A moving account of how hospitals negotiate complicated cases of patient rights


Speaking as someone who has been up against the wall in terms of a life-continuance decision I believe emphatically that the only person who should have a say in one’s life/death decisions is said person. Anyone else getting involved is doing so singularly from a selfish perspective/motive.
No matter how people who are not immediately involved in those situations would like to convince themselves, we each go through the process of death 100% alone in the final step, so how we each choose to face that should be a decision made only by the person who has to cross that threshold individually.

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The goal of medical care is not simply to preserve or prolong life but to restore the patient, as much as possible, to physical and mental health. The best care in the world cannot bring back exuberant physical health any more than it can bring back joie de vivre.
Being suicidal is not the same as being mentally incompetent; sometimes it is a sane and rational choice. The question for ethics is whether or not the person who wants to die is choosing to die due to physical and mental pain and if, should these other conditions be improved, the patient would then choose to go forward and live.
It is not, currently, a choice, in public, to die. An attempt to take one’s own life will be met by aggressive and even punitive measures to prevent the attempt but, if your life is not your own to make choices about, then whose is it? Do we all automatically surrender autonomy simply because we live within a society? Does our society have authority, without our express consent but through some unwritten, undisclosed, ill defined, “social contract”, to make decisions against our will even in the absence of committing a crime against others?
In this instance the physicians could offer only palliative care and could promise that the patient would, at best, improve to around the clock care in a nursing facility for the rest of her life. Given the woman’s life history it is questionable whether she had ever been truly sane but she had been accorded that status through the legal process when she granted durable power of attorney to her sister.
Given that there was no further hope for her mental or physical recovery and that she had, perhaps in anticipation of this event, granted the authority to make decisions for her to her sister it is reasonable to believe that she though she might wind up in a place where her life would end. Ordinarily this decision would be hers but authority in this society has decided that a person is automatically insane if they choose death over life. Suicidal people usually choose to die alone to prevent any attempts to prevent their choice. It is difficult, in this instance, to know whether she would want to die but it is not difficult to know whether she wanted that ultimate question to be left in her hands or in the hands of strangers who are charged with preserving life without regard to the restoration of quality. She made a rational decision to leave that choice in the possession of someone who she knew would act from personal knowledge and love and whose integrity she trusted.


Thought these articles were both about patients’ rights, I think they are about very different areas of patients’ rights. The decision to die is very different from the decision to be experimented upon. Everyone has their own belief about what happens when they die, it’s equally mysterious to us all at some level, and so it’s equally as clear and accessible to us all, therefore the decision should be very simply, and without constraint, in the hands of the patient. Of course, it can be complicated by the doctor’s ability or willingness to properly communicate a patient’s prognosis, but nonetheless, I think it is a more clear-cut decision.

However, understanding the implications of experimental treatment is something altogether different. I don’t know enough about review boards to make a definite statement as to their quality and function, but I do think that without a process for deciding whether particular doctors understand the experiments they are recommending, have some evidence for what the consequences will be, or can communicate those clearly to a patient, is needed.

To me, this involves not only the patient on the table, but to everyone else in the world who needs to trust that when they are on that table, there is something protecting them from an individual doctor’s personality and motives, etc… when learning about and agreeing to an experiment. If doctors aren’t sanctioned for breaking that process, it weakens our trust in the medical profession. If there are whole subsets of experimental procedure that are, out of hand, being routinely rejected by boards, then that is another discussion.

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