What sets Alzheimer's disease apart from many other terminal diseases is the progressive, irreversible loss of cognitive abilities, which begins early and becomes increasingly worse. The majority of patients arrive at the later stages of Alzheimer's without advance directives. "In the mild stage, many patients are able to make decisions, but a substantial number, perhaps even 50%, will have difficulty with complex decisions, like planning for the future," says Dr. Jason Karlawish, of the University of Pennsylvania's Institute of Aging.
By the advanced stage, the patient is no longer able to communicate pain or certain needs. "Once someone loses language," Dr. Karlawish says, "cognition becomes an interpretive act on the part of others." Pain is often related to immobility, as well as constipation, osteoarthritis, and osteoporosis. The challenge to the physician "is to interpret the meaning of grunts, groans, and agitation, which are often misinterpreted by family members and the physician, and determine what the need is that is not being met."
Advance Directives: Durable Power of Attorney
Ideally, the healthcare team should initiate discussion of an end-of-life care plan while the patient is able to participate. The team should also be sensitive to the patient's and family's ability to tackle these issues head-on. Some families will be quite capable of making orderly decisions about an impending death, but others may feel uncomfortable even thinking about what is going to happen to their loved one.
It may help family members to consult with a social worker. During this difficult period, social workers can counsel families, and provide key information to other members of the healthcare team about the family's dynamics, history, and emotional make up.
The durable power of attorney for health care, also referred to as the medical power of attorney, empowers one designated individual to make all medical decisions (if the patient lacks capacity), unless limited by other directives. The living will, in some States called "instructions," "directive to physicians," or "declaration," states the patient's desires regarding life-sustaining or life-prolonging medical treatments.
The durable power of attorney for health care is superior to a living will, Dr. Post says, because it has "absolute legal clout" (not all States regard the living will as legally binding), and because of the prognostic uncertainty of the disease-"It's impossible to anticipate the incredible number of situations that might occur," he says. The living will can be a useful adjunct to a durable power of attorney for health care because it can serve as a guide to the proxy. It can also serve as a springboard for initiating discussions of end-of-life care. Diagnostic honesty is critical to the adoption of advance directives, but their legal limitations must be recognized.
Do Not Resuscitate Orders
Experts agree that there is no question that Do Not Resuscitate (DNR) orders should be standard procedure for advanced Alzheimer's patients. "Resuscitation is a horrendous experience for someone with Alzheimer's disease," says Dr. Post. "Only 10% will survive the CPR effort, and almost all who do can be so severely injured by the application that they will not recover. And they will be even more compromised cognitively. Physicians should argue vehemently against any resuscitative efforts for advanced AD patients."
- Family Caregiver Alliance. Fact Sheet: End-of-Life Decision-Making.
- Family Caregiver Alliance, Fact Sheet: End-of-Life Choices-CPR and DNR.
- Kass-Bartelmes, B.L. Advance Care Planning: Preferences for Care at the End of Life. Research in Action, March 2003; Agency for Healthcare Research and Quality.