(See also Caring for Sick Children and Their Families: Death and Dying in Children and see also Medicolegal Issues: Advance Directives.)
The traditional medical approach emphasizes goals such as the following:
However, to many patients facing a fatal illness, these goals may be less important than avoiding suffering and (with their family and friends) finding comfort and meaningfulness during the experience of dying. Thus, care of the dying patient should be guided by a realistic assessment of the situation and the merits of various interventions in light of the patient's values and wishes.
People's priorities differ, especially when facing death. Some prefer life to be prolonged, even at the cost of pain, marked confusion, or severe respiratory distress. They may cherish every moment of life, regardless of its quality. For others, quality of life is the overarching concern. They may fear pain or confusion more than death and prefer comfort measures and shorter survival to prolonged disability and struggle. However, to say that a patient's care has changed from curative to supportive or from treatment to palliation is an oversimplification of a complex decision process. Most patients need a customized mix of treatment to correct, prevent, and mitigate the effects of various illnesses and disabilities.
Some people search for closure: They reach out to friends and family to share time and to express love; they complete projects important to their lives and tie up loose ends. Often, with appropriate support, people die at a time and in a way that allows them to experience a satisfying close. Other people cannot accept their imminent mortality and avoid such closure.
Effective care for dying patients usually involves a clinical team because no one caregiver is available 24 h/day and because comprehensive, reliable care requires the skills and perspectives of several disciplines. Palliative care or hospice teams anticipate potential problems and make appropriate arrangements, such as obtaining supplies or opioids in anticipation of a potential emergency. Certain team members can help dying patients who have spiritual needs; such needs should be recognized, acknowledged, and addressed. When death is imminent, an experienced team member can comfort family members and may prevent an inappropriate call to the emergency medical system.
When Death Is Near
The physician and the clinical team should prepare patients and family members for death whenever patients have a condition likely to worsen and cause death, even if death may be a few years in the future. Preparation includes discussion of the likely course and possible complications. Patients should also be advised when death becomes imminent. A health care practitioner must not assume that patients or family members understand the fatal nature of certain disorders (even metastatic cancer) or that they can recognize from a patient's appearance that death is near. Initial discussions should be honest and sensitive to the language and culture of patients and family members. The physician should not delay full disclosure too long because doing so can provide false hope and distort decision making—for example, by reducing the opportunity to attend to spiritual and family concerns. Many patients and family members benefit from making plans based on their priorities and preferences for end-of-life treatments (see Medicolegal Issues: Advance Directives).
Many patients ask whether the clinician can predict the time until death. Such estimates are ordinarily incorrect, both for slowly progressive disorders and for disorders in which death tends to come suddenly, without reliable warning signs (eg, heart failure, emphysema). For some cancers, recognizable warning signs may presage death by several weeks or months. In contrast, many people live for months or years in an unchanging but very fragile state of health. Clinicians tend to give inaccurately optimistic estimates and often are reluctant to predict life expectancy. Some models, such as the Acute Physiologic Assessment and Chronic Health Evaluation II (APACHE II) used to predict in-hospital mortality for ICU patients, are accurate for groups but not for individuals. If a clinician notes that a patient is sick enough that it would be “no surprise” for the patient to die in the coming year, the patient could die with the next complication, which could develop at any time. In such cases, clinicians, patients, and family members should consider prioritizing comfort and life closure over at least the burdensome elements in conventional medical treatment, as well as many preventive services. Family support, advance care planning, focus on relieving symptoms and maximizing function, and attention to spiritual issues are appropriate for patients who are in such fragile health. Clinicians lose many opportunities to help patients and their families live well and meaningfully by postponing the recognition of fragile health until death is clearly imminent.
At some point, virtually every dying patient should have a do-not-resuscitate (DNR) order or a do-not-attempt-resuscitation (DNAR) order written in the medical record. All clinicians in every setting should abide by that decision. Patients, family members, and the clinical team should also make and record other important decisions about medical care (eg, whether patients are to be hospitalized or use a ventilator). Often, implementing these decisions requires specific actions (eg, to have the needed drugs at home).
Family members should know about the changes that may occur in the patient's body shortly before and after death. They should not be surprised by irregular breathing, cool extremities, confusion, a purplish skin color, or somnolence in the last hours.
Some patients close to death develop noisy bronchial congestion or palatal relaxation, commonly known as the death rattle. If this symptom distresses family members, scopolamine or diphenhydramine (see The Dying Patient: Dyspnea) can dry the patient's secretions and reduce the noise. Also, CNS irritability, with agitation and restlessness, may develop. If these symptoms, after review, are judged not to be caused by a drug or untreated disorder, they can be relieved by a sedative.
If a patient is expected to die at home, family members should rehearse whom to call (eg, physician, hospice nurse, clergy) and know whom not to call (eg, ambulance service, 911). They should also have help in obtaining legal advice and arranging burial or cremation services. Religious practices that may affect after-death care of the body should be discussed before death with the patient, family members, or both.
The last moments of a patient's life can have a lasting effect on family members, friends, and caregivers. The patient should be in an area that is peaceful, quiet, and physically comfortable. Any stains or tubes on the bed should be covered, and odors should be masked. Family members should be encouraged to maintain physical contact, such as holding hands, with the patient. If desired by the patient and family members, the presence of friends and clergy should be encouraged. Accommodation should be made for spiritual, cultural, ethnic, or personal rites of passage desired by the patient and family members.
When resuscitation is attempted, family members often appreciate being present during the resuscitation.
After Death Occurs
A physician, nurse, or other authorized person should pronounce the patient dead in a timely way to reduce the family's anxiety and uncertainty. The physician should complete the death certificate as soon as possible because funeral directors need a completed death certificate to make final arrangements. Even when death is expected, physicians may need to report the death to the coroner or police; knowledge of local law is important.
Telling family members about death, particularly unexpected death, requires effort. The physician should use clear language when informing the family that death has occurred (eg, using the word “died”). Euphemisms (eg, “passed on”) should not be used because they are easily misinterpreted. If the family was not present during resuscitation, any events near death, including resuscitative efforts, should be described and the patient's absence of pain and distress mentioned (if true). It is usually wise to be sure that the closest kin is not alone. When told about death, particularly unexpected death, family members may be overwhelmed and unable to process information given to them or to formulate questions. Physicians, nurses, and other health care practitioners should respond to the psychologic needs of family members and provide appropriate counseling, a comfortable environment where family members can grieve together, and adequate time for them to be with the body. When feasible, it may help for a clinician to be with the family members as they enter the room with a newly dead body because that situation is so unfamiliar to most people. Sometimes it is best then to leave family members alone for a while, then return and offer explanations of treatments provided and give the family a chance to ask questions. Friends, neighbors, and clergy may be able to help provide support. Health care practitioners should be sensitive to cultural differences in behavior at the time of death.
The patient or family members and the clinical care team should discuss organ and tissue donation, if appropriate, before death or immediately after death; such discussions are ordinarily mandated by law. The attending physician should know how to arrange for organ donation and autopsy, even for patients who die at home or in a nursing home. Autopsy should be readily available regardless of where the death occurred, and decisions about autopsies can be made before death or just after death. A substantial minority of families welcome an autopsy to clear up uncertainties, and clinicians should appreciate the role of autopsy in quality assessment and improvement.
Last full review/revision November 2007 by Joanne Lynn, MD, MA, MS