In the introduction to this blog on September 5, 2021, I stated that initial entries would be heavy on hospice experiences during my ten plus years as a hospice team physician. I have now exhausted stories that I can tell without betraying confidences–some circumstances are so idiosyncratic that people involved (patients and families) might be identifiable.
So I am now going to concentrate on general healthcare issues, attempting to identify and explicate important issues for intelligent lay people that get little coverage in the popular press.
So this is likely my last entry on hospice matters.
When I told new acquaintances what I did for a living while I worked in hospice, most people observed that the work must have been very difficult. Generally, they were referring to the emotional challenge of caring for terminal patients.
In fact, I found the hospice work very fulfilling. I have had a varied background in medicine, including medical education, hospital administration, and a bit of research—all in the context of the practice of primary care. But none of it has been more satisfying than my hospice work. To be sure, there have been more than a few tragic moments, but, with my mutually supportive team of professionals, and, I guess, a certain amount of professional distance, I have successfully navigated the emotional minefield. And the good my team and I have done for terminal patients and their families far outweighs the emotional burden. Taking away pain for the last two or three months of a patient’s life, for instance, has provided me with a powerful, palpable sense of accomplishment that was sometimes lacking in my other professional experiences.
My hospice work was always interesting, even in “routine” cases—after all, every situation featured a new cast. Of course there was a lot of sadness, but often a measure of joy. I saw families coalesce around the care of a loved one and actually celebrate a life well lived and well loved. As I reflect on my hospice experience, however, the overriding descriptor is profound. I, and my hospice colleagues, were right in the middle of momentous events for patients and families, and were privileged to provide comfort care, while helping to guide them through the most difficult decisions in life.
I think of the 32 year old mother of three young children with a fatal pulmonary disease. We were able to make her comfortable while maintaining lucidity, and she wanted to remain at home with her children for the duration of her illness. But she did not want to die in their presence. We were fortunate to time it well—we got her to our short term care hospital facility the day before she died.
Or the World War II vet who fought in France and came home with a bottle of red wine. He had lung cancer with widespread metastases. With judicious doses of narcotics, he looked much better in person than on paper. He was intelligent, understood his prognosis and accepted it, but had one very big regret. He had been saving the Bordeaux for his sixtieth wedding anniversary celebration two months hence, but he knew that he could not partake. Due to the risk of over sedation from the mix of alcohol and narcotics, he had been admonished to refrain from drinking. When he told me this, I simply stared at him. He said “Maybe I could…”, “I guess it couldn’t…”, “Maybe I will….” When I left his apartment, I said “To your health.” He did not wait for two months. Good thing—he died about three weeks after I saw him.
Or the 55-year-old lifelong passionate Cubs fan with amyotrophic lateral sclerosis (Lou Gehrig Disease). She had battled the disease for three years and was now completely paralyzed but for some marginally functioning respiratory muscles. She had clearly stated she did not want to be put on a respirator, and, with the help of oxygen administered through a nasal cannula, she struggled through the summer of 2016, a Cubs cap atop her head. She somehow made it through the world series win, then died a few weeks later. This could have been a treacly Hollywood script, but it is true.
Or the pair of married 90-year-olds who had both been on kidney machines (hemodialysis) for years. They were exhausted, overwhelmed, and depressed. When we explained that discontinuation of dialysis was an option, and that kidney failure was very unlikely to cause an uncomfortable death, they both perked up and decided to discontinue treatment. Their family members would have liked to have them persevere, but they honored their parents’ decision. The wife died within a week, and the husband, somewhat discomfited by his lingering life, died three weeks later.
Or the 72-year-old man with terminal lung cancer. Sam’s wife had left him 15 years before, declaring that she was gay and was moving in with her new partner. The couple had collaborated in the raising of their daughter. When Sam became unable to care for himself, his former wife, and her partner, moved in and tended to him until his death.
Or the undocumented Mexican immigrant with widespread stomach cancer. 59-years-old, Estaban understood his prognosis, but once we got his pain under control, he became obsessed with the idea of returning home. He had no money, but my hospice company has a foundation, funded by donations from grateful family members of terminal patients for whom we cared. We financed his trip home, and, not knowing what kind of medical care he would get in rural Mexico, we loaded him down with cartons of morphine. I often wonder how the border crossing went.
Or another World War II vet with heart failure. 95 years old, John fought in France and somehow came home in one piece, the proud possessor of a purple heart. He married and started a successful car dealership in Chicago’s northern suburbs, and this enterprise financed the college education of his four children. John’s heart had betrayed him—it was pumping at about 10 percent efficiency, and it was clear he was not long for this world. HIs elderly wife, exhausted by the care she had lovingly provided to John, had reluctantly placed him in an assisted living facility.
Like many hospices, my company employs veterans’ liaisons. Among their duties is recognition of the service of our veterans, and Captain Warner, a retired army ranger, carried out this mission with a passion. On the day of John’s ceremony, the hospice team, family, facility personnel, and other residents gathered in a common room. John was wheeled in, listing to his left, army cap askew. He seemed to be only intermittently conscious. The captain played a recording of the national anthem, read the certificate of appreciation, and presented an American flag to John. He then rose to attention and snapped off a smart salute. John opened his eyes and, with a supreme effort, raised his tremulous right hand to his cap. It was an imperfect salute, but a salute it unmistakably was.
Jim, this reminded me of our conversation in Zanzibar about the practice of medicine as curing or caring. THANK YOU!
Jim, thanks for sharing your stories! I hope you can continue to address some of the issues around hospice and end-of -life medical care from your wealth of personal experience in a more general way so as not to betray confidentiality but to continue to explore and educate an area that can continue to benefit from that.
Mark Lindenbaum MD, PhD
Wonderful as always, Jim. I can only hope to have someone as caring and compassionate as you in charge of my medical care at the end of my life–or before!
Very touching stories. “Profound” is an apt adjective. I have always thought hospice workers were some kind of angels. I have enjoyed al the post and look forward to what’s ahead
Thank you, Jim, for sharing these beautiful stories. You were present during some of life’s most profound and powerful moments.
Your hospice stories have been interesting and, clearly, heartfelt. They have given me a chance to reflect on my own professional work. Hospice care and “medicine,” in general, provides many opportunities for teamwork. For me, that was the most pleasurable part of the job both personally and professionally. Thanks for the reminder, Jim.
That’s a very moving batch of hospice stories. Thanks for giving us this entree into a patient’s last days.