Doctors and Dying
“I intend to live forever. So far, so good.”
- Steven Wright
The humor in many of comedian Steven Wright’s famous one-liners is that they are simultaneously familiar and absurd. At some level we all know that we are going to die, but as long as we are still alive (or a loved-one is alive) we can cling to the irrational hope, the impossible denial, that death remains a distant abstract concept, not an near inevitability.
We all need to come to terms with death in our own private way, but often those terms are not private because they drive our use (for ourselves or others) of increasingly expensive health care. Two essays over the last year by doctors explored this issue, noting that when doctors face their own mortality they often make different health care decisions for themselves than the general public.
In February of 2012, Dr. Ken Murray wrote an essay in The Wall Street Journal – Why Doctors Die Differently. His primary thesis was that doctors choose less end-of-life care for themselves than the average patient. They do so largely because they are intimately familiar with the futility of much of what we do for patients who are likely going to die anyway. As one example, CPR has a success rate of about 8%, with only 3% of people receiving it going on to have a near-normal quality of life. Those numbers are pretty grim. Meanwhile, TV depictions of CPR are successful 75% of the time with 67% returning to normal life. Sometimes the person wakes up during the CPR, is fine, and then goes on to thwart a terrorist attack without missing a beat.
For the general public, receiving CPR means surviving and going on with life. For doctors, receiving CPR means prolonging the inevitable and just adding unnecessary additional pain and suffering in the process.
Even when told the numbers many people will cling to that 3%. Physicians live it, however. They see first-hand the outcomes and it is real to them.
A second essay by Richard Senelick from last year, Why Dying is Different for Doctors, focused on being comfortable with one’s own mortality. His point is that the more familiar an individual is with death the more they have likely come to terms with their own death. This allows people to “die with dignity.” He did cite two studies, but they did not support his premise. One Israeli survey showed no variation by specialty correlating exposure to death and personal anxiety about death. The second study he claimed did show a relationship, actually didn’t. It showed:
The results confirmed an inverse relationship between the use of repression and overt report of death anxiety for the physicians tested. Frequency of exposure to death seemed to have no effect on defensive style. The physicians most frequently exposed to death (internists) did not employ the most repression, as expected.
Anxiety over death did decrease with age, but that is a general trend not unique to physicians. Of the two hypotheses above, familiarity with the futility of certain care, rather than decreased anxiety about death, seems to have the more compelling case.
Unfortunately, there isn’t much more published about the attitudes of physicians toward their own end-of-life care. Physicians are far more likely to have made advanced directives – Murray cites an article indicating that 64% of physicians compared to 20% of the general public have made advanced directives (instructions for what to do and not do if they are gravely ill and unable to communicate their desires).
Issues of death, advanced directives, and futile care are increasingly important as the cost of health care continues to rise and is generally considered to be unsustainable. I was extremely disappointed to see, during the debate about Obamacare, that these critical issues were effectively sidelined by painting them with the politically unpalatable label of “death panels.” This term exploited one barrier to effective end-of-life counseling and advanced directives, lack of trust of the system.
Doctors and certain other health-care workers know first-hand that some interventions are not likely to be worth it in some situations, and can comfortably choose to forgo expensive and painful interventions that are truly futile. Their families who trust them also make similar decisions. But for the general public, without first-hand knowledge, they have to have enough trust in their doctors, the hospital, and the system to believe that when they are being told that a certain intervention is not worth it that this is a fair assessment.
Some comments to Murray’s article reflects this attitude, for example:
In other words, 99%, can you please die quickly? the rich need those machines.
I have personally encountered such pushback – families who fear that the system is willing to sacrifice their loved one in order to save money. In fact, there is a kernel of truth to this. It is ruinous to everyone if, as a society, we spend health care dollars we cannot afford on care that every specialist involved knows to be futile, or to have only the tiniest sliver of a chance of an outcome that is something other than horrible. People don’t think about society when they are making such decisions for loved ones, however. It’s also the physician’s job to advocate for their patient, not society. Discussions focus, therefore, and as they should, on what is best for the patient.
As a society, however, we do need to balance what is optimal for individuals and what is best for society, which is really just about considering all individuals. To a degree we are dealing with a zero-sum game in that health care resources are being rationed and increasingly will need to be rationed. Spending health care dollars on futile care for the dying will take resources away from others who are more likely to benefit.
Right now there is no good mechanism to avoid truly futile care, other than individual physicians counseling families and patients in each situation. To be fair, much of the time, in my experience, people make very reasonable decisions and generally follow the advice of their physicians. It doesn’t take many exceptions, however, to spend billions on futile care. Utterly worthless interventions should be the low-hanging fruit in terms of reducing health care costs, but it seems to be off the table.
It seems that more study is needed into how people (including doctors and other health care workers) make decisions about end of life care. The system does need to do a better job overall in confronting these uncomfortable issues. Doctors need to discuss these issues more consistently with their patients, more of whom should have advanced directives. Even worse than merely futile care is futile care the patient does not want, but we are obligated to give because that was never documented.
These are all difficult, controversial, and even painful topics to discuss, but we can no longer afford to avoid them.
Posted in: Politics and Regulation
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BillyJoe, agreed. I wasn’t saying any cancer at any stage is fightable … that is nonsense to my mind. Just meant that some people won’t fight even if there is, logically, some hope of cure.
And also I was appealing to let them be … not din in their ears that they MUST battle it, even if they really don’t want to for whatever personal reasons. Or even ask them their reasons. It might be risk assessment, or a preference for letting life go, or some combination.
Families especially can be very … insistent … that the person with cancer fight on, even when they have had enough. I sometimes wonder if that isn’t sometimes imposed upon children by their parents, or on one spouse by another.
(and sorry to be difficult, but I want to go on using the “fighting cancer” terminology … it expresses something I want to say).
I do agree with Kathy about personal approaches. For instance I feel that my mother “battled cancer” not because she went to any extreme to survive her cancer (She basically followed the program that her doctors recommended for treatment, then palliative care, hospice) but because of her brave efforts to maintain her joy and participation in living and her generous nature for as long as she could. It seemed to me that she decided “sure this disease may end my life, but I’m not going to let it take one bit more from me, or anyone I love, than it needs to.
But then again, I see it that as a battle, I doubt that she would have described it that way. In so many ways she had a hard life, but still had all these stories to tell that delighted in life…so I think she would have just called it “making the best of things” or something similar.
But people can only bring the mental and emotional resources that they have developed in life to their dying. Not everyone has the same personality, mental or emotional capacity, experiences or disease. So I feel that judgements of what’s right for everyone are not-constructive…there’s definitely not a one size fits all answer.
I suppose the reason I don’t like the phrase “fighting cancer” is because that battle is either “won” or “lost”. I don’t think that is either a helpful or realistic way to look at cancer. Most people with cancer “lose the fight”. I wouldn’t want to set myself up for that. Michelle’s mother’s “making the best of things” seems to me a more realistic approach.
But BillyJoe – In my mind, dying is a loss for most people and for the people who love them. I think it’s not realistic to pretend that it’s not. But in some cases it is an inevitable loss, so we then try to rescue what we can from the fire.
I would think the problem is if we hold unrealistic or wrong views of the worth of “winners” and “losers”.
This guy was a “loser” but I think many people found his actions worthwhile.
http://www.usatoday.com/story/gameon/2013/01/19/ivan-fernandez-anaya-runner-loses-on-purpose/1847999/
But then I am purely speaking from my perspective. I’m a firm believer in folks using the metaphors that are most compelling to them. Whatever gets you through the night, I say.
Well, Michelle, then we are all “losers” because, in the end, we are all dead.
I prefer to focus on the journey and do the best I can for myself and others in the circumstances in which we find ourselves.
And that runner was not a “loser”, he came in second and did better than every runner but one.
This is the problem with the “winners and losers” attitude. In the The Great Train Race, there are 3,200 entrants. For someone caught up in the “winners and losers” game, there is only 1 winner and 3,199 losers. All but about half a dozen may not even have bothered to enter the race. The reason I participate and, I think, most participate is for the journey – maximising your training in view of the other demands on your time, easing up the training before the event, and planning your strategy for those three gruelling hills and the final ascent to the finish line. The well executed journey is the reward.
http://www.puffingbilly.com.au/news-events/great-train-race/
BillyJoe – I think we are saying something very similar with different terminology. (:
Yes, The way I think of things, we are all loser and I prefer to acknowledge that losing is part of life and deal with it the best I can. Part of dealing with it is keeping the losses in perspective and choosing to focus on the “wins”, the rewarding and joyful things in life, when I can.
To some extent I can redefine “wins” as I like. If I was in an organized run, I could define my win as finishing or as finishing in a certain time. I can see how someone can do that with dying from cancer. They can say “I’ve had a good life accomplished a lot. In the end, I think I’ve won.” In fact, I CAN do that with someone who is very elderly. But I just can’t do that with someone who is not very elderly, who should, in my mind, have more time, who will be missed desperately…I can’t honestly redefine that as anything but a loss.
But it is one loss, which is only a part of a bigger picture.
Now, obviously my comments have moved away from the problem that some people will imply that a person who died from cancer is a “loser” because they didn’t try hard enough, they didn’t pursue enough alternatives, or they were not “positive” enough. That approach just sucks. IMO – It is basically throwing a vurnerable person under the bus in an attempt to feel safely in control of your own life. That is not at all what I am getting at. If I ever do that, someone smack me, cause I hate when people do that.
That Puffing Billy, what a fun idea.
@Billy, @Mouse – if you re-read what I said in my last comment, I’m actually neither for nor against “fighting cancer”. What I was appealing for was that, if someone does want to fight at all, or feels that the fight is beyond winning now, there should not be pressure applied by family/friends, or by medical personnel, to go on with the battle. Woo believers are especially recalcitrant in this respect … if one remedy doesn’t work they are speedily pressing another on the unfortunate person.
The pressure can be quite intense at times, and take away their free choice how to spend their last days. Guilt, pity, tears, preaching, everything may be harnessed to force them to take the “right” road.
I am defining “winning” here as killing the cancer, as being cured. I don’t have any quarrel with you that there are other ways of “winning”! But usually they come into play when hope of the other kind of winning has been relinquished. If you could win a big road race, i.e. come in first, what are the chances you’d take the win? I would! (in my dreams, sigh)
@Mouse “some people will imply that a person who died from cancer is a “loser” because they didn’t try hard enough, they didn’t pursue enough alternatives, or they were not “positive” enough. That approach just sucks.”
‘Pologies, I didn’t read you carefully enough! I see now what you were really saying.
no worries Kathy – and I completely agree with you. I’ll even expand on that to include other health conditions.
For an example, my mother-in-law, (bless her heart) seems to work on this unspoken assumption that most health conditions can be alleviated in a timely manner* if you just see the right doctors, ask the right questions, or well…do something different. Her approach to life is basically, if something is going wrong, somebody must be to blame. Now, I’m making her sound much more unpleasant than she actually is. She is actually a kind person, cares alot about people and has a good sense of humor…but that one characteristic does make her not a very good confidant when it comes to problem solving in health or otherwise.
um, sorry that was more venting than anything else.
*about half the time that reality dictates
Well, it seems we all three of us agree and are all winners in this sense.
I have a bottle of red wine to celebrate, so come on over you two |:
It’s a bit early for me to start drinking. But I’ve got my latte, chin-chin.
Damn time differences…