Friday Reflection 17: The Grace of the Dying

Myelodysplastic Syndrome

DB was 55 when he came to an appointment with abdominal pain. The pain was in his epigastrium and radiated directly through to his back. He had lost about five pounds over the last month. He joked that it was the first time in his entire life that his weight had gone down rather than up.

I’ve been awed by the acts of my patients at the end of their lives. “Grace” seems like the right word for what I have seen. You could spend a few hours pondering the definitions of grace. The one I am thinking of is closest to that from Christian theology. Grace here is more than “courteous goodwill,” it is the ability to do honor by one's mere presence; to give a spontaneous and unmerited gift. Here are four stories of people who gave, expecting nothing in return, as their lives were ending.

HF became my patient after a call from the Dean -- one of those calls that always gives me a bit of agita. The problem is not because the question, “Will you see this patient?” is a hard to one to answer -- the correct answer is always yes – but because there is often a complicated back-story. HF was something of a VIP and wanted to switch doctors. The physician he was leaving, let’s call her Dr. B, was known to all for the excellent care she provided and for being accessible and accommodating to a fault. I expected a difficult initial visit, but our first encounter was entirely unremarkable.

HF said that he was “slowing down,” something he accepted as he was approaching 80, but had no real concerns. I usually ask people who have ended their relationship with another physician why they are changing doctors. How a patient answers gives me insight into what to expect and, possibly, where the quicksand lies. I hesitated to ask the question at this visit -- HF seemed so reserved, so “proper,” that what went before seemed best left unsaid.

During the three years that I cared for him his health remained quite good. He did require more time than most patients. Whenever a decision needed to be made, he wanted to consider it with me at his side. Never would he accept my usual, “Why don’t you think this over and we can talk by phone in the coming days.”

The end came quickly for him when a premalignant condition that we’d been following turned malignant. One week he was receiving therapy and blood product support and the next we were sitting in my office as he told me he was committed to starting hospice. He said that he was no longer happy with the quality of his life. He was not depressed, just resigned. We were 45 minutes into his 20-minute appointment when I had to tell him that I needed to see other patients. He asked if he could stay in the exam room for a bit.

Ninety minutes later, as I finished up for the day, I noticed he was still sitting in the room, elbows on his knees, looking at the ground.

“Are you OK?”

He looked up. He remained perfectly composed. “I am. I’m just thinking about what is happening. This seems like such an important moment, isn’t it wrong to just move on.”

“Is there anything I can do?”

After a pause he said, “I am thinking about people I want to reconnect with and what I want to say to them. I was wondering if you could pass on a message for me. Can you tell Dr. B that I thought she was a wonderful doctor. I want her to know that she shouldn’t take my decision to leave her in any sort of negative way. I liked her, I trusted her, and I thought she was smart and capable. I left because I knew the next few years were going to be tough and I felt like I needed someone new for that period.”

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When a colleague of mine decided to reduce his clinical practice, he asked me to see AB. He said we would get along. That turned out to be one the greatest understatements of all time. A soft-spoken intellectual, the product of the New York public school system, I have never met someone who reminded me more of my father.

He was already diagnosed with the cancer that would eventually take his life when I assumed his care, but he still had years ahead of him. What I remember most about our visits was the pleasure I got from chatting with him and my annoyance when I was too busy to spend extra time. There was some self-interest here, as I started caring for him during the last weeks of my father’s life and I found our meetings strangely comforting.

Over the years, I went from managing his chronic medical issues to deprescribing what I had previously prescribed when I began overseeing his palliative care. After he transitioned to home hospice, we had little contact. He had an involved family and there was little role for a physician at the end.

About two weeks after his death, I received a letter on his stationery. I expected it was a note from his family, maybe a copy of his obituary. In fact, it was a hand-written from AB himself. A simple thank you for the care he received and my companionship.

I called his wife to ask about the details of this letter. She told me that he had spent his final weeks writing to friends and colleagues. He wanted to let people know what they had meant to him over his life. Some of the letters had run to many pages. He finished the letters about a week before he died.

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Ten years before her death, there was an abnormal finding on an X-ray I ordered on CK. A follow-up CT gave us reason to be concerned. Over the next year, there were two biopsies -- both non diagnostic -- and another CT. We were pretty sure that she had an early stage, low grade malignancy that was just not yet diagnosable.[i] An appropriate plan was to repeat a CT in 6 months and then repeat the biopsy, probably using a different technique.

This plan would have been medically appropriate but not “appropriate” for CK. She would have loved to have been referred to as “a feisty woman” and she did not like being anywhere near the hospital. She told me, in no uncertain terms, that she was done with this issue. She didn’t want to think about it, she did not want to evaluate it, and she did not want anything to do with the doctors who had been involved in the evaluation thus far. Rereading my note from this visit, I am a little embarrassed at the C-Y-A, medico-legalese I included. “The patient is aware that there might be a treatable condition we are not evaluating. She understands that by choosing not to evaluate the findings further, she might be missing the opportunity blah blah blah…”

Six months later, my colleagues, whom I initially brought in on the case, called her to encourage her to follow-up with the recommended evaluation. CK called me to ask If I would “run interference” for her.

Eight years later she began losing weight and showing signs of the cancer. At least to me, she never expressed a second thought about the route she had chosen. She accepted palliative therapy that kept her in pretty good shape for another 18 or so months.

Four weeks after her death I got a letter from our hospital development office to let me know that she had made a gift in my name. She had sent a letter about me praising me for “caring and protecting her until the end.”

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During residency, my patients were either sick for the entire time I knew them or well for the entire time. DB was the first patient I took care of who was well when we met and then developed a disease that eventually took his life. He was kind man with a great sense of humor. Although he had a chronic medical condition that had been present since childhood, he was not comfortable in the patient role. He always tried to make our appointments more of a social visit than a doctor’s visit. As a young attending taking care of an older man, I’ll admit this would frustrate me. It felt like he was not taking me seriously.

Eventually he came to a regularly scheduled visit with nagging epigastric pain that radiated to his back. He had lost five pounds. He otherwise felt well. I remember, even 15 years later, thinking, “this is not good.” A CT scan revealed a large mass at the tail of the pancreas. An endoscopic biopsy confirmed pancreatic cancer. He was dead within six months.

I write about him here because of our visit after the CT scan. I was worried what the test would show so I scheduled him for a visit the day after the scan. In retrospect, I think he was more prepared for the results and the visit than I was. He sat patiently as I walked him through the images, told him the likely diagnosis, informed him of next steps, and tried to provide some hope while being honest about what I thought the biopsy would show and what the prognosis was. My voice cracked a few times while I spoke. When I finished, he thanked me for the time I took to relay the information. He then apologized to me for putting me in the position that I had to break the news. I didn’t even know how to respond.

When I called him a couple of days later to ask how he was doing, see if he had any questions, and make sure he understood the follow-up appointments, he assured me he was doing OK and that he had excellent support from his church and family. And then he asked if I was doing OK after our appointment.

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[i] The stage of a tumor refers to how far it is has spread. Late stage would be mean it has spread beyond its organ of origin. Grade refers to the biology of the tumor. A high-grade tumor is one whose behavior is aggressive.