Apparently, I’m not the only one pondering death and dying during the holiday season. Dr. Pauline Chen is a surgeon and author who published a thought-provoking op-ed piece in the New York Times a day or so ago entitled, ‘The Most-Avoided Conversation in Medicine’. In it, she discusses her difficulties in talking directly with one of her surgical patients about the fact that he has a terminal condition:
I thought we had caught the tumor in J. R.’s colon early, but in the operating room we found that the cancer had grown into his pelvic sidewalls. After surgery, when I began to tell him that some of his cancer remained, he stopped me. “Hey, Doc,” he said. “I know I’m going to be fine because you did my surgery.”
J. R. sent me a Christmas card that year, but I could not bring myself to write back. I told myself that I was too busy, when in fact I was afraid to acknowledge that J. R. was dying. Patient deaths, for many doctors, represent a kind of failure, and so without really thinking, we look the other way.
I’m going to ramble on about this for a bit, and we’ll see where it goes, and if it makes sense when I’m done.
I appreciate Dr. Chen’s perspective, for a number of reasons. First, she’s right. It is very difficult to talk directly with patients about their dying. Having taken some time to think about this, for me at least it is because of my inextinguishable fear of causing pain in someone I’m caring for. For as much as I like to think that I know my patients, the truth is that you never truly know how somebody is going to react to news that they are dying. I’ve seen the gamut of reactions, and I have yet to be able to ever guess correctly who will have which one. As such, to bring up the topic is to potentially wade into very deep waters.
On a side note, it is for a similar reason that I advise medical students and residents (and the occasional community pediatrician who calls with a patient who they are concerned has cancer) to wait until they are 150% sure of the diagnosis before breaking out the ‘C’ word. One can find onself neck-deep in fear, tears, wadded-up tissues and hard questions in a very short period of time after saying it. The ‘C’ word tends to turn off rational thought and turn on the “white noise of emotion” machine at 110 decibels. You can’t take back the ‘C’ word very easily. The ‘C’ word conjures up images of very small coffins.
Back to the subject of Dr. Chen’s essay – talking about dying with your patients who are still living – it is incredibly hard to tell a the parents of a pediatric patient that you are running, or have run, out of therapeutic options. You don’t want to take a way a patient’s hope, or worse, have the patient feel like you’re giving up on them. This is why we try to never say things like, “There’s nothing more that we can do.” There are always more things to do: you can improve pain management. You can help get a patient out of the hospital and back home. You can facilitate a special trip or special party. You can ask what the patient needs and then do it. We may not have cures for some patients, but we always have things that we can do to help make them feel better.
Despite all of this, you still never know what is going to come out of the Pandora’s box. It could be silence, tears, anger, denial, panic, suicidal ideation, all of the above or none of the above. And this is just from talking to the parents. Truth be told, I now find it relatively easy to discuss end-of-life issues with parents of pediatric cancer patients. What I find hard, still, is talking to the child themselves. I’ve done this twice with teenagers, and that’s two times more than I’d ever like to. And it’s not because teens have more florid grief reactions than their parents – that would be far easier to deal with. I’ve found it hard because they don’t.
Children seem to be far better insulated from the fear of death than adults are. I’ve yet to see a dying three year old have an existential crisis. They’re often more interested in the next video or game or toy. Even pre-teens don’t quite seem to be able to wrap their brains around the idea of a finite physical existence. I’ve heard children in the 9-10 year-old range make very dark jokes about their own impending death. The dying teens that I’ve spent a lot of time with have had somewhat more complex reactions, but not nearly as sterotypically grief-ridden as their parents. And it is here that I found my most challenging task: to talk to children and teenagers who are dying without my feelings getting in the way. I found it very difficult to talk about death to teens who couldn’t or wouldn’t talk back to you in the same terms, and it was because I had assumed that they had some cauldron of feelings that were not reflecting back to me. It was this not knowing made me uncomfortable.
But soon I came to realize that that discomfort was my problem, not theirs, and it wasn’t so much a discomfort with the subject as it was a fear of the dark. And by that I mean the feelings generated by talking with someone who is feeling something that you can’t understand, as a result of something you said. I’m certain that there is a fancy psychological term for this, but I’m too tired to Google it at this hour.
If I were dealing with adults, I’d be able to ask them “Are you OK? Do you want to talk about it?”. I’d be able to ask them specifically, “Would you like to share what you’re feeling?” and they might say, “I’m fine” or “I’ll be OK” or “Don’t worry about me”. Maybe they’d give me a little pat on the hand and I’d be able to take that and feel like I’ve done all I can do for their emotional needs. While that certainly wouldn’t be the case, taking these little reassurances at face-value is what I think a lot of physicians do because we don’t know what our part is. You don’t want to push someone to tears or overtly cause them emotional or psychic pain if they’re not ready to talk. Do you sit there in silence? For how long? Does the sitting in silence make the patient uncomfortable? Do you pat their arm? Touch their shoulder? Say you’re sorry?
My point seems to be this: our fears are our own problem, not our patients. We shouldn’t be afraid to talk to them about death just because we as physicians are afraid of not knowing what to do. Patients come to us because we are expected to excel at dealing with the unknown. We don’t run away from patients who have unresolvable somatic complaints because we fear not knowing what to do. By a similar token, we should not run away from patients who may have unresolvable emotional, existential or other psychic ailments (in this case related to death). We should do for our patients what we would do in any other circumstance: ask them what they need. It’s a simple question, really. “I know that we may not be able to treat your cancer, but what else can I do to help you? What can I do to make your life a little better, even if I can’t make your body better?”
Dr. Chen concludes her essay as follows:
“I think there is a simple way to change. We could add one question to every discussion we have about patients with terminal illnesses: “How good is this patient’s end-of-life care?”
The forums for posing this question are plentiful in medicine. Every morning and late afternoon, physicians in hospitals “round” on their patients, discussing their decisions in small groups or writing progress notes on patients’ charts. Doctors hold “grand rounds” (lectures before their colleagues) monthly or weekly, and in academic centers, physicians hold regular teaching conferences.
If in these settings we could bring ourselves to ask about each patient’s end-of-life care, we could influence one another in a more personal way than the Support study did. And while we might not get all the details right at first, we would grow more familiar with advance directives and pain treatment and learn to manage our patients’ resuscitation wishes.
We also might find ourselves — as I have found myself with patients since J. R. — one step closer to being the compassionate doctors we have always dreamed of becoming.”
And while I find Dr. Chen’s motives noble, I believe that she really misses the point. The answers are not to be found in “small group discussions” or in Grand Rounds. The way to serve a dying individual is not going to come as a result of physicians asking each other what would be best to do. They’ll come when we start asking our patients directly, “What can I do to best serve your needs”. The old adage in medicine is that 90% of a diagnosis comes from taking a careful history. Surely the same holds true in the care of the dying. Maybe not so much that 90% of the diagnosis, but probably 90% of the treatment. By knowing our dying patients and their histories – maybe by just hearing their stories – we’ll alow them tell us in their own way what they need at the end of their lives.
I think that it is true that talking to patients about dying is “The Most Difficult Conversation” but believe that if we reconsider our approach, it may turn out that our part – listening – may be easier than we realize.