Concerns at the Time of Death
Managing death: The health care practitioner should prepare family members and friends for the death of their loved one far in advance. Preparation includes discussion of the likely course of events and a reasonable range of complications that could occur during the time until death. Patients should be told that their disorder is likely to cause death (even if the time frame is unclear) and when death becomes imminent. A health care practitioner must not assume that patients or their family members and friends understand the fatal nature of certain disorders (even metastatic cancer) or that they recognize when the patient is nearing death. Initial discussions should be honest and sensitive to the language and culture of patients and their family members and friends. The health care practitioner should not delay full disclosure because such a delay can give patients, family members, and friends false hope and reduce the opportunity for attending to spiritual and family concerns.
Patients and their family members and friends benefit from making plans based on their priorities and preferences for the different possibilities provided by various end-of-life treatments. At some point, almost every dying patient should have a do-not-resuscitate (DNR) order written in their medical record, and all health care practitioners in every setting should abide by this decision. Other important decisions about medical care (eg, whether patients are to be hospitalized or use a ventilator) should also be made and recorded. Often, specific actions are required to implement these decisions (eg, to have the needed drugs at home).
Family members and friends should be told about the changes that may occur in the patient's body directly 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 or friends, scopolamine, atropine, or hyoscyamine, used in doses that dry the patient's secretions, can reduce the noise. Agitation and restlessness may also develop; they can be relieved with a sedative.
If a patient is expected to die at home, family members and friends should be told whom to call (eg, physician, hospice nurse) and whom not to call (eg, ambulance service). They should also be told how to obtain legal advice and how to arrange burial or cremation services. Religious practices may affect how the body is cared for and usually should be discussed before death with the patient and their family members and friends.
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 and friends should be given the opportunity to be with their loved ones and to maintain physical contact with the patient as desired (eg, holding hands). If desired by the patient and family members, the presence of friends and clergy should be encouraged. Accommodations should be made for spiritual, cultural, ethnic, or personal rites of passage desired by the patient and family members.
Hospice: Hospice is a concept as well as a program of care. It is specifically designed to minimize suffering for dying patients and their family members and friends. In the US, hospice is the only widely available comprehensive service that supports very sick people at home. Philosophically, it forgoes most diagnostic testing and life-prolonging treatments in favor of symptom relief, education of patients and their family members and friends about appropriate care, and comfort care.
Hospice is always interdisciplinary and relies on physicians, nurses, and attendants (eg, home health aides). Pharmacists, nutritionists, and therapists may also be involved. Care may be provided at the patient's home, in a nursing home, or in inpatient hospice homes. Traditionally, hospitals and rehabilitation centers do not provide such care, but some hospitals have or are developing inpatient palliative care units that can provide specialized care of the dying; each year, > 50% of Americans who die do so in acute care hospitals.
Home hospice programs are now widely available in the US. These programs provide a package of services outlined in the Medicare hospice benefit. Almost all home hospice agencies are now Medicare-eligible because Medicare is by far the most common way to fund home hospice services. Medicare-eligible hospice programs are mandated by law to provide the same services to both Medicare and non-Medicare patients. This mandate has resulted in considerable standardization of hospice services nationally.
Hospice care can provide most necessary medical treatments and durable medical supplies such as a hospital bed, O2 for use at the patient's home, and other medical equipment that may be needed. Home hospice nurses oversee the medical care plan; they give drugs to relieve pain and other symptoms and coordinate care provided by other members of the hospice team, such as home health aides, who assist with bathing, bed changes, and other physical care. Physicians who work with the hospice program communicate with nurses regularly and can see patients as needed.
Hospice also provides psychologic support and counseling to patients and their family members and friends. As part of that effort, hospice care workers should prepare family members and friends for the death of their loved one.
Most patients ill enough to require hospice also require some assistance with daily activities (eg, dressing, bathing, preparing food), and some may be completely dependent. If family members and friends are unable to provide this care, home attendants may be engaged. However, these services are usually not covered by hospice programs; private funds may be needed.
Medicare or insurance pays for most home hospice services, but usually only after a physician certifies that a patient has a terminal disorder and that life expectancy in the usual course of the disorder is < 6 mo.
Despite widespread availability of hospice, most Americans die in hospitals (or in nursing homes) and without hospice care. Many factors contribute to this underuse. For example, some health care practitioners are reluctant to use hospice because a treatable condition outside of the hospice program's capabilities may develop. Because patients can leave hospice at any time and re-enroll later, this reluctance is not appropriate. Rather, early hospice enrollment may be a good way to provide comprehensive supportive care at home when such care is needed.
Other factors that may decrease hospice use include a family's unfamiliarity with and fear of caring for a dying person, a patient's lack of a support system at home, unavailability of or lack of knowledge about hospice, inability to predict or unwillingness to discuss imminent death, and health care practitioners' traditional goals for care, which are overwhelmingly directed toward cure rather than palliation.
Recently, goals similar to those of hospice have been achieved in acute care inpatient settings. These goals were achieved by educating staff members, identifying patients who may benefit from end-of-life care, and increasing use of the best practices for comfort care.
After death: A physician, nurse, or other authorized person should make the official determination of death as quickly as possible to reduce the anxiety and uncertainty of family members and friends. Family members or funeral directors should be provided with a completed death certificate as quickly as possible. Even when death was expected, a health care practitioner may need to report the death to the coroner or police.
Health care practitioners should respond to the psychologic needs of family members and friends and provide appropriate counseling, a comfortable environment where family members can grieve together, and adequate time for them to be with the body. 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.
Organ donation, if appropriate, should be discussed before death or immediately after death; such discussions are sometimes 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. The decision about having an autopsy can be discussed before or just after death. Usually, a health care practitioner who has had previous contact with family members should discuss autopsy with family members. This discussion should not be left to a covering health care practitioner or house officer.
This topic was last updated July 2006.
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