Death is now a home based event.
My awesome colleague, co-author, and friend, Sarah Cross is the lead author on a new article at New England Journal of Medicine that has found that Americans whose deaths are attributed to natural causes are dying at home more often than the hospital.
Between 2003 and 2017, there were nearly 35.2 million natural deaths (Figure 1). Most were attributed to cardiovascular disease (29.3%), followed by cancer (24.5%), respiratory disease (10.5%), dementia (7.9%), and stroke (5.9%).
In 2003, a total of 905,874 deaths occurred in hospitals (39.7%), which decreased to 764,424 (29.8%) in 2017, whereas the number of deaths at nursing facilities decreased from 538,817 (23.6%) to 534,714 (20.8%). The number of deaths at home increased from 543,874 (23.8%) in 2003 to 788,757 (30.7%) in 2017, whereas the number of deaths at hospice facilities increased from 5395 (0.2%) to 212,652 (8.3%). These trends were seen across all disease groups.
There are notable differences in where people die depending on their demographics and causes of natural death.
So what does this mean?
There are several major policy threads coming through in this short article. The first is that hospice and home deaths are becoming more common. That strongly implies that there is a lot more end of life home and unpaid caregiving now than under the counterfactual of holding 2003 places of death constant. Unpaid caregiving has massive direct and indirect economic costs. My Duke colleague Courtney Van Houten and her co-authors have shown that the economic costs of unpaid care giving for a year can easily run into the six figures even as the fiscal costs are “only” in the low five figures. There has been a concerted policy effort over the past decade to shift care out of high federal cost facilities to lower cost (to the federal government) locations of care. In a recent Health Affairs Blog post, Chatterjee and others raise the possibility that this is cost shifting instead of cost saving once we account for unpaid caregiving burden as a real cost:
The push to discharge more patients directly home after hospitalization may seem preferable in some circumstances. In addition to being financially sensible by decreasing spending on postacute care, patients might prefer to be discharged home rather than to an institutional setting. In this way, getting patients home may represent a rare opportunity to align goals across patients, payers, and health systems. However, these gains must be viewed in the context of the costs borne by those who care for patients once they are discharged home—informal caregivers. …
Payment policies designed to reduce institutional postacute care do little to support home-based care when patients are more quickly discharged than before. Medicare’s home health benefit provides limited home-based support, with at most one visit per day from a home health provider. Although Medicare Advantage expanded this benefit in 2019 to cover non-skilled needs such as help with daily activities, in the postacute period, when patients frequently need significant support in their activities of daily living, a once-daily visit is unlikely to alleviate caregiver burden.
Furthermore, our current hospice benefit was designed to be effective within the paradigm of well staged, predictably descending cancer progression. Hospice has become far more commonly used over the past twenty years. In 2016, 1.4 million people used hospice, and 95% were over the age of 65. The disease mixture of the hospice using population has changed. In a recent paper that examined an upstream palliative care demonstration project for the very seriously ill that Sarah and I worked on with numerous colleagues at Duke, over 80% of the project decedents had more than six comorbidities in the last year of life, more than eighty percent had a dementia, and almost all had a cardiology concern while less than forty percent of program decedents were diagnosed with at least one cancer in the last year of life. The target population was specifically chosen to be very ill, but the surrounding decedents who were not in the program were twice as likely to have a dementia diagnosis in the last year of life than a cancer diagnosis.
Our hospice programs are still optimized for a different care pathway. Furthermore, we place restrictions on hospice and palliative care program expansions that we don’t place on other medical interventions and innovations. From the same article, we explain:
In health care, the expectation of cost neutrality is unique to hospice and now palliative care, where coverage for therapies is typically based on their efficacy and ability to improve patient and caregiver outcomes. Given the challenges of using reimbursement to measure resource use, alternative measures may be needed. For example, hospice enrollment could be considered as a surrogate outcome that reflects reduced resource utilization at the EOL and high-quality EOL care. We found that the CMMI demonstration significantly increased odds of hospice enrollment. Patient-centered care, symptom control, and alignment with patient and caregiver preferences are also important outcomes to consider in evaluating palliative care models.
Right now, any innovation or policy change that does not save money during the end of life care regimen will not be favorably evaluated. Other treatment interventions can and are favorably evaluated if they buy improved quality of life and improved health at reasonable net new expenditures.
As more and more Americans are dying away from institutional settings, policy needs to catch up to reality. Sarah and her co-author have made a meaningful contribution to the policy environment by noting that our reality of where we die has changed and is likely to continue to change and therefore policy needs to catch up.
Elizabelle
Both of my parents died in their own home, of cancer. I took care of them both. Hospice rocks.
My father, a lawyer, IMHO forsook some comfort care he could have benefitted from because he wanted to stay strong and avoid the hospital at all costs. (This was many years ago.) He turned the hospice nurses away, although they arrived way too late in the process. Mom was more amenable, and it was 25 years later.
Baud
I read the title and was going to comment that we’ll miss you.
raven
My next door neighbor died of a heart attack Sunday night but he was only 50.
Amir Khalid
@raven:
Sorry about your neighbour.
Auntie Anne
I have very mixed feelings about dying at home, having had a close friend and then my mother choose to die at home (mom within the last year). I agree with Elizabelle that hospice rocks, forever and always, but what I saw was emotionally overwrought primary caregivers (her husband) not bringing in hospice soon enough or misunderstanding the medication (my father), so there was some needless suffering. I’m torn – in both cases, dying at home was exactly what Mom and my friend wanted, but these situations are horribly difficult on caregivers, and I believe any evaluation of hospice has to take the caregiver costs into account, as tough as they are to quantify.
Elizabelle
@Auntie Anne: There can be a delay in obtaining needed palliative meds, when you switch from insurance for healthier people to the hospice system, as you must. I remember begging and pleading and offering to pay the whole cost of a med out of my pocket before hospice relented.
And our situation went well because you had a middle-aged daughter who was able to assume care and oversight. It’s likely way different and harder when you have two fragile and frail spouses. Or an isolated patient, and those with alienated families.
I moved back home with my parents for the duration of dad’s final months when my mom told me my dad had fallen in the bathroom and she could not help him up. Hours and hours before.
And this just came up once I asked how Dad was after catching up on other stuff. (We lived 20 miles from each other.)
PS: Condolences on the loss of your mom. That’s very recent.
MCA1
@Baud: I read the title and assumed it was a John Cole post!
lee
My father-in-law died in an assisted living facility.
Would this be considered ‘home’?
Raven
@Amir Khalid: Yea, it’s hard when you watch someone deteriorate and you can’t help.
David Anderson
@Auntie Anne: I completely agree that full economic costs should be incorporated in evaluating hospice and home based care instead of merely federal outlays.
kindness
I know for members of my family at least, the choice to die at home surrounded by family and friends was way better than doing so in a sterile hospital environment. It didn’t have anything at all to do with costs. It was just a better more peaceful way to go. I’m thankful they were able to do so.
WaterGirl
@Elizabelle: Oh my gosh, Elizabelle, what goes on in the minds of elderly parents is mind boggling. You must have been beside yourself. I’m sorry you had to go through all that, but you made it through and are living your best life. I’m sure they would both be so proud of you.
Elizabelle
@raven: That’s very sad, and very young. What a shock.
WaterGirl
Good post. Putting something like “New Trend: ” in front of that might have saved me from a moment of panic, though! :-)
Elizabelle
@WaterGirl: WRT pride: my dad, yes. He was a love. My mom, never.
Lessons learned from my hospice experience with Mom: stockpile the palliative meds while you’re on the gold plated health plan. Issue with hospice was the delivery method: Mom loved the pads you could attach to the body; hospice just wanted to dispense the med in generic gel form, which was their approved method.
For another med: too slow with getting it from hospice, and was able to get a 90-day supply (ha ha) from the previous insurer, after an hour or so on the phone. But it was a long-prescribed medicine that really helped my mom, more than hospice realized. You could tell immediately when it was out of her system. (My mom suffered from depression and anxiety.)
GET THE BED RAILS. Even if patient does not seem like a flight risk. That was a terrible misjudgment by our hospice nurse and she admitted it. 80+ years of heading to the bathroom on her own: it was so hard to watch Mom 24/7 and she took a bad fall in the bathroom (as she was warned and warned) when I went across the street for 20 minutes to feed and walk a neighbor’s dog. The rails were backordered and arrived after death.
I strung silver Christmas bells all along Mom’s hospital bed to try to get an aural wakeup if she was trying to get out of bed while I was napping in the same room. It worked.
You will do this anyway, but have a notebook and record every med dose and changes in patient’s health, or little sayings and stuff you will want to remember. Because you will be so exhausted and really will not remember exactly when the meds were last administered.
With my dad: it was pre-cell phone era. But I would give anything to have used a tape recorder, because at 3 am he would be telling me the most charming and wonderful stories from his childhood and young adulthood — which he rarely talked about — and all manner of stories I had never heard before. And they are all lost, lost, lost because I was too exhausted to capture them.
Have the hospice nurses train you on the very end of life pack of meds they drop off before you think you’ll need it. In our case, Mom deteriorated fast and it was catch up with some of the palliative care. (Actually, the fast departure was a mercy all around.)
PST
My mother died of cancer this summer in a hospital hospice unit after trying home hospice. Even with a competent child living at home, it was difficult to control her pain and keep her comfortable. It simply took too long to respond to changes, especially since she was reluctant to admit to pain, because it meant making calls and waiting for help. The plan was to get her discomfort under control in the supervised environment, then send her home under a plan that included more hours of nursing care on site. However, she sank quickly and never left. By that time, I don’t think she cared much where she was, although she was usually lucid and liked having family there. I was impressed by how much more could be done for her on a floor with experienced nurses always nearby, even though they had responsibility for all the other patients as well, and with backup on call to change the plan when necessary. I think I would choose a unit like that for myself after what I observed. The staff was great — kind people who knew what they were doing.
Elizabelle
@PST: My condolences, PST.
Noted re the hospital hospice care unit. I’m sorry for your mother’s experience with pain. My mom had lung cancer, and her lung function actually collapsed before she was in the worst of pain such as you describe. We realized at the time that we were all very lucky with that, and no one tried to prolong anything.
piratedan
Passing at home was what both of my parents desired, only my Mom was able to achieve it. Dad had passed earlier (cancer) after being admitted for a fall and being taken to the hospital from which he was never able to return home. She mentioned to me about comfort, as in comfort in the sights and smells of your own possessions and the people in your life, her dogs, her husband, her art in that if her last days were upon her, let it be in the home she created.
Hospice for us was a non-profit affair, we knew where the path was going and got them involved when the other options (recovery) became less likely. The real issue was negotiating with the insurance company about getting a care-giver to assist me for their care (she was cancer/emphysema and her husband was in decline at the same time, super-aggressive onset of a strain of Parkinsons) and how much money they would provide and limiting my choice of providers. Her 2nd husband followed her a month later
I posted about it here a few years back and I was fortunate to be between jobs at the time, so I could devote the time to be a care giver (or have a spouse who understood the need), not everyone else is as fortunate or able to do so.
There are times when I wonder how many folks find ways to remove themselves from the board so as to not have to deal with the administriva and hassle that comes with this or the burden that it can place on the family.
Ceci7
My dad died of cancer last week, in the hospital. While I’d long thought it would be ideal and comforting for him to die at home, in reality as the cancer progressed neither he nor my stepmother were able to make effective use of the home health services available to them: it became distressing and frightening for all of us to balance what was best for them (he as the patient and she as the primary caregiver) with their stubborn insistence on independence. At the hospital he received excellent end of life care, and we were able to be with him around the clock. He was not enthusiastic about being in the hospital when he was lucid enough to know where he was; he was also able to relax and sleep better than he’d done at home for a couple of months. And in the final 48 hours he truly did not care that he wasn’t at home.
Elizabelle
@Ceci7: My condolences, Ceci7. I am glad the hospital care worked out for your family, too. It all really depends on what takes us from this world, no?
Ohio Mom
Ruckus
Both my parents and my sister died in hospice. 2 of them were very ill and staying at home just was not feasible.
To die at home you have to have live in caregiver(s) who are at least minimally capable and do nothing else.
And a lot of people want the surroundings that are familiar, and a hospital/hospice really isn’t that.
Also the Boomers are the ones starting to do the most of the old age dying and there are a lot of us. And some are usually at least somewhat better off than a lot of our parents/grandparents were at the same age. Better healthcare is at least available, both of my parents lived longer because of it.
Ceci7
@Elizabelle: Thanks, E – and yes, it does depend. My dad was never ready to acknowledge the cancer was terminal so we weren’t able to have a full and open discussion about hospice. Callie Crossley’s Under the Radar podcast had a great episode (11/15 episode) about hospice and palliative care.
Alex
Not only should they look at costs outside of those to the insurer/public insurance– they need to evaluate programs on how well they are reaching the people they are intended to benefit. I recently read the inspector general’s report on Medicare hospice and all they wanted to know was how many people had outlived the deadline, because if too many of your patients are not dying fast enough, the provider might be trying to scam the government by having people in hospice who don’t really qualify as terminal. But they never seem to look at how many qualified people were never referred to hospice before death, or only a couple days before, so they don’t get the benefits they are entitled to/have paid for.
WaterGirl
@Elizabelle: So many things to learn when you will (hopefully) never need them again, and by the time you’ve finally learned it all, you don’t need them anymore. Except to share your heard-earned wisdom and experience with others.
When my dad died, I swore I was going to write a manual so the whole process would be outlined for the next person, and the next. But by the time I got through it, I was so tired and took a break, and then it never happened.
Sorry to hear that about your mom. Some people can never be pleased, can they?
David Anderson
@Ruckus: Hey, that is a paper that Sarah and I will be working on Spring 2020
David Anderson
@Alex: A lot of the people who are in hospice for more than 180 days have some form of dementia. Hospice is being jury-rigged into a bastardized home health benefit for people who need a lot of care and whose at-home unpaid caregivers need either respite or supplemental expertise. Dementia is just about the mirror image of the “typical use case” patient for hospice in that it is poorly staged, long lasting, chronic and minimally predictable in the decline.
Barbara
I have to say that I found the focus of your post on the economic implications of dying at home to be offputting. There is an economic cost to everything, but dying at home is less expensive than dying in the hospital. Alleviating the cost of that care depends on what the care entails. I am not a libertarian, and favor providing certain types of home based benefits given the increased number of people receiving care at home. But both of my parents and my in laws died at home and their in-home care needs were vastly different, ranging from zero to practically 24 hours per day — indeed, my mother in law’s care probably would have been cheaper in a facility.
Barbara
@David Anderson: Yep, this is true. Which is why the current one size fits all hospice benefit is not leading to better outcomes for more people.
@Alex: The limits of the hospice benefit are that it is available for people whose medical condition makes them likely to die in six months. In many cases, “outliving the benefit” means that the person was not really eligible for the benefit. The answer isn’t to ding the OIG for figuring this out, the answer is to redefine benefits so that people who need different types of care are not shoehorned into hospice. Forcing people into hospice has specific consequences that might be harmful for people who do not actually “need” hospice. The hospice company picks up a nice global payment and doesn’t actually provide the services that the person needs, because they aren’t “hospice” services.
Barbara
@Alex: Just to follow up, the problem is that when hospice providers are gaming the system, they are doing so in a way that cherry picks the kinds of patients that allow them the greatest profit. So that when hospice is clearly taking patients with low medical needs but high social needs (dementia), that reduces their capacity to take other patients they don’t want — ones that need more intensive monitoring, and higher drug costs. The system needs to move beyond the hospice model, which was designed when people looked at dying as binary — if it wasn’t “soon,” basically, it was “not at all.” Which is kind of a crazy view of the world.
So under the Medicare program, if your spouse has long-term dementia, but you can get him to the doctor when needed, you are considered to have no medical need for home based benefits of any kind. More recently, Medicaid has begun to permit the provision of in home care if your needs can be met at home with some daily assistance and the alternative would be admission to a nursing home. This is really the benefit that needs to be considered for Medicare, but because it is viewed as a long term care benefit, it is not covered by Medicare. In comes hospice as the “solution” for alleviating your needs.
In addition, this benefit is hard to provide outside of urban areas. There was a great article in the Washington Post about what is happening in Maine, where there are more people who are qualified for “in lieu of” nursing home care than there are caregivers. I actually disagree with the article’s statement that this is the future everywhere, because it overlooks the fact that there could be alternatives to providing care one person at a time in their home (e.g., adult day centers), but it definitely paints a bleak picture of what it means to be old and sick in an aging, rural community.
J R in WV
My dad was able to keep mom at home, and she died in their bedroom in his arms, after a long decline with COPD. Probably a heart attack, whatever it was, it was a blessing as she was done fighting.
Then years later, dad had leukemia, and beat it, but the harsh chemo that enabled him to survive the cancer caused scarring in his lungs so he too had COPD at the end. Hospice was a blessing for him, he was in a good assisted living center, I was with him a lot, especially the last 2 or 3 weeks. Family leave act for the win.
J R in WV
@Barbara:
You do know that David’s JOB revolves around the economic issues of health care, don’t you? That may feel cold and off-putting to you, but it is totally necessary when discussing the funding of various models and types of health care.
Elizabelle
@Barbara: Here’s that WaPost article about Maine. It was eye-opening. From August of this year.
‘This will be catastrophic’: Maine families face elder boom, worker shortage in preview of nation’s future
CatFacts
As someone who was an informal caregiver for a relative in a hospice program a few years ago, thanks for this, David. I didn’t take it as cold–just realistic about the ways the health care system “eliminates” some costs by pushing them outside the system onto informal caregivers. At the moment, those invaluable people are practically invisible in our healthcare system. They shouldn’t be.
Hospice is fabulous, and in many cases cheaper and (more importantly) better for the patient and their families. The road to get there in my case, though, definitely was very costly for me as a caregiver–and for my health insurance company, who ended up having to pay for the health problems I incurred as a caregiver that I wouldn’t have had otherwise. Turns out lifting partially-mobile patients when you’re not trained for it and don’t have the proper equipment leads to injuries…
Barbara
@CatFacts: Yes, I agree, but there is something about the idea that my mother should have been paid to provide care to my father when he was dying that I find, not offensive, but incomplete. There will be a trade off between medicalizing every aspect of dying and paying for it, and allowing it to be more naturally what it has been, a life event that takes place in the context of family life. Allowing for respite care, weekly nursing visits or other relief is definitely something I support. I don’t know if I really support public payment for someone to quit their job so that they can take care of their elderly parent on a full time basis. The Medicaid program I talked about above has an option for family members to become trained and certified as the in home caregivers. I recently helped someone get benefits under this program.
cckids
@Barbara:
You make excellent points. When my son was declining health-wise, we were lucky in NV that there was an interim, palliative-care program that was a step before hospice. It consolidated all the doctors and specialists, made getting meds and supplies quicker, and generally eased all of our lives.
karensky
This is terrific news to me. I struggled to pay for long term health insurance because it would benefit me and my two children. I am prepared for death now that my health needs, short and longer term , can be met. The thought of leaving the planet from my cozy apartment makes me very happy indeed.
cckids
@Ohio Mom:
Agreed. Wow, this hits so close to home. Not just while my son was in hospice, but for a huge part of his life. He was born in 1983, and by the time he was 13, every time he was hospitalized, we were signing forms that agreed that since he was non-verbal, one of us would be at the hospital all/most of the time, and that it wasn’t their fault if something happened if we weren’t there. And that is the least of it.
The real-life medical stuff I had to learn tends to boggle people’s minds. NURSES were startled to hear that I had to change his tracheostomy tube, deal with a wound vac, (for the sore the f*cking hospital gave him), lifted him in & out of our car for years after the van with the lift broke down. (contrary to popular belief, Medicaid/insurance doesn’t pay for wheelchair lifts)
Not to get too far off the subject/into the personal weeds here, but parents of adult disabled kids are doing the jobs of 3 full-time caregivers. I don’t know the answers, but right now, having a child with significant disabilities is a financial death sentence. I doubt that it will change.
Ruckus
@piratedan:
Sister tried to take care of dad, with the help of a live in extended family member. Dad had Alzheimer’s. She lasted 6 weeks. Some diseases just do not lend to be attended to by non professionals. This is one. It’s too exhausting, too unrelenting, too terrifying to manage with a loved one. It takes some distance.
EmbraceYourInnerCrone
@Barbara: Having lost both my parents and my in-laws in the last fours years, my parents with in 6 weeks of each other, my father-in-law about a month after that, all after years of serious/terminal illness, I have no problem with paying a salary/stipend to people willing to give up their job to be primary caregiver for a relative or parent.
My Dad died in a hospice and it was a such a good option to have, but he was their perfect patient, he was there just week (then died) after moving from a long term rehab. He needed care for years before he died due to physical ailments and dementia. My Mom died in a long term rehab, she had COPD and a host of other illnesses and was in a wheelchair and on oxygen. My father-in-law died in hospital after a sort stay , he was lucky enough to be able to have home nursing care for most of his years long bout with colon cancer and help from his wife but for his wife it was exhausting.
My youngest sister-in-law died at 42 of a stroke but she was disabled and wheelchair bound for a while before that. Much of her care fell on her husband and 2 young daughters.
Giving up ones job in (for instance) one’s late fifties means probably giving it up forever. I have a full time job and am over half my family’s income. I am finally not my daughter’s financial support as she finished her bachelors. I still have to pay my housing/car/food costs whether I am working or not…
Tata
When my dad died, we were fortunate that his wife was a medical writer who understood what was going on. She was able to deal with medical, then hospice people and she worked from home. Even so, taking care of Dad the last month of his life was a big strain on the whole family and the rural community. I was able to take a month off from work, but my brother and sisters were not. By the time I went home, I was so exhausted I couldn’t hold a conversation and the horrible feeling of being completely out of sick or vacation days to just be by myself haunted me for years.
Don’t get me wrong. I was lucky to be able to spend that last month with him. But if I had not been able to go? Dad couldn’t have afforded to pay someone to do what my sibs and I did. Also: there were four of us. I have only one child. Am I supposed to think of my kid as my end-of-life pit crew?
Matt McIrvin
My grandmother died at 96 at her assisted-living facility–she had esophageal cancer and was able to decline aggressive treatment and choose hospice care. It was a great decision and I’m happy she was lucid to the end and able to make that call.
Ohio Mom
Re: cckids: There’s no argument that children with disabilities have a better life at home, with their families, than in an institution. And you accomplished that with your son.
And there is no argument that institutions for people with serious mental illness were beyond awful.
I see this all of a piece: we stopped putting disabled children in institutions, we opened the door of the mental hospitals, and now we are taking the dying out of hospitals.
Then we ignored, and continue to ignore, the financial, physical, social, emotional and practical costs to the people involved.
Our quest for better quality of life has been subverted by the You’re On Your Own proponents.
Barbara
@EmbraceYourInnerCrone: So just to identify the specific issue, Medicare does not pay anyone, medical provider or otherwise, to provide what is referred to as long term care, as in, bathing, cooking, toilet assistance, etc. No one does — that is the specific need that nursing homes address.
Medicaid covers long term care provided in a nursing home AFTER you spend down your assets. Medicaid also now has a program that I described above, which is paying for in home care when the alternative would be a nursing home. Family and relatives can be paid for providing this care if they undertake a certification/training process.
If you quit your job to take care of a parent, for the most part, you are not displacing any expense that is currently being underwritten by Medicare.
My specific issue with hospice, at least from my own personal experience seeing it for my in laws and father, was that even with hospice, my mother and neighbors were required to provide nearly all of the affirmative services my father received, as well as transportation. My in laws were already paying for nursing care, and hospice did not displace any of their caregivers. As a result, I have a jaded view of hospice that is not provided in a hospice facility.
JaySinWA
@Barbara: Your experience is unfortunate. I hope it isn’t common.
I have seen Hospice up close in 2 home care situations and a hospice facility. Both worked reasonably well given the individual circumstances, although the hospice facility placement was probably later than it should have been, more a function of the individual than the system.
The home hospice in both cases was thru a Medicare Advantage plan, and I have heard from a number of providers in the plan about their experiences. I’m sure transport wasn’t part of the hospice coverage, but I believe the overall plan has limited transportation coverage for special circumstances.
Barbara
@JaySinWA: Just to be clear, I had no complaints against the hospice provider, but I discovered that the hospice model does not replace non-medical care giving.
cckids
@Ohio Mom:
This! You state it all so much more eloquently than I can. Thank you.
I’m thrown back into this thought process today; my mother has had Alzheimer’s for 2 years now, and has had a more rapid decline in the last 6 months, she can no longer drive or be alone. She and her sister live together, and my youngest sister lives in the same town. My aunt was just diagnosed with uterine cancer, and needs surgery, followed by ?? treatment TBD. So our family is facing some tough decisions regarding caregiving in the next few weeks. There are no truly good options.
cckids
@Barbara:
You are correct, for most families, where the patient was living independently. My experience with palliative care and then hospice was influenced by the fact that we had been giving 100% care for our son all his life. When we began a hospice-at-home program, suddenly we had a visiting nurse once a week, meds and supplies delivery, and a four-times-a-week caregiver to assist with a bath, or cath care, etc. To us, that was a miraculous change to our daily lives. It gave us more energy and time to just be with Mike; less physical strain and running around after supplies.
The sad part was, it was five hours a week of a combo of skilled and trained/unskilled hours from two amazing women. And the difference to our family was life-changing. The lack of humanity in our current insurance/care system repeatedly boggles my mind.
Elizabelle
@cckids: I think you are amazing for what you went through.
We could do so much better. Richest country in the world. Hardly.
Auntie Anne
@Ohio Mom: Yes, you’ve hit the nail on the head. There are tremendous financial, social, and emotional costs involved, which aren’t part of any equation I’ve ever seen. My family is collectively and singly still digging out from under what it cost us to honor Mom’s wish to die at home. And yet, we’re lucky because we were able to do it.
Ruckus
@Matt McIrvin:
My sister had breast cancer and in 6yrs had been through 2 major rounds of chemo and of course it came back. Docs opened her up, took a look and closed her up. Her choice was hospice or aggressive chemo and 30-45 days. She chose hospice. Standing out in the hospital corridor, listening to some of her friends say that we should get her declared incompetent and force her to take that extreme chemo for extra time for, well them, pissed me off. We had a big party in her room 5 days later, for mom’s birthday, with a bunch of her friends, I was last out after we talked for about 15 minutes, she passed about 20 minutes later.
She went as peacefully and happy as a dying person can. That was 11 years ago, still miss her. We should all be so lucky to get get the care she got, if only she’d been able to get it sooner.
Alex
@Barbara: I entirely understand why they want to evaluate whether people are really qualified for hospice. My objection is they don’t evaluate or even seem to see the converse situation. You see the same thing when they go to evaluate Medicaid home care, too, since you mentioned that. Our state IG did a report on the Medicaid adult services program, and it was entirely focused on whether anyone had gotten paid for more care hours than they should have been. They never checked to see how many people were forced into nursing homes because of inadequate care hours or low caregiver wages making staffing impossible. There’s a mindset in too many of these programs that they’d rather see 1000 people go without the benefits they need and are qualified for than see 1 person get something they didn’t “deserve.”
Ruckus
@Ohio Mom:
That’s not who they are, they are the fuck you I got mine people. Problem is of course, that those they leave behind end up paying a far higher price. It’s never easy, this living and dying bit, but damn, couldn’t we make it a least a bit better, even if some asshole billionaire has to get by on a few million less?
Elizabelle
@Ruckus: You talk about your sister a lot. Know how much she meant to you. She made the right decision too, sounds like.
I know this thread is about hospice, but I am thinking about some the severely TBI injured soldiers and others (gunshot survivors!) being released back to their homes. Sounds like we do not have enough care in place to take care of them and their families, who have now become caregivers.
We could do so much better.
Ruckus
@Alex: And there always seems to be some lame ass reason they don’t deserve it. They didn’t earn enough money because they couldn’t get a better job because they were black or an immigrant or a woman or something, something, something, bullshit.
Ruckus
@Elizabelle:
She did. She was my best friend for the last 40 years of her life. Not as much for her first 20-25. But we came to respect each other for the good and not worry about the rest. 40 good years, not bad. I still feel it was the right decision.
I have been seeing family/extended family/friends die for over 60 years. A woman I knew is still in prison after 43 years for murder. I’ve traveled to 46 states, 3 continents, worked in pro sports for 11 yrs full time, owned 2 businesses…. I haven’t seen it all but I’ve seen a bit of it.
Ruckus
@Elizabelle:
To the second part of your comment, sometimes there really isn’t much that can be done. Doesn’t mean we shouldn’t try harder.
But we are in the grip of selfishness, I got mine – fuck your’s, billionaires gotta have more, life just sucks – in other words – the conservatives/republican party bullshit.
Barbara
@Alex: The IG’s mission is to prevent the misspending of program money in a way that is inconsistent with regulations. There should be someone figuring out unmet needs, but it will never be the IG.
Elizabelle
@Ruckus: You’re good people, Ruckus.
rumpole
I wonder what the cost of this would be, but every “sandwiched” middle aged person would vote for it: a medicare (or medicaid) benefit that covered assisted living in the home. Because now, if you need care, your options are:
A government program that filled the gap between independent living (Medicare) and nursing home (Medicaid) would be hugely popular. I would vote for any politician that was serious about solving that problem. For example, Maryland has a program where you can get assisted living in your home if you otherwise qualify for it. The wait list is 7-10 years–by which time most are ready for the nursing home.
AM in NC
Very interesting. Thank you. And Courtney Van Houten is an acquaintance of mine – our kids are school friends – so it was a nice surprise to see her work referenced in your post. I sometimes forget what a small world we inhabit around these parts.
psychobroad
My grandmother,a brother-in-law, and a dear childhood friend all died at home. It’s a lovely way to go.
Barbara
@rumpole: What makes it particularly difficult to address this, in addition to just money, is the trend of rural areas being disproportionately aged — such that even with a willingness to pay for in lieu of nursing home care in a person’s home, states cannot supply the staff to provide that care. Likewise, health care personnel of all types are increasingly in short supply in rural areas, and of course, hospital closings that leave communities without any facilities are almost all occurring in rural areas. The issues are daunting anywhere, and some can be addressed through telehealth, but in low density population states it’s really hard to see how the need to provide hands on care to people with dementia or end of life situations can be solved without uprooting people who don’t want to be uprooted.
Alex
@Ruckus: In these cases, it’s even dumber than that– The “consumer” needed more toilet breaks or took longer to feed than the arbitrarily determined “time and task” sheet says, so the provider should not be paid for that time. Even though if the worker left them without doing those tasks, they could be charged with neglect of a vulnerable adult.