Friday Reflection 10: The Worst Family Meeting

WD was an 89-year-old man with coronary artery disease, systolic heart failure, hypertension and peripheral vascular disease. He was hospitalized with a small bowel obstruction. On admission, he had abdominal pain, delirium, nausea and vomiting. He was febrile (101.7), hypotensive (102/42), tachycardic (125), and tachypneic (24). Examination of his abdomen revealed tenderness, rebound and guarding.

My clinic visits with WD made me feel fortunate to have ended up in the career, the specialty, and the medical center that I did.

I began caring for WD soon after I moved to Chicago. His previous doctor had assumed his care while she was a resident, continued to care for him during her brief time as an attending, and passed him off to me when she left the institution, a week before I arrived.

WD was born in Mississippi, left school after the 6th grade, and moved to Chicago in the 1930’s, part of The Great Migration. He said he was looking for something other than agricultural work and something better than a life of rural poverty. After time in the navy during the second world war he worked a series of factory jobs, mainly with The American Can Company in Chicago and Hammond Indiana. He married a woman he met in Chicago – she also soon became my patient. Together they had 5 or 6 kids (I’m forgetting some details from 20 years ago). All his children had graduated from college and there were pictures of new grandchildren at practically every visit. When I said to him once, “You’re becoming a true patriarch,” his smile was brilliant.

WD’s calm thoughtfulness was what I always most appreciated about him. He was not an educated man but was intelligent and wise. When we had to make medical decisions, he would listen to my advice and, when not taking it, would give me a clear explanation of his decision. Occasionally he would say he needed time to consider and ask when he could call me to let me know what he had decided.

He was also a strikingly kind man. The clinic coordinator and nurse I worked with adored him. Once, apropos of his wife recounting an offensive remark they had heard on the way to the hospital, I commented that he must have dealt with real racism in the south and in the military. WD put his hand up to stop my question. He said,

There are good and bad people. There are people who try to make your life harder and those who try to make it easier. I stay away from the first type. I don’t think about them or talk about them.

I think this stayed with me as it was so similar to my father’s mantra, “everyday, try to make somebody else’s life a little easier.”

WD put his hand up to stop me one other time during our relationship, when I broached the idea of choosing a health care proxy and discussing advanced directives. He said, “If the time comes, I trust you and my wife will know what is best.”

Because I was new to the practice, I sometimes had extra time in my schedule. When this happened, I would always let our visits run on. Despite his multiple medical issues, we generally got through the clinical issues quickly leaving time to talk. More than once I told him that I thought I got more out of the visits than he did. Of course, he denied that this was possible and expressed his own gratitude.

As he progressed through his 80’s, WD’s medical issues took their toll. His heart failure, especially, degraded his quality of life. His medical regimen got more complex. His visits, with me and his cardiologist, became more frequent. Although I still cherished our visits, and he remained sharp and was philosophical about his condition, it was painful to see him struggle with arthritic pain and dyspnea.

One morning, on the way in to work, I got a call from the resident on the inpatient general medicine service. WD had been admitted to the hospital with a bowel obstruction. The surgical service was recommending surgery but both the medical and surgical teams thought the risk of an operation was extremely high. HD, his wife, wanted to talk to me.

As I walked to the hospital, I prepared for my conversation with WD. Arriving at his bedside, I realized my preparation had been useless. WD was in terrible pain and delirious. He would not be able to participate in decision-making. After examining him and reviewing the chart, HD and I stepped into an empty room to sit and talk. I outlined the opinions of the all the doctors involved. We had two choices. WD’s only chance at survival was immediate surgery. However, this surgery carried great risks – I think the surgeon estimated 50% operative mortality – and convalescence would be long and certainly leave him in an even worse state than he had been in. The other option would be to forgo surgery and concentrate on his comfort. If this plan was adopted, I expected he would die within days.

I thought I did a reasonable job at this conversation. I walked through certainties and uncertainties. I outlined what the future would likely be with each decision. When she asked what I would recommend, I said that the decision was hers but that knowing her husband I thought that declining surgery and focusing on comfort was probably the right call. I let her know that I would support whichever decision she made.

HD said that she could not make a decision. She thought that if she decided against surgery her family would say she gave up. I suggested that, if we worked quickly, we could get some of the family together to relieve her of some of the pressure and responsibility.  We agreed to meet in 90 minutes, before my clinic started at 1:00. I called the student scheduled to be with me in clinic.

Meet me in the hospital at noon. We can walk over to clinic together. I have a family meeting scheduled at 10:00 and it would probably be good for you sit in on it.

Knowing WD as well as I did, I should not have been surprised when I walked into a hospital solarium and was met by nine of his relatives: children, nieces, nephews and one adult grandchild. I was pleasantly embarrassed to be greeted like a bit of a celebrity. I was told that WD had “bragged” about me.

Once we were all seated, HD asked me to bring everyone up to speed on the conversation that we had had. I thanked everybody for turning their lives upside down. I acknowledged the difficulty of the situation. I was open about my attachment to WD. I repeated what I had said to HD. I told them that it was a difficult decision and they needed to be able to live with both the decision they made and the outcome it led to. I encouraged everybody to consider what WD would have wanted, saying that this should carry the most weight. I tried to be neutral but I also made it clear what I felt was the right way to proceed.  

Mr. D has been pretty sick over the last 18 months. He’s an incredibly strong man and, even though he wouldn’t admit it, he seemed to me to be suffering. You all know him much better than I do – and in the end it is not my decision -- but, knowing him as I do, and knowing the medicine, I think declining surgery would be the right decision. If that is what you decide, I’ll work my hardest to keep him comfortable during his final days.

There was silence in the room. HD leaned over, patted my hand, and gave it a squeeze. In retrospect, I think she read the room perfectly and was preparing me. She then asked if anyone wanted to speak as she could not make this decision alone.

A gentleman, whom I later learned was a nephew and a preacher, was the first to speak. I’ll obviously be paraphrasing but I do remember this well (especially the final flourish).

Thank you Dr. Cifu. We know you mean well and I believe you really care for my uncle but you don’t know what God wants to happen here. You are not the one who makes the decision. You cannot see into the future. Mr. D may have years ahead of him and we need to give him every chance. God has given you antibiotics and the surgeon a scalpel and we need to use them.

A few more people spoke, all heartily agreeing with the nephew. The more people talked, the more I felt the decision being made was the wrong one, not in the patient’s best interest. I thought I would regret not talking again.

Mr. D has not been well. The best, the absolute best, that we can hope for, is that weeks from now he will be in only somewhat worse shape than he was a week ago. With all the tools we have in medicine, it is often harder to do less than more, even when doing less is right.

After more comments that supported an aggressive approach to care, the grandchild suggested that we hold a vote. My student caught my eye, acknowledging that she knew that things were not going as I would have hoped. I tried to suggest that the room had spoken (it seemed to me unseemly to vote). I failed here too and the vote went 9-0 favoring an aggressive approach.

I headed to clinic. WD headed to surgery. I was able to see him the in PACU (post anesthesia care unit) on my way home. He was still intubated and sedated at the time and would remain so for the next 5 days. He managed to leave the hospital two weeks later but was readmitted from the rehabilitation hospital three times in the next six weeks.

On his third admission, I went to see him. He was on the cardiology service this time. I barely recognized the man I saw in bed; he was so much smaller and older than he was the last time I had seen him in the office. He used what little strength he had left to pull me close and whisper to me, “Dr. Cifu, let me die.”

It was only me, him, and his wife in the room at the time. I had to hold back tears. I felt not a wisp of vindication.

Reflections often end with a pithy paragraph about “what I learned” or “how I would do it differently now.” This can’t end that way. We’re about 20 years out from this event and even now the feeling that I failed WD is raw. Faced with the same situation today, I’d probably manage it in almost the same way. I might have demurred at the start of the meeting and let the family speak about their patriarch before I launched into my spiel. But I am sure the outcome would have been the same.

If I took away anything, it was an illustration of how powerless we, as physicians, can be. Sometimes we are powerless against an illness. Sometimes we are powerless to convince people to accept our counsel. I am reminded of WD every time I can see into an unpleasant future and know there is nothing I can do to change it. It might be, like here, when I am unable to spare someone suffering. Other times it is a person, living in an unsafe environment, who will only leave it after a foreseeable calamity. Sometimes it is more subtle, I sense of something ominous on the horizon but, do not have the certainly necessary to act or convince a patient to act.

Of course, maybe the decision that WD’s family made was the right one and I still can’t see it. Maybe his final weeks of suffering was worth it for the family to live, comfortable that they had given him every chance. He had to endure 6 weeks of pain for the good of his family. If this is the case, I like to think that WD would have borne that cross for his family.

Years after this meeting, I received an email from my student. She was reaching out after she had run a family that went similarly “off the rails.”

I wish I could say that the experience I had with you years ago made for a more successful meeting. It did not. I do feel a little better knowing that I am not the only one who has done so badly in a family meeting. (I am happy that I didn’t have a student with me and that the family didn’t actually vote against me. (smiley emoji).