Medical friendship at the end of life

Pat, a non-physician reader, writes:

I read your two articles on friendship for more explicit clues on how to deliver very bad news, and wondered if you would consider publishing something on this topic as part 3 of this series. My prompt is a close friend with cancer, and she’s not getting better. At her last visit, the message she took home was: “there’s not much more we can do for you other than more chemotherapy, and we’re not even sure that it will do any good.”   This was a complete and sudden loss of hope.

Two thoughts come to mind.

The first is from Viktor Frankl. In Man’s Search for Meaning he says: “Those who know how close the connection between the state of mind of a man – his courage and hope, or lack of them – and the state of immunity of his body will understand that the sudden loss of hope and courage can have a deadly effect.”

The second is from Atul Gawande’s book, On Being Mortal. He describes two approaches to giving bad news. Dr. Informative supplies hard cognitive information: cold facts, descriptions, outcome possibilities, statistics. A doctor’s other approach might be to look for an opportunity to start the conversation with “I’m worried” and then continue with the patient in an “ask, tell, ask” process. In this approach, the direction of travel becomes clear more gently and perhaps gives the patient a little more time to walk into the possibility than being crashed into it.

…I would be especially interested to read your views from the doctor’s side in the context of your two blogs on the friendship dimension in the doctor-patient relationship.

Dear Pat,

Thank you for the request.  I’m sorry for the difficult experience your friend has gone through.

I find your juxtaposition of Frankl and Gawande in this context particularly thought-provoking.  As it turns out, my wife had brought home Man’s Search for Meaning from the library when I received your email, so I read it with your comments in mind.  I likewise read On Being Mortal shortly afterward.

I will devote the next post or two about Gawande’s book, contrasting his views with those of Frankl, but in this post, I will briefly share some thoughts and references about the situation you describe.

A terminal illness is certainly a situation which many physicians today—myself included—feel poorly prepared to confront.  Ethan Weiss, a colleague of mine, recently wrote candidly of his own experience of inadequacy.

As I mentioned in the first post on the topic of friendship, this deficit is in part due to the fact that the entire system is focused on the “doing” aspect of medicine, a point Gawande emphasizes in his book.  And to the extent that much of healthcare is now conducted according to a mandate of efficiency, it is no surprise that patients feel that bad news are delivered to them in a particularly hard way.  There are also very strong demands to respect patient autonomy and to be transparent.  These demands can further narrow the margin of maneuver for doctors, and lead them to simply deliver cold facts.

That said, it would be a mistake to automatically put responsibility for the harshness of the experience on the system or the medical culture.  Death is an intrinsic indignity.  One may be more or less accepting of it, but there is no rational reason to be stoically submissive.  Gawande quotes Stephen Jay Gould, who put it drily:  “It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity.”

Ira Byock wrote an exceptional book, Dying Well: Peace and Possibilities at the End of Life, which I hope many people read.  In my opinion, Byock exemplifies the art to taking care of people in friendship when the end is near.

It clearly takes skill, experience, courage, and genuine love for the patient to be adept at dealing with the dying process at the bedside.  But the book also makes it clear that end-of-life experiences are almost always enormously challenging, even under the best circumstances, and even for the most gifted physicians and nurses.

I recall two cases from the book.  One was an older woman, Maureen, whom Byock described as exceptionally well prepared for death.  Indeed, she seemed very secure in her sense of life’s meaning, and her example supports Frankl’s thesis.  “She typified full, rich living through her very last breath.”

In contrast was Terry, a young mother who fought an agonizing battle with an excruciatingly painful metastatic kidney disease.  She was not ready to concede anything to the grim reaper and would refuse pain killers or minimize their use for fear it would weaken her determination.  She appeared sustained by an angry defiance against death, but as that battle was obviously going to be lost, the suffering she went through seemed particularly pointless.

According to Byock, “Terry did not die a ‘good death.’ Yet how Terry and her family felt, not my values, is what ultimately matters.  In this respect, she died well, because she died her way—fighting for life and time with her family.”

As I re-read those passages, I note that Byock relates several conversations he had had with the Maureen, but none with Terry.  About Terry’s end-of-life story he only gives facts.  Sometimes the best and only thing to do at the end of someone’s life is to be there silently.  A recent vignette in the New England Journal of Medicine conveys the same idea.

You may also want to read a moving essay by Lisa Rosenbaum about a young physician diagnosed with terminal cancer who wrote his memoir before being taken away.¹  Rosenbaum asks: “What does empathy look like when it has been stripped of hope?”

The physician who must deliver bad news is in an inherently difficult position.

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Note

1. Paul Kalathini, the young physician, wrote an essay for the New York Times a year before he died and shortly after his diagnosis was made, asking the question “How Long Have I Got Left?”  Stephen Jay Gould asked himself the same question under the same circumstances.  Reading the two pieces side-by-side is particularly poignant.

[callout]Part of a series on friendship in medicine[/callout]