End-Of-Life Issues: Personal Experiences, Cultural Considerations Key in Decision-making

Alzheimer's Association
Friday, 14 July 2000

An 88-year-old man is in the last stages of Alzheimer's disease and has pneumonia. Should the family allow him to be put on a breathing machine? Should the family consent to autopsy to help research? Do the answers to these questions vary culture to culture?

These and other ethical issues were discussed today, at World Alzheimer Congress 2000, by Thomas E. Finucane, M.D., associate professor of medicine at Johns Hopkins University, Baltimore, M.D., and Mary Sano, Ph.D., associate professor of clinical neuropsychology at Columbia University College of Physicians and Surgeons, New York.

Families of people with Alzheimer's may face enormous pressure to use all available medical technology to keep their loved ones alive, in many cases, causing them to make decisions that may not be the expressed wishes of, or in the best interests of, the person with the disease. Such decisions can be whether to use feeding tubes, mechanical ventilators or cardiopulmonary resuscitation, or whether to treat concurrent illnesses with antibiotics or surgery, or to use restraints.

"Ethical questions frequently arise when a balance is required between survival with suffering on one hand and dying in comfort on the other," said Dr. Finucane, author of a major study on tube feeding in patients with advanced dementia published last October in the Journal of the American Medical Association (JAMA). "Someone has to decide whether to give this 88-year old man treatment that has a small chance of working but may be burdensome, or to give a more palliative course where his comfort and dignity are uppermost though his chance of dying is even higher. In situations like these we have to choose between two very basic values. On the one hand, everyone has the right to say, 'keep your hands off of me.' On the other, there is a widespread and deeply held desire not be to dead. We have to reconcile these fundamentals."

In many situations, the standard procedure is to educate the patient and then ask what he or she wants. But in situations where the person with the disease lacks decision-making capacity, such as when a person is in an advanced stage of Alzheimer's, providers educate the family and also look for advance directives to know the person's expressed wishes.

A family's cultural background, as well as how they value life and suffering, also come into play in making end-of-life decisions. "In some cultures, suffering is accepted as a part of life and the process of dying," Dr. Finucane said. "In the majority culture (European), people often want someone to care for them, and don't want to decide for themselves. It's even truer in other cultures. Honoring advance directives also turns out to be very culture-specific, with even more variability in majority and minority cultures."

That doesn't mean that families are unwilling to consider end-of-life decisions, according to Dr. Mary Sano who discussed interviews with multi-ethnic families relating to their consent for autopsy. "There's not such a great difference between cultures [related to consent for autopsy]," she said. "Families make decisions based on their own experiences and on the need to pass on more than just something physical to the next generation. They look for the answers in how the person lived his or her life."

Dr. Sano explained that lack of knowledge about the purpose, potential benefit and procedures is the most common reason for hesitation or unwillingness to participate in autopsy. Yet these multicultural families report willingness to learn more about the benefits of autopsy. "We as clinicians must be sure to share with patients and families of all cultures the valuable opportunity to be partners in the search for answers for treating and preventing this disease," she said.

"The Alzheimer's Association provides valuable information to help families make difficult medical and ethical choices," says Stephen McConnell, vice president of public policy and program services for the Alzheimer's Association (U.S.A.). "The Association takes the position that it is ethically permissible for families not to use every high-tech gadget available to keep their loved one alive, especially if those technologies only prolong suffering. In addition, based on the work of Finucane and Sano, the Association encourages families to think twice before allowing the insertion of a feeding tube for someone in the late stages of Alzheimer's disease, because there is no evidence it will provide any benefit and may even cause harm."

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org