“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.