End of Life Issues
All patients have the right to accurate information about their health status and prognosis. Cancer patients are advised to select their choices about future medical treatment before a crisis occurs. Health care professionals have an ethical and legal obligation to provide honest answers to patients questions. Patients' constitutional right to engage in decision making regarding medical interventions at the end of their life is now protected through federal legislation. The Patient Self-Determination Act of 1990 requires all Medicare- and Medicaid-funded health care facilities to advise patients of their legal right to refuse or accept medical treatment. Although legislation may vary from state to state, the best sources of information related to an individual state's legislation include the state Attorney General's Office, Bar Association, Office on Aging, and Hospital Association.
Wills People are free to distribute their property to anyone they wish according to the terms they state in a will. Wills are guided by statutes that vary from state to state. A will must be signed by a least 2 witnesses who stand to gain nothing as a result of the will. A will that does not comply with the statutes of the state in which the person resides will have no legal effect, and the property will pass under the laws of intestacy.
A person dying without a valid will is regarded as having "died intestate." Intestacy statutes are drafted and enacted by a state's legislators. The details of these statutes vary across states, but a surviving spouse and children are the preferred heirs.
Business affairs must be concluded after a person's death. All debts, taxes, funeral and administrative expenses must be paid and the property owned at the time of death distributes to others. The management, administration, and transfer functions are accomplished through the probate process under the supervision of a court.
Will substitutes To avoid the expense and time of probate, people may choose to transfer their property to their heirs while they are still alive. State regulations guide this transfer process.
Advance directives and living wills Advance directives are prospective statements made by competent individuals that specify their medical choices in the event that they are unable to participate in decision making. Advance directives give patients the opportunity to communicate their unique preferences about end-of-life care before they are unable to make their wishes known. Living wills and durable power of attorney are 2 forms of advance directives that are currently available in most states.
Living wills document individuals' choices regarding life-sustaining procedures if for any reason they become unable to participate in decisions regarding their medical care. Information about withholding or withdrawing procedures such as surgery, administrations of antibiotics, cardiac resuscitation, respiratory support, and artificial administration of nutrition and fluids may be stated in living wills.
The patient's delegation of power of attorney to an other person authorizes the person (known as the proxy) to make decisions about withholding or withdrawing medical interventions. The proxy makes decisions regarding medical care only when the patient becomes unable to participate in decision making.
The Joint Commission on Hospital Accreditation requires all members hospitals to have policies related to Do Not Resuscitate (DNR) decision making, resolution of disputes, and protection of patients' rights. It is important that each patient's wishes are clearly documented in his or her medical record. If a patient has not put forth advance directives or a living will and is incompetent, a Do Not Resuscitate decision may be made jointly by the health care team and family members.
The health care professional needs to ascertain if the patient has made decisions about the following end-of-life issues, documented wishes according to the legal statutes of the state, and communicated these wishes to family members and professionals who will provide care during the final phase of life.
Family members and significant others may have to make difficult decisions about the use of life-sustaining interventions on the patient's behalf. In such a stressful situation, many emotions such as fear, anxiety, and sadness are common. Family members will be called on to refuse or accept treatment for the person who has become unable to participate in decision making and has not documented his or her choices in an advanced directive or living will.
Completing personal business Patients may engage in activities that help keep memories of them alive for family and friends. Writing journals and letters, recording shared times on video-tape, recording personal messages, taking photos, and giving personal possessions to loved ones are all meaningful ways to complete personal business.
Patients also may need assistance with conveying their preferences about types of care and procedures and make decisions related to estate planning, funeral arrangements, and preferred location for dying.
Deciding where to die: Patients and families need information and support as they make choices about where the patient will live during the last phase of his or her life. Many people experience difficulty in making this important decision. Patients may say that they do not want to be a burden on family and friends. Family and friends may say that they do not want to abandon the patient at the end of life. Hospital discharge planners and social work professionals are available in most settings to provide the necessary assistance for this important decision.
Nursing homes: Patients and families choose a nursing home as the setting for the phase of final physical decline for many reasons. This setting provides 24-hour nursing care. Arrangements may also be available through community-based hospice agencies to provide hospice services to the dying patient and his or her family.
Hospitals: Patients die in hospitals when they have sustained sudden serious changes in health status (e.g., myocardial infarction or a traumatic injury). Also, terminally ill patients may die while being hospitalized for symptom management.
Home: Many patients prefer to live the last days of life in their home. Services provided by home health care agencies make this possible.
Hospice: Hospice is a form of health care designed to meet the needs of patients and their families during the last six months of life. A physician-directed multi-disciplinary team composed of nurses, social workers, chaplains, bereavement counselors, and volunteers provides a wide range of services. Physical and occupational therapists; pharmacologists; and psychiatric, pediatric, medical and radiation oncology specialists may be available for consultation and intervention. Hospice services may be delivered in free-standing hospice facilities, hospitals, nursing homes, or the patient's home. In the United States there are few free-standing hospice facilities that deliver 24-hour inpatient care. Hospice care is frequently delivered in the home setting.