Bill Keller has an insightful piece on end of life care in England v. the USA, using the example of the recent death of his father in law. First, let me say that it is brave for a family to share such a personal story, and I want express condolences to the family.
A few policy thoughts on Keller’s piece:
- I agree with his notion that focusing on end of life care with the expressed purpose of saving money is likely to prove not only politically difficult, but it is hard for such efforts to work. That is because the “last year of life” is an inherently retrospective concept, and you don’t know when the last year started, until it ends. This makes it very hard to know when to shift into “cost saving” mode.
- One interesting note is that the proportion of total spending using the “last year of life” metric in the NHS is quite similar to that in the U.S. The tremendous difference is in the level of spending (on the order of $2 for $1 per capita) between the two nations.
- The citation Keller uses from Zeke Emanuel on limited cost savings of hospice is from 1994 and there is more recent work that does demonstrate that hospice reduces Medicare expenditures as compared to similar non-hospice users that has been published in the past several years (sorting out selection bias is a tremendous methodological challenge in this literature, meaning those choosing hospice differ from those who don’t in ways the impact health spending). One of the papers that sorted this out is my paper with colleagues from Duke. There are others.* I reviewed a new paper two weeks ago for a top journal that actually confirms and extends the findings from my paper (while including a richer set of matching variables). So, hospice remains just about the only thing of which I know that holds out the hope of reducing costs while improving quality of life (typically we are left to assess whether something with a marginal benefit at greatly increased cost “is worth it.”
- A reality is that the hospice benefit was “sold” in 1982 as a means of cost savings when it was added to the Medicare program. A recent paper of mine on some of this history.
- Medicare hospice policy greatly needs to be updated. The insanity of “death panels” and our inability to talk reasonably about something that will happen to each of us (death) greatly hinders good policy. My book frames this inability to face limits as a key source of inability to reasonably address health care costs.
- The antidote to what I have termed insanity, is to seek to ask three basic questions about all care, regardless of our belief about someone’s prognosis: does it improve quality of life? does it extend life? how much does it cost? These questions need to become part of our broad cultural dialogue about health care, as well as explicit parts of evidence based policy making.
For example, see:*Pyenson B, Connor S, Fitch K, Kinzbrunner B. Medicare cost in a matched hospice and non-hospice cohorts. Journal of Pain and Symptom Management 2004;28(3):200-12.
Shugarman L, Campbell D, Bird C, Gabel J, Louis T, Lynn J. Differences in Medicare expenditures during the last 3 years of life. Journal of General Internal Medicine 2004;19:127-35.
cross posted in freeforall
6 thoughts on “Bill Keller on End of Life Care”
In my limited experience, with my father and my in-laws, the biggest impediment to rational end of life decision making is not knowing or being able to accept when a person’s situation has become “terminal” and not amenable to stabilizing improvement. When a doctor is UNABLE to make that determination, then the failure is understandable — we err on the side of trying to make improvement if there is a chance we can. When doctors, family members, or others are UNWILLING to accept or acknowledge that the evidence is indisputable, that’s when you have these horrible situations where someone dies in great pain after innumerable pointless procedures.
In some cases it’s pretty easy to know when your time is up (my father had inoperable pancreatic cancer, probably one of the closest things there is to an definitive death sentence) and my in laws just kind of drifted away without anything being “wrong” with them. I can’t tell you what a relief it is to know that they all died at home, about as peacefully as human nature and modern medicine permit.
My dear wife has been a hospice patient care manager for a number of years and she’s told me of many of her patients whose quality of life improved markedly once they abandoned the aggressive treatments & started the pain medications. She’s even had a few who actually got better & were able to leave hospice as well as more than a few who outlived the doctor’s expectations, some who actually got an extra year or more. Likewise had my uncle who got a second course of chemo and promptly got (and died of) ARDS instead opted for hospice, he would have had at least 6 months or more longer to say his goodbyes & make whatever amends he needed to. Instead his last 6 weeks were spent as a vegetable in the ICU. Hospice may not be for everyone & I certainly don’t think it should be mandatory let alone considered solely as a ‘cost-saving option’, but I have learned it’s a kinder, more merciful approach to the inevitable death which will eventually come to us all. If/when I have to choose between chemo & hospice (I’m 56) my choice will be hospice.
Here is a post/paper on discharge alive from hospice…some of it is due to changing prognosis (all of such discharges is not). http://donaldhtaylorjr.wordpress.com/2012/06/05/discharge-from-hospice-alive/
It’s good to see that Don’s research confirms the intuition that hospice care is less expensive than conventional care at the end of life. As he says, that’s not why we should support it. But it certainly weakens any argument against.
IMHO, Cicely Saunders is a Christian saint, though her church has no mechanism for making this official, and her Jewish inspiration David Tasma, Holocaust survivor and cancer sufferer, a true hero.
As a hospice nurse of the past five years (who also happens to be a cancer survivor and 67 years old), I can confirm the truth of the article and comments. May I suggest Ira Byock’s book, “The Best Care Possible” (Avery/Penguin 2012) for a slightly different angle of viewing hospice care and one that I think is more ‘sell-able’. I do admissions for my particular organization and have heard “we don’t want to give up hope” more times than I can count (and nearly always in pretty hopeless situations). It’s hard not to say “Of what? Living on earth forever?” Until we can get past the (seemingly) American obsession with magic answers and a pill for everything, we will continue to flush good money on less and less effective (and more awful) treatments for no good reason.
I am concerned that this could threaten to torpedo effective hospice care when it still represents quite possible the best single ‘bargain’ in health care today.
From my own anecdata, I have to think that part of the trick for saner end-of-life care is taking a broader view of “what does it cost?” — when people are sick and/or dying, they and their families are typically not so interested in dollar costs, but very interested in all the other ways that illness exacts a price. The pain, the upheaval, the suspension of ordinary living, the putting-off of those things that actually need to be done. Whatever aid the medical community can give in helping patients (who if mentally present are often far more ready to let go) and their families in working through some of the larger issues will definitely percolate down to the smaller one of mere money.
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