Death of an Elder Raises Uncomfortable Questions About Adequacy of Care

Yves here. I’ve taken the liberty of changing the title of this Kaiser Health New from A Family Death During the Holidays Prompts Questions and Reflection. The piece pulls its punches, perhaps because the health care journalist author Judith Graham, who regularly writes about aging, is hesitant to come off as an advocate and/or potentially alienate future sources. But you can see she is clearly not happy with the caliber of care her father-in-law received in his final days.

I’ve heard similar stories from readers and I saw it first hand with my mother, who like Graham’s father died at 94. I would be curious if practices are better or worse with the moderately and very old in other countries, particularly in Asia. The two times my mother was hospitalized in her final year, the care was horrid. And it wasn’t as if the staff was overburdened due to Covid. My mother’s aides would call for help, and after >10 minutes of getting no answer, would then go to the nurses’ station to find them doing their nails and watching TV. They also failed to keep her well hydrated and bruised her horribly.

Similarly, when she went to the hospital on Christmas Eve, it was not crowded since surgeries are not scheduled for that week. Despite a Covid surge, hardly anyone on staff was wearing masks. I nearly lost it when an MD pulled his surgical mask below his chin to talk to my mother. It took over 20 minutes of hounding staff to get her some water (there were no cups in her room, otherwise I would have handled it).

They couldn’t even be bothered to diagnose her properly. After conferring with IM Doc, it was very clear she had a pulmonary embolism, so her prospects were not good. But I was hoping to get her back home to see a fire and have a nice dinner. Instead, the MDs, against evidence (very sudden crash in blood oxygen, clear lungs on an Xray and no congested sound to her breathing) maintained she had pneumonia. They insisted on subjecting her to a second chest Xray, on what IM Doc said is a bogus theory, that somehow her lung tissue would fluff up and the pneumonia would become visible. That second Xray killed her. All the handling and exertion debilitated her. She died within 2 hours of coming back to her room.

But more broadly, an anti-aged attitude was evident. No one seemed willing to work that hard to save an old woman, or even help her have a more dignified death, particularly since she didn’t look that swell. Thanks to Covid, her hair and nails hadn’t been done for over a year and she came to the hospital in flannel pajamas. Notice the photos of the father in law below. Despite the upscale sweater, watch and glass frames, I suspect his very aged skin was held against him.

BTW, according to the Social Security life expectancy table, an average women my mother’s age typically would have lived another 3.8 years. So to hell with the bigots on staff.

And this sorry picture is set to get worse with Covid, with repeat infections reducing health baselines generally and resulting in more demands on doctors, nurses and hospitals that have no ability to increase capacity in less than many years. A sicker population will also produce more prejudice against older patients, even if they are robust and have managed to stay Covid-free.

By Judith Graham, a contributing columnist who writes the “Navigating Aging” column for Kaiser Health News. Prior to that, she was an investigative reporter, national correspondent and senior health reporter at the Chicago Tribune and a regular contributor to The New York Times’ New Old Age blog. Originally published at Kaiser Health News

Melvin Zax was a distinguished psychologist who worked until age 90, even as end-stage kidney disease sapped his strength. His death a few days before Thanksgiving left his family grieving but resolved to celebrate life, as he did, in the new year. (Jacob Zax)

It wasn’t the Thanksgiving holiday any of us had expected.

Two weeks before, my 94-year-old father-in-law, Melvin Zax, suffered a stroke after receiving dialysis and was rushed to a hospital near his residence in western New York.

There, he underwent a series of tests over the course of several days. With each test, Mel became more agitated. His hearing aids weren’t working right, and he didn’t understand what was happening.

Amid the hubbub of a busy hospital, Mel wasn’t sleeping at night. He became delirious, a frightening and all-too-common experience for older adults who are hospitalized.

For two days, Mel was housed in the emergency department; the hospital had no regular rooms available. Similar scenarios are playing out across the country, as hospitals stagger under a surge in respiratory illnesses and covid-19-fueled cases alongside acute staffing shortages. Older Americans are at particular risk: About 1 in 5 emergency department visits are made by people 60 and older.

An ongoing crisis in long-term care options has contributed to the bottleneck. Some seniors are occupying hospital rooms longer than necessary because there’s no place else for them to go. Many nursing homes and home care agencies aren’t accepting new patients because they simply don’t have enough workers.

Staffing issues at my father-in-law’s hospital were apparent. My husband, who was at a conference in Montreal when his dad was first hospitalized, called repeatedly but couldn’t get through to a nurse or a doctor for hours. As far as we knew, Mel’s stroke was tended to promptly, but the lack of clear communication left us with lingering doubts. How often did nurses check on him in the subsequent hours and days? How were decisions about testing made, and what consideration was given to Mel’s advanced age?

Mel was a distinguished psychologist who’d worked part time until age 90 and remained mentally sharp. But he’d had diabetes for decades and since September 2020 had been getting dialysis three times a week, a grueling therapy for kidney failure. “I’m a wreck,” he would tell my husband over the phone after returning from a session.

I’d written about dialysis for the elderly, and I knew the statistics: Patients 85 and older live, on average, two years after beginning treatment. Mel had already beaten the odds by surviving 26 months. Did the hospital staff realize how frail he was and adjust their treatment and testing regimens accordingly?

“Ask for a geriatrician consultation,” I advised my husband, who has legal and medical power of attorney for his father and was now at his side.

I worried that nothing being done at the hospital — electrocardiograms, CT scans, an attempted MRI scan (Mel couldn’t tolerate that), an order to wear a heart monitor — would change Mel’s prospects. And he was increasingly agitated, groaning and throwing his arms out in seeming distress.

Some of what hospital doctors suggested simply didn’t make sense. Mel had been taken off statins for high cholesterol in the past year; a hospital physician put him back on the medication, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is not recommended for people near the end of life.)

Six days after his stroke, Mel was discharged to the nursing home where he’d been living for four months following a previous hospitalization. It’s part of a well-run senior living complex with a top-notch geriatrician who oversees medical care.

That geriatrician was the first to acknowledge that Mel might be dying. Gently, he told my husband that Mel had been depleted by all the interventions he’d received in the hospital and recommended that dialysis be stopped. Compassionately, he explained that Mel would probably pass within a week or two of ending the therapy.

Mel was barely conscious and unable to express what he wanted at this critical juncture. But my husband knew the ferocity of his father’s desire to live. “Let’s try one more session of dialysis and see what happens,” he told the doctor.

It didn’t work: Mel’s circulatory system was too compromised for dialysis to proceed. Over the next few days, Mel’s six grandchildren and three sons and their wives traveled to be at his side.

My husband realized it was time to arrange hospice care, and a social worker met with us to describe what that would entail. An aide would visit Mel several times a week, she explained, but that would take a few days to set up because of staffing issues. Meanwhile, a nurse would visit in the following days and we could call the hospice 24/7 for help.

As it turned out, an aide never arrived, but access to the hospice’s medical staff proved essential. As he lay in bed, Mel’s breathing became ragged and his chest heaved. With our encouragement, a nurse at the home called hospice, and orders were given to administer morphine every hour.

The next day, Mel seemed peaceful but more distant. There was a quiet in the room that hadn’t been there the day before. The hospice nurse arrived and observed that Mel’s breathing was halting for several seconds. Watch for these pauses and their lengthening, she told us. A few hours later, four of us sat at Mel’s side as his breathing slowed and then stopped.

That was four days before Thanksgiving.

How does one go on with a holiday under these circumstances? On the one hand, the entire family was together for the first time in many years. And there was lots to do: host a funeral, arrange for the weeklong Jewish mourning period, and prepare food for various occasions. Including Thanksgiving.

On the other hand, there was little time to think about what we’d just witnessed or process our emotions.

That’s what we’re doing now, as Christmas decorations go up in our neighborhoods and holiday songs fill the airwaves. Remembering Mel. Feeling sad. Noticing the shadow of death just behind us. And resolving to live well in the new year, knowing this is what Mel would want.

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  1. Cocomaan

    Sad stories. I don’t think it’s just healthcare. All service is suffering. I have no idea how you can measure this over time, but things have become shitty and there’s a general lack of work being done and trust. Almost like nihilism has taken hold. Social contract is broken.

    I even have to admit that I’ve been slack in my paid work over the past two years. Fortunately I don’t do anything that is life and death. But it does trickle down.

    I believe that what anyone who is ill or expects to need hospitalization should find is an advocate. Someone paid to be in the mix and is knowledgeable, like a midwife can do during pregnancy. This costs lots of money but it’s your money or your life.

    1. Randall Flagg

      This post reminds me of a visit to my better half’s Grandfather years ago in “rehab” facility. He was the absolute dictionary definition of the rapidly disappearing old school, rugged Vermonter, mechanic, outdoorsman jack of all trades, raised 5 kids smack in the middle of the depression (how scary must have that been?), decent honorable man. Broke my heart to think after the life he lived mostly outdoors, he had to spend the last two staring out the window.
      To Mr. Cocomaan, I think you’ve touched in something with the “service’ comment, or lack there of.
      I’ve noticed it at various lumberyards, etc., places like that. Reminded me of a conversation two weeks ago with an over the road mechanic repairing a piece of equipment on the farm. He stated that when you call up these various parts desks, it’s like all the old guys that cared have retired out and all the new staff just doesn’t seem interested in doing what it takes to do an adequate job. His words were”It’s like everyone has given up over the last two years”.
      Hard to disagree with that statement in most cases. Quite sad really.

      1. Peter

        We dealt with that looking for a small coupling part to connect two hoses on the hydraulic line being repaired – a small piece of metal with a 2″ diameter on one side and a 1/18″ diameter on the other side. There are two parts distributors in town (small Southern city) that have been operating for 50+ years, though both have had their founders die and subsequent family members take over the operations in the last few years.

        Both locations claimed to have the part, and the size was confirmed by the counter help over the phone. Both got it wrong on the size. Neither had the part in hand. My friend ended up ordering it from Amazon, which he hates, and lost about a week of work waiting for it to arrive (and he is not in a position to go without pay!).

    2. earthling

      Yes, there is rampant don’t-give-a-damn-ism today. Pathetic that many of those who practice it glom onto medical work because it’s a secure payday.

      And in their defense, they are managed by greedy don’t-give-a-damn executives trying to maximize profits, patient care is not in the equation.

      No one should have to have an advocate making a pest of themselves to stay alive, how sick is it that our society has come to that.

      1. cocomaan

        Yep, Randall’s experience above is mine with a lot of things. And like I said, I’m not above it.

        Nobody should make themselves a pest, but you better do it if you’re in this position. What’s sad is that by being a royal PITA, you are probably taking care away from someone else in this zero sum game we’ve built for ourselves.

    3. Anita

      It is combination. The ageism of the society, including the lack and attitudes of care staff as well as austerity policy cuts, all of which hit particularly hard the elderly citizens. This is the biggest human rights violation of our time, which does not get sufficient attention in a youth oriented efficiency cultures of our times.

      In Europe the longest healthy life expectancy is with Italians, which shows a lot not just about the positive effects of mediterranean diet and life style but also where the elderly are included as venerated family members and still have a role in contributing to society. Finland, my country, fares poorly compared with Italy with 10 years less of healthy life expectancy. Old people continue to be referred as a drag to the economy.

      Finally in a youth- oriented culture long experience, in general, and knowledge of history also get belittled with horrible results to society. Just look at the state of our societies!

  2. Wukchumni

    My 97 & 1/2 year old mom has been at an assisted living place for 7 years now, and she likes it and aside from the period when it was more akin to a gilded cage during Covid when she couldn’t really leave her apartment, everything has been ok.

    She tells me the staff is a revolving door of young adults who might last a few years or a few months on the job, there’s no sense of permanency @ all levels. I think she’s on her 5th or 6th director.

    When she moved there, all of the occupants had to be mobile (cane or walker was ok) but nobody in wheelchairs.

    Needless to say, Covid did a whammy on these kind of places (I liken my mom’s place to a cruise ship that never leaves port) and they lost a number of residents to cheaper assisted living homes, and there were even a few snatches of seniors by their children.

    Hers went from 52 apartments all filled up with a waiting list to get in, to a little over 40 filled…

    So, what they did was lessen the edict on mobility, and now just about every new resident is in a wheelchair.

    She’s a Greatest Generation and the newer ‘younger’ residents are Silent Generation, you should hear her bag on them, an odd generation gap.

  3. Arizona Slim

    Within three years (2016-19), I lost my favorite aunt, my mother, and my father. And, I’m not gonna lie: I miss the [family blog] out of them.

    However, I have lost count of the times I have said, “Better that you died when you did then now.”

    And I really, really, REALLY hate to say that.

    1. Wukchumni

      My mom’s what they call a ‘super-ager’ she has instant recall of events that happened eons ago, sharp as a tack-the mind of a 27 year old, with a 97 year old chassis…

      She’s lost 30 pounds in the past 6 months which isn’t a good sign, but still looks sharp and all that and we kid her about how well the diet is going, knowing better.

      My dad passed in 2002 just in time to never learn about our misadventures in the middle east, and I think mom’s exit will be timed about perfect to not have to witness the shit show soon coming our way.

      1. Anders K

        I hope your mom gets to leave on her own terms, and that she gets to be with the ones she loves as she does.

  4. KLG

    “Some of what hospital doctors suggested simply didn’t make sense. Mel had been taken off statins for high cholesterol in the past year; a hospital physician put him back on the medication, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is not recommended for people near the end of life.)”

    No, it made no sense at all. If statins work, and that “if” is the size of Gibraltar for most patients, they do not work on the timescale involved in Mel’s care. This is a complete disgrace to the medical profession, and any physician who recommended it is an ignorant quack (no, that is not redundant) in the Epic thrall of UpToDate.

    (…retreats to corner and will now STFU)

  5. meadows

    We all, of a certain age, have these stories. How our ill elderly are treated in their last days reveals the flaws in the sordid mess we call the healthcare system. I do appreciate these stories, even the grim ones, because I see the love and perseverance of family members against the odds as advocates for compassionate care.

    I was lucky to have the assistance of my siblings in helping Mom to die in her home a few years back, with the help of her physician who visited her regularly and skated on thin ice regarding fentanyl doses to “ease her pain.” He was brave but cautious. He and we had to continuously remind her (her pre-drugged wish) that the last place she wanted to go was the hospital. Yet, in her final hours, that’s what she demanded but we “dosed her out of it…” (fentanyl patches). If any of us had been traditionally religious there might have been severe disagreements about her assisted death.

    A peaceful death at home, an on call Dr., hospice help, and attentive family.

  6. upstater

    My 93 yo mom passed in early February 2021; she had many heart problems which were the ultimate cause of death. However, a week before she died a value apparently blew out. For some reason my brother wanted her to go to the hospital to see if anything could be done. I disagreed, but he had POA and was the designated health care proxy. She spent 3 days in the ER and 2 days in a room and had all sorts of tests and interventions, some quite painful. What was the point? I thought the assisted living MD could have prescribed hospice with her not having to leave her room. Anyway, she did return to her room and peaceably passed 3 days later; I was able to come and stay. While unable to speak, she clearly acknowledged my presence when I arrived. The hospice care was not great, and in stark contrast to the services my father received at home in 2012. My understanding is Obamacare gutted hospice care and rendered it threadbare, which is what I saw.

    Father in-law passed in November 2021 at 89. He was never a nice guy, but dementia made his madness and nastiness that far worse. He started basically starving himself that August, losing 60 pounds and had several medical problems arise and one leading to hospitalization in late October. My mother in-law, the primary caregiver, also became physically exhausted took a hard fall and was hospitalized for the first few days of FIL — to her the hospital was like a spa visit respite. We visited FIL in the 2 weeks he was in the hospital — he wasn’t eating, but clearly was dehydrated, as he’d gulp up to a liter of liquids when family came to visit – a sign of obvious neglect. The staff was masked only when they came into the room, but spend considerable time yaking in the break room, hallways and nursing station unmasked — and this was in the period when Delta was subsiding, but Omicron getting legs. Eventually the hospital sent him to a nursing home where he passed after 2 days. What a dystopian place that was! It was mostly long term dementia residents crowded in lock down wing, as the facility was taking in almost all revenue from Medicaid. Warehouse is a more apt description.

    I had an uncle in rural eastern Ontario that passed at 87 in September, having become physically disabled after a fall and suffered from dementia. He was a resident at a fairly large nursing home for 6 years. My aunt was very, very pleased with the care he received, throughout (except for a hospital visit for surgery). The out-of-pocket was a fraction of what we paid for my mom. My aunt, who worked in palliative care in the 90s, was very active in her church visiting parishioners in nursing homes and had 2 parents in nursing homes some years before, said the NEVER had been to a “bad” facility in Ontario.

    Aside from the small assisted living place where my mom was in New Orleans, I have NEVER been in a nursing home in New York State that wasn’t a filthy, smelly, understaffed, crowded dump. Almost all are PE or privately held. The non-profits are no better. All rely primarily on medicaid funding for indigent elders. What a pathetic system of caring for elderly.

    1. IM Doc

      The hospice care of my youth was run by churches. It was a mission and a way to serve the community for the members of the church. There were little problems here and there, but overall it was an absolutely wonderful experience for everyone involved. It was done from the heart and was viewed as a community service.

      And then the lawyers, MBAs and Obamacare got involved. No longer was hospice a gift of the heart. Nope, it became a big business. There are now gigantic hospice corporations that are being passed around by hedge funds. It has become very ugly for the most part and the patient is often the last priority. It has been my experience lately that milking the system for every dime is of the utmost importance.

      So, unfortunately, I have to warn everyone when they get involved in hospice to be on the lookout for anything unfortunate. Is it not the sign of a rotten society that we have to be this way with the dying and suffering? As so many are so fond of pointing out, “What would Jesus do?”

      This case exemplifies many of the problems in hospice care today. I just scan that briefing and shake my head. This is probably the most egregious that I know of – I learned of this one in a national conference a year or so ago and it has been the grist for constant “What the hell is going on?” articles in the national medical press – but I certainly do not believe in any way that it is unique. I can show you 20 others from around the country that will send chills down your spine. In this particular case, there were hospice nurses being ordered to jack up the morphine drip to off the patient quicker because their patient hospice benefits were about to expire. Had anyone told me that would be going on in my profession 30 years ago I would have had a stroke. But now, it is all too real. And unfortunately, while this and so many other frauds are going on, our national Medical Boards are nowhere to be found.. They are too busy flying first class all over the country and finding new ways to inject equity and Big Pharma profit into the medical school curriculum. They say their first priority is patient care – but as St Paul said long ago – by their actions you will know them, not their words.

      I am always so thankful when the elder patients have family members that run interference. It is staggering how many places they have to interject themselves these days to get proper care for their loved ones. The ones that are tragic that I see all the time are the older ones who have absolutely no one.

      So I urge everyone with an elder family member – do your research, develop eagle eyes and have no hesitation to open the mouth and let it rip. And report anything and everything that you find suspicious to the authorities. Do not hesitate.

      1. Louis Fyne

        there is no returns to scale of operating a chain of hospices. high fixed costs, high labor costs, low margins.

        Ban inter-state ownership of hospices at the federal level, cross fingers that states can regulate competently.

        not holding my breath.

        1. IM Doc

          “there is no returns to scale of operating a chain of hospices”

          The same can be said about Medicare. That is indeed the entire reason the Medicare program was created in the 1960s. There is no way to make a profit and sustain a business on the medical care of older people. So the government stepped in with subsidies and support.

          However, that has not stopped our capitalist overlords from doing all they can to make a profit on it. This today comes in the guise of Medicare advantage plans. The basic operating procedure is to take care of the perfectly healthy recipients and when one of these patients begins to have medical problems that requre more expensive care, we deny deny deny, and then eventually cancel them and put them back on regular Medicare. What a profitable business model…..”insure” patients until they are no longer healthy, and then “pawn” them back off on the taxpayers when things start getting expensive. It is no wonder their CEOs are making 10-20 million a year.

          Unfortunately, the hospice care model is trending in the same direction.

          If you have not figured it out, I find this whole thing absolutely sickening. I would love it if a reporter would ask one of our current Dem leaders pushing this crap – “What would LBJ think of Medicare Advantage plan?” “Forget LBJ – what would Daniel Patrick Moynihan think of the same?”

          1. John Zelnicker

            IM Doc – After all the revelations over the past couple of years about how fraudulent and corrupt the Medicare Advantage plans are, I decided this year to switch back to traditional Medicare while I’m still in relatively good health. It will also be cheaper to do it now, especially with Medicare Supplement policies, which I have applied for.

            Thank you and others for enlightening me.

  7. Mildred Montana

    My mother spent the last three years of her life (2015-2018)* in long-term care. As it was subsidized by Canadian medicare it only cost her her Old Age Security cheque ($1700) per month.

    The care was adequate, if perfunctory. The staff did what was necessary, not much more. Family visitors made up the extras like companionship, entertainment, stimulation, treats, etc. It is important to remember that most healthcare facilities are run for the convenience of the workers, not the comfort of the patient. If one is expecting lengthy chats with them, bedtime stories, special errands run, don’t. Ain’t gonna happen. The days of the perky friendly nurse in the starched uniform and cap from the ’50s and ’60s are long gone.

    That being said, I have no complaints about the care given my mother. She was reliably provided with the basic necessities like bathing, dressing and undressing, help with toileting, and meals. She was at no time neglected and we knew this, visiting often. I can only hope that I get the same when my turn comes (I’m 70).

    *Of course, all this was pre-Covid. Things might have changed.

    1. earthling

      That’s not a bad situation for those with lots of free help from family. For those who don’t have an extended family clan that survives them and can help, welp, tough luck.

  8. ambrit

    Ye Jackpot cometh.
    Sure, it’s snark, but accurate.
    For what it’s worth.
    First, this decline in medical treatment standards can be seen as a reversion to the historical mean of medical care for “the Masses.” Throw in some antibiotics resistant pathogens and we inch closer to a Robber Baron Era level of public health. For all you Globalist, Illuminati aficionados out there, a precipitous decline in the number of elders living in the society will free up resources for more “constructive and productive” purposes. (Not snark.)
    Second, the financialization of the Medical Industry has shifted the focus of the people working in the industry from care to profit. This needn’t be overt in the ranks of point of service workers. Just reduce the resources available to them to work with and reduce the actual worth of their wages and the knock on effects of degradation follow organically. As several of the examples above suggest, extra and not strictly necessary tests and ‘interventions’ not only kill off the patients quicker, but also pad the “bottom line” more efficiently.
    Third, the general shift of the public attitudes towards public institutions in general makes it easier for various elites to “manage” society. The despair and helplessness learned by people in their frantic and often futile battles against the Medical Industry leak over into their attitudes towards other public institutions. For example, the recent assault on the Union movement by the minions of the elites directly forces down the percentage of the general social budget available to the “lower classes.” The general defeatism building in the population helps undercut the support for the Unions. “Why fight when everything is rigged?” goes the question I hear often. Such learned helplessness makes control from ‘above’ much easier.
    I could go on, but I’m getting a bit depressed at the prospect and will retire to my Hermit’s Cave to meditate a bit.
    Stay safe! Fight hard!

    1. Old Ghost

      Ambrit ” Throw in some antibiotics resistant pathogens and we inch closer to a Robber Baron Era level of public health. For all you Globalist, Illuminati aficionados out there, a precipitous decline in the number of elders living in the society will free up resources for more “constructive and productive” purposes. (Not snark.)”

      Here in the States, those Globalists call themselves “Libertarians”. In the past they have been very open about “useless eaters” and what they think of them.

      I have not heard much from the Libertarians of late. They may be too busy cashing in the healthcare mess here.

      1. ambrit

        I’m wondering how the ‘Libertarian’ demographic skews age wise now. I wouldn’t be surprised to see that the ‘Libertarian’ cadres are ageing fast and succumbing quickly to exactly the social conditions they previously advocated for.
        To me, the glaring problem with ‘Libertarianism’ is it’s implicit assumption that all of it’s “members” will be the lucky winners of the socio-economic lottery. Alas, as the stealth adverts disguised as ‘contests’ aimed at kids used to say; “Many will enter, few will win.”
        In a truly Burkean social struggle, most of the population will “lose.” “Lose” in this sense means dying much younger than necessary. I wouldn’t be at all surprised to soon see a movement to restrict medical interventions during childbirth. What a ‘culling’ of the species that would bring about! In such a situation, “Feminism” is a gender survival tool. Just look at the early birth control agitators for examples of proto-feminism.
        Just one example:

  9. Space Station 11

    My grandfather died peacefully last night at the age of 95. He was at home, surrounded by his 13 children and a few members of hospice staff, and comfortable. Per reports from my mother, the hospice staff was consistently professional, caring, and an incredible aid to the family. There are yet good people and experiences with this service. I spoke with my mother at length last night and she was so grateful for the way his life ended. Tt wouldn’t have been nearly as calm and supportive without hospice.

    Fortunately, my grandfather made his wishes known early: he wanted to be at home, he did not want to go to the hospital for any reason, he did not want any tests or checkups. Even more important was that all members of his (very large) extended family were on the same page. I cannot stress this enough. So many times I have cared for elderly patients in the emergency department without clear end of life goals, or confusion and disagreement on the part of the family or POA. The medical system- from the medics who show up at the door to the physicians in the ICU- will always default to ‘do everything possible even if it seems futile’ unless there is clear documentation stating otherwise. I say this to defend the physicians and nurses who take care of these patients- without clear goals, end of life care becomes a tricky balancing act between “why aren’t you doing more for my sick family member??” and “why are you ordering unnecessary tests??”.

    1. cocomaan

      Sorry for your loss, but this is also good advice: have a plan. When I go out I hope that this is the way it happens. Or it’s sudden, like a thunderclap.

  10. Adam1

    It’s amazing how screwed up we seem to treat the end of life. It can’t be avoided and it’s often messy and or painful if a massive (fill in the blank) doesn’t end it for you instantly.

    My grandmother passed about 10 years ago. She was probably one of the first cardiac open heart patients in Upstate NY in 1971 (the year I was born); she had a heart valve replaced with a mechanical valve. 10 years ago her 3 surviving natural heart valves were failing her and she knew what that meant. She had a hard time maintaining blood pressure so she would frequently black out. One afternoon while trying to do some simple gardening she blacked out and did not come too right away. My grandfather did what any trained first responder does he called the ambulance. Thankfully she was only temporarily hospitalized – a couple days – however it was long enough to bring home a nasty stomach bug.

    Just to be clear, by this point in time my grandmother is very, very weak. A month or so prior to this we had been for a short visit – we could never stay too long with 2 boys 5 and under – and we had started out the driveway when I remembered I forgot my son glasses on the table so I quickly pulled back up the driveway and dashed inside. What I found was my grandmother was already climbing back into bed. It made me realize how much she wanted us to come by, but at the same time how much of a show she must have been putting on to seem as good as she always did.

    Well the stomach bug got really bad, but since my grandmother hadn’t blacked out or anything she made my grandfather promise to not call the ambulance – she wasn’t going to the hospital. Her best friend live up the road and was a retired nurse. Jane came down… my dad and my uncle came to her house.
    The end was not pretty, it was full of vomit and blood, but my grandmother died at home where she want to be.

    Where the system is so screwed up… Jane administered morphine to my grandmother without a supervising doctor. Jane was threatened with potential prosecution and the loss of her license (even though she’d technically retired).

    Nobody in the family blames Jane (not her real name by the way). Jane was a second mom to my aunts and uncles. And what doctor would have been available or in todays world even willing to sign up for what was the inevitable. Jane was basically in trouble because as a (retired) health care provider she should have called the ambulance so my grandmother could have died in the hospital with a dozen tubes stuck into her and all the other crazy things that happen in an emergency room. Which is what my grandmother did NOT want. She was very familiar with hospitals, she had volunteered for 2 decades in the cardiac patient unit!

  11. scott s.

    My 97yo Dad’s funeral is next week. I spent a year and a half at his place in New Orleans getting his business and property wrapped up at height of covid, then moved him out to live with us. He had no real issues other than his knees were shot and eventually he couldn’t stand any more. Last six months were general decline and eventually had a hard time getting him to eat / drink. Had to finally call EMS to transport to ER as he was getting dehydrated and BP dropping. At the hospital EMS would take him to (declining due to poor financials, now pretty much an ER with a few beds in a med/surg ward) all they wanted was to get a POLTS and DNR. Told them I have a POA and will be here every day, I can make decisions as needed. ER doc and nurse were actually better than I had experienced elsewhere. Hospitalist though got annoyed and argumentative when he was admitted over what they were willing to do for him. Begged and got an infectious disease doc (about the only specialist they had) to check his pressure ulcers. They administered antibiotics and hydration via IV which he responded to well, but the only follow-on they would offer was home hospice. I got the feeling they really wanted him out under 96 hours. The hospice nurse assigned I think did a reasonable job for my wife and me. We had been through end of life caring for my wife’s father with Parkinsons, so we were pretty self-sufficient. They gave me some morphine to administer orally, which I think they were kind of pushing. I did give him some the last day, not sure if it helped or not.

    The nursing staff at hospital I thought did OK. One nurse was very attentive in particular but some I only saw when the antibiotic drip ended and started beeping. The CNAs were good about turning him etc. I was there about 12 hrs/day, don’t think I saw the same nurse twice. But I definitely felt they wanted him out as fast as possible. That I guess is “the standard of care”, but you can’t refer to it as a death panel.

  12. LawnDart

    I’ve been remiss. I told Lambert that I would write this up, but after a charging-start, I have yet to complete the draft.

    In short, this is what went down (short-version):

    My step-mother, addled by dementia, was abandoned to the care of my father, whose own ability to care for himself is questionable due to both physical and mental issues. She was abandoned by both Mayo Clinic and the Barron County, Wisconsin, Adult Protective Services.

    She died, on the floor at home, without care in July of this year. Dementia and malnutrition were listed as causes of death. This, despite two referrals to protective services. The referrals to protective services came from my father’s doctors at Marshfield Clinic, and from a caseworker with the Barron County Aging and Disability Resource Center.

    While they weren’t 1%ers, my father and his wife were very well-off financially, had the assets and long-term care insurance coverage that should have ensured appropriate care and a dignified life.

    That didn’t happen. In my mind, what happened was a malignant, if not criminal neglect.

    I joke and say, partially because of covid’s toll on health and partially because of the effects of hard and stressful life, that for Gen X onwards, our 50s are the new 80s! Without a net. Without support. And without help, if needed.

    The draft, for what it is worth, will be submitted for your scrutiny in the coming weeks: what can I say, this was an inspirational post.

  13. David in Santa Cruz

    I’m quite moved by the post and the comments above. Thank you KLG and IM Doc for your honesty. Now that I’m on Social Security and Medicare I worry about what I’ve got to look forward to as I age.

    My own father died at age 91 back in 2014. About six years before he died he needed minor surgery to relieve an enlarged prostate. He had been a 21-year old Master Sergeant in the World War II Medical Quartermaster Corps — quite literally a Radar O’Reilly — and he had a healthy distrust of the medical profession. His Argentine-immigrant surgeon wanted to do the procedure outpatient, but there were complications and my father had to be admitted to the hospital after successful surgery.

    Then the nightmare began. He was in pretty poor health after 2 packs-a-day between ages 20 and 80 and had bad teeth. He looked like a vagrant and that’s how he was treated. The hospital refused to release him — until one night I got a call at 4 am from the night nurse who had tied him to the bed due to “Sundowners” syndrome. I rushed over to the hospital dressed for work — as a lawyer in a stylishly tailored-and-pressed Italian suit. The night nurse promptly shatt himself. Fortunately the surgeon showed-up shortly after — also in a nice Italian suit, I might add — and dragged me into a broom closet. “I’m going to pump your pop up with a bunch of IV’s to phony-up his numbers so that the nurses can release him. They’re terrified of you and want him out of here! Have your car idling by the door and I’m going to wheel him to the curb in about 45 minutes.”

    We kept pop at home from then on. He had another good six years before a mass in his larynx slowly choked the blood off from his brain (a biopsy would have killed him). During his final 2 days we had to move him to a skilled nursing facility because he was falling and hitting his head, but I pretty much stayed at his side until the end. The charming Filipino nurses where so impressed that the old guy had set up the field hospitals during the Battle of Manila in 1945 and treated him with great gentleness and care.

    I won’t discuss here how Wells Fargo refused to accept what they conceded was a valid Power of Attorney to use his funds pay for those 2 days of care, but I was able to rub their noses in it a few weeks later…

    1. ambrit

      And this is the “standard of care” available to those of us with adequate resources.
      The Depression Era Social Contract is well and truly broken.
      If the mood on the streets I see now is any indication, civil unrest is coming.
      The “Progressives” are afraid of Orange Haired Satan? Just wait till they get a gander at Trumpthulu, the More Effective Evil. (At this point, I consider the term “Trump” as identifying a generic sort of Conservative Populist. YMMV.)

  14. Boshko

    My 82yo father passed away in September after 2.5yrs with a TBI caused by a cardiac arrest. Those years were devastating and an enormous toll on my very healthy 78yo mother, who managed his care with exactly the devotion, attention, mouth and eagle eyes recommended by IMdoc.

    After a general slowing down brought him to the ER at UW hospital in Madison in september and after a battery of testing (my mother counted over 30+ on mychart) over 24hrs, it was clear no obvious ailment was causing his decline. it was just the incremental decline of everything shutting down and his body dying. She said enough, let him go in peace, and then had to wait a day for a hospital bed to open up for palliative care. (Meanwhile, rookie internists in the ER were already suggesting major heart surgery and other very costly and intense interventions.)

    Palliative care is now the gold standard for a dignified death, at least according to Atul Gawande’s Being Mortal, which was fresh in my mind. However, the application of that palliative care at a top-notch research hospital was wavering and inconsistent, always dependent on who was on staff that 6-8 hr period. There were also inconsistent visitation rules which prevented my entire family from being with him all together one last time. After a week on his deathbed in the hospital he was transferred to a hospice (Agrace) where he eventually died after 6 days. This was entirely covered by Medicare.

    The level of care was always fluctuating and without a family member who remained at his side the entire time, I can only imagine the neglect he would have faced (on top of translating for him as he resorted to his mother tongues on his deathbed while still understanding English and hearing perfectly). I thought a lot about the thousands who were forced to die alone at the height of covid, a horrific way to pass.

    One particularly frustrating aspect of the palliative regime was the insistence on changing his position in bed every 4 hrs. Besides always interrupting the peaceful climate we had managed to establish, each position shift caused excruciating pain for my father, who had a legendary pain tolerance even in his demented state. (Last spring he arrived at the ER after a fall at his nursing home and it was discovered he had a broken foot that he never once complained about.) The entire premise of palliative care was managing his pain! Yet they insisted, despite protests, on subjecting him to this painful procedure routinely, constantly interrupting his sleep to do so. How on earth does that reflect pain management and compassion and comfort? I understand the risk is bed sores, but the man was on his death bed on morphine. How can a bed sore risk trump the palliative priorities?

    As he was dying in his final days at hospice and was in obvious increasing pain, we had to lobby aggressively for more and larger morphine doses to help manage it. It was always a struggle.

    One central takeaway was the complete failure of the “traveling” nurse labor model. Without fail, the “travelers” always made errors, were not paying attention to details, and ignored or forgot about simple requests. And these hospitals now overwhelmingly depend on this system of labor as they’ve negotiated in bad faith with there own nursing staffs and unions. The enormous cost of “travelers” is going to cause a lot of hospitals to bleed money, precisely what the MBAs in charge thought they were cleverly avoiding–and did for a year, maybe–I’m told by an MD brother-in-law.

  15. Rob

    Thanks for this. We lost my mother(90) late September this year from metastatic colon cancer. One brother lost both of his in-laws (congestive heart failure and pancreatic cancer) in April and May (80’s). Another brother lost his father in law (80s) just a few weeks ago. I can say that our families experience with hospice care varied a fair bit, but family involvement definitely was key to improving the care received.

    In the case of my mom, she resided at a Franciscan Community care facility that included independent and assisted living/rehab . We were able to keep her in her apartment for hospice and hire private care for 12 hours a day(overnights) thru them once it was necessary. We were mostly lucky with wonderful care givers who were skilled, caring, and connected with the family. Not that everything went smooth or terrific, but they were honest and caring and offered helpful advice and suggestions for us who had not been through this process before.
    I would suggest seeking out a faith based community when looking for this type of home for parents/loved ones and ourselves at some point in the future.

  16. Tom Bradford

    In a referendum 65% of New Zealanders who voted, supported a Right to Die law which is now effected – End of Life Choice Act 2019 – and was ‘used’ 28 times in its first three months. The qualifications for invoking it are demanding – the law allows terminally ill adults with less than six months to live and enduring “unbearable suffering” the opportunity to choose assisted dying if approved by two doctors – but it’s an option I, now in my seventies, feel a little happier for knowing it is available although I still think it should be finally up to me rather than a matter of subjective assessment of doctors with their own moral views on the the subject.

  17. Chet G

    It’s hardly limited to elder care, but care for anyone who enters the medical establishment.
    My wife had a heart attack November 26-27 (a week after our last cat had died) and in hospital received reasonably good care, but the afterward is turning out difficult. The one expensive med prescribed ($500+), among the others, had a web offer of receiving it free on first usage. We weren’t told and paid the full price. Afterward (after release), at a general doctor visit, my wife asked for a Valium prescription but that’s a controlled substance. The general doctor prescribed something else which (via its caution notes and web checking) turned out to be not recommended for (a) women over sixty, (b) having atrial fibrillation, and c) having hyperthryoidism, all of which pertained. How cautious does one have to be?

  18. John Zelnicker

    Jesus F Christ, Yves. I am horrified beyond words at how your mother was treated. If it wasn’t criminal, it should be. No human being deserves that.

    Along with the other horror stories above, it just goes to show how far we have fallen and, as ambrit says, how broken is the social contract that used to sustain us.

    doG help us all, for we are so screwed.

  19. PCM

    Hmmm. Let’s see. American physicians are paid almost twice as much as the average for physicians in other developed countries — not because they’re twice as competent (they are definitely not), and not because medical school costs a small fortune in the US. No, it’s because the AMA, the state medical associations, the state medical licensing boards, and the various specialty boards work hand in glove to make sure the US never has more than a third fewer physicians per capita than the developed-country average. (Canada is even worse in this respect, but the fact that they have to deal with a public 15-plus-payer system generally prevents their incomes from surpassing those of their American counterparts.) It’s a classic labor guild restricting entry to jack up incomes, and it’s made medicine the highest-paid major profession in the United States.

    In most other developed countries, medicine attracts candidates who actually care about healing and alleviating suffering, plus of course a strong assurance of employment security. In the United States, the profession attracts candidates who tend to care more about how much they’re paid than about their patients. (I come from a medically connected family, and I’ve heard enough stories from professors who sit on med-school admissions boards and specialists who bitch about Medicare rates to be confident in making that assertion.)

    At any rates, Medicare rates are significantly lower than private insurance rates for most services and procedures that I’m aware of, and — surprise, surprise! — hospitals, clinics, and physicians prioritize scheduling, time, and attention to favor more profitable patients. Elderly patients are often an afterthought, because doing a proper job of caring for them “isn’t really worth it.” (I could cite numerous examples of how unengaged, inattentive, deferred care from specialists has made my father’s final couple of years significantly worse than than they would have been with proper care, but visiting hours at his SNF are about to end. Suffice it to say that they only reason he has to be at a SNF for recovery and rehab is because of second-rate care from a specialist and lackadaisical monitoring by nurses … at the “best” hospital in San Diego.)

    Exclusive national health insurance (national single-payer, Expanded & Improved Medicare for All, or whatever you want to call it) would solve a lot of our system’s ills, and providers discriminating based on how much they get paid is definitely one of them. (You can’t have national health insurance without uniform price-and-fee schedules.) The other side of the equation is that we need to increase the number of physicians by at least 50% to match our more civilized peers (and ideally to double it, to come close to matching Cuba). The limited amount of time and attention American physicians spend on each of their patients borders on malpractice.

    It’s without a hint of hyperbole that I routinely characterize the US healthcare system as an elaborate network of protection rackets (insurance companies) and extortion rackets (providers). It’s undoubtedly one of the most successful organized-crime syndicates in the world, netting a skim of around $1.25 trillion a year, currently (above and beyond the fair cost of care, based on expenditures in peer countries). With that much dosh to play with, pennies on the dollar are enough for the Big Health syndicate to own politicians at every level, and to spend enough on direct-to-consumer advertising and underwriting to call the shots on healthcare coverage in our media. And that’s why we’re not going to see any improvement at all in American healthcare absent something cataclysmic, like a violent popular insurrection or a devastating defeat in a world war. Media and government are working for the criminals, and it’s all “legal”!

  20. Stephen

    This is such a difficult subject but also a really important one.

    Things are no better in the UK, as you might expect. My father passed away on Christmas Eve seven years ago aged 89. The final passing was in a private care home and I must say that they were very professional and did everything that one could expect. Plus more.

    The health bureaucracy was less good. It was clear that he was in his final days but the District Nurses wanted him moved to a local hospital with all the drama that would entail. The prime reason was not so much to help him but rather to move the problem of an impending death away from them. No doubt they were worried about being sued and so forth so it is easier for them to say they have transferred a terminal patient to hospital. In the end, they had to relent and the local GP was fine with it.

    I do believe too that we need a different attitude to death. In his final eighteen months my father was in and out of hospital (mostly in). Six months before he passed he suffered kidney failure and a heart attack. He was rushed from the care home to a hospital in Stoke. I rushed home from a meeting in San Francisco and he then stayed in hospital for eight weeks. He was bed ridden though, also diabetic and suffered circulation issues in his legs. There was talk of amputation to resolve that. It was only when I spoke to the chief surgeon in the hospital who advised that he might not even survive amputation that it became obvious that nature needed to be allowed to run its course. The bureaucratic phrase for this though is much more along the lines of medically he is cured! When it actually means the opposite but is designed to protect the hospital, I guess. More importantly though, my father had no desire for his leg to be amputated and was totally against the idea. So he was discharged back to the residential care home.

    My main issue with the hospital was how compartmented everything was though. One team / ward seemed to deal with kidneys, then another with diabetes. So you were involved in hand offs, which all extended the treatment time. I do think that western medicine generally is far too focused on point solutions and not on the overall patient.

    I guess what I am trying to say in a long way overall is that his last six months or so of his life were very low quality. The hospital worked wonders to stabilize him when he had his heart attack and kidney failure, given the context of an 88 year old, frail, already virtually bedridden diabetic. But, to what end? Would it have been better to let him pass then? One hundred years ago there would have been no choice. Much of the wonders of modern medicine have been to make it possible to keep very frail people alive slightly longer. Huge moral issues if we do not do that too, of course. Very difficult questions.

    1. Stephen

      Just as a further reflection on contemporary attitudes.

      After his passing, the GP called specifically to discuss the primary cause of death for the Death Certificate. He felt it was old age (with secondary medical issues such as renal failure) but wanted to check with me. He confided that many relatives push back on old age as a cause.

      Maybe we are not very in tune with nature today.

  21. Anders K

    I’m so sorry to hear your story, Yves.

    My father died here in Sweden in early August. Fortunately, he got very good care in the home from the county nurses, with a bi weekly visit from the doctor that worked with the end of life care team. Me and my brother had the privilege to be able to be there during the last two weeks of his life, as he was rapidly declining.
    I came down on Thursday (noting how thin he had become when I hugged him) and on Sunday when my brother arrived, we had to assist him with walking.
    He became worse and worse, day by day – losing energy and only really aware during the morning. He still wanted to sit out on the porch and smoke cigarettes, though! And told us how he and mom had met, about his first car… sad but beautiful in retrospect.

    I remember thinking to myself how horrible seeing a big, tall man decay in such a manner was, and how much worse it would have been had I had to care about big health care bills, or whether my work would have given me time off.

    It is really one reason I don’t want to leave Sweden, as we still have the remnants of socialised health care – and yes, the reason my father got such good care might be in part due to my mother being a former district nurse, with the connections that implies, but that wouldn’t have gotten any care that’s not already budgeted. I’m a bit worried about the care that she will get, towards the end of her life, as neither of us siblings live near. If it’s soonish then her friends and relatives will help out. If not…

    I really feel that care will always need rationing and triage: putting profit in there will not help the situation, no matter what people may think.

  22. CanCyn

    First of all, my condolences to all. Reporting from Ontario. If I wrote about my parents’ and in-laws’ hospital experiences at the ends of each of their lives, the good (not so much), the bad and the ugly, it would be longer than all of the above posts combined. To be sure there was some good, especially for my Mom and FIL, who both died in 2001, about 6 months apart. Almost all bad and/or ugly for my Dad and MIL who both died in 2016 about a week apart. I speak mostly of hospitalization and, for my Dad, long term care after a stroke which left him paralyzed. Suffice it to say I share Yves’ anger and her belief in the bigoted ageism of the system. So many examples of neglect and lack of attention to the problems of frailty in the elderly. And assumptions about what is wrong, or not wrong, without much effort at diagnosis. I have younger friends who have health problems and experience much better care than my elderly parents and in-laws ever did. While I remain somewhat traumatized (mostly due to my Dad’s experiences in long term care), over the years my anger has somewhat eased but my trust in the medical system has never returned. The public health care scandal that has been our response to COVID has only re-traumatized me and made me even more determined to stay out of hospital. Truly, except for perhaps a broken bone, I cannot imagine wanting to go to the hospital for anything. I end by saying that maybe if I met doctors like IMDoc, I could find some faith – thank you IMDoc for all that you do and the depth of your caring, empathy and humanity.

  23. Joe Well

    The amazing thing is that this is the immediate future of many 70-somethings, and yet they have been effectively propagandized ignore that reality in favor of one idiotic distraction after another: Russiagate, J6, and whatever the equivalents are for the Fox News crowd.

    This was what I saw volunteering for the Bernie Sanders campaign: 20-somethings and 30-somethings worry about student debt and rent, 40- and 50-somethings worry about rent and the cost of buying a house, and they all worry about the cost of living relative to wages, while many (not all) 70-somethings would talk about “electability” or some other thing only mainstream media talks about. Some would mention healthcare only if they had had a recent bad experience with it.

    1. CanCyn

      Can’t disagree Joe Well. Most people I know don’t see the problems in our hospitals and healthcare system. When I relate my parents’ stories they assume bad luck, and that things are fine for the most part. They love Trudeau & hate the truckers, the Russians are evil and feel sorry for Harry and Megan.

  24. Irrational

    My father-in-law died this November while he and his wife were on a visit to see us in Europe and go on what was supposed to be a dream holiday. We knew it might be the last one as he had been diagnosed with a very aggressive cancer and, thanks to service in Vietnam, had just about everything Agent Orange could cause.
    It also meant the VA medical system took care of him in the US.
    I cannot comment on the standards of care at the VA. I know is that they were thrilled with the care at Moffitt – where they were sent for his cancer – and my mother-in-law remarked positively on the care here in Luxembourg – especially that the staff washed and shaved him every day.
    Here their travel insurance – concluded with the US arm of a large European insurer – was supposed to cover the cost of the hospital, but they confirming 4 hours after he died that they would pay. This came after a week of haggling with them over transport back to the US, where they sat on paperwork we sent them and asked more and more questions. Ultimately, having been stable during the haggling, my father-in-law deteriorated rapidly and died. Now, of course, my mother-in-law will have endless hassle with the VA getting a survivor’s pension because death certificates over here do not mention the exact cause of death and the VA has willfully ignored the long doctor’s report that we sent them.
    Very traumatic process.
    Let’s see how long European healthcare lasts though given the astonishing incompetence of our leaders.
    If you are contemplating to travel internationally: make sure you travel insurance covers proper medical evacuation, not just commercial flights possibly attended by a medical professional (not kidding!) and make sure that trip cancellation and interruption figures are high enough to cover replacement flights booked at short notice, because the medical part of the travel insurance only covers the person who is ill – for everyone else this is a trip interruption.

    1. CanCyn

      This is remarkable to me: “and my mother-in-law remarked positively on the care here in Luxembourg – especially that the staff washed and shaved him every day.” I believe that part of the bigotry experienced by elders in hospital, at least in Ontario, is the lack of support staff for the medical personnel. I don’t believe my father was ever offered a shave while in hospital for his stroke and the many other medical problems he suffered in the last years of his life. A perfunctory sponge bath was it, and certainly not daily. There are no personal support workers or nursing assistants in hospitals anymore. Orderlies exist only to transport people to tests, X-rays, etc. There was no one at the long term care home where my Dad lived who could help us transfer him from his wheel chair into the car (which meant that two of had to take time off work whenever he had a medical appointment off site). On my Dad’s floor, there was only one PSW on duty at night (for 20-25 people), of course not everyone could be helped to go the bathroom during the night, it was not the PSW’s fault. In hospitals, nurses were stretched and tired way before the pandemic started. Yes, we see them gathered at the nursing station looking like they’re doing nothing but they work 12 hour shifts and do everything from empty bed pans to administer medication, I suppose they have to pace themselves. I had some encounters with nurses and doctors who really didn’t seem to care but I mostly blame the system for the awful way many people are treated in hospital. The many times my Dad had to go to emergency, ER was filled with elderly and people suffering from drug overdoses. Emergency was set up to deal with broken bones, heart attacks and strokes not to diagnose and treat elderly who are ill but not acutely. We need separate places for those with drug overdoses and our elderly who need medical attention beyond what a GP can provide. The moment we started counting costs and letting the bean counters do their thing, we started losing good healthcare. Thank you Neoliberalism.

  25. johnnyme

    This kind of shoddy end-of-life care doesn’t just happen to the elderly. My younger brother, dying from cancer at the age of 41, was also neglected in the hospital.

    After suffering a stroke while in the ICU shortly after his second brain surgery, he returned home but ended up back in the hospital a couple of weeks later and it was then (and shortly after his employer let him know they were cutting him loose) that he made the decision to let go and that he didn’t want any further interventions. I went to visit him one day and found him in his hospital bed in a uncomfortably contorted position tangled up in his bed sheets. It was obvious that none of the hospital staff had checked in on him in hours — the staff couldn’t care less because he was dying and he didn’t matter anymore.

    His life savings up to that point allowed us to find and pay for a top-tier hospice facility that took really good care of him (and us) at an eye-watering daily rate so at least he was able to go out with dignity.

    This was back in 2011. I shudder to think how much worse things have gotten and how much more astronomically expensive that excellent hospice care would be today. At the rate things are going, I’m really hoping that when my number is called, that I go quickly or I’m lucky enough to be in a civilized country when it happens.

  26. Acacia

    I would be curious if practices are better or worse with the moderately and very old in other countries, particularly in Asia.

    As you know, extended families still exist in many parts of Asia and it often becomes the responsibility of the children to look after their aging parents. For the particulars, I can only speak to the situation in Japan. E.g., the mother of a friend in Tokyo was disabled by cancer in her mid-80s. The cancer was treated and stopped, but she became confined to a wheelchair. Friend and her younger sister had to make some fairly significant changes in their life routines to look after their now-disabled mom. They are a modest middle-class family, without money to put their mom into an old folks’ home, and my impression is that that has not been very common in Japan — the sense of duty w.r.t. filial piety is still strong —, though it is happening a little more than it did in the past.

    Faced with the aging population, Japan introduced a Long-Term Care Insurance (LTCI) system. As I understand it, the basic offer is that the govt will pay 90% of the cost of medical services, i.e., a 10% copay. In my friend’s case, the city govt provided in-home care, such that her mom was visited several times a week by a couple of elder care workers dressed like nurses. They would provide a bath and regularly take her out on a shopping trip to a local market. The bathtub came in two pieces. ECWs would carry it upstairs, bolt it together, fill it with hot water, and then disassemble the whole thing and take it away in their van. In addition, another van with a lift periodically shows up to take friend’s mom to a local clinic for a check-up and to address any other health issues. I didn’t ask about the cost, but again this is a modest middle-class family so my impression was that it was fairly reasonable. Given the current trajectory of the country, though, I would expect the ruling LDP to try and scale back medical services, as they further neoliberalize the economy.

    Overall and despite the burden on my friend, I was fairly impressed by the services that I saw, and couldn’t really imagine similar in-home care being provided to middle-class elders in the States.

    Then again, my experience with trying to sort out elder care in the US was pretty negative. As my own mother neared the end of her life, she began to refuse banks, utilities, clinics, doctors, etc., leading to various problems, e.g., power getting shut off, phone calls from law enforcement, etc. Social workers would visit for a few minutes, but they always reported that “your mom seems fine”. For her part, my mother was dead set against going to “a home” and in any case there was no money for that. Finally, there was some discussion of a conservatorship, and I had one meeting with a law firm to explore this. It became clear that this sort of thing was really their bread and butter, they wanted at least $50K to initiate the conservatorship, and then additional unknown amounts each year to maintain it. I learned that the law office had a “partnership” with an old folks home, such that the lawyers would also handle the placement of the elder parents in the home, which would then charge something like $5K+ per month for “care”.

    A picture began to emerge in which the lawyers would scare the children with the possibility of their parents going berserk with credit cards, running up crazy debts, to get the children to pull the trigger on a conservatorship, and then the lawyers and old folks’ home would press for liquidating the estate in order to pay all the legal fees and very steep elder care costs. The whole arrangement began to look rather predatory and I never spoke with the lawyers again.

  27. PaulArt

    I dont know if this helps but nursing staff don’t discriminate when it comes to delivering poor care. My wife and I spent about 2 years after our first daughter was born with multiple heart defects and had to undergo two surgeries about 8 months apart. We were in USCF for the first surgery and I remember how understaffed the ICU was. I left a soiled diaper on a table and asked the nurse to take it out and it was still there the next day. They once forced us both to go and sleep and that they would take care of our 2 month old recovering from surgery. We did – but I could not sleep and after a couple hours I came back to see my daughter crying in an electric bouncer all alone in the room. I wrote long letters to all the top nibs at UCSF and nothing happened – nothing was replied to. The second surgery happened in UCSD as we had moved to San Diego at the time. When my daughter needed her second surgery at that time I wanted to take her back to UCSF thinking the surgeon who operated on her the first time was the best person to do it again. At this juncture the UCSD Pediatric Cardiologist under whose care my daughter was took me aside and told me gravely -‘why are you taking her back there? they should have fixed her correctly the first time around – let us do it here – we will do a good job”. I am glad to say that I took his advice and my daughter is now 25. I think back with stupefaction on how naive and wonder struck I had been with the UCSF team. I am sure this is the experience of a lot of us who know so little about these matters. The healthcare profession in this country is a pampered lot. I do sympathize with nursing staff but expecting the ‘free’ market to solve issues of labor supply is unrealistic. The paucity of Engineers was solved with the H1-B. I think we need to do the same for Physicians and Nurses. I know we import a lot of nurses but it is curious why this has not solved the issue – unless the entry of PE and Hedgies into the healthcare sector is causing the lack of enough people to do the work.

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