Predicting death on an individual basis is hard. It is uncertain and it is a dynamically looping system. MedPac publishes an annual report on Medicare and there is a table in the Hospice chapter that shows how it is tough to predict death.
To qualify for the Medicare hospice benefit, a Medicare beneficiary needs their personal doctor and the hospice medical director to state that the believe that the individual has less than 180 days to live. This is a prospective prognosis estimate that determines eligibility. And most of the time the docs are right. But not always, and their misses are fairly frequent depending on diagnosis, care setting and a few other factors.
Most categories of the 90th percentile are misses. Neurological conditions have very long tails because the disease has a very noisy and jumpy staging. Cancer on the other hand is a well staged disease with reasonably good predictions.
There are confounding factors. Some regions of the country are suspected to use hospice as a cobbled together long term care benefit. But the quick take-away from this table is that prognosis is tough to do even when there is a hard decision that acts as a gate to a different flow of resources are on the table.
Cheryl Rofer
My mother was on and off hospice three times in her last couple of years.
Cermet
Predicting the future is hard; for some reason, it requires predictions.
RSA
Wow. Most of these distributions have long tails, I think, with the means 3 to 5 times larger than the medians.
StringOnAStick
You are so right about cancer being much more predictable because of good staging criteria. 2 years ago my BIL was given 30 days, he died on #31 but up to 3 weeks before he died he was still mowing his lawn. His was a very rare diagnosis and it behaved in unpredictable ways.
WaterGirl
You scared the shit out of me! Maybe change the title so we don’t all think that Cole got bad news about Lily?
Lee
Here is something I can provide some insight into. Part of that 90th percentile is gaming the system.
My FIL is both VA and Medicare (I think VA disqualifies him for Medicaid).
He has multiple health issues (COPD, Diabetes, on dialysis) but my wife & I joke he is going to outlive us both. He has been off & back on hospice so many times we have lost count (I think the longest stretch of on was close to 2 years). I think most of it is the assisted living facility gets more money to cover stuff if he is on hospice care.
Ohio Mom
Isn’t there some evidence that some people actually live a little longer after they go on hospice? They aren’t undergoing harsh, stressful treatments and they are comfortable. That is what I remember reading when I spent time on breast cancer discussion boards.
OzarkHillbilly
Nah, it’s a piece of cake. Every single individual here is going to die. See?
piratedan
anecdotally…
Both my mother and her 2nd husband were put into the home hospice program (many of you were here while I posted about it) … my mother had COPD and emphysema (and a side of cancer) and her husband had a very aggressive strain of Parkinson’s. After her last hospital stay, they both went into the program.
She lasted three days
He lasted 32… He suffered a fall on day 26 which appeared to be the harbinger of his last decline. sometimes I think the environment has quite a bit to do with it. Sometimes simply being home eases the anxiety because it has all of the sights and sounds of the familiar around you, pets, objects, routine. Sometimes its the opposite as now you have strangers in the house and you know something is not quite right to wrap your head around it. I think in the end its extremely personal and dependent upon the illness and the person as well as the environment and I’m not sure how the hell to quantify it into a box that is checked. I like the fact that they’re trying to find out the how and the whys, but I find it hard to tell what environment is going to have the best response because as individuals we all have our own preferences, background and bias. For all I know, some people may “give up” once they’ve “made it home”, others may do that in a clinical settings whereas others might treat it as a “hospital stay” and thus persevere to “recover”.
Mnemosyne
Even cancer is not totally predictable with staging. My father-in-law was told that he had about 6 months with his glioblastoma, but it responded so well to Avastin (and the side effects for him were tolerable) that he kept going for 2 years with good quality of life.
Psych1
Just back from pet hospital with my 17 year old sweet Turkish street rescue cat Thea. After exam & labs ($240), ultrasound ($550), chest xray ($500+) Vet says cancer, 4 to 6 months to live with the right meds. Her life is OK for now but I won’t let her suffer. Predizone & B-12 shots for now.
I’m really going to miss her.
Sab
That show on NPR that replaced Diane Rehm (1A with Joshua Johnson) had a really good good show today in their first hour about end of life decisions, including hospice care.
J R in WV
“There are confounding factors. Some regions of the country are suspected to use hospice as a cobbled together long term care benefit.”
This is fascinating. Long term health care is a worrisome hole in everyone’s health plan, because no one wants to think about being incapacitated bedfast in a nursing home. No one. Trust me.
But we all need long-term care, unless we die fast. I’ve heard home health care is way less expensive than “residential” health care, but that just means less money to steal to Republicans. Worrisome.
Barbara
@Psych1: I’m so sorry. I hope your remaining time is meaningful and she does not suffer.
Barbara
@J R in WV: Many people — even well-educated people — are simply ignorant about what Medicare covers. Medicare does not cover any kind of non-medical care, including room and board in a nursing home or home care. Residents of nursing homes are covered by Medicaid once they run out of their own private funds, under some fairly byzantine rules intended to protect functioning spouses. It would not surprise me greatly if people try to use hospice as a way to fund some kinds of nursing services to avoid going to a nursing home, but that would expose the cooperating hospice to a serious risk of fraud allegations. It would also prevent someone from getting a lot of medical services they might need.
J R in WV
@Psych1:
Oh, psych1, I’m so sorry!! 17 is a good long time for kitties, though. And I know you won’t have her suffer, you’ve got time to love on her and care for her.
It is the hardest best gift we can give them…
J R in WV
@Barbara:
I wonder if you know and could share any of the details about rules to protect functioning spouses?
Barbara
@J R in WV: Basically, the general idea is that when one spouse needs nursing home care but the other does not, the requirement that a person “spend down” all available assets is modified to allow the healthy spouse to continue being able to meet their daily needs. The amounts that can be kept and for what and other exact rules (e.g., can the state take a lien on retained property and collect amounts expended after the second spouse dies) vary state by state.
ETA: Most states have adopted rules to penalize individuals for “giving away” property to children as a way of spending down assets, usually by restricting your ability to qualify for Medicaid to a certain length of time after you have made donations in excess of a particular threshold. During that time you have to pay for your care yourself, and presumably, you will likely do so with the assets you tried to give away.
Psych1
@Barbara: And J.R. Thank you for that. As a commited Bernie fan I have some problems with some of the politics here but do recognize this is a very caring and supportive group.
Aaron Slater
Anyone care to comment on the huge difference in length of stay at the 90th percentile for non-profit and for-profit hospice?