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.
Sick of the men updates? I am at this website to meet your requirements!
Here’s a link I just came across this morning…
“How Doctors Die
It’s Not Like the Rest of Us, But It Should Be
“Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.”
“Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.”
Thanks for a thought-provoking piece. More talking is necessary on both sides – patients and families as well as people in healthcare (physicians AND other clinicians who often have the ear of patients who sometimes don’t want to sound “stupid” when talking to their physicians). Death is a difficult subject, but people should think about what they want to go through when they go through experiences with their family members and friends. I often say, “I’m against torturing old people” but I don’t try to impose my values on others. I just hate to see someone suffer when the outcome isn’t likely to be good, but in the midst of the decision-making, it’s hard to be rational. I’d hate to have these decisions go to healthcare systems entirely – I’m hoping consumers start being realistic and start understanding the limitations of their own bodies.
Your mention of Grassley reminds me of the hours I spent watching C-SPAN’s coverage of the Senate committee meetings and discussions which included him and Max Baucus. It became absolutely clear as they progressed that both of these guys were among the best-informed people in the country about the need for and details of the legislation being crafted at the time. My enduring memory is that after they had gone to the trouble to learn as much as they did they were clearly constrained from doing the right thing because of behind the scenes pressure coming, I’m sure, from the insurance industry, Big Pharma and device makers as well as an array of others for whom the new law would cut into various revenue streams. It sickened me to watch as both of these men nearly choked as they said things and took positions they absolutely knew were counterproductive to better care at more reasonable costs. Not exactly the same as prisoner testimonies at the point of a gun but similar.
LTACs have a way of minig every last penny from patients’ insurance accounts. Grassley made inquiry of how the patients are all discharged in 30 days but never published the response.
These companies have positions of “thought leadership” with the Feds and have Obama’s ear.
This is a fraud worth investigating. They are selling hope when none exists and pay the doctors to maintain this charade.
“Without these cultural changes and strong leadership from our healthcare system, then expansive end-of-life costs, futile and inappropriate care are destined to continue.”
The key phrase here is “cultural changes” on the part of patients and families as well as physicians and hospital managements. How do we as a society make that happen?
Matthew’s post last week linking “One Slide” is a beginning but that cultural change comment is exactly right. I mentioned it to my PCP during my last routine visit and he said discussion advance directives with patients as a regular exercise seems to be a waste of time. The overwhelming majority fall into one of two camps — “I don’t want to talk about that” or “I’ve already taken care of that.” Rarely, he said, someone might say “Yeah. That’s a good idea. i need to think about that…” For him unsolicited discussions of advance directives was a wasted exercise. And even in my post-retirement job as a senior caregiver many of the very people who should be a target audience, especially the family of those in assisted living or long-term care, are not particularly receptive.
I wish I had a constructive suggestion, but I don’t. I think it will take a string of coordinated high-profile cases, heavily publicized, coupled with plenty of editorial and other media coverage, to force the issue into the public consciousness.
Change happened with smoking. It happened with racism (or recalibrated the hostility toward immigrants instead). It’s pretend-happening with exercise (fighting obesity) and “organic/natural” food and drinks, although marketing is more the aim than the actual benefits. And it happened with shacking up replacing marriage and serial divorce being part of the landscape. Surely it won’t take too much to affect an increased social awareness of end-of-life issues.
I think your experience with the primary caer doc is exactly indicative of the problem. Rather than ask the patient about the esoteric concept of “advanced directives” and bail on the conversation when lack of interest is encountered, the appropriate conversation might go something like:
Mr. xxxx, I am glad you are doing well, today we will give you your flu shot and refill your blood pressure medications. It is important that we talk about your plans and wishes for when the time comes to decide on how you want to experience your last days. I know and hope this is a long way away, but the last thing I would want for you and your family is to suffer unnecessarily or lose your dignity. Please take some time to discuss this. I promise to help guide you through any difficult decisions that might arise and will adhere to your wishes. Lets talk about this again at your next visit..
Note though, that planning for the end of life is at times different from extending life unnecessarily. Everyone should have a terminal ‘plan’ in place, it is up to the physicians to help guide the decisions that are in the best interest of our patients, as many times they can’t do so.
There seems to be a general societal expectation that as we wander in to the twilight of our days, someone will ‘continue to look’ into Dr. Sack’s “last places” meant to extend life.
Without doubt this expectation has been promulgated by our healthcare system aka physicians, who have been lax in providing the understanding that we all die from something and that palliation is indeed a true treatment, not a refusal of survival.
First, if care is truly ‘futile’, then there is no inherent obligation to provide it. I don’t view this as rationing, or cruel or anything more than preventing false hope at tremendous expense. How one defines futile is the rub here.
Second, statistical decision making when dealing with human life at the end is inherently flawed to an extent, noting that the only certainty is death. Decisions need to be made by pre-informed individuals and families, in conjunction with providers who are honest about the realities of treatment options. My career as a vascular surgeon is chock-full of hind-sight saves such as the 88y/o ruptured aneurysm patient who returned to independent living after 2 months. Note however, that the majority of such patients do not do so, and therefore I take responsibility as the steward for these families and patients who usually realize that the alternative of a comfortable bed with pain control and one’s loved-ones surrounding them is the most humane and appropriate treatment–this is not rationing.
Without these cultural changes and strong leadership from our healthcare system, then expansive end-of-life costs, futile and inappropriate care are destined to continue.
Thoroughly enjoyed reading this piece and can relate on many levels. I am a general surgeon in private practice and am faced with decisions about operating on ill, elderly patients every week. Many of these decisions are predicated by the fact that if I don’t operate, the patient will most likely die or if I do, I am just prolonging the inevitable at an emotional cost to the family and a financial cost to society.
These are not easy to decisions to make on many levels, but someone has to make them. I understand I, as the surgeon, have an enormous amount of influence on the family members who make these decisions, an influence that cannot be taken lightly.
All I can say is, that over 20 years of decisions ending in life or death, there is no (and never will be) a standard decision tree “practice guideline” to refer to when dealing with patients. To this day I still remember every critically ill, elderly patient I have taken to the operating room, with pure intentions to help, who never left the hospital. I am a surgeon, trained to operate on patients. It is who I am, what I do, and how I make a living. Yet, I believe there are times when my scalpel must not be taken out of its case, times when family and surgeon allow nature to take its course.
“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.”
It’s these “miracle” stories everyone clings to when making their own decisions – I don’t think the stats bear this out. What if mom just wanted to say 85 years was enough and opted for a peaceful death after a full life, would that have been an OK decision? What if she only sees one more year of life?
“Was it worth the cost?”
It was not your or your mother’s cost – it was the taxpayer’s. Would it have been worth it if you had to pay the cost?
“Six months later she is now living in a one-bedroom apartment at a wonderful assisted-living community nearby.”
What if her resources had been exhausted paying for life to where she could not afford a wonderful assisted-living community but only a medicaid underfunded ward where she had to lie in her own feces and urine for too long?
According to a senior physician executive at UnitedHealth Group, about five years ago the oath doctors take was updated to include the wise stewardship of society’s limited resources. Moreover, in a recent program on end of life care aired by Religion and Ethics News Weekly, one medical ethics expert opined that he thought it was immoral and unethical for a patient or family to demand expensive and often futile care when the prognosis ranges from extremely dire to hopeless. It would also be interesting to compare what standard medical practice would call for in Western Europe and Canada under similar circumstances.
It sounds as though the patient in this post did not have a living will or advance directive. If she had either, the course of treatment may have been different and far less expensive though she probably would have died at 85, still comfortably beyond a normal lifespan. I also wonder how patient and family medical choices might change if CMS had both the right and the obligation to make a financial claim against the patient’s estate to the extent that cumulative spending exceeded some reasonable post age 65 lifetime limit.
Difficult questions are raised by this beautifully written report. If your mother had metastatic breast cancer, I think that your decision would have been differenct, and perhaps, she would have had advanced directives.
As it was, she had a treatable disease and you made the correct decision.
It is interesting that a group calling itself the Wasatch Institure Think Tank presented a White Paper to then Senator Bob Dole and House Speaker Newt Gingrich on this very issue, futile care, aka prolonging the dying process.
It concluded that as a condition for receiving Federal health isurance, the individual must have advanced directives. These could indicate that everything should be done; or that no aggressive measures be taken to prolong the dying process. Of course, fanilies could ignore them, but on balance, this potentially offers the dignity of self determination and probably will conserve resources.
No panels are needed. Just thoughtful compassionate physicians working in concert with families.
The proposal that all medicare beneficiaries complete an advance directive is a clear headed approach to a tough problem. If we only do one thing in the next few years to address health care budgets, this might be the most important one.
For every “success” story you see or read, the next 5-6 do not have happy endings, and yet we as physicians have to proceed like the next story will have the 15% likelihood warm feeling. I have said here before and now, why are we pushing the envelope to live past 75 years old like the resources and supports will be infinite? Life is unfair, people who have access to treatments and life way beyond their biological abilities are not in the average American lifestyle, they are privileged or have contacts to gain advantages. And yet, why is it often the privileged and entitled are the biggest bitches and manipulators to keep demanding more?
Personally, if there is a heaven and hell, boy do I hope the selfish, narcissistic, and downright antisocial elements that control societies like ours are tied down to beds and on eternal life support elements for their private hells after death. Now there is irony and justice.
85 year old people having surgery of this magnitude to live another few years? Did the writer of this post spend any money contributing to his mother’s care? If he did, then good for him for having a conscience and literally paying his fair share. If not, then should you find out some 10 year old who could not access some similar life saving surgery because this finite expense was denied for this 85 year old’s brief further tenure on the planet, can you live with yourself learning this knowledge?
Do people really get it these days? No, they don’t!
My point exactly… If we are going to ration a scarce resource (and healthcare is just that!), we need to say, in the same way as we would tell someone who wants a Ferrari instead of a Fiat, “you must make up the difference yourself”…
Precisely. While the author starts out attempt to debunk the myth that over 50% of healthcare dollars are spent of end-of-life care, he never actually does the debunking. In fact, the data is pretty clear now that between end-of-life care and money towards Medicare Plan D and dealing with post-65 year old catastrophic care, somewhere around 80% of our healthcare spending is going to the older or very old. Of course, that is when people tend to have more medical needs, but when you have no good preventive care system in this country, and when lower-middle class, working poor, and the underclass have very little healthcare, and it is far cheaper to treat the prevention or early stages of illness — we are going to have to seriously consider rationing for later stages of life. Like others have said, if you want to save grandma at 85 with extraordinary measures, you foot the bill, brother. Otherwise, let’s send that money to the 11 year old who has cavities that may turn into severe infections and kill him (which has happened too often).