This 2017 Health Affairs article has a fairly common cocktail party factoid as part of its frame that it is writing against:
end-of-life medical spending is often viewed as a major component of aggregate medical expenditure, accurate measures of this type of medical spending are scarce. We used detailed health care data for the period 2009–11 from Denmark, England, France, Germany, Japan, the Netherlands, Taiwan, the United States, and the Canadian province of Quebec to measure the composition and magnitude of medical spending in the three years before death. In all nine countries, medical spending at the end of life was high relative to spending at other ages. Spending during the last twelve months of life made up a modest share of aggregate spending, ranging from 8.5 percent in the United States to 11.2 percent in Taiwan…
One of my good friends and colleagues is the lead author on a palliative care/end of life evaluation methods paper that we’re submitting this week. We’re writing about a palliative care program that enrolled participants who were very ill and we had challenges in performing a reasonable evaluation. One of the many things that we talked about over the past couple of years with this program is the problematic framing of palliative care as a cost saver in the last X days of life. There can be palliative treatments that are good, that are valuable and that don’t save money. We have no problem paying for attempts to use curative treatments that are good, effective and not cost-saving. We don’t apply that same threshold to palliative payment policy.
Let’s go on a quick little thought experiment about why the factoid that we spend a lot in the last X days of life is problematic. We are picking on the dependent variable and only seeing deaths instead of extended lives.
Let us pretend that there are 10 people. They currently have a disease with a 99.9% fatality rate within the next six months. We can predict that these folks will have $20,000 in medical claims between now and death on average. A year from now we will say that the last six months of life that group had an average medical expense of $20,000 and think about how to compress spending variation.
Now let’s spin out a counter-factual. There is some awesome innovation ( a drug, a surgery, a miracle worker etc ) that costs $200,000 per patient and has well defined outcomes. 9 of the patients who receive the treatment will be cured and live another 20.5 years at the same level of health and capacity as the patients had at age 25. 1 patient will die a week after receiving the treatment. We don’t know who will fall into each group before the treatment.
From the perspective of end of life costs, this new innovation spikes costs tremendously. The dead people are now costing $200,000 in the last portion of life instead of $20,000. From the point of view of population health, this is amazing news. An average of 18 years of life per person had been bought at $11,100 per year of life. Under any cost effectiveness threshold, that is dirt cheap and high value. However since we were picking on the dependent variable of death we miss this huge gain in value.
So when you hear the cocktail party factoid of “we spend too much near death” be aware of the assumptions that aren’t being stated.
Cervantes
Keep in mind as well that in many if not most cases, it is not possible to confidently predict life expectancy even near the end, certainly not within one year of death. Many people enter hospice care and outlive the six month expectancy requirement. You can’t withhold potentially effective care because some doctor essentially guesses that you have less than a year to live. And, as you say, there are interventions that greatly extend life for a fairly small percentage of people. Most people would find it unethical to withhold them. There is also the psychological truth that for many people with a short life expectancy, a few extra months is very valuable to them and their families — chance to see a wedding or an anniversary, chance to do some unfinished business, chance to see Ronald Dump defeated in November. . . This is not a problem with an obvious solution, if it is a problem at all.
Redshift
I feel like most of what I have read on this subject says (explicitly or not) that we have increased end-of-life spending that may extend life but doesn’t provide much quality of life. It would be interesting to know how true that is. It seems like a more difficult question than the hypothetical cure.
Having had both in-laws die in the past year, I’ve had a lot of feelings about spending a lot to just exist for a couple of extra years, and that we need better choices, but I suspect I may think differently when the shoe is on the other foot.
Cervantes
@Redshift: Sometimes it’s true, but that applies to the very sickest people and we’re usually talking about a fairly short life extension in those cases. We could do better about talking with people who unequivocally are dying and their families, to be sure. Actually, a lot of spending in that situation is palliative — trying to ameliorate QOL rather than extend life.
That situation accounts for a small share of all spending in the last year of life in any case. I should also say that my mother is in a nursing home, fairly demented. She probably won’t live more than a couple of years, if that. It’s very expensive, she fell and had a hip fracture, needed orthopedic surgery and rehab, gets a lot of attention from doctors and nurses. But what can you do? Maybe when it gets to the point where she can’t recognize her kids I wouldn’t want her hospitalized for pneumonia but until then, as long as she can assert that she wants to live, she has that right it seems to me.
Citizen Alan
@Redshift:
I’m 50. My intention is to work until I’m 62 (60 if it’s doable), take early retirement, liquidate everything, bum around Europe until the money starts to run out, and then travel to Amsterdam and go out in a massive drug binge. My father died at age 82 after fifteen years of slow decline and then six weeks of misery in an ICU. I have absolutely no intention of living to that age, and especially not when my 70th birthday, if I made it that far, would be around the time that the Great Die-Off triggered by climate change will be kicking into high gear.
Cervantes
@Citizen Alan: Well, things might look different to you when you get there. I recently reviewed a paper that found that most people who signed advanced directives changed their minds, one way or another, within a year.
low-tech cyclist
Yes, this!! My MIL, who died about 2.5 years ago, is an excellent example. Until her last day of life, the doctors said her numbers were improving, and expected her to recover and get back to being ambulatory with a walker.
We spend a lot of money on sick people to help them recover. Not all of them do. Unless they can show that we spend a lot of money on people who we know aren’t going to make it, these sorts of retrospective cost analyses are bullshit.
Percysowner
@Cervantes: I’ve had my advance directives in place for 15 years and as I get closer to needing them, I’m not changing my mind. All of my friends have their advance directives in force as well.
I watched my MIL be kept alive for years after a major stroke. She couldn’t recognize her children part of the time. She didn’t know where she was. She kept getting urinary tract infections and sent to the hospital to cure them. I saw that and I know that I don’t want that for me, ever.
Ruckus
@Redshift:
My sister had cancer, went through surgery, 2 rounds of chemo, surgery again to find it had metastasized throughout her body and her choice was hospice or another massive round of chemo and dying in 40-60 days. How many sane people would choose chemo?
More than you might imagine. People stood in the hospital hallway and told me that we should commit her and force her to take the chemo. After she had made the hospice decision. I was stunned and pissed that people needed to impose their wishes on her.
jl
Thanks for a very useful and important post. This is another argument for universal care, and that society as a whole should spread health risks and health care expenditures across the whole population and across time.
Medicare for all does this. The two successful countries with mostly private health insurance also do this. The Netherlands and Switzerland act, as whole countries, like large corporations that want to self insure and choose to bear the health expenditure risks themselves. They contract private insurance companies to manage the nationally mandated minimum benefit package, and enforce nationally mandated utilization policies. In essence, the Netherlands and Switzerland hire the private insurance industry to manage nationally determined health insurance policy. People who want additional insurance can buy supplemental policies on a separate market, that is much less regulated, and insurance companies can play their profit games with health risks of their covered lives.
As the late, great, Uwe Reinhardt demonstrated in depth and repeatedly, one of the main problems with US healthcare is that we pay outrageous prices for medical services, drugs, and equipment for all care, from birth to the grave.
LongHairedWeirdo
@Redshift: There are expensive end-of-life treatments, but I’d bet the famous ones are more like ICU issues, where someone was critically injured, on a respirator, or in need of lots of care (e.g., burn victim).
Most hospice treatments aren’t all that expensive; I’d be surprised if expensive hospice care wasn’t the rare exception.The fact of the matter is, once you’re in hospice, they’re not really looking for a cure any longer, they’re just managing things; good nursing care, physical comfort, etc..
Cervantes
@Percysowner: The problem with UTIs is that they aren’t going to kill you, at least not quickly, but just make you more miserable. Pneumonia is a different matter.
LongHairedWeirdo
@Ruckus: I’ve heard it said that many oncologists, facing many cancers where they urge, urge, urge their patients to go through the full course of treatment, refuse all treatment except palliative.
Now, how true is that? I dunno. But once I heard the story, I realized I had absolutely no call to so much as make a suggestion about cancer treatment, other than the obvious ones. At that point, all I could think of was, “the people who’ve seen this the most are the ones who (sometimes) choose to avoid the whole experience – how the hell can I even *guess* what’s the right call, under those circumstances?”
Brachiator
This is a great post. Many of the claims about expensive “end of life” costs, falsely assume that someone knows that a life is coming to an end and that there is a deliberate decision to spend more, or there is some known or anticipated event that triggers additional spending. The facts don’t support this.
I’ve seen statements like this:
In advanced industrialized countries with good health care systems, the number of people living past age 65 should be expected to increase, and a good chunk of these people will be relatively healthy, but will still have increased medical costs. The number of people living past age 70 will also increase.
This is to be expected. Japan is a great current example of this. The challenge is how best to adjust the medical system to deal with this.
Ruckus
@jl: m
Except that Medicare doesn’t actually work like that. People think it does but it is not like the countries that you mentioned. The candidates that want M4A, as far as I’ve seen do not explain that realistically at all, and that’s misguided at best.
Ruckus
@LongHairedWeirdo:
Each case/person is different and depends upon so many individual issues. There isn’t a cut and dried answer to any of it. I’ve had cancer and my situation was completely different than my sister. Different cancer, different prognosis, different treatment, different outcome. She had 6 years, prognosis to end. In theory I’m not much affected physically, life expectancy wise. In actuality it’s a crap shoot, with the docs having a ringside view and an informed perspective.