Education an important part of death

Patients, families too often left to their own devices

Family members recover faster when they are prepared for the death of a loved one, says Ruth McCorkle, PhD, FAAN, RN, professor of oncology nursing and director of the Center for Advancing Care in Serious Illnesses at the University of Pennsylvania in Philadelphia.

"People who are taught how to help a dying loved one, and who acknowledge that they were a major force to bring about a positive end, will have a much easier time recovering from a loved one's death," says McCorkle. She believes it is the job of the medical community to help bring about this positive end by helping people cope with their losses.

Recalling her training at St. Christopher Hospital in London, where the dying are not shut off from other patients in separate rooms, McCorkle explains that the fear, pain, anger, and loneliness the dying person experiences are frequently transferred to family members. But at that point, the patient and family are all too often left to their own devices.

In a 1986 study of 127 terminally ill cancer patients living with a spouse, McCorkle and her colleagues identified the typical spousal response to the diagnosis of the illness and the experience of caregiving, as a complex process of bereavement on the part of both dying patients and their spouses. While the intensity and duration of distress varied with the age of the survivor, the timeliness of the patient's death, and the adequate preparation and assistance during the illness, surviving loved ones invariably suffered a variety of psychological symptoms.

The symptoms ranged from somatization, obsessive-compulsive behavior, phobic anxiety, and paranoid ideation to depression, anxiety, hostility, and even psychosis. Comprehensive care of the patient and family, including emotional and spiritual support, lessened the distress for all.

The study showed that spouses who were part of a specialized Oncological Home Care program that was administered by medical caregivers who provided "terminal care in a more holistic manner" exhibited significantly lower levels of psychological distress during the illness of the patient and well after the patient's death. In addition to counseling, family members identified the following four behaviors among hospice personal as some of the most important of this holistic approach:

· 24-hour accessibility to the facility;

· effective communication with medical staff;

· nonjudgmental attitudes from caregivers;

· clinical competence.

Few medical facilities address bereavement

Despite a growing awareness of the need for a different approach to terminal care, few medical facilities address the issue of bereavement.

"The typical medical person feels like a failure when death occurs and will withdraw when the patient and the family need them most," says Elwood Spackman, MDiv, chaplain for the assisted living facility Wesley Woods in Atlanta. Spackman is also certified in grief counseling from the Hartford, CT-based Association for Death Education and Counseling.

That is why hospitals, nursing homes, and hospices must have a comprehensive plan that involves the family in the planning for the inevitable, says Spackman. Part of this plan is to provide the family of the patient with a "pastoral presence."

To deal with such wrenching decisions as whether to administer or withdraw certain care, or to decide what is harmful or helpful, Spackman says, spouses and loved ones need both medical advice and spiritual guidance.

If patients make their wishes known before an illness, and if they execute advance directives, these decisions are less complicated, though no less painful, Spackman points out. However, the majority of dying patients have not made these provisions and their families are often torn between emotional, ethical, religious, physical, and economic considerations.

As Spackman sees it, a lingering illness, accompanied by severe physical or mental decline, places an even greater burden on the family. Should a demented spouse be restrained, for example, or a severely diabetic father allowed to eat, or a cancer-stricken mother given illegal drugs?

While Spackman believes in the autonomy of the individual, in cases where rational decisions on the part of the patient cannot be expected, or where therapeutic management crosses the boundary of legality, he counsels the family to seek specific medical and legal advice.

J. Vincent Guss Jr., MDiv, chaplain at Inova Alexandria Hospital in Alexandria, VA, is also in favor of a "holistic approach" to terminal care that includes the patient's family. Ideally, it should begin long before a crisis arises, or the final stage of the terminal illness. Guss would like to see a unified policy encouraging physicians, nurses, social workers, and home health caregivers advise patients and their families to execute advance directives and study the availability of final care facilities in their area.

Guss also urges family discussions on care options and written instructions for medical procedures to be administered or withheld in case of mental or physical incapacitation. Equally important are agreements on financial plans for hospitalization, nursing care, and burial.

"We must overcome our societal taboo of death and communicate with our loved ones and the community," says Guss. Establishing a dialog with the medical community is part of the communication effort and terminal care should be part of a unified health care program, he adds.

As a Lutheran pastor and member of the Evangelical Lutheran Church in America, Guss does not approve of assistance in hastening death. Guss supports his church's view of death, expressed in The Social Statements on Death and Dying, as being a natural process that should neither be prolonged nor hastened. "If medical care is futile," he says, "it is not care. And if it's care, it is not futile."

Address spouses' needs

Bernard Hammes, PhD, director of medical humanities at the Gundersen Lutheran Medical Center in LaCross, WI, also believes in the importance of preparing the spouse of a terminally ill patient emotionally, spiritually, and practically for the death of the patient. Even if advance directives exist, open communication with the spouse must be maintained on various levels, he says.

Physicians need to discuss the medical condition of the dying person and the available treatment options openly, and nursing staff must explain the day-to-day care. Social workers have to assist the spouse in making practical decisions, and pastoral counselors and mental health workers need to offer a patient emotional support, suggests Hammes.

However, Hammes believes that the greatest service physicians, hospitals, social workers, and the clergy can offer people is to educate them about the importance of executing advance directives. Since much of the anxiety and pain people experience during the terminal illness of a loved one is based on ignorance, confusion, fear, and helplessness, he believes that advance directives help them cope much more rationally with the ensuing emotional turmoil.

Hammes agrees with McCorkle that preparing patients for death and helping them to accept it is difficult at best and says it cannot be done without a spiritual connection that must also keep the needs of the survivors in mind.