Yves here. This article raises an important topic, not just societally but in terms of government responsibility. Richard Murphy below depicts the UK as having threadbare palliative care for the dying. US hospice care in theory is more robust. From Wikipedia:
Under hospice, medical and social services are supplied to patients and their families by an interdisciplinary team of professional providers and volunteers, who take a patient-directed approach to managing illness. Generally, treatment is not diagnostic or curative, although the patient may choose some treatment options intended to prolong life, such as CPR. Most hospice services are covered by Medicare or other providers, and many hospices can provide access to charitable resources for patients lacking such coverage.
With practices largely defined by the Medicare system, a social insurance program in the United States, and other health insurance providers, hospice care is made available in the United States to patients of any age with any terminal prognosis who are medically certified to have less than six months to live. In 2007, hospice treatment was used by 1.4 million people in the United States. More than one-third of dying Americans use the service.
I do know of two people who have used hospice care, in addition to Jimmy Carter. However, at least among my parent’s circle, it does not appear to have been recommended when warranted. My father has a terminal illness that took an extremely painful and debilitating turn. He kept his doctors informed and they gave him a treatment that accelerated his decline. He shot himself because he could not take it any more (and he had very high pain tolerance). A friend of my mother has had and successfully beaten back breast cancer a couple of time. In her late 70s, it came back and her lungs started filling with fluid. She was not willing to be repeatedly intubated and managed to accumulate enough meds (not sure it painkillers or sleeping pills) to kill herself. A third, who had a poor prognosis and was in a nursing home, refused food and medication.
My father was not referred to hospice care (which can be provided at home) and I am pretty confident neither of the other two examples above was either. So there seems to be a gap between the theoretical and actual level of hospice care in the US.
Needless to say, these examples also show that the lack of end of life care leads to suicides. So do we want formally assisted dying or death by the best readily available means? One of my friends joked that at least my father was a hunter, so he knew how to do the job. Only 85% of gun suicide attempts succeed. There have even been studies of the outcomes of failed suicide attempts via gunshot to the head. I will spare you details.
Of course, it is fair to worry that the availability of euthanasia will lead to even more covert and even overt implementation of Lambert’s Second Principle of Neoliberalism “Go Die!”. But people are plenty capable of responding to actual or perceived “Go Die!” pressures on their own. So there seem to be no neat or clean answers here.
By Richard Murphy, part-time Professor of Accounting Practice at Sheffield University Management School, director of the Corporate Accountability Network, member of Finance for the Future LLP, and director of Tax Research LLP. Originally published at Fund the Future
It was only a few weeks ago that the Telegraph reported that:
The state of end-of-life care in the UK means the country is not ready for assisted dying, Wes Streeting has suggested.
The Health and Social Care Secretary has previously voted in favour of having an “in principle” debate on the ethical question, but declared himself “conflicted” on the issue.
Now, the House of Commons is to have a free vote on the issue, and nothing has changed.
As a matter of fact UK hospice care is wholly inadequate, which is not a reflection on those charities seeking to provide it. What is absurd is that this is thought to be an issue for charities to deal with.
It is equally true that palliative care within hospitals is underfunded. It would seem as if the UK state is willing to invest in us as long as there is a chance of returning us to the workforce, but when the time comes that we will, inevitably, not do so, it no longer cares.
This worries me in itself. Without any discussion abiuyt assisted dying, palliative care needs much more investment. People should have the right to die as painlessly and with as much dignity as possible. When most of us will die over a period of time in our old age, that seems like a pretty basic thing for the NHS to do, and it does not do it well at present.
There is more to this than that, though. Nor do we have proper social care plans for the elderly either, and with Labour having abandoned plans to cap some social care costs for the elderly needing residential care, matters have made no progress there.
Now, there is a discussion of assisted dying. Excuse me for being cynical, but I do see a connection, and I do not like it. Pressure from some families on elderly relatives to consider this route when otherwise the value of any potential inheritance might fall, potentially significantly, will grow. Evidence from other countries suggests that this is what has happened. And that is decidedly unhealthy.
For once, Wes Streeting was right. When the option of a dignified natural death is available, then we might discuss assisted dying for those who want to consider it. But right now, austerity is denying us that opportunity. That means we cannot afford the risk from assisted dying. The required checks and balances are not just medical. It is also that real alternatives have to be available to those facing their own deaths, and right now, the economics of denial is preventing that. When that is sorted, there will be time for this debate. But we are not there yet.
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US hospice is changing. A relative was offered hospice, soon after hospital admission for an acute problem, along with veiled threats that Medicare may refuse ongoing hospital costs, if he refused aggressive care. He was presented with a quarter inch thick contract, written in legalese (yes, while ill in the hospital) to sign. Having negotiated with the hospice previously, I was aware that his expensive breathing medicine would be discontinued. A shift to profit based hospice decisions, would be suggested, where medication allowance is based on cost rather than comfort.
Wonder how Elon feels about this issue?
(Seriously kidding, but he somehow does seem to be a ‘thought leader’…)
I’m trying to get my affairs in order while I have some modicum of health and brain remaining — but I bog down on sustainable ‘green’ body disposal. It does not seem to be allowed in my neck of the woods, closest option is 700 miles in any direction, which in addition to not being sustainable involves inter-state travel of a body, and we gotta regulate the heck outta even that bagabones.
Lined caskets, lined gravesites, carbon- intensive cremation— nothing resonates. It’s a huge business opportunity- surprised Gates and Bezos aren’t all over it.
As to palliative care, it seems pharma grade fentanyl must not be too expensive to produce, as the law enforcement types would shout from the roof tops.
We are one funny animal.
I’m sorry to hear that you’re having to make those decisions. While I can’t say I know what you want, cremation and spreading of ashes does means no big grave taking up space, whereas a body burial means returning to the soil (eventually) – maybe a change of perspective could help you decide? Going super green is a bit too hard; it’s early days yet.
All the best for you in your twilight time.
I have had my first conversation about assisted dying with my primary care person, a NP.
If my current level of pain can not be addressed without leaving me in a permanent fog I will have the choice of being non functional due to pain or non functional due to painkillers, existing rather than living.
Which is not acceptable.
I have lived with chronic severe pain for more than a third of a Century, I have limits to what I can endure and I know what they are.
At present I am seeing a pain management specialist who is attempting to alleviate the pain caused by damaged discs at the L4-L5 area of my spine, they are impinging on two nerves which makes walking extremely uncomfortable.
In addition I have arthritis in both hips, plantar fasciitis in my left foot and a sciatic nerve in my right leg that has been inflamed for 34 years.
Assisted dying is, in circumstances such as mine, a rational alternative and one I consider seriously.
YMMV and I hope it does.
So sorry to hear, Tom. On a personal note, I have (less severe, usually) personal insights into a herniated L4/5 disc. However, with regard to your YMMV point, I’m gonna stick with the published research I did in end-of-life care which showed that you’re not as different from most people as you might think.
I dislike statements about “family pressure” being a large factor unless I see the references to peer-reviewed research using surveys that ensure incentive compatibility – in short, is there maximum incentive to answer truthfully and not be able to have their cake and eat it. I did such research (chapter 7 here) and found that personal control over decision-making strongly dominated accommodating family etc, both at the sample level and among all key clusters we found.
Interestingly, there was one question we put in that was by orders of magnitude the strongest predictor of “being a person who wanted a dignified, if necessary assisted, death without the kitchen sink being thrown at you” – Have you ever personally witnessed the end-of-life care process of a friend/loved one? Virtually everybody who had done so had extremely strong views against being kept alive when their quality of life was terrible. One of the strongest correlations I’ve ever seen and why I wrote a few months ago elsewhere about we have good tools to distinguish people already. Plus that survey (almost 1200 older Australians, for whom I could calculate odds ratios of “this statement over that statement” for EVERY individual participant) got me the largest proportion of free text answers at the end that I ever got in almost 20 years of running these surveys. By a LONG way. Virtually every single one expressing a desire to tell their family etc their wishes to ensure their views are respected. I remember being told during my PhD that the average time from publication in health services research to meaningful real world application was 14 years so I guess it’ll be 2029ish before we routinely see end-of-life care plans of the type we illustrated could properly elicit ex ante views based on easily produced information about the process. Such information should be the REAL process of intubation etc, and should NOT be based on what fans of Chicago Hope or Grey’s Anatomy believe :/
The system works pretty well here in Queensland, I think the idea is to have your ducks in a row as early as possible. I have my wife at home under palliative care now and get regular visits from nurses allied to the palliative care team. She has end stage emphysema and it is starting to really crush her now. I administer the pain and breathing medications. The hospital she is registered with has a nice unit for me to stay at in the palliative care ward when the time comes. We get a lot of support from both State and Federal governments.
The legal system is part of the problem as you need to tie down their wishes from all interference. I went through it with my father 2 years ago after he couldn’t recover from a heart attack and my sister in law with pancreatic cancer, the pain control when they get you into hospital is much better than you can achieve at home. Morphine does the job but it helps that Australian doctors have no obligation to perform futile treatments whoever tries to interfere.
Get your EPOA tied down tight and purge it from all external influences from the past and make an Acute Resuscitation Plan with the hospital of choice. Do this as soon as is possible, don’t be in denial because you will cause your loved one unnecessary suffering.
Terry, thank you for the detailed and thoughtful answer.
I helped care for my Father during his last 18 Months of life, he could not let go and he died a slow, extremely painful death.
It is about quality of life and for me being doped to the eyeballs is not acceptable.
I went through that for three years after my spinal injuries, it was a different equation at age 38 than it is at age 71.
Assisted dying is an option that I am very glad to have, I plan to stick around for as long as the game is worth the candle.
And when it is time to walk the plank I plan to do a backflip at the end with a two handed middle finger salute.
Tom, I think you were the person who traded Moose Milk stories with me here in comments a few years ago. If so, us moosers stick together!
I have semi crushed vertebra at
T 11, L 3 and L 4 along with Osteogenesis Imperfecta. My issues are similar. I do have a piece of info that may be interesting to you regarding pain management though.
Please email me directly at kitties101@yahoo.com if you would like the info. All of the rest of you (including alphabet spies and bots) please be nice. That is my real email. I am hopeless with tech and have no clue how to hide it from bad guys.
Ana in Sacramento
We have right to Death with Dignity in Washington State, functionally constrained by the fact that most of our hospitals are ‘owned’ by religious entities. Even though their facilities are really ‘owned’ and managed by large real estate interests. But, the prohibitions against the right to control our own bodies are in force.
Advice is to make copies of your Advanced Directives, one posted in an obvious place in your home and one in your car.
I very much disagree with the idea that “When the option of a dignified natural death is available, then we might discuss assisted dying for those who want to consider it.”
The point about assisted dying is that a health condition can belie
dying with dignity’ on the part of the sufferer. Terry Pratchett killed himself rather than face a continuing decline into a dementia which would rob him of even the memory of good experiences. He did not wish to face such a decline in cognition and memory. Had he had the option of assisted dying surrounded by friends in a hospice, he might very well have taken it. Hospice care does not have to omit assisted dying as part of dying with dignity … but the latter is often not a choice they are given. As it is, he opted for suicide at home because he had no such alternative.
The point, I think, is that if assisted dying is introduced before palliative care has sufficient budget, people will not have the choice of assisted dying at the end of a palliative process, they’ll get pushed to assisted dying with no alternative.
I’ll expect the US to.be the canary in the coal mine, with how healthcare works (or doesn’t) for poor people there.
I personally have a great second hand experience of palliative care in Sweden; my father got to die in his home, pain free (thanks, weird portable Walkman alike morphine device!) and with the family and relatives having seen him just before his end. I got to hear the story of how him and mom met (twice) and how her mother was the architect of their getting together the second time. I had the privilege to help him out on the veranda for his late night smoke.
It still hurts when I miss him, yes, but even during the bad times, when he wanted to get up four times during the night for his smoke, I recall thinking “OMG what if this had been the US and him having little to no health insurance” – I’m pretty sure my dad would have suicided, assisted or otherwise, rather than being a burden.
I could easily see a doctor convincing him to suicide rather than being a burden. And once the healthcare system starts putting pain medications behind “making the right choice” – well. At least I’ll take an early exit rather than living in such a world.
My 91-year-old mom had a 2nd broken hip last April. She was quite debilitated. Since Wisconsin is not a right-to-die state, her children collaborated to read all her legal documents. My mom did sign something about using all methods to treat pain up to and including death. She lost 20 pounds which was more than 15% of her typical weight. She appeared to be suffering. She was talking to disembodied people, deceased relatives. She was angry. We were never offered hospice. Ironically, and blessedly, it took her 6 months (of just lying in bed, as far as I know) to recover from anemia, broken hip, delirium (all combined with the dementia). She is now wheeling through the halls of her nursing home, skinnier but apparently healthy for her age. She ended up with legs the same length so she started getting up out of bed on her own, alarming staff until we surrendered to her unceasing willpower.
It is confusing that, while she said repeatedly that she was ready to go, including on the day of breaking her hip, she also says on a recurring basis that, if she feels OK in her body, that she is willing to keep going.
While I live in a right-to-die state and fully intend to take advantage of it if necessary, I wonder if my siblings and I were a little gung ho to try to speed up her demise. I wonder if there is a control issue: the not wanting mom to suffer, but also not wanting the remaining family to become emotionally, financially drained, etc. It’s an interesting thing to contemplate. I’m certainly more knowledgeable after having witnessed the situation with my mom.
I know it may seem like an insulting comparison, but one of my cats was like that when he was dying of cancer (the terminal phase was about a month). There were several times he was in such bad shape that I scheduled the euthanasia session with my vet the next day. But then when those times came, he would hide in the closet. Needless to say, finally he was too debilitated to do that any more.
A lifelong friend got a stage 4 cancer diagnosis and refused all treatment except pain meds and was compassionately assisted by home hospice care for the two months he lasted. The service was a bit spotty at times, but his many friends pitched in, and the final weeks were as pleasant as could be expected. This was in a southern U.S. state but in a bright blue city therein with good support services that had been built up around the AIDS epidemic.
I think it is a crap shoot whether or not one gets good treatment when needed. In my friend’s case, I think the fact that he was such a fun person, even at the end, that the hospice aides enjoyed coming around.