The end of a life, the beginning of a conversation
I’ve known Mr. Lyon, his wife and their daughter for a long time. Christiana Care and I have been trusted with their care for many years, and among my personal points of pride, which I share with the Lyons whenever they visit, is keeping the elder Lyons out of the hospital. Mrs. Lyon has had lung disease, and when I first met her she was getting admitted to the hospital way too much (she’s been doing great recently). Last year, we admitted their daughter to Christiana Care and found her to be a new-onset diabetic. We started her on insulin, and through her efforts she has managed to get off the injections and on the path to great health.
So I have come to expect great things from this family, bouncing back from severe illnesses in particular. I thought no differently when I admitted Mr. Lyon this month to Wilmington Hospital for a new series of concerns. We found he had new-onset thyroid disease, and that he needed medication to get fluid off his lungs. While we and his cardiology team agreed he needed more diuretics, we realized it would not make his already frail kidneys any better.
“Balance,” I said to his family, “is always the key here. Too much fluid and his heart can’t handle it, and it backs up in his lungs. We take too much off, and the kidneys don’t like it.”
“We trust you,” said the Lyons. (Speaking of balance, never were three words so wonderful and burdensome at the same time. It makes physicians work that much harder to earn the trust, but devastates us even more when we feel we have not lived up to it.)
Over the next few days, Mr. Lyons did not get better. His kidneys got worse, and the family was told by their nephrologist that he may not benefit from dialysis. They began to consider hospice care.
I wasn’t ready, though. The whole concept of curative care is full of metaphors of battle and victory. We seek to “fight”’ disease, we want to “conquer” cancer. And I was ready to both fight and conquer. I called up his nephrologist, essentially demanding to know why he had dared suggest that aggressive measures would not help my patient. He explained with far more patience than my questions deserved the logic behind his recommendations and offered to share with me the latest evidence (which I did not know about), which suggested that dialysis may not always help with very ill patients.
Armed with this information (there’s the battle metaphor again), I called up Mrs. Lyon to share this demoralizing information. She seemed far more composed than I was.
“We’ve decided, Dr. Khan, that this is what he would want.”
What was “this”?
“His wishes were to pass with dignity, to not have aggressive resuscitation, and definitely not a breathing tube. We understand it’s the end.”
I persisted in reminding her that there was small (less than 5 percent?) chance that dialysis would be useful, and again asked if she was comfortable with the family decision.
“You can’t fool Mother Nature, Dr. Khan. You can stop looking for loopholes. We appreciate all you’ve done, but he’s in God’s hands now.”
I hung up the phone after trying to express my support — probably incoherently. It was clear to me that I needed to deal with this as well as the Lyons were. I walked into the ICU the next morning, slightly more composed — that composure being severely threatened as I met his family and said goodbye to him.
In residency, we used to hear from experienced physicians: “the best surgeons know when not to cut.” Similarly, my colleagues in this situation knew when not to do futile, unnecessary measures.
I had the pleasure of working with an exceptional family who taught me far more than I helped them. I also was surrounded by a committed, talented team of family medicine residents, consultant physicians and ICU physicians who brought their combined knowledge and wisdom to bear on his case.
Mr. Lyon was transferred, with his dignity intact and his supportive family by his bedside, to the hospice facility of their choice. I called my friend who serves as their medical director and asked him to take good care of Mr. Lyon. He texted me back immediately with his support, arranging coverage even though he was out of town. It turns out that I (not to say Mr. Lyon) had a pretty good support network.
Doctors are used to fixing things — to curing, to “fighting” disease — and sometimes we forget about balance, the term I used when first admitting Mr. Lyon to the hospital.
I will always fall short of the physician I want to be. But as long as I keep learning about balance from families like the Lyons, there might just be hope of doing the right thing more often than not. I said at the outset I expected great things from him and his family: bouncing back from illness; grace in the face of gravity.
I’ve been wrong about other things, but I got that one right.