Care at the End of Life

Goals of Treatment

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 the family in the dying process. 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, 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 complete “unfinished business.” 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, 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 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 the most important 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. Everyone dies, but the goal for everyone is to have a good life to the end. In that vein a good death often means respecting the patient's wishes while caring for the patient, family and caregivers.

The recent surge of discussions regarding end-of-life care comes at a time with a burgeoning aging population who are concerned about their preferences being respected and are encouraged to make their preferences known. Gawande cited that palliative care and documented end-of-life wishes established early in the course of life, illness, and impending death are essential. The Conversation Project began in 2010 to help provide an avenue to discuss death and end of life issues in open conversations with family and friends to talk about their wishes for end of life care and not fear talking about death (see: theconversationproject.org ).

Hospice provides an important function for the dying patient by incorporating spiritual and family support, pain management, respite services, and a multidisciplinary approach 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.” Saunders viewed hospices 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.”

Currently, hospices provide home nursing, family support, spiritual counseling, pain treatment, medication, medical care, and some inpatient care for the terminally ill. In 1994, this numbered approximately 340,000 dying persons, and by 2014, approximately 1.6–1.7 million patients received hospice services. A decade ago, the average patient was enrolled roughly 1 month before his or her death, and the vast majority of patients had cancer. According to 2014 data, cancer diagnoses now accounts for less than 50% of hospice admissions, and growth in these admissions has been attributable to dementia, stroke or coma, and lung diseases. The average length of hospice enrollment in 2013 was 72.6 days, with a median length of service of 18.5 days. Women were found to use hospice services more than men, whites more than blacks, and, overall, close to one in four older Americans used this service. Higher hospice utilization rates were found for diseases that impose higher burden on caregivers or diseases with more prognostic accuracy. The three causes of death with highest hospice utilization rates were malignancies, dementia, and heart disease. Medicare pays for the vast majority of hospice services; in 2013 more than 87.2% of hospice patients received services through their Medicare benefits. To qualify for hospice benefits, potential recipients of hospice care must, with their physician and the hospice medical director, determine the benefits provided by their Medicare plan, as there are many options with newer Medicare HMO and PPO plans.

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. To this end, the psychiatrist may serve many functions, including facilitating medical treatment; augmenting communication between the patient, the family, and the 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, psychological style, psychosocial factors and functional capacity, is essential. Studies indicate that psychiatric morbidity in the setting of terminal illness is very high. 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.