When the End of Life Is Not.

So begins this New York Times essay by Peter Bach, MD, where he talks about the inadequacy of resource use at the end of life as a policy metric. Now, I am not very fond of policy metrics, as most of you know. So, imagine my surprise when I found myself disagreeing vehemently with Peter’s argument. Well, to be fair, I did not disagree with him completely. I only disagreed with the thesis that he constructed, skillfully yet transparently fallaciously (wow, a double adverb, I am going to literary hell!) Here is what got me.

He describes a case of a middle-aged man who was experiencing a disorganized heart rhythm, which ultimately resulted in dead bowel and sepsis. The man became critically ill, the story continues, but three weeks later he went home alive and well. This, Dr. Bach says, is why end of life resource utilization is a bad metric: if this guy, who had a high risk of dying, had in fact died in the hospital, the resources spent on his hospital care would have been considered wasted by the measurement. And I could not agree more that lumping all terminal resource use under one umbrella of wasteful spending is idiotic. Unfortunately, knowingly or not, Peter presented a faulty argument.

The case he used as an example is not the case. Indeed it is a straw man constructed for the cynical purpose of easy knock-down. When we talk about futile care, we are not referring to this middle-aged (presumably) relatively healthy guy, no. We are talking about that 95-year-old nursing home patient with advanced dementia being treated in an ICU for urosepsis, or coming into the hospital for a G-tube placement because of no longer being able to eat or drink. We are talking about patients with advanced heart failure and metastatic cancer, whose chances of surviving for the subsequent three months are less than 25%. And yes, we are also talking about some middle-aged guy with gut ischemia, sepsis and worsening multi-organ failure whose chances of surviving to hospital discharge are close to nil; but in his case, instead of being clear from the beginning, the situation evolves.

So, yes, the costs of end of life care, and specifically hospitalizations, are staggering. But more importantly, among patients with terminal illnesses like metastatic cancer, advanced heart failure and dementia, hospitalizations and heroic interventions at the end of life cause unnecessary pain and suffering, and without much, if any, benefit in return. Their families and caregivers suffer as well, and many studies suggest that these caregivers are not interested in prolonging suffering, provided they are aware of the prognosis. Unfortunately, just as many studies suggest that communication between doctors and patients’ families about these difficult issues is less than stellar.

So, let me play the devil’s advocate and pretend that I support end of life resource utilization as a quality metric. If I did, I certainly would not be interested in depriving Dr. Bach’s middle-aged acutely ill patient of the chance to survive. In fact, my aim would be to make sure that we align resource use with where it can do most good, and turn away from interventions that are apt merely to prolong dying.

Marya Zilberberg, MD, MPH, is a physician health services researcher with a specific interest in healthcare-associated complications and a broad interest in the state of our healthcare system. She is the Founder and President of EviMed Research Group, LLC, a consultancy specializing in epidemiology, health services and outcomes research. She is also a professor of Epidemiology at the University of Massachusetts, Amherst. Dr. Zilberberg blogs at Healthcare, etc.

7 replies »

  1. In other developed countries like Germany, they are proud of their cultural value of solidarity. Virtually everyone is covered by health insurance and financing is based largely on ability to pay – income based, sliding scale, and some general tax revenue thrown in. Another component of this solidarity, though, is an expectation that resources will be used wisely, waste will be minimized and individual patients and families will not impose unreasonable demands for expensive care with a low probability of success on their fellow citizens.

    In the context of end of life care, I suspect, but don’t know for sure, that doctors in Germany will be quicker to tell patients and families that there is nothing more that we can do aside from comfort care. Patients and families, for their part, won’t be as quick to sue if a full court press were not applied to try to beat the long odds. At the same time, German hospitals operate subject to budget constraints. They are not paid more to provide more care whether it does any good or not. Perhaps we should look at a different payment model than fee for service, DRG’s, and per diem payments to finance hospital based care. Maybe some version of global budgets or risk adjusted capitation might be a better approach.

  2. Ah, but once upon a time you knew the patient in that bed. You would have known what Sally would want you to do now, because you have taken care of her and her family for twenty or thirty years. Just like the baker in the corner store knew that she preferred her loafs on the crispy side and the butcher knew to save that special tenderloin for her.
    All you have now is a bunch of CPTs, ICDs, demographics data and some statistics, because dying is being industrialized too.
    There is a price to pay for the benefits of mass production, and in this case, the price may be too high.

  3. Will never be easy answers here. 5% chance of making it enough to throw the kitchen sink at you in the ICU? 80 years old with mild dementia make a difference? 75 with moderate dementia? 3% survival chance enough?

    (as if we ever really know the odds anyway)

    there are some clear cases where we should focus on palliative care.
    there are some clear cases where we should focus on aggressive care.

    there are a lot of cases in the gray area, and many of those will likely look like futile care with the benefit of hindsight, but at the time it didn’t necessarily look that way. (especially to the family and/or the patient).

  4. I don’t work for hospitals, because you are right, they have sold their souls.

    By the way, still no evidence resources are infinite.

  5. Howdy, Dr. D. I assume I am that “one person who continues to argue otherwise”, so allow me to respond with a rather lengthy question.

    Let’s put the money aside for a minute, although I find it fascinating that all of a sudden there is a proliferation of articles in support of dying cost-effectively, under the premise of reducing pain and suffering. I even saw a piece the other day about the right to a peaceful death or something like that.

    Which brings me to my question. If this is what doctors believe, and if this is what they choose for themselves (like the earlier post here), why are you (not you personally, but doctors in general) not applying this to your patients?
    As the author here states, neither patients nor their families are very likely to choose torture before imminent death, so why are you offering this option? Why are you running full codes on that 95 years old described above? How did this become the “standard of care”? Lay people, or patients, do not create standards of care. Attorneys cannot do that either. So how did we get here?

    I know most doctors don’t profit personally from futile care, but hospitals do. Significantly. Why are you allowing hospitals to dictate the definition of “harm” in this particular instance?

    Would you prefer that government stepped in and stopped you from doing so?

  6. 1 example of success neutralizes probably a dozen or a bit more of failures?

    Get real, authors and commenters. Having watched a family member get 44 units of blood in about 2 weeks time and survive to now, I still say painfully, but equally realistically, it shouldn’t have happened. These are finite resources, and to this one person who continues to argue otherwise, tell us where that warehouse is located holding that infinite blood supply!