How Doctors Die

Photo: patrick.ward04.

Ken Murray, Clinical Assistant Professor of Family Medicine at USC, writes about his experience of how his peers in medicine tend to handle end-of-life issues.

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.

Zócalo Public Square :: How Doctors Die.

Boing Boing editor/partner and tech culture journalist Xeni Jardin hosts and produces Boing Boing's in-flight TV channel on Virgin America airlines (#10 on the dial), and writes about living with breast cancer. Diagnosed in 2011. @xeni on Twitter. email: xeni@boingboing.net.

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Dave Jenkins

My father, an internal medicine primary care physician, gave me explicit instructions when his mind started to go: do _not_ send him to the hospital or do anything ‘goofy’. Mother had already left because of breast cancer (my heart and support and energy and love from a total stranger goes out to you, Xeni), so– as you describe– he knew what was up, and wanted to go as painlessly and effortlessly as possible.

One morning, an aid from the senior home called to tell me that my father was refusing to eat or drink, and asked if I she should alert someone or call the hospital. I replied, “no”, quietly wished my father on his way, and began to weep quietly.
Preston Sturges

i looked into this a few weeks ago, and there is a lot of bitterness on this issue. The holistic health people seize on this as proof that modern medicine is worthless, and there are other people who say doctors-refusing-treatment is nothing but an urban legend.
- novium
  
  It seems to me that there’s a lot of middle ground in there. There’s not a lot of dignity in end-of-life stuff, but when it’s your life, it may seem like a reasonable cost. On the other hand, if you’ve seen a lot of those struggles first hand, that’s going to include some of the most brutal, and maybe that’s what sticks in your mind. Not the people that managed through intensive efforts to stick it out a while longer and spent more time with their families, but the really awful long, hopeless, endlessly drawn-out suffering. Maybe when you haven’t been exposed to it for most of your adult life, the risk that you’ll be the former rather than the latter seems worthwhile. Maybe when you’ve been exposed to a lot of it, you more value going out on your own terms rather than risking it for that extra time.
  - ldobe
    
    DDoctors have a lot of experience to draw on when considering the quality of life they’ll have when going into death. Most see that the outcomes they’re likely to have will not give them any improvement or will increase suffering for themselves and their families.
    
    I know that if I’m faced with terminal illness, I would rather die peacefully than have an extra month or two with things like intubation or life support.
    
    I also want to donate whatever organs are good enough to be useful, so from my currently healthy standpoint, I think I’d try to refuse any treatment that could damage anything someone else could use. But of course I’m a smoker, and my parts probably are bottom of the barrel.
- EH
  
  Of course the irony is that with your example it’s the holistic people medicalizing death, denying doctors the ability to just fade away. “NO, YOU MUST SUMMON THE ROBOTS IN ORDER TO HAVE ANY INTEGRITY.” Gag.
http://twitter.com/ScienceForward ScienceForward

http://www.radiolab.org/blogs/radiolab-blog/2013/jan/15/bitter-end/
- http://www.gildedgreen.com/ Girard
  
  This was immediately what I thought of. It’s a lot less dignified “serenity in the face of death” and a lot more terrifying “first-hand-awareness that many medical procedures designed to extend life amount to a fate worse than death.”
chgoliz

One of my grandparents made a point of being on an extended cruise off the coast of western Alaska, long enough to have a heart attack too far from even basic medical attention to get any sort of help. As a doctor herself, she knew perfectly well her heart was failing, and what would happen if she were anywhere near a major medical center when it did finally give out.

Sometimes it is the right thing to go gentle into that good night.
Keith Tyler

I’m having a hard time navigating the information on CPR. Is it effective or isn’t it? Is it a good idea to be training bystanders to give CPR given the low chances and the secondary risks?

From American Heart Association:

> only 32 percent of cardiac arrest victims get CPR from a bystander.> less than eight percent of people who suffer cardiac arrest outside the hospital survive.

If we assume the best case that all 8% of survivors were given CPR, that means CPR has only a 25% success rate AT BEST.

So why all the emphasis and urgency on people getting CPR training? Does it just serve a placebo for those who don’t know how to handle a crisis by giving them a purpose, futile or not?

And what’s with the urgency of providing defibrilators in public places? Is it just porkbarrel politics for the defibrilator industry? Or are they actually worth it?
- bcsizemo
  
  CPR isn’t going to bring you back, its main point is to keep oxygen flowing to your brain. So it is not surprising that it would have a 25% success rate if nothing else was done. What the real question is, how many people get CPR where it takes more than 5 to 6 minutes for medical assistance to show up? (And then correlate that with the percentage of those that have brain or other damage from lack of oxygen.)
  - http://pulse.yahoo.com/_RREC2OY32JFN6JWSK4KZNBZF7Y Jim
    
    Follow that Radiolab link above and listen to their Bitter End podcast. They claim a large scale study (every time CPR was done in Japan for a year, in the neighborhood of 100,000) showed 30-day survival after CPR was 8%. And that 8% included only 3% with what we’d generally call a good outcome, 3% in a persistent vegetative state and 2% somewhere in between.
    
    On TV, CPR has a good outcome 75% of the time.
    
    Physicians seem to understand this and are more clear-eyed that at some point further medical intervention becomes futile.
- Gyro Protagonist
  
  The urgency with CPR training is that in many situations, it CAN save a life that would otherwise not be able to be saved. If you were dying on the street, would you prefer a 25% chance that your life would be saved or an almost certain death?
  
  In hospitals the situation is trickier – many of those who receive CPR are persons with multiple other comorbidities (cancer, recent MI) and the prior probability of survival is quite low (compounded by the fact that quality of life if they survive will be quite poor). In younger patients with acute problems the survival is much better.
  
  Blaming doctors for the poor outcomes is misleading – many doctors actually would prefer NOT to perform CPR in many situations, but the patient/patient’s family has requested they do EVERYTHING to keep the patient alive, and the first priority of treatment is to respect the patient’s wishes. Physicians often counsel against CPR/resuscitation but families have an inaccurate picture of what it entails/the high fatality rate and a very understandable desire to keep their loved one alive during a difficult time.
  
  Defibrillators in public places are “worth it” in that they provide the chance to save a life that would otherwise have died. This doesn’t mean that they are perfect, just much better than the alternative.
  - aeon
    
    This, exactly.
    
    I do shifts on an Intensive Care Unit when I’m not anaesthetising. Family members often have this strange suspicion that we’re trying to avoid treating someone just because [we don't like old people; too lazy/don't care; prejudiced and discriminating whatever-ists; trying to save money (strike as appropriate)] when in actual fact the ‘standard of care’ is often more than we’d want to put ourselves through in that situation and they’re pushing for more misery in addition. Although we can refuse to provide pointless or futile therapy, the path of least resistance is often to do as bid and avoid the death of a thousand meetings or the trauma of being sued.
    
    Add those suspicions to the fact that many relatives are feeling guilty about the time they didn’t spend with their supposed nearest and dearest —so now they want to salve their consciences by aggressively ensuring everything possible is done— and you have a recipe for a miserable end for some poor sap.
    
    This doctor is going out out in a haze of morphine, benzos and major tranquillisers with no heroic measures whatsoever if he can’t arrange to drop dead quickly… ;-)
- Preston Sturges
  
  CPR recently worked for an 85 year old distant family member BUT they were found moments after they collapsed and an ambulance was miraculously at the house in under 3 minutes because it was driving by. A month later, they are still in the hospital but alert, we’ll see if they ever make it home.
- carillon246
  
  Problem also that most people do CPR wrong. It should only be done on person whose heart has stopped. But how many people check carefully before starting chest compression? And how many do it the way they see it done on TV with chest thumps etc? Perhaps the “survival” rate include people whose heart hadn’t stop but who managed to survive a bystander’s “help”.
  - EvilSpirit
    
    Having recently gone through Red Cross CPR training, they told us to not even *check* for a pulse, the reasoning being that doing so is difficult, error-prone, and time-consuming. Instead, unconsciousness without breathing is to be taken as prima facie evidence of a stopped heart.
Snig

I think that there’s a lot of docs who believe that there’s a place for euthenasia in end of life care, and who aren’t afraid to choose it for themselves. They know better than others that it’s not easy to engineer once they’re on the machines. It’s hard to offer this to others, but easier, legally and ethically, for them to choose it for themselves. I don’t begrudge them this choice, though I think ideally, it should be available to others.
- aeon
  
  A minority in any country I’ve worked in, although there are some. The majority of us believe we have a duty to preserve quality of life as much as possible, then to make passing as comfortable as possible when that is no longer feasible.
  
  I wouldn’t ask a colleague to actively finish me off. That isn’t what we are here for. But they all know I wouldn’t want anything heroic doing and that any injury that significantly impairs my brain would be grounds to quickly let nature take its course and not intervene.
  - Antinous / Moderator
    
    Can we not call it ‘heroic’. If it’s happening in a hospital, it’s called ‘paid labor’.
    - ohbejoyful
      
      It’s a term of art – if you want to communicate to your doctor that you don’t want her to pull out all the stops when your heart stops, you tell her you don’t want heroic measures: http://en.wikipedia.org/wiki/Heroic_measure
      
      If you tell her you don’t want any paid labour, you’re liable not to get your meals delivered.
entireleaves

This is very true in my fathers case. He was diagnosed with pancreatic cancer, that has metastasized to his liver, last August. So far he has been amazingly calm and zen about the experience. Since he is a doctor he understands that his treatments can at best relieve some discomfort and give him a little more time. He chose one of the least invasive options as far as treatment goes.

He says that he had hoped to live another 10 years at least (he is 74) but he has lived a long life and is happy that all his children are at relatively good places in their lives. His experience has been very different than a 78 year old acquaintance of mine who had stage 4 lung cancer and seemed to think there was hope of a cure.Obviously this has been a horrible thing to go through for my family but it helps that he is so matter of fact about things and brings me comfort that he has had time to travel and visit with friends and family since his diagnosis.
sneeg

I am a physician, young (in my 30′s), with small children, and generally healthy and should I be admitted to the hospital tomorrow, I would elect to be “partial code” – no CPR/chest compressions but intubation and defibrillation would be OK. This is based on a lot of personal experience and my personal value judgements about the possible outcomes.

The important part of that statement is my personal value judgements. Patients are allowed to ask me to do whatever they want me to do (in the US). Even if I determine that something is medically futile, I still have to do it. My job is to make sure they understand the possible outcomes (“It isn’t like TV” “I will crack your ribs and you will bleed into your chest because of your blood thinner” etc) and the chances of those outcomes.

I think a large part of why physicians decline invasive procedures at the end of life has to do with our exposure. Who do we spend the most time with? The patients who are doing poorly and having a lot of complications. For instance, for all the millions of joint replacements that go well, I would be very hesitant to have one. I only see the ones that go poorly (terrible infections) on the medical wards. My Neurology colleagues only see the people who have a stroke after joint replacement. Our incentive to avoid those states is high.
jhoosier

My grandfather was a cardiac surgeon (ironically, his heart is what got him), and also the worst patient in the world. He refused to get a cane to help him walk, he finally agreed to use an upside-down putter so it didn’t look so weak. He also refused to get handicapped plates, even for my grandmother who had trouble walking. He’d often refuse to get checked out, or go in if something was bothering him.
- Antinous / Moderator
  
  Two attending physicians at San Francisco General Hospital / UCSF rather famously tried to keep a third attending from going to the ER with a ruptured appendix until it was almost too late. My guess is that it came from a “don’t consort with the kine” mindset.
- http://burntheflag.ca Jardine
  
  I’ve never understood why people think they look weak with a cane. Canes are great. You can use them to poke young whippersnappers or smack them across the shins and get away with it. You can also use it like a pipe to emphasize points but without the stigma a pipe brings. I want one now, but I don’t think I can pull it off.
  - Tynam
    
    I just regret that sword-canes are no longer legal. I always wanted one when my turn came to need it.
http://twitter.com/chrisjimson chris jimson

So. . . go gently into that good night, do not rage against the dying of the light?
- Paul Renault
  
  No, it’s “don’t make all these other people (y’know, the people performing the CPR, the intubation, etc, etc) rage against the dying of the light”, ‘cuz it doesn’t matter, it doesn’t help, and it usually makes things worse. Read the article.
  
  While you’re reading it, remember that doctors have intimate relationships with people who are near death and who are dying – all the time. They see people ‘recover’ from near-death emergencies, they read the statistics, the research papers, and, most importantly, spend a lot more time thinking about life and death than does the average person. Their opinion just might have some value.
  
  When my own father, a physician, was near the end of his life, the surgeons amputated one of his legs because of blood clots/poor circulation (and gangrene, I guess) in an emergency. His widow told me that the had discussed end-of-life options. He didn’t want ‘large’ procedures, for example the amputation, performed.
  
  This extended his life by about five weeks. Five weeks he spent in hospital, either doped up or in constant pain. He was lucid and able to make conversation for about a half hour, twice a day. There was pretty much zero chance of recovery. Even if he recovered, his mind was going. And he was aware of the medical history of his near relatives – years of senility at the end of their lives.
  
  Eventually, after much discussion with his doctor, he was moved to palliative care – where they are allowed to greatly increase the dosage of narcotics. The instructions he gave were, essentially, to keep him ‘comfortable’. Or ‘comfortably numb’.
  
  ‘Unconscious’, if you don’t get my drift.
  
  He was gone a week or so later. Essentially, nothing was gained by the emergency amputation.
BunnyShank

As a young person working in my first Skilled Nursing Facility, there was one patient who came in that was a prominent doctor in the community, meaning he helped people that had no money. He was somewhat clear headed, if disoriented, but he nodded hello to me, smiled and went to sleep, and the nurses nodded knowingly. I’d ask each week what his feeding status was, and each of the three weeks until he passed were the same. Refusing to eat or drink. Not eating is relatively ok way to die, dehydration is excruciating. I thought he just wanted to be left alone, and maybe had a cynical view of “care”. But this article and the comments, puts his time in a new light for me.
- ohbejoyful
  
  Death by dehydration in mid-life is one thing; at end of life death by dehydration is not excruciating. It’s typically a well-considered choice many patients make, and the discomfort is straightforward to manage. I volunteer with both hospice and No One Dies Alone, so I’ve seen this first hand many times. I’m curious where your information originates, since you work(ed) in the medical community – maybe this was a while ago, and protocols have changed a bit?
MythicalMe

My mother is dying. She has stopped treatments and simply says that she wants to live her last few months. When I spoke to her last she told me that and I explained that I understood her decision and agreed with it (not that she needed my permission).

I’ve always tried to be pragmatic. No one lives forever and my mother is 72 years old. I hope that she dies peacefully.
fiatrn

@BunnyShank:disqus – No, dehydration is not excruciating. Having hypernatremia from dehydration while trying not to be at death’s door may be a bad experience, but dehydration at end of life is reported to decrease discomfort and decrease need for pain medication.

Here are two quick/easy googlinks that discuss dyhydration:
http://www.dyingwell.com/prnh.htm

http://www.hospiceotp.org/index.php?mact=News,cntnt01,print,0&cntnt01articleid=4&cntnt01showtemplate=false&cntnt01returnid=60
I think you’ll find that the more you read about dehydration and pain control and end of life quality, the more you will appreciate the humanity of not putting IV fluids into some people and not feeding some people – especially against their will. Not that you said we should, just that some people Fear we will.

Hospice caregivers have really become wonderful at making death more comfortable.

in response to several other posts:

1 - end of life decisions are always the patients’ legal choices. They are called different names in most states, but DNRs, DNIs, living wills, MOSTs, etc exist throughout the US and are legally binding WHEN available to the health care providers. We have to do what you say, whether it is more or less than we personally prefer. We can counsel you about the outcomes, but the choice is yours.

Medicare/Medicaid/JC REQUIRE that these topics be broached upon admission to hospitals. How the hospital, practitioner, and patient take on this discourse varies in both effectiveness and energy.

2 – CPR is not really effective. New training modalities are teaching “bystander” CPR as chest-compressions-only for a variety of reasons (higher likelihood of initiation, better results without pauses, less risk of disease transmission, etc ( see http://circ.ahajournals.org/content/122/18_suppl_3/S640.full.pdf+html )). CPR is mostly a bridge to defibrillation and/or treating the causitive agent of the arrest. Time is brain, though, and so the longer things go on the worse your outcome will usually be. There are various technical attributes to this, but this article is not about CPR so I’m almost done with that topic.

3 – a more useful metric than “cpr survival” is Survival to Discharge. If you get resuscitated in the ED but never make it home, was the intervention/Code/CPR/etc worth performing?

4 – There is a good bit of discussion about not initiating care that will prove fruitless. Rather than using the idea and terminology of “removing” or “stopping care,” we (I’m an ER RN) are starting to think and talk about the proper way to not “escalate” interventions into the realm of the fruitless. With intensivist and hospitalist models, where those MDs are paid salary, your doctor in the hospital does not have a financial incentive to provide care that is fruitless. There are problems with the model and the pay system, and overall our systems here in the US, but flogging a patient in the ICU really doesn’t pay to the MD, the RN, or anyone else that takes part in the decision tree.

Jonathan
the FiatRN
Denver, CO
Jason Garland

But they regenerate right?
http://pulse.yahoo.com/_A223JCZ5KSD4AC5A3U6G76KCQ4 greasy

I sent this to my insurer, and he just called me back, sobbing.
WinstonSmith2012

My mother died a horrible, lingering, painful death from pancreatic cancer. EVERYONE should be legally allowed to painlessly end their life in such situations via the application of a large overdose of morphine (assuming that can actually work as a humane method – I only know that method from a House MD episode).
Finnagain

Let the hate flow through you!
Gyro Protagonist

Or they’ve actually run codes, performed CPR, and realize that a small percentage (I’ve read estimates in the literature of 5-20%) actually survive a code (and if you haven’t been involved in one, they are traumatic – broken ribs are fairly common). There is a world of difference between choosing to die peacefully at home from a disease that you know is terminal, and refusing any medical treatment at all.
Care at the end of life should be a choice subject to the same informed consent procedures as any other part of healthcare, and it is a major flaw in the American system that we don’t emphasize hospice care and palliative care over aggressive treatment in many futile (in the technical sense) situations.

Avoiding dramatic measures unlikely to result in meaningful quality of life is not the same as admitting that their profession is “useless.” But you can keep up your simplistic worldview if it makes things easier for you to think about.