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The End of Life
The Definition of the End of Life
In the United States, approximately 2.4 million people die each year. While death itself remains a mystery and while caring for the dying traditionally has not been well researched or adequately taught as part of medical training, caring for patients at the end of life is an important responsibility and a rewarding opportunity for clinicians. Clinicians battling to prolong life must recognize when life is ending in order to continue caring properly for their patients. Unfortunately, end-of-life practices do not always meet the standards set by professional organizations and most clinical practice guidelines do not include significant attention to end-of-life care. End-of-life care refers to focusing care for those approaching death on the goals of relieving distressing symptoms and promoting quality of life rather than attempting to cure underlying disease. From the medical perspective, the end of life may be defined as that time when death—whether due to terminal illness, acute or chronic illness, or age itself—is expected within weeks to months and can no longer be reasonably forestalled by medical intervention. Yet, the palliative approach to caring for patients facing the end of life outlined in this chapter applies equally well to any patient with a serious, chronic illness at any point in their illness trajectory and should be provided simultaneously with all other appropriate medical treatments.
Prognosis at the End of Life
Clinicians play an important role in helping patients understand that their lives are ending. This information influences patients' treatment decisions and may change how they spend their remaining time. While certain diseases such as cancer are amenable to prognostic estimates regarding the time course to death, the other common causes of mortality in the United States—including heart disease, stroke, chronic lung disease, and dementia—have more variable trajectories and difficult to predict prognoses (Figure 5–1: illustration). Even for patients with cancer, clinician estimates of prognosis are often inaccurate and generally overly optimistic. Nonetheless, clinical experience, epidemiologic data, guidelines from professional organizations,* and computer modeling and prediction tools may be used to help patients identify the end period of their lives. Clinicians can also ask themselves "Would I be surprised if this patient died in the next year?" to determine whether a discussion of prognosis and provision of end-of-life care would be appropriate. If the answer is "no," then the clinician should initiate a discussion. Recognizing that patients may have different levels of comfort with prognostic information, clinicians can introduce the topic by simply saying, "I have information about the likely time course of your illness. Would you like to talk about it?"
Expectations About the End of Life
Patients' experiences of the end of life are influenced by their expectations about how they will die and the meaning of death. Many people fear how they will die more than death itself. Patients report fear of dying in pain or of suffocation, of loss of control, indignity, isolation, and being a burden to their families. All of these anxieties may be alleviated with good supportive care provided by an attentive group of caretakers.
Since medical advances can often forestall the end of life, death has become "medicalized." No longer seen clearly as a natural and profound personal and spiritual event basic to the human condition, death is often regarded by clinicians, patients, and families as a failure of medical science. This attitude can create or heighten a sense of guilt about the failure to prevent dying. Both the general public and clinicians are complicit in denying death, treating dying persons as patients and death as an enemy to be battled furiously in hospitals rather than as an inevitable outcome to be experienced as a part of life at home. As a result, approximately 75–80% of people in the United States die in hospitals or long-term care facilities.
The clinician may continue to pursue cure of potentially reversible disease for some patients. For all, however, offering comfort and helping the patient prepare for death are foremost considerations. Patients at the end of life and their families identify a number of elements as important to quality end-of-life care: adequate pain and symptom management, avoiding inappropriate prolongation of dying, preserving dignity, preparing for death, achieving a sense of control, relieving the burden on others, and strengthening relationships with loved ones. Clinicians can help patients pursue their care goals in a process called advance care planning.
Communication & Care of the Patient
Caring for patients at the end of life requires the same skills clinicians use in other tasks of medical care: diagnosing treatable conditions, providing patient education, facilitating decision-making, and expressing understanding and caring. Communication skills are vitally important. In particular, clinicians must become experts at delivering bad news and then dealing with its consequences (Table 5–1). Higher-quality communication is associated with greater satisfaction and awareness of patient wishes. Three further obligations are central to the clinician's role at this time. First, he or she must work to identify, understand, and relieve suffering, which may include physical, psychological, social, or spiritual distress. Disease and disability at the end of life can threaten a person's sense of integrity or "intactness" and thereby cause suffering. In assisting with redirection and growth, providing support, assessing meaning, and fostering transcendence, clinicians can help ameliorate their patients' suffering and help the patient live fully during this stage of life. Second, clinicians can serve as facilitators or catalysts for hope. While a particular outcome may be extremely unlikely (such as cure of advanced cancer following exhaustive conventional and experimental treatments), hope may be defined as the patient's belief in what is still possible. Although expecting a "miraculous cure" may be simplistic and even harmful, hope for relief of pain, for reconciliation with loved ones, for discovery of meaning, and for spiritual transformation is realistic at the end of life. With questions such as "What is still possible now for you?"—"What do you wish for before you die?"—"What good might come of this?" clinicians can help patients uncover hope, explore meaningful and realistic goals, and develop strategies to realize them.
Third, dying patients' feelings of isolation and fear demand that clinicians assert that care will continue to be provided throughout the final stage of life. The promise of nonabandonment is perhaps the central principle of end-of-life care and is a clinician's pledge to an individual patient to serve as a caring partner, a resource for creative problem-solving and relief of suffering, a guide during uncertain times, and a witness to the patient's experiences—no matter what happens. Clinicians can say to a patient, "I will care for you whatever happens." Dying patients need their clinicians to offer their presence—not necessarily the ability to solve all problems but rather a commitment to recognize and receive the patients' difficulties and experiences with respect and empathy. At its best, the patient-clinician relationship can be a covenant of compassion and a recognition of common humanity.
Caring for the Family
In caring for patients at the end of life, clinicians must appreciate the central role played by family, friends, and romantic partners and often must deal with strong emotions of fear, anger, shame, sadness, and guilt experienced by those individuals. While significant others may support and comfort a patient at the end of life, the threatened loss of a loved one may also create or reveal dysfunctional or painful family dynamics. Furthermore, clinicians must be attuned to the potential impact of illness on the patient's family: substantial physical caregiving responsibilities and financial burdens as well as increased rates of anxiety, depression, chronic illness, and even mortality. Family caregivers, typically women, commonly provide the bulk of care for patients at the end of life, yet their work is often not acknowledged or compensated.
Clinician Self-Care
Many clinicians find caring for patients at the end of life to be one of the most rewarding aspects of practice. However, working with the dying requires tolerance of great uncertainty, ambiguity, and existential challenges. Clinicians must recognize and respect their own limitations and attend to their own needs in order to avoid being overburdened, overly distressed, or emotionally depleted. Open recognition of their own feelings enables clinicians to process their emotions and take steps to care for themselves: conferring and consulting with colleagues, retreating, relaxing and recuperating, obtaining informal or professional support, or even—under extraordinary circumstances—transferring the care of a patient to another clinician when it is no longer possible for the original clinician to meet the patient's needs. Moreover, care of patients at the end of life is not solely the responsibility of physicians. Ideally, physicians, nurses, social workers, chaplains, pharmacists, and other clinicians should coordinate their efforts as part of an interdisciplinary team to care for patients and support one another.
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