The advocates for Physician Aid in Dying, while laudatory in their goal, fail to inform the public of the real life application of the law’s so called “safe guards”. Anyone who cannot speak, or cannot write, or who cannot swallow is excluded from the mercy the law intends. Terms that most likely violate the American’s with Disabilities Act. They simply cannot make the required contemporaneous request for the medicine. In addition, anyone who lacks mental capacity is also excluded and the use of a prior directive, or health care proxy is not permitted. Anyone with late stage ALS, Alzheimer’s, Huntington’s or other neurodegenerative disease is excluded. The Alzheimer’s Association has announced that one in six women over the age of 60 will get that disease. The Oregon model is best suited for a person dying of cancer and in fact about 80% of the people in Oregon who make the request for aid in dying have cancer. The people who need it the most, long term suffers of pain and indignity are excluded.
The existing laws in the few States that permit physician aid in dying require that the physician determine that the patient be within six months of death. This provision is in the leading Bills pending in New York, A10059 and S.7579. This is a very arbitrary time period. It crept into the law in Oregon because the proponents chose to use the definition of terminal illness in the medicare hospice law. However, they ignored the fact that Congress in 1982 when it approved hospice for federal medicare coverage, put the six month clause in it as a cost containment measure. Congress wanted to limit the amount of federal funds spent on hospice care. The six month requirement in death with dignity is arbitrary and has no moral or ethical basis.
A significant improvement to the existing approach would permit the use of a health care proxy and prior directive. Under existing New York law any competent person can write a health care prior directive than ends all medical treatment at a future date. They can ask to be taken off of or not placed on life supports, excluded from feeding tubes, give do not resuscitate orders, and stop any other form of treatment. All intended to produce a dignified death. They can appoint a health care proxy to make sure that their wishes are carried out. The key is that the wishes of the person as set forth take effect when they are physically unable or mentally incompetent. The prior directive of a person for aid in dying, who is now unable to speak, or write or incompetent should be honored.
The proponents also generally fail to mention that aid in dying is the law in several European Counties, and Canada, several of which have a very different approach. Switzerland which has had this since 1942, allows any disinterested person to help another person. Belgium requires that the physician administer the life ending medicine. This is important because in Oregon where the only way to do this is to swallow the prescription of usually 100 barbiturate pills broken up in water is sometimes not retained. The person throws up. They revive, do not get a second dose and ultimate die of the underlying illness.
My own daughter has Huntington’s Disease and she has expressed her end of life choices in a health care proxy. She does not have the option of aid in dying. I know of several people with Huntington’s disease and ALS who have chosen to starve to death. One occurred in Vermont, a so called Death With Dignity state. It took her 60 days to die and no one offered her any help because they thought she was incompetent. She returned the food tray and knew the difference between life and death. It doesn't have to be this way. Lets have a law that respects each person’s values and choices.
Now retired, Alan Pfeffer is a 1973 graduate of Albany Law School and is a volunteer on the New York State Department of Health's Advisory Committee on Centers of Excellence for Neurodegenerative Diseases. He is also Volunteer Advocacy Chair of the Albany Chapter of the Huntington's Disease Society of America.
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