from Ting and I: A Memoir
I’ve learned of patients who have refused treatment and died. Keeping Tina from getting discouraged has been a priority, as has not misleading her with false hope. I summed up what I asked our nurses to do as “keep her safe, healthy, and content.”
Since her near-death experience, she has shown a continuing will to live.
My love for her and her love for me is part of what keeps her going. She loves Phil and Ted and some of the other members of our families. She loves, or nearly loves, some of our nurses and they reciprocate much of that affection. She enjoys what entertainment we can arrange for her TV screen.
When I hear discussion of “quality of life” as a characteristic, a “metric,” to be evaluated for access to medical care, I am uneasy. Before you are ill, you have one opinion of what you would want done for you. When ill, a different opinion is likely. When recovered, your evaluation will probably be different still. Even less well informed are the opinions of those who would judge your situation. Given the problem of perspective and given the shifting degrees of mental clarity, one must be very careful about the issue of “informed consent” for various proposed options.
In the hospital, I was asked several times to sign a DNR [Do Not Resuscitate] order for Tina. If her heart were to stop, a DNR order would limit the efforts taken to revive her. I refused to sign, believing she would come to want all efforts attempted, as I did. I have learned that sometimes the very existence of DNR orders suggest to the staff that little more need be done for the patient, who then becomes second-class, lower-priority. The institutions would deny this, of course, but the eagerness for having DNR orders suggests otherwise. At the least, they may serve to shield staff from liability in the case of premature death.
I have been told of a beautiful woman who suddenly became permanently bedridden. She told the staff to close the blinds on the window, to leave her alone, and she refused treatment until she died.
The will to live is necessary, even if not sufficient.
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