CHAPTER 60 Care 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.
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 Weisman4 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
