This discussion was inspired by the two women I owe my life to: my mother and my wife.
I cannot identify the citation for this factoid, but the assertion has become engrained in the lore of medical urban myth: “50% of healthcare costs are incurred in the last 6 months of life.” (or some similar figure) There are other less arresting but more concrete statistics to be found. For example, according to Health Affairs, July 2001 vol. 20 no. 4 188-195, one quarter of Medicare outlays are for the last year of life. Another more recent discussion concerned the various factors that influence that spending in the last 6 months. An article in the Annals of Internal Medicine for February 15, 2011 vol. 154 no. 4 235-242 describes determinants of healthcare spending and points out that regional variation in medical care does not account for as much variation as is sometimes pretended.
A concise summary of that article by one consulting firm states “Individual characteristics such as black or hispanic race, severe functional impairment, having Medicare Supplement coverage, suffering from certain chronic diseases or from four or more, were associated with higher spending. Others, such as having a relative live nearby or having dementia, are associated with lower spending. And some, such as having an advance directive, sex, marital status, education, net worth, or religiosity, appeared to have no relationship. Altogether, patient characteristics account for 10% of the variation in spending in the last 6 months of life.” (Quoted from Kevin Roche at vitaadvisors.com) Yet even with all this taken into account, patient and regional factors accounted for only 15% of the variation.There seems to be a major subtext to all of this discussion about the last six months of life, whether the topic is cost, ethical issues, quality of life, or whatever. The unstated message is “WE ARE WASTING MONEY ON FUTILE CARE!”. The implication seems to be, “couldn’t we devote these scarce medical resources to more beneficial use?” and “Why are we prolonging suffering and poor quality of life at such great expense to so little gain?” I ask myself these same questions whenever I walk down the corridor of the ICU to see a consult, past room after room of people on ventilators, bloated, mittened and tubed beyond our ability to recognize them as the same individuals seen in the photos I sometimes see pasted to the wall opposite the bed. “Don’t we know”, I ask, ”when to cease and decist?
But how DO we know when it is time to cease and decist?. My wife recently posed the question another way. She pointed to a commonly ridiculed question : “Why do you always find things in the very last place you look?” ”Well, stupid,” is the rejoinder, “because you stop looking after that!” But, she observed, the question really contains an ellipsis: you find things in the last place you think to look. And viewed that way, it is an entirely sensible question. Retrospective data from Medicare rolls are all well and good, but it is entirely different matter forecasting when to start that 6-month countdown clock ticking!
The question was brought home to me when last spring my widowed mother at age 85 went into acute congestive heart failure after rupturing a mitral valve. At first it seemed a simple matter: a minimally invasive repair by a trusted cardiac surgeon at a nearby hospital known for cardiac care. But a pre-operative angiogram revealed a 95% narrowing of her left main coronary artery. Minimally invasive was no longer an option. She needed valve surgery AND a bypass graft. My mother was not medically sophisticated enought to weigh risks of surgery versus anticipated length and quality of life, even without the further impairments of disorientation during a 48-hour sojourn in the ER holding unit awaiting a bed. So the call was essentially mine.
I am not a surgeon, but I am a great believer in seizing the opportunity that surgery affords us to cure what can only be palliated by medications. I knew the quality of life and the prognosis with a flail mitral leaflet was not a good one. I told my mother and her surgeon, “Go for it!” Mom was really too confused to argue or question.
The surgery was more complicated than anticipated; she needed a reconstruction of a myxomatous degeneration of one leaflet (i.e. there was nothing even left to sew back together) using Gor-tex. The surgeon assured me she would be off the ventilator in a few days. Instead, she spent 3 weeks in the surgical ICU relying on what lay people refer to as “life support”. There was nosocomial pneumonia and central venous catheters. She was delerious and fighting the vent and the nurses for much of that time. When she was coherent again but still not able to be taken off the breathing machine, she wrote on the pad I held for her “What am I doing here? Why are these nurses torturing me? These tubes are killing me! Why did you do this to me? I can’t take more of this!”
More than once during those 3 weeks, my wife asked me, “David, are you sure you did the right thing?” Even her brother, a research cardiologist with advanced angiographic skills, asked me if I had not been overly agressive in pushing her into surgery. My confidence did not waver. I told them I have seen many patients sicker than her spend twice as much time in ICU’s on ventilators and return to my exam room after their ordeal, their health restored and their loved ones grateful.
My mother did recover, albeit very slowly. Six months later she is now living in a one-bedroom apartment at a wonderful assisted-living community nearby. She is happier and leading a fuller life than she was before the surgery. We received the Explanation of Benefits from Medicare a month after her hospital discharge. The bill was $300,000. (Of course, that was retail. Medicare pays the hospital a substantially lower fraction of the list price.) Last time I went to visit her, I couldn’t find my mother anywhere in the faciltiy; she blithely told me later she had gone for a walk. Perhaps my mother will enjoy another 5 or 10 years.
Was it worth the cost? If you ask me, emphatically, yes! But what would we all have said if one complication had followed another and her course had been inexorable deterioration and ultimately a decision to halt aggressive care. It could have easily turned out that way. We would all bemoan the futile waste and unnecessary sufffering for a patient in the last six months of her life.
My point is not that we should always be aggressive in caring for the elderly and the chronically ill. The point of the story is that we have such inadequate means of predicting who shall live and who shall die. Some patients like to say it is all in the hands of God and we have no way to do so. (“who by fire and who by water, who by war and who by famine…”) But my tradition urges us to pray as if all depends on God but act as if all depends on us. My argument is that we can and we must devise better prognostic measures, to guide us in our advice to patients and their families and to inform their decisions along the course of an acute illness.
Which brings me back to the question with which I began this essay: can we save money and precious resources with such tools? Suppose we could predict the likelihood of survival within 5 percentage points of confidence? Suppose we could tell the family, “Grandma has a 20% chance of surviving this hip fracture, pneumonia and sepsis and a 7% chance of returning to a normal existence”. Would there be less futile care? I’m not so sure. There are so many ethical, cultural and economic factors involved. At my hospital, I am accustomed to seeing rooms occupied by an extended family keeping vigil over a clearly moribund loved one and upon leaving the room I am assailed by the relatives: “Doctor, isn’t there anything more you can do??”. Families cling to hope and reject any suggestion of “comfort measures only”. They even have paralyzing disputes over these issues.
So unless we are prepared to exert some control, i.e. dare I say it, “rationing”, it will take more than good prognostication to provide rational, efficient, safe, sane and humane allocation of scarce human and monetary resources. The furor over the imaginary “death panels” concocted by reactionary Republicans illustrates the political problems inherent in such efforts. Maybe it’s time we change the terms of discourse and start talking about “life panels”. My wife says wants to know how she can join one; she has a few acquaintances she might want to weigh in on the deliberations. I never cease to marvel at her resourceful talent for devising ways to save money!
David M. Sack, MD, is a Fellow of the American College of Physicians. He attended Harvard and Johns Hopkins Medical School. He completed his residency at Lenox Hill Hospital in New York City and a gastroenterology fellowship at Beth Israel-Deaconess, which he completed in 1983. Since then he has practiced general gastroenterology at a small community hospital in Connecticut.