The disease is called Amyotrophic lateral sclerosis. It is a devastating disease. One can take care of a person with ALS by emptying his bowels by hand every day, feeding him, letting him watch TV if you know what channel he wants, and use the computer with a pointer in his mouth (as Hawkins did). He will never be able to get out of bed by himself. There is no muscle that works. Not everyone with ALS will have the celebrity status of Hawkins, and the financiall strapped families will not be able to take care of the chores required.
My grandmother, who passed away of lung cancer four years ago, used to say when she was younger that she would hate to be helpless and need care in this way--help with feeding, bathing, etc. But when the time came that she did need this care, she would frequently be happy with other things in her life--family visiting, going out to eat, an old program that she recognized on TV, even having simple conversations with anyone and everyone, from neighbors to chemotherapy techs. It's possible to be depressed in relatively pleasant-seeming circumstances or happy in unpleasant ones.
In the U.S. and I think in many other countries as well, being financially strapped does not prevent a person with this kind of disease from getting medical care and adaptive technology.
Some people believe there is an after life where all this will be considered for saving someone who manages the agony and pain of devastation on earth, no matter how long. Not everyone believes that, and the question is, should they be forced to believe? Free will is out of the question.
Joe, the idea of forcing someone to believe in the afterlife is an entirely different question. I have no idea how one would force someone to believe in something anyway, short of some bizarre combination of torture and hyponosis. I'm an atheist, by the way.
To make all this clearer, the public radio discussion was about choice, not about law. Does a person have the right to choose his death? The discussion centered on a 'club' which believes one has the right to choose, but ony if certain
legalities have been met, e.g., no burden on the survivors. They also believe that a suicidal person has the right to choose counselling. No problem.
Under the law as it is, many people do have the right to choose their death:
*If your kidneys fail, you can refuse dialysis
*If you are unable to swallow(through ALS for instance) you can choose not to be tube fed. You would get hospice care to ensure your comfort in the process of dying and would have a chance to say goodbye to family members. Hospices are more pleasant places to live and die than hospitals...a neighbor and friend of mine who was awake and conscious in the hours leading up to his death died in hospice and was able to talk and laugh with friends and family, while comfortable, before he died.
*If your illness is terminal, you can let it take its course at a faster pace by choosing the hospice route. There, comfort takes precedence over prolonging life by any means. Some people live in hospice for months.
*You can refuse a whole checklist of "preserving life by any means" options in your living will.
ALS varies, from what I can see. It can be a terminal illness leaving some people with two years to live. It can be a drawn out condition with people living more than 10 years. Some people, from what I have read, have experienced the illness come to a halt instead of becoming progressively worse, and have lived three times that long. For someone who has reached the point where the disease would be terminal in its natural condition without medical care, comfortable death is possible without suicide.
Law is a tricky thing--you can change a law, and find that changing it has different implications from the ones you expected. I think that between living wills and hospice options, the balance for the right to die is currently where it should be. Giving people medically sanctioned deaths--doctor performed deaths--when their bodies are not dying opens too many doors for desperate people who are caught up in an emotional wave and who would not, in their right minds, choose to die. That includes people who are grieving for themselves after having been diagnosed with an illness.
