President Carter died yesterday. He had entered hospice in February 2023. Hospice, according to Medicare, is supposed to be a fairly short-ish term benefit at the end of life:
You qualify for hospice care if you have Medicare Part A (Hospital Insurance) and meet all of these conditions:
- Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).
- You accept comfort care (palliative care) instead of care to cure your illness.
- You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
If you qualify, you can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods. You have the right to change your hospice provider once during each benefit period.
I do not know what health insurance a former president gets… I don’t know if they are on Medicare or something else. But let’s assume that everyone involved in the end of life journey for President Carter and his wife were acting with competence and in good faith.
If he had Medicare, he would have gone through 11 benefit periods (2 90 day periods and 9 60 day extensions). He was a massive outlier for hospice care.
This outlier status highlights a problem with a common cocktail party “analysis” that we spend too much as a society in the last 30 or 90 days of life. Those analysis have as their identification strategy a look at the death certificates of a target population and then a retrospective analysis of how much was spent on this cohort of people that we know are dead.
There is a big problem here!
At the time treatment is initiated, we as a society don’t know who is going to be dead in 30 days. Prospective prediction is HARD!
Dr. Amy Finkelstein and colleagues had a great paper at SCIENCE a few years ago with a good write up in WBUR:
Only 5 percent of people on Medicare die each year. But those who die account for a quarter of all health care spending [on seniors], and this fact […] is often talked about in the media and policy circles as evidence of waste in the U.S. health care system: “Look, we spend all this money on health care for people who die.” What a waste, right? Why are we spending money on all these people who die?
Implicit in this is the idea that, at the time we’re spending the money, we know that they’re likely to die….
In fact, we find there is very little Medicare spending on people with high probability of dying. And part of that is just that it’s very, very hard to predict who is going to die.For example, if you take all the Medicare patients at the start of the year in the highest percentile of risk — the top 1 percent chance of dying in that year — their annual mortality rate is still only 46 percent…
Even among people admitted to the hospital who then die within one year, we still find it’s very, very hard to find a lot of people who have a very high probability of death. For example, of the people who are admitted to the hospital who then die within one year, only about 40 percent of them have a mortality probability above 50 percent.
Put another way, it’s just very hard to find a substantial share of people for whom we have very high certainty that they’re going to die within the year.
Think about people who arrive in the hospital with metastatic cancer. That’s a very sick population; that’s a very grave diagnosis. Even so, their one year annual mortality is only about two thirds, or 63 percent.
There is tremendous value in palliative care and hospice for the patient and for their family and caregivers. Perfect palliative care and hospice services would likely be a very good thing but we should not expect these services to be great at saving money because we just don’t know what people are going to die with any degree of accuracy.
Redshift
This is very true. My father-in-law’s quality of life was so much better once he was in hospice, and he probably would have been better off if he had been in it for the last several years of his life. (He was in it for more than six months, but I don’t remember if it was renewed once or twice.) A big part of that was routinely getting pain medication instead of having to ask for it — he was a WWII marine and would never admit to more than hurting a little.
the pollyanna from hell
Survivors who benefit from hospice spending include family of those who die. I know that I remain grateful for the support we received as my father was passing.
rusty
These are really good points. My parents, my father-in-law and my mother-in-law all had close calls where we were prepared for the worst but they pulled through. My mother-in-law did eventually pass away with severe dementia, but the family had already decided to decline expensive life extending care at least 6 months prior because it was clear that it would make no meaningful impact on her quality of life. Last January my father, in his late 80’s, with substantial pulmonary issues, heart disease and more, got RSV, went to the ER and ended up on a ventilator. The ICU basically told me to come immediately (a 7 hour drive) so I could hopefully arrive in time to say goodbye. He celebrated Christmas with us last week. We are both tougher and weaker than anyone can predict.
wenchacha
I think my dad got about a half-day of hospice care at his nursing home. Probably a week earlier, he stated that he wanted to go, and stopped eating. I know my sister tried to learn about palliative care, and it seemed as if the answers were unclear about who would be eligible.
He received good care at the nursing home, and was there for about a month. The day he died, there was a big storm, and the hospice nurse was delayed in arriving to the home, which was distressing to us family members who stayed with him.
She administered some drops in his mouth, and a few minutes after, he was gone.
I don’t think she killed him. And I know he was ready to go. But I do wish we had been able to have more clarity about his care in his final days.
I have seen similar stories with other aging relatives, where hospice care began somewhere in the last week of a patient’s life.
stinger
Excellent post AND comments.
jame
I was trying to find accurate information regarding presidential medical benefits and came upon this:
Health Benefits
No statutes explicitly govern the payment of health benefits for former Presidents. Generally,
however, former federal employees must be enrolled in the Federal Employees Health Benefits
program for five years to qualify for health benefits.
55 GSA, historically, has interpreted similar
service requirements for a former President to qualify as a federal annuitant.
56
Presidential terms are four years. Jimmy Carter served a single presidential term, and, therefore,
does not qualify for federally funded health benefits. Although George H. W. Bush served only
one term as President, he is entitled to federal health benefits because of his extensive federal
service in other positions, including Member of Congress, Director of Central Intelligence,
Ambassador to the United Nations, and Vice President. While former President George H. W.
Bush is eligible for federal health benefits, he opts not to receive them.57 Since former President
Clinton served two presidential terms and receives a monthly pension, GSA’s position is that he
qualifies for federal health benefits. George W. Bush is eligible for and receives federal health
benefits.
Barbara
There are pockets of utilization that one can point to, but it’s probably not going to save all that much for the reasons you discussed. Just for instance, when my father was dying from pancreatic cancer, he did not sign a DNR or any similar document, such that if he was admitted to a hospital, it might have engaged in a lot of expensive lifesaving techniques that wouldn’t have done much except run up the bill. When it became clear that he was going to die shortly, the visiting nurse warned my mother about this, so my mother just never called an ambulance. A lot of people might not have the education, skills, and courage my mother did to sit with my father alone as he died. My father did not have Medicare so did not have the Medicare hospice benefit.
Just my observation, I believe that the Medicare hospice benefit is probably outmoded, and based on an earlier understanding of end of life care as being an all or nothing proposition. It tended to be used for terminal cancer diagnoses, but now includes people with no real diagnosis — like my father in law and evidently like Jimmy Carter — who were just getting to the end of their natural life. The length of this “natural” decline is far harder to predict than terminal cancer.
sab
We only got hospice for my mother a couple of days before she died at home. I very much wish we had gotten it weeks or months earlier. She was tiny at the end, but all the equipment they brought in would have made things so much easier for everyone.
We had hospice for almost two years before my dad died in a nursing home. They saw him declining well before we could recognize it, and they made his lasts months very much easier. I cannot say the same for the nursing home.
oldster
David —
fantastic post, because it really changes my mind. I’m one of the people who would have said, “why are we spending all this money on people who are obviously about to die?”
But the study you cite strongly suggests that almost no one is * obviously * about to die. Our best guesses are still really bad.
That is news to me! And it changes the picture about so-called “end of life” expenditures. Because it turns out that we almost never know which ones are end of life.
TONYG
My mother was in hospice care (in her nursing home, not at a hospice facility) for about two years before she died at age 91. I suspect that this decision might have saved “the system” money, because during those two years she was not undergoing expensive procedures that would not have helped her much anyway — but the money was not the point. The point was that by being in hospice care she was not subjected to the stress and discomfort of those procedures. Debating about the “cost of end-of-life care” is not, in my opinion, the correct emphasis. “We” (once you average in the multi-billionaires) are a wealthy society. “We” can afford a system that allows people at the end of life to have some comfort and dignity. Fuck Elon and his “DOGE” if he tries to deprive us of that.
Phylllis
@oldster: A wonderful book that will also help with this perspective is Art Buchwald’s Too Soon to Say Goodbye. He declined dialysis and chose to enter hospice, where he thrived, for lack of a better word, for months longer than his original prognosis. Funny and touching.
TONYG
@oldster: Yes. Of course, Germany from 1933 through 1945 had a cost-effective way of processing Useless Eaters. A bullet at the base of the skull was quick and efficient.
dnfree
I may be an outlier here, because so many people I know praise hospice care, and as a couple of people noted above, wish they had obtained it sooner than a couple of days or even hours before their family member’s death.
When Medicare started covering hospice, it had good and bad results. Hospices now (as I understand it) get something like $150 a day for each patient in their care, WHETHER OR NOT they see the person every day. This has resulted in for-profit hospice companies registering people before they need it, and not attending people as they approach death.
My father had dementia and an order for no food by mouth, and his hospice care was through the Visiting Nurses Association, through a local hospital. Our experience was awful, beginning to end. They started off coming a couple of times a week, even though with no food intake his demise was likely to be soon. They sent different people nearly every visit, and the person would tell us they really couldn’t project how he was doing, because they hadn’t seen him before. They came at erratic times, so we couldn’t easily arrange to meet them, and they were hard to reach after visits. They didn’t seem to do much while they were there but check on him, though my dad found their visits comforting.
The day before my dad died they finally assessed that he was nearing death and said they would start coming every other day. We knew many people who said their hospice worker had been quite accurate at predicting death, so we believed them that it was not imminent. He died that night, alone, none of the family there. Total time they spent with him over about two weeks was no more than a few hours. But they got paid as if they had rendered more assistance than they did.
Another Scott
Thanks for this. I mentioned downstairs that my FIL had a pulmonologist who didn’t understand the difference between life expectancy at birth and life expectancy at year X. It was very annoying. :-/
But aren’t the stats about spending $X bazzillion dollars in the last Y days of life, and hospice, apples and oranges? Isn’t hospice relatively cheap compared to treatment like surgery, radiation, chemo, and all that goes with it?
My step mom had cancer of the bile duct that seemed to be fairly common in her family. She had the aggressive surgery to try to catch it in time, but fairly quickly succumbed to it. I’m sure her cancer treatment was much more expensive than the few weeks she was in hospice.
Hospice is a great thing. More people should be able to take advantage of it.
Thanks.
Best wishes,
Scott.
Matt McIrvin
My grandmother, dying of esophageal cancer in her late 90s, got hospice care for just a few days and it was a great choice. I’m happy that at the end she was lucid enough to make her own care decisions.
rekoob
Both of my parents had brief hospice experiences at the ends of their lives. My father died on Holy Saturday of 2015, and he was at home with all of us and a hospice nurse in attendance. My mother died in August of 2020, in the midst of COVID, with hospice coming to her hospital room. Once again, we had time to be with her in her final moments. We told her that Biden was likely to win Virginia, and while we’d like her to stick around for the election and beyond, we’d understand if she decided otherwise. Peaceful and helpful in both cases.
Barbara
@Another Scott: I think you are missing the point. The question isn’t about the expense of hospice care — it’s not expensive — the question for people like your step-mom is how soon they are prompted to elect hospice and forgo other types of potentially available treatment. I had a colleague who lived for nearly three years after being diagnosed with pancreatic cancer. It would have been crazy for him to forgo treatment, including surgery that gave him a much longer than average life span, even after such a normally dire diagnosis. But my father lived for only four months, which is much closer to normal. His treatment was only palliative, including the chemotherapy. Every cancer has this spectrum, although pancreatic cancer is usually on the short end. But even with an unquestionably dire diagnosis, not everyone is willing to accept that they have reached the end of the line if there is anything out there that might work.
At any rate, saving money in medical care is never going to depend on persuading people to give up at the end of life — many people will look at you in disbelief and ask why we spend so much on these high wire act treatments if we are going to deny them to the people who need them the most.
Another Scott
@Barbara: Ok, I did seem to miss the point.
But it seems to be yet another example of trying to find ways to tinker with the system as it exists – trying to figure out when it’s time to start palliative care with some certainty, rather than addressing the real issue – why medical care is so expensive in the USA. Expensive care will never be 100% successful, so some fraction of people are going to die some short period after expensive care. I cannot conceive of a situation where some large fraction of the national cost will be near the end of life will not be the case.
Yes, 218, 51(60), 5, 1 still holds and that’s the real reason why tinkering is the best we can hope for for the near future.
Thanks. I appreciate it.
Best wishes,
Scott.
Barbara
@Another Scott: I am on the same page. The grotesquely excessive prices that Americans pay for medical care is not something that is amenable to technocratic solutions.
Jeffg166
I want to option to do myself in when my lungs really start to go. My state rep is going to introduce a death with dignity bill once again in Pennsylvania. It’s been proposed every year for the last 17 years.
Barbara
@Jeffg166: Mostly I support self-help at the end of life in the manner you suggest, but as with other end of life options that depend on people voluntarily choosing to forgo care, this is never going to be the norm. The imperative to keep living is just too strong.
Albatrossity
At its heart, this is a very dumb question. Everybody, including everybody on Medicare, is going to die…
hells littlest angel
I wonder how many times that hospice had a complete turnover of other residents while Carter was there.
Jeffg166
@Barbara:
A lot of people would be very happy to not have to go through weeks or months of feeling awful.
I have an insurance policy for home care. The care coordinator I have at the company has told me a lot of people she deals with want to know if it is available.
When this subject is brought up its abuse is instantly talked about. No one is going to be forced by anyone to do themselves in. There is a procedure that is followed.
narya
Partly thanks to the folks here, partly because I saw what caring for my dad was doing to my mom, I (at my mom’s request) talked to the hospice people, then to her, and she then called them herself. We got dad enrolled in October 2023. He had decided months prior that he didn’t want any more treatment for his bladder cancer (he’d gone through various things for 20 years, obviously pretty successfully, but was DONE with it), and by October I think it was starting to grow. He was sometimes in pain, and was losing his dignity, and it was all a terrible strain on my mom. He died in March, so about 4.5 months total in hospice, and the whole experience was such a relief for everyone. Even when he died–we called hospice, and they came and pronounced him dead, which means we didn’t have to involve the coroner or cops or whatever. He was only bedridden for a week or less, but even that part went more smoothly, because the hospice people got a hospital bed in place before he needed it. But back to the original point: we had a pretty good idea that the end was coming sooner rather than later, not least because the pain was increasing, and having that care available, and being able to increase the frequency of the visits, was really great. And! He was spared interventions he didn’t want, and the system was spared the expense of those interventions.
dnfree, I’m sorry your experience was so awful!
StringOnAStick
One of the great things about living in Oregon is our assisted suicide law. Another is that abortion rights are in the state constitution. I’m not sure if the former is, but it’s been the law here for many years. What I’ve read is a number of people request it, but in the end let nature take its course; they felt better about what they we’re facing just by knowing they had an option to exit if it became too painful.
Another thing not discussed enough is that in real life, it is much, much harder to predict how much time a person has left, as opposed to the absolute numerical predictions we see in TV dramas. Sometimes the general “30 days” is true, my BIL was given that number and died in day 31 (his form of cancer has a zero cure rate). My FIL lasted a couple months longer than predicted, but once he lost interest in eating, after months of a totally out of character fading appetite, a few weeks was accurate.
I know that nursing home care providers keep a very close eye on appetite and food consumption, because that’s a reliable indication of where someone is in their end of life journey. It’s certainly not the only thing to look for, and that’s one of many reasons why end of life prediction is so hard; there isn’t going to be a perfect decision tree, and much as the bean counters would like that.
Barbara
@hells littlest angel: Almost all hospice is hospice at home. It’s one reason that hospice care has been able to expand. If it required bricks and mortar facilities its use would be much more limited.
TBone
JFC I’m so sorry.
Palliative care is supposed to alleviate unnecessary suffering for family as well as patient, not promote it.
@dnfree:
TBone
@Barbara: my dad died at a facility in Center City Philadelphia with a floor dedicated solely to hospice end of life care. If he hadn’t had that inpatient care, I would have had to be 302d. There was a team, but the same team members cared for him at the same times each day so we knew what to expect. There were beds provided in-room so family could spend however long with their loved ones they wanted. I spent the better part of a week.
https://www.pennmedicine.org/practices/palliative-care-inpatient-ppmc#
At home with the rest of my family in complete denial was a complete shitshow
Barbara
@TBone: There are hospice facilities, I know, but the average patient is never admitted to an on-site hospice. That used to be the norm. “At home” hospice has been the norm for decades, and amazingly, one of the reasons it became possible was the introduction of oral opioids, yes, Oxycodone. Basically, the palliative care movement really started in the UK and the company that produced Oxycontin was doing so explicitly to provide an alternative to IV pain relief that could only really be administered by health care professionals.
@dnfree: By structuring the benefit as it has, Medicare allows hospice providers to take advantage of reimbursement rules that do not always serve a beneficiary’s best interest. As I often say, never underestimate the power of reimbursement arbitrage to drive someone’s business model. And it’s true, there are doctors who recommend hospice care as part of schemes involving hospice providers (not always for-profit).
rikyrah
I promised my mother I would never put her in a home. And, I didn’t. She stayed in our home until 3 weeks before she died. I don’t think longer hospice would have done anything better. It was never called hospice. I don’t even know if it was formal hospice.
Hard choices.
featheredsprite
Recipient of hospice care here.
My hospice workers have done a good job of being advocates for me and I am receiving better care because of it. About 3 or 4 times a week a worker checks on me, I am getting the good meds, and they supply the “stuff” that I need.
TBone
@featheredsprite: gentle kisses on your forehead