The following article was originally published in the Community Review newspaper in Harrisburg, PA, and is Part 2 of a three-part series on end-of-life topics by JFS executive director Barry Stein.
My late January Community Review article extolled the virtues of having end-of life conversations sooner rather than later so family members are assured their wishes are known and respected long before they approach the inevitability of death. And yet, life (or the preliminaries of dying) doesn’t always proceed as planned. My Uncle Marvin is a case in point. Allow me to explain.
My Uncle Marvin recently died at 92 years old after residing at a Rochester, NY nursing home for eight years. Marvin was a loner for his entire life. Due to some cognitive limitations from early childhood, he became quite set in his ways and preferred to keep his distance from others. To people who didn’t know otherwise, I would describe Marvin’s behavior as being somewhat idiosyncratic. Despite our age and lifestyle differences, we had an inseparable bond that spanned over 60 years and geographical distances.
Throughout my adult life, I knew what Marvin’s end-of-life wishes were. He was passionate about life and wanted all measures taken to keep him alive. When appointing a health care proxy, he was reluctant to let me fulfill that role. I assured my uncle that I would respect his wishes even though my own philosophy on palliative care was quite different. With some reluctance, Marvin eventually agreed to appoint me as his health care proxy and durable power of attorney.
So, understandings about Marvin’s care were in place while he was still healthy and living on his own. I would eventually learn those understandings only went so far, once Marvin was residing in a nursing home and his health began to deteriorate. Shortly before his 90th birthday, Marvin was diagnosed with a blood leukemia that significantly compromised his body’s ability to make red blood cells. Without regular blood transfusions, his red blood cell count would drop to dangerous levels.
For over a year, acting upon his strong desire to live, Marvin willingly received monthly transfusions in spite of the demands of the treatment regimen. About six months before his death, as he became increasingly frail, he began objecting to receiving the transfusions. The nursing home staff took this as a sign that Marvin was no longer able to bear the stress of the now frequent transfusions. They strongly encouraged me, as health care proxy, to initiate hospice orders in lieu of the full code Marvin had insisted on throughout his entire adult life.
What the nursing home staff did not recognize was that my uncle’s desire to discontinue transfusions had much more to do with his cognitive deficiencies and his skepticism about the efficacy of the procedure, than a sign that he was surrendering to his disease. My uncle seemed convinced that the transfusions were no longer helping him, much like the patient who now feels better and wants to discontinue his medication. In one breath, Marvin claimed he was done with the transfusions; in the very next breath, he insisted that he was determined to live as long as possible. The nursing home staff only heard the first half of what Marvin was saying.
Something was terribly wrong with this picture. Marvin still believed he could have it both ways: decline transfusions but still live long. Marvin did not feel markedly better, so he mistakenly concluded the transfusions were unnecessary for his health and well-being. Even after I shared my observations with the nursing home staff they decided to honor what they thought were Marvin’s wishes over mine, in spite of me being Marvin’s closest living relative and health care proxy.
It is important to understand that this disagreement about care existed in the context of a superb, highly rated nursing home with top rate, compassionate staff. They were upholding the prevailing care protocol. Unfortunately, Marvin was an outlier; he desired to prolong life beyond what is typical in today’s medical environment.
As a last resort I consulted a health care attorney and learned that, as long as my uncle was regarded as mentally competent, my perceptions of his true intentions would fall on deaf ears. I would spend a lot of energy with no results. I was advised that the best recourse was to convince Marvin to resume the transfusions and for him to make the nursing home employees aware of these wishes. With little hope of success but determined to fulfill my obligations as health care proxy, I took a bold but calculated step in communicating with my uncle.
During a regular visit I told Marvin this was possibly my last goodbye since I didn’t expect him to live more than another couple of weeks. This statement apparently shocked Marvin into reconsidering the transfusions. The very next day he informed the staff that he would resume transfusions. Marvin’s renewed willingness to undergo the transfusion regimen validated what I knew to be his fierce passion for life.
About six months later, Marvin and I reopened the discussion about the transfusions. His food and liquid intake had dramatically declined. It was clear that my uncle’s passion for life was waning in the face of his progressive, chronic leukemia. Within this context, Marvin once again insisted on stopping the transfusions.
This time the situation had significantly changed. For the first time Marvin unequivocally acknowledged that ceasing transfusions would result in his death. Marvin was now in a very different place than he had been before. Realizing this, I now initiated conversations with staff about beginning hospice care. I came to this conclusion having the peace of mind that I had always done, and continued to do, exactly what Uncle Marvin wanted. His memory will always be a reminder for me about the role family plays in end-of-life decision making and the importance of having these conversations sooner rather than later.
