or provide treatments that are ineffective.^61,⁶²

Limitation of Life-Sustaining Treatment

One salient concept for psychiatrists to understand is the limitation of life-sustaining treatment. Whenever the risks or burdens of a treatment appear to outweigh the benefits, use of that treatment should be questioned by both physician and patient. Limitation of life-prolonging treatment is generally reserved for three categories of patients. First, patients whose illness is judged to be irreversible, who are moribund, and who need to be protected from needlessly burdensome treatments may refuse life-sustaining treatment. This is widely accepted for patients who will die with or without treatment (such as the patient with advanced metastatic cancer). Second, because of the right to refuse treatment, competent patients who are not moribund but who have an irreversible illness have also been allowed to have life-sustaining treatments stopped. Last, competent patients with a reversible illness have the right to refuse any treatment, including life-saving treatments.

However, complications emerge when a patient is not able to make or voice a decision regarding his or her wishes. In these situations, the state has a recognized legal interest in preserving life, and it may be difficult to ascertain whether the patient had a countervailing autonomy interest. One historical example is the case of Karen Ann Quinlan, a 21-year-old woman who in 1976 fell into an irreversible coma while at a party. This case became a legal battle between the right of Quinlan’s mother (who as her guardian wished to withdraw life-sustaining treatment from her daughter and allow her daughter to die with dignity) and the state’s interest in preserving life. In the end, the Supreme Court of New Jersey decided that, if it was believed, to a reasonable degree, that the coma was irreversible, life-sustaining treatment (e.g., with a respirator) could be removed.⁶³ Now, more than 30 years later, the standard medical recommendation in the case of irreversible coma is to stop all treatment (including nutrition and hydration). This judgment is made on the principle of the inevitability of death and the futility of any treatments to prevent this.

For patients in a persistent vegetative state (a state in which patients have a functioning brainstem but total loss of cortical function) a complicated scenario emerges.^64,⁶⁵ The many clinical dilemmas in this condition are perhaps best exemplified by the Nancy Cruzan case in 1990. Seven years after the automobile accident that left her in a persistent vegetative state, Nancy Cruzan’s feeding tube was removed. She died 12 days later. Her parents’ request that the tube be removed initiated a journey that took them through the state and federal court system, up to the United States Supreme Court. The United States Supreme Court’s decision^66,⁶⁷ affirmed that competent patients have the right to refuse treatment, that forgoing nutrition and hydration is no different from forgoing other medical treatment (such as artificial ventilation or pressor agents), but that Missouri (and other states) could require “clear and convincing evidence” that the patient, while still competent, had rejected the idea of life-sustaining treatment under such circumstances. That is, the autonomy interest of the patient in a persistent vegetative state had to be weighed against the state’s interest in protecting life. However, according to the United States Supreme Court, while Missouri could require clear and convincing evidence of a patient’s wishes when that patient was previously competent, states could also adopt less rigorous standards.

The complicated scenario of the persistent vegetative state was more recently revisited in the Theresa Schiavo case of 2004.⁶⁸ In this case, Theresa Schiavo was determined to be in a persistent vegetative state and her husband, who was her guardian, wished to withdraw life-sustaining nutrition and hydration from her, in accordance with what he believed her wishes would have been. However, her parents opposed removal of the life-sustaining measures. Although the Florida Supreme Court’s decision rested on a narrow legal analysis of the proper powers of each branch of the state government, the case revived public debate about withdrawal of care at the end of life. Following the case, many states began debating the amount of proof required to establish that an incompetent patient, when competent, would have opted to have his or her life-sustaining care withdrawn.

As a whole, the legal cases regarding end-of-life decision-making explicitly give patients the right to exercise their autonomy regarding what care they receive. For competent patients, these wishes may be expressed at the time that they are making decisions regarding end-of-life care through the use of advance directives that take effect in the event of future incapacity to make or express decisions about their care. These directives may be instructional, may appoint a substitute decision-maker, or both. Instructional directives placing limits on life-sustaining treatment, however, may be difficult to interpret on clinical grounds. For example, requests (such as the desire that “no extraordinary means” be taken to preserve life) may be difficult to interpret in actual clinical settings. Advance directives that appoint a substitute decision-maker with whom the patient has discussed his or her wishes may be a more flexible way to enact a patient’s wishes. Specifically, a substitute decision-maker can use his or her knowledge of the patient’s prior expressed wishes in combination with the actual clinical scenario in order to more reliably effect the outcome that the patient would have wanted, if competent.