Psychiatric and Ethical Aspects of Care at the End of Life

Overview

With nearly 2.5 million deaths each year in the US, 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 novel ethical conflicts. In particular, end-of-life care may create tension between two essential medical principles: to do no harm ( primum non nocere ) and to relieve suffering. For example, prescribing an opioid medication for pain relief may unintentionally (but predictably) hasten a patient's death via respiratory suppression.

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, as well as cognitive disorders or delirium. 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.

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, 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.” Common themes in this category include reconciliation with estranged friends or family, resolution of conflicts with loved ones, and the pursuit of goals and hopes. With the rise of multi-disciplinary team-based care at the end of life, the psychiatrist should be in close communication with the patient's other medical caregivers regarding overall treatment goals.

Additionally, according to Kübler-Ross, patients who are dying can go through a transformational process (that includes, but is not limited to, the stages of denial, anger, bargaining, guilt/depression, and eventual acceptance). Kübler-Ross wrote that these stages may occur in a unique order, may occur simultaneously, and may last for variable amounts of time. More recently, Maciejewski and colleagues reported on an empirical analysis of the stage theory of grief. Studying 233 bereaved individuals over 3 years, these researchers found that the five grief indicators each peaked in the sequence predicted by the stage theory of grief: disbelief, yearning, anger, depression, and acceptance. Given that all of them peak about 6 months post-loss, anyone who continues to suffer from negative grief indicators may benefit from evaluation and treatment. Psychiatrists and other physicians may assist the dying patient in the transition through these often difficult stages toward acceptance—especially if the negative factors persist.

Hackett and Weisman also developed five goals for “appropriate death” that help to 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.

It is perhaps more important than any other principle in the treatment of the dying patient that the patient's treatment be tailored to his or her individual circumstances. Within all the general goals and guidelines, 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 and his or her family, 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. Psychiatrists and other medical caregivers should resist the urge to try to force the patient to fit into any particular model of the dying process. In other words, there is no one “best” way to die.

Hospice care often serves an important function for the dying patient by incorporating spiritual and family support, pain management, respite services, and a multi-disciplinary approach to medical and nursing care. When St. Christopher's Hospice opened in 1967 with Dame Cicely Mary Saunders as medical director, it was dedicated to enabling a patient, “to live to the limit of his or her potential in physical strength, mental and emotional capacity, and social relationships.”

Since then, hospice care has become a widely accepted means of providing care for the terminally ill outside of a hospital setting. Hospices can provide a spectrum of services for patients (including home nursing, family support, spiritual counseling, pain treatment, medication, medical care, and some inpatient care). In 1994, about 340,000 terminally ill patients received hospice care in the US. In 2011, that figure rose to 1.1 million, associated with 45% of the deaths in the US.

Since the US Congress enacted the Medicare hospice benefit in 1982, the vast majority of hospice services have been paid for by Medicare. In 2011, nearly 85% of hospice patients received services through their Medicare benefits. To qualify for hospice benefits, potential recipients of hospice care must be terminally ill and their physician and the hospice medical director must certify that the patient will live for 6 or fewer months if their illness runs its normal course.

Just as hospice care has grown outside of hospital settings, palliative medicine has developed as a discipline in general hospitals to address the “care and management of the physical, psychological, emotional and spiritual needs of patients (of all ages) and their families with chronic, debilitating, or life threatening illness.” This includes establishing goals of care, addressing symptoms (such as pain and respiratory distress), working with patients' families, and educating medical teams about the unique needs of dying patients. The number of palliative care programs has grown rapidly. From 2000 to 2010, the number of palliative care teams in hospital settings increased from 658 (accounting for 25% of US hospitals) to 1635 (accounting for 66% of US hospitals).

The Role of the Psychiatrist

Psychiatric expertise is crucial to the care of patients at the end of life. Psychiatrists, by virtue of their training and experience, appreciate the impact of disease process on behavior, cognition, and affect. In addition, they understand the highly subjective and individual factors that contribute to the personal significance of illness, personality styles and traits, and maladaptive responses to illness. Consequently, the psychiatrist may serve many functions—including facilitating medical treatment, enhancing 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 role is the diagnosis and management of psychiatric symptoms and conditions. As with all other patients, a consideration of the factors that contribute to psychiatric suffering—including biological illnesses, psychological style, psychosocial factors, and functional capacity—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, cognitive impairment (including dementia), and difficulties surrounding bereavement.