A few months ago I was listening to an interview with Dr. Barron H. Lerner. Dr. Lerner has written a book called The Good Doctor: A Father, A Son, and the Evolution of Medical Ethics. According to a summary, this book ” traces the disparate approaches to end-of-life care practiced by a father and son, and explores ongoing debates about patient suffering versus informed consent, analyzing how their respective views reflect polarized opinions about the powers of doctors and the influence of evolving medical technology.” Dr. Lerner’s father was also a doctor and was involved in the end of life care of several of Dr. Lerner’s relatives. Because of his experiences attending people at the end of their lives, the elder Dr. Lerner had very well developed opinions about the care that he wanted to receive at the end of this life, and he shared these views with his son. However, he apparently never put them in writing.
In the interview the younger Dr. Lerner explained briefly some of the views that his father had. For example, his father felt that if one were elderly and infirm, it would probably be best to sign a do not resuscitate order. Additionally, he believed that if one had a disease that was nearing its end stages such as Parkinson’s, ALS or Alzheimer’s and one contracted pneumonia, it would be best to not administer antibiotics. These decisions aren’t necessary bad ones to make. Often the process of resuscitating someone who is elderly and near death is extremely painful for the patient, and merely prolongs the process of death in an unnecessary way. Denying antibiotics is more controversial. While often patients in the end stages of the diseases mentioned do ultimately die of pneumonia because they are too weak to clear their lungs of secretions, it can be hard to determine when administering antibiotics ceases being ordinary care and becomes extraordinary means (see here for a discussion of ordinary vs. extraordinary care).
What struck me about this interview wasn’t so much the views that the elder Dr. Lerner had about how to treat people at the end of life, but how his son went about making end of life decisions for him. Unfortunately, the elder Dr. Lerner developed Parkinson’s and ended up requiring care in a nursing home. At some point the Parkinson’s had caused some dementia, but Dr. Lerner indicated that his father was still lucid much of the time and didn’t seem to be in pain. In fact, Dr. Lerner said that his father seemed to be at peace. At this point, decisions needed to be made about his father’s care, so Dr. Lerner asked his father if he wanted to be resuscitated if he should stop breathing. His father thought about, and said that, yes, he would like to be. Surprised, Dr. Lerner asked his father about receiving antibiotics if he developed pneumonia. Again, the elder Dr. Lerner indicated that yes, he would want to receive antibiotics and see if the pneumonia could be healed. Since this was very different than what his father had previously stated, the younger Dr. Lerner struggled with how to decide to care for him and with trying to decide if his father had indeed changed his mind about how he wanted to be cared for. Dr. Lerner stated that in the end he decided that his father had not changed his mind, and when his father contracted pneumonia the family decided not to administer antibiotics, and the elder Dr. Lerner died.
While is is possible that his father hadn’t changed his mind, it seems to me that it’s also possible that he had. Often when we see other people suffering, our first reaction is, “I couldn’t do that.” When we see others who are paralyzed, or have lost a limb, or who struggle through cancer many say, “if that were me, I would just want to die.” We equate quality of life with what we can and can’t do. I think, though, that for some people when they actually find themselves in a situation that they previously thought would be unendurable, they find that life is more than what one can, or cannot physically do. That there is meaning and joy despite pain, and that disability doesn’t mean the end of life.
I want to be clear that I’m not advocating that everyone refuse to sign do not resuscitate orders, or never refuse treatments. Indeed, there is a time and place for making those decisions. See here for more of a discussion of that. I do think, however, that we may find ourselves surprised not only by what we are able to endure, but also by what we will ultimately find meaningful and worthy.