If you’re interested in a responsible approach to one’s own death, you’ll want to read How Doctors Die, on the Zocalo Public Square blog.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently. …
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I was deeply moved by this article when I read it on the Zocalo Public Square and by the discussions it spurred. Indeed, the site went down (I presume due to traffic it generated) early in the week, and so I’m glad that the site is now back up and that the article continues to stimulate discussion on Twitter, Google+ and elsewhere.
I think that a large part of the problem is that we (as a society) have an impulse to “have everything done” as a built in default even when (As Dr. Murray lays out so eloquently) the situation is objectively futile.
This does not only take place with what we would traditionally call “end of life” care. In my field of perinatal medicine we now have the ability to identify (reliably) a fetus that will not live beyond one year of life while it is still in utero. Mercifully, such cases are few and far between; however, when a couple is given such a diagnosis the spectrum of responses is large and complex.
Think for a moment what YOU would do if you were 16 weeks pregnant and
told that your fetus had a 99.99% likelihood of dying before its first
birthday. What would you do? I think it’s safe to say that there is NO one size fits all solution to this dilemma.
In a related way; I knew for a FACT that *I* wished to be considered DNR (at the end of my life) after my first experience with CPR as a third year medical student. The patient was an 88 year old man with a long history of cardiac problems. He had been unconscious in the ICU for several days,connected to multiple machines and was undergoing treatment for a number of hospital acquired maladies. As I gave chest compressions during CPR; I could feel his ribs break under my fingers and thought “I do not want to die like THIS”
The issue then becomes how do we create a medical system where patients address concerns regarding end of life care in a transparent and informed way BEFORE they find themselves in a situation where the default mode is to “do everything”. The discussions regarding advanced directives, living wills etc above… are noted and greatly appreciated but (as previously discussed) also have their limitations.
I think there is a huge opportunity for any developer who finds ways to make software/apps/individualized solutions to assist patients in
exploring their wishes in this regard up front.
It would be a lot less expensive & time consuming than asking patients to go to medical school and experiencing a “code” as a third year student to determine their wishes.
Just a thought.
C. Onyeije, M.D.
http://twitter.com/chukwumaonyeije
It is remarkable how charged this topic is. I am working on a review paper on end of life costs, specifically in the hospital and the ICU, and am shocked by the magnitude of our denial of death. I came across a survey on Medscape, where of 7,000 MDs, when asked if they would ever “recommend or give life-sustaining therapy when [they] judged that it was futile,” 24% said “yes” and another 39% said “it depends.” What?!!
Here is a link, but I think you have to be a member:
http://www.medscape.com/viewarticle/731485_2
Thank you, Marya.
I too have been surprised at the degree to which the culture of medicine is dominated by what you rightfully call “denial of death”.
The survey that you quoted fom Medscape is sobering. Let’s just consider what it means when a clear plurality of physicians will either recommend or give life sustaining therapy that they have judged to be “futile”.
Let’s take another step back and look at the definition of futile.
“incapable of producing any result; ineffective; useless; not successful”
I think if we look at the starkness of the definition we have no excuse but to consider the provision of such care in a futile situation to be a profound failure of communication and informed consent.
I cannot believe that a majority of patients or their family members will ask for life sustaining therapy if they knew it would be “incapable of producing any result”, “ineffective” or “useless”. It’s an important question that speaks to the cost of the care we give, the quality of life for those involved and satisfaction with the service rendered.
However, it’s difficult for me to be too hard on doctors in this case when the problem most certainly appears to be cultural and systemic. As I stated earlier; if the baseline assumption is that heroic measures *must* be taken – even when these measures will not work or (even worse) when they will cause more suffering; then we need to have a way to address this baseline assumption before it is activated in the care of patients.
I think this has to start with therapeutic relationships where such discussions occur and decisions made with full transparency and (of course) participation.
Docs, thanks for your comments. I have been overwhelmed with the response to this article, and am gratified that it is bringing attention to end-of-life issues.
Ken