End-of-life decisions require special attention to dignity
By Dr. Paul Bushkuhl
Many months ago, I received a book from a good friend entitled “Being Mortal.” It had a huge impact on my practice of medicine and I believe it should be required reading for all mortals and those that care for them.
The book is divided into three parts. The first, a sobering, unblinking account of aging and the myriad ways the body and its parts break down and fail as we age is not the easiest reading, but is a necessary starting point in the discussion about mortality, quality of life and what it means to be human.
The second part of the book is an exploration of nursing homes, their purpose, origin, flaws and the measures being taken to make them more effective. It details the evolution of aging and dying in this country and the shift away from spending the later years at home with extended family to spending them in nursing homes and hospital settings, often with undue suffering, surrounded by strangers.
The third part is an examination of how one should make decisions about care at the end of life. It provides a guide for this difficult discussion, helping loved ones and doctors ask the correct questions to determine the best course of action for the person, rather than the patient. The course of action that only prioritizes survival often neglects the individual’s priorities and the importance of quality of life.
I was just finishing up in the office, one patient left to see. The staff notated that my patient had made the appointment in order to discuss his cardiac disease. He had severe end stage cardiomyopathy, a very weak heart that affected all his daily activities. I had seen him for anxiety and insomnia and other issues, but felt unqualified to address his heart disease. After all, he had been regularly seeing his cardiologist who had referred him to a tertiary care hospital to see a sub-specialized cardiologist. In fact, at the last minute, he had cancelled a planned admission at this hospital and had made the appointment to see me.
His cardiologists had recommended an intervention that would entail at least a month long hospitalization and carry up to a 38 percent risk of a bloodstream bacterial infection. Had I not recently read “Being Mortal,” I almost certainly would have told him that I was not qualified to discuss this decision as I did not know all the details of the planned intervention, in fact had never even heard of the procedure.
However, the book had made me realize that he did not require that kind of discussion. The book pointed out that too often patients are overly informed about the technical aspects of such procedures, bombarded with statistics and numbers, but often scant attention is paid to discussions about how one wants to spend the final days of their life.
We willfully ignore the fact that all of us die. Medicine and science can almost always offer that “something else can be done,” but we fail to realize that “something else” often provides more suffering and less dignity, and in many cases, an accelerated demise.
As a consequence, we had an incredible discussion that revealed that he did not find the proposed intervention to be consistent with his view of himself as a strong, independent individual. He found the thought of this prolonged hospital admission stripped him of his sense of self-reliance and he absolutely did not want to die in a hospital.
He prioritized being at home surrounded by the people and the things that were most important to him. He chose to go on hospice care and stay at home.
At this point, he has survived longer than six months. More importantly, he continues to enjoy a fulfilling life at home, no longer experiencing anxiety and insomnia. Taking control, living (and eventually dying) on his own terms, had given him a peace of mind that had been eluding him.
The book is full of similar anecdotes and subsequently I have had several very difficult (and extremely gratifying) discussions with my patients, helping them deal with this inevitable transition that is part of every life.