Will Your Doctor Do What You Want?
Jack D. Gordon, President
Hospice Foundation of America
[Note: Mr. Gordon served as Chairman and CEO of HFA until his death in
2005.]
If you become terminally ill there is a very good chance that your doctor will ignore your wishes for care and do what he or she thinks is right. This could happen even if you have discussed advanced directives, and made out a living will.
A 1995 report by the Robert Wood Johnson Foundation found that doctors overwhelmingly ignore the last wishes of terminally ill patients.
In a study conducted at five teaching hospitals over a two-year period there were huge gaps between the care patients wanted and the care they received. In one portion of the study, 80% of doctors misunderstood or ignored the wishes of patients. Researchers found that half the patients studied spent eight or more days in an "undesirable state," being comatose, intubated or in pain. This was the case even when patients filed advanced directives.
How can such a situation arise in the United States at the end of the century? There are a number of reasons:
Many doctors feel uncomfortable discussing death with their patients. Not only do they not receive training in this, but all their training is geared toward curing disease, even if cure takes a miracle. But a miracle is a mystical event, not a medical event.
The hospital culture is geared to high-tech treatments. Also, there are strong financial incentives to put patients in intensive care rather than sit down and discuss comfort care, such as pain control at home and nursing help.
These powerful forces combine to diminish the role of the patient in decision making. But the patient ought to be making the decisions, perhaps with the help of his or her family.
You can help yourself, your family and your physician if you communicate your wishes clearly and openly. Ask your doctors what they will do in particular situations. Ask them under what circumstances they would recommend hospice for you. But be prepared to be insistent in getting a straight answer. That's not easy, but remember that you are the primary player in this event and everything must be designed to meet your needs, not the needs of the hospital nor the physician.
