This op-ed piece by Dr. Pauline Chen in today's New York Times reminded me of one of my deficiencies [Only one? If he had any sense he'd catalog the whole lot and publish it under the title "Don't Let This Happen to You." -Ed.] as a physician. The title of the story says it all:
What is this conversation that is not taking place between patients and their doctors, and why is it so difficult to perform? As I read the title I tried to think of another conversation besides the one that was shouting inside my head, the one that begins with the gambit: "The treatment is not working...," and end with the dismal question "Do you want to be kept alive on machines?", but no other topic came close to being a paradigm of medical cowardice.
In between those two statements lies the most painful of all discussions ever known between patients and physicians, and the pain comes from both directions, viz. why would anyone want some person whom they barely know telling them that they're going to die, and why do doctors have to remind people who are seriously ill that they are seriously ill, if not on their way out? Dr. Chen knows the answer and describes it as such:
I am not the only doctor who has had difficulty dealing with dying patients. Researchers who in the mid-1990s observed more than 9,000 seriously ill patients in five American teaching hospitals found substantial shortcomings in the care of the dying. More than a third spent at least 10 of their last days in intensive care. Among patients who remained conscious until death, half suffered moderate to severe pain. And fewer than half of their physicians knew whether or not their patients wanted to avoid cardiopulmonary resuscitation.
Intensive care...pain...cardiopulmonary resuscitation...all unpleasant and all known to multiply the agony of dying. These are just some of the reasons why physicians must fight feelings of awkwardness and embarrassment, why they must risk the wrath of unhappy family members, why they must find a way to broach the subject of the end of life without destroying their patients' humanity. We must find the courage to help our patients plan ahead, because when we say "end-of-life" we mean it. Whether that end comes peacefully at home surrounded by family or while on a ventilator in the ICU, it will come. Those doctors who take the time and have the compassion to explain end-of-life issues respectfully to their patients will reduce, not increase suffering.
"We are not in the business of providing hopeless care to the dying patient." Doctors everywhere would agree with that statement, but are they willing to do more than just eliminate the negative? Stiffen the sinews, summon up the blood, my compatriots and repeat after me:
"I am not afraid to help my patients live out the last days of life with understanding, comfort, and solace". That's the spirit - now raise your right hand and say it again: "I am not afraid."
Wait a sec - let me go first.
UPDATE: Click "Read On" for new developments on this topic...
My fellow SciBlogger Jonah Lehrer from "The Frontal Cortex," in a scintillating example of synchronicity, has also weighed in on Dr. Chen's op-ed piece. His cogent comments can be construed with one clickie-poo.
After writing this post I attempted to practice what I preach and counseled a patient about the options for advance planning of appropriate end-of-life care. I'm pretty sure it went terrible. I felt like I was springing the trap door of a gallows. Unless one is ready to abandon the concept of "honesty" there seems to be no easy way to bring up the subject of dying with a dying patient who isn't willing to accept the truth.
And I've been doing this for 17 years - 22 if you count my residency and fellowship!
Oh well, as what's-her-name said, "Tomorrow is another day," and I just found out that another dying patient has been admitted to the hospital. Tomorrow, therefore, will be another day for me to sharpen my end-of-life-care skills...and the tomorrow after that...and after that...to the last syllable of recorded time.
Good thing I love my job.
I am always so proud of you when I read your posts. It can't be easy on your end of things, but your exactly the kind of dr. I'd want. I'm going to add you to my blogroll, I hope you won't mind. It takes guts to talk straight to people facing these things, and straight talk is one thing they need. How else can they make the decisions, and still find some small feeling of control over what is happening to them. The worst part of all, other than the suffering, is the loss of control.
I've been an RN for nearly thirty years now, the bulk of it in critical care,but the last seven in hospice nursing.I'm currrently battling cancer myself so feel well qualified to speak from both sides of the proverbial fence.In my experience I've met but a handful of truly exceptional physicians...you among them.It is indeed a gift to be able to have perhaps THE most intimate of discussions with patients and their loved ones regarding end of life care and issues.I also live here in St Louis and pray daily for you (and those who love and support you)... for wisdom and strength as you continue to care for your patients and their loved ones so tenderly and thoughtfully.
Thank you, I'm printing out this post and handing it to my oncologist next month when I go see him. Then I'm going to flat out tell him that when he needs to talk to me about this I'll listen, and we can talk about it. Thank you for giving me the tool to open this conversation.