Social Question

CWOTUS's avatar

How can we change American attitudes toward "last months" of life?

Asked by CWOTUS (20430 points ) December 29th, 2012

This question is prompted partly by a recent story on 60 Minutes that I didn’t pay a great deal of attention to, but I’m aware of the issue. It’s also prompted – more – by my close association with my elderly uncle.

The national issue is that Medicare (from the little that I gleaned from the 60 Minutes story) pays a huge percentage of its total outlay caring for the elderly in the final month or two of their lives. The national question, distilled, is “How much is a month or two of bedridden, pain-filled, insentient or barely sentient life worth?” Consider that at this point in some unfortunate people’s lives, they are permanently supported by non-portable machines: ventilators, respirators, dialysis machines, heart monitors and machines that I can’t even name. And the patients are not improving or expected to improve. Further, unless they have DNR orders (Do Not Resuscitate) or other specific instructions to staff regarding prohibition of “heroic measures” to save their lives (and those instructions are followed, which isn’t a given), they may be “rescued” at the point of an otherwise peaceful death and kept alive indefinitely – for what purpose? Even worse from a budgetary point of view (and yes, life does come down to economics sometimes), people on Medicare are not prohibited from any service that might “enhance” their lives in a “recommended medical” way because of cost. So people in this condition can receive joint replacements, heart and other organ transplants and other procedures irrespective of cost (or expected long-term prognosis) even in the near-certain knowledge that the person will die within a month or two, and nearly 100% within a year.

On a personal note, some of you know that last winter, and again this winter, I have moved in with my elderly uncle (barely ambulatory, occasionally senile, incontinent and not enjoying his life at this point) while his daughter and son-in-law leave the state for their own much-needed time off. Last year he was recovering from a lung infection and mesothelioma that had him in the hospital for a couple of months in the summer, and has taken him nearly a year to “recover” from. He has frequently, in his entirely lucid moments, wondered aloud, “Why can’t I just die?”

I second that.

I’m not about to murder him, and he has not specifically requested assistance with suicide, so I haven’t made (and I’m not asking for!) any plans with that. But if people saw me keeping a dog alive in this condition they’d rightly call me a monster.

Why can’t we let people die in peace any more? Why can’t we recognize that sometimes the “temporary problem” that Voltaire noted (“suicide is a permanent solution to a temporary problem”) is that “it’s time for life to end”, and allow or even encourage human euthanasia? I’m all for palliative and hospice care, but our American attitude towards death is somehow obscene.

Thoughts?

Hey, it’s in Social, so feel free to include jokes. At this point I’m recognizing what a joke life can be (a dirty joke sometimes), and I’m ready for a laugh.

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11 Answers

jaytkay's avatar

Dr Kevorkian made the best effort from any American ever, I believe.

I can’t solve the question, that’s just an observation.

wundayatta's avatar

I am in favor of doing a kind of benefit analysis for health care utilization. It seems stupid to offer a knee replacement for a person who has only a few months to live and may never get out of bed again. Similarly, why do a course of chemotherapy that lasts six months for a person who isn’t expected to last two months?

But are these calculations always that obvious?

Children often feel horribly guilty, and when their parents are dying, they feel like they have to do everything they can for their parents. The only way around this is some kind of document made while the person is still sentient saying what they want done under what kinds of circumstances. Inevitably, the circumstances planned for are not the circumstances that appear.

Planning for death is very difficult in our society. My parents wanted to know what we thought of them subdividing their property for sale prior to their moving out of their house. The neighborhood is changing, and I wondered why they would let even more houses be built near them. Wouldn’t that make things worse? Don’t they want to stay in the house as long as possible? Yes they do, but they know we won’t be bothered with subdividing the property and making as much money as possible from it. We’ll just sell it and be done with it, leaving maybe half a million on the table.

I dont know. My Dad can’t stand that idea, somehow, even though we’re the ones who would either have or not have the money.

Are they going to move to an assisted living facility? Hard for me to imagine. They’ll live at home until it’s too late, and then god knows what we’ll do.

And we’re a relatively educated family. Doesn’t matter. We see the shipwreck coming, and it isn’t any easier to make these decisions. They are, quite simply, impossible decisions.

So what it will come down to is money, and even then, even with huge budget deficits, no one is willing to deny good old mom and dad anything they have earned. We can’t face saying goodbye. We must prove how good we are by doing everything we can for them.

This is not a rational thing. I don’t think it can be made rational. These are emotional decisions and they will be played out on a case by case basis, with all kinds of unanticipated side effects. And I guess I think that I have bowed to the inevitable. Perhaps, since we can’t make these decisions rationally, we shouldn’t make them rationally. We have to trust the process. We have to feel the effects of the insanity, and live that way for a while before we can decide what is the truly sensible and ethical and humane thing to do.

hearkat's avatar

I agree with much of what you say. I find that a big issue is also with the families who won’t let their loved ones go. On social networks, I see people requesting prayers for their older family members who are hospitalized and undergoing surgery, and they seem so distraught. I find that people in the US seem to have such a denial about losing others in their lives to death – even with pets they get all crazy. We know the average life span of people and domestic animals, why do we fight beyond reason to keep them alive? I also ponder the “pro-life” people’s arguments about people shouldn’t be playing god – but isn’t the same true when we pull out all the stops to keep people artificially alive?

As for the economics of it all, I saw a recent article that the dwindling population in the US is going to be crushed by the cost of these aging baby-boomers… I’ll see if I can find it.

hearkat's avatar

Here it is: Why the falling birth rate is bad news for my 2-year-old son

I’ve also been wondering about what health care is being offered to prisoners that have been sentenced to life in prison… what if they get cancer or some other chronic or terminal disease? Are we paying for chemotherapy or dialysis for them? I honestly don’t know, but it’s along the lines of the societal costs of end-of-life care.

CWOTUS's avatar

Unfortunately, and as awful a thing as that says about us, I think that @jaytkay is right: Dr. Jack Kevorkian, even as tacky and tone-deaf as he could be from time to time (most of the time, in fact), and seeming to deliberately court publicity and contention where it might have been avoided, has had the most rational long term say about the topic.

I do seem to recall a governor of Colorado (Romer?) who had a 15-minute cycle of national fame when he coined the phrase about people’s “duty to die”, which sounds awful but makes more and more sense as I see these ‘end stages’.

@wundayatta if your parents still want to live, then I’m all for keeping them alive by nearly any means. But you seem not to have gotten to the point where they simply don’t want to live. Where they have no interest in life and it’s only “body will” – and all the skill and talents of the AMA that can be reimbursed by any party – keeping them alive. What do you do then? I hope you don’t get to that point. Though I miss my own parents terribly, I’m beginning to realize how lucky they were to have gone as relatively quickly as they did. Trusting in “the process” will mean a near-endless parade of doctors who can always “do something”, and will be only too happy to, since it’s their job, they get paid for it, and it’s not their own family member being kept alive against his rational will. It’s “the process” that I’m specifically railing against.

@hearkat you are absolutely right that demographics are going to force us into outcomes that we would probably never willingly accept, including very likely “warehousing” half-alive patients, probably in restraints because of the prohibitive cost of the care that should be given to ambulatory and likely-ambulatory cases of great senility.

And yet we won’t even discuss the relative sanity of a sane and rational person’s, “You know, I would really like to die tomorrow. Can we arrange that, please? In a fairly quick and painless way, with my family around to say good bye, no muss, no fuss, just get it over with? I’m tired of living and I just don’t want to do it any more.”

hearkat's avatar

@CWOTUS – My grandmother lived until 92 and had dementia/Alzheimer’s. In one of her lucid moments when she was 89 or 90, she said to me, “We should have a switch, once we hit 69, so that when we are ready to die, we can just hit that switch.”

My other grandmother also lived to 92. One lost her mind in a fairly healthy body, the other had a sharp mind in a failing body. I don’t know which would be worse. I also work with many elderly people, and have some who are in their 90s who seem younger than others who are in their 70s.

From the standpoint of medical ethics, it’s a very difficult line to cross. In our litigious society, the medical staff has to do what the patient or their power of attorney tells them to do, and sometimes patients do better or worse than expected for no known reason. I have had a difficult time telling people that their child has a permanent hearing loss; I can’t even imagine having to be the one to tell someone that their condition is terminal or to tell someone that they should pull the plug on their loved one. I have an internet acquaintance who is guilt-ridden for letting the medical staff discontinue care on his grandfather and letting him die, because he later found out that there was a better chance of recovery than he thought at the time.

Mariah's avatar

I am all for euthanasia. I find it pretty barbaric that it’s not currently an option, actually.

I think it’s definitely okay to spend money keeping people comfortable during their final months of life.

The thing with big procedures…I agree, it seems wrong to do a surgery on somebody who will not reap benefits for long. The problem is where do we draw the line. Do we use a single age cutoff? Seems bad, I know healthy 80 year olds and I know senile 80 year olds. Do we say no more surgeries once your life expectancy is under a year? Well you hear about people outliving their predictions all the time. Should we expect everybody to be ready to give up past a certain point? If someone does remain hopeful, however unrealistic it may seem to outsiders, is it our place to crush that?

CWOTUS's avatar

@hearkat I agree with your grandmother.

And I don’t think that it should be a doctor / medical procedure by which we choose to end our lives. That was one thing about Kevorkian’s misguided crusade that I totally agreed with: It’s time for a new “profession” to emerge, which he dubbed (and I can’t improve upon), “the obitiatrist”.

Why not? I wonder. We have developed specialties for all kinds of other procedures, from “body art” and tattooing to dental specialties that never existed 100 or even 50 years ago. Why not some kind of regulated / supervised, board certified and legal arrangement for this specialty?

We simply refuse to deal with death and its inevitability. I wonder why it’s so taboo?

@Mariah you’ve touched on one of the huge problems with the kind of “total care” third payer health insurance programs we’re heading for. No one wants to recognize that “death panels”, even if everyone pooh poohs the very notion, are as inevitable as death itself. My honest opinion has always been that there needs to be some kind of meaningful co-pay involved for all medical procedures. No one seems to “shop” for medical care these days, or have a stake in “should I or shouldn’t I” decisions. Since it’s all covered, everyone wants everything. The longer we all try to pretend we can have everything, the sooner we’ll find we can’t afford much of anything any more. They don’t call economics “the dismal science” for nothing.

Otherwise, I completely agree with keeping people comfortable at the end of life. That’s what palliative and hospice care are all about.

Sunny2's avatar

I believe fervently that an unhealthy person, who is not likely to get better, be allowed to opt for and end of life. My mother in law explained her status as a car, most of whose parts have stopped working, but the engine keeps chugging slowly along. She wondered why she had to go through all the discomfort she had had for so long. It’s undignified and demeaning to not be able to put an end to what the individual experiences as torture. I may have to move to Oregon when my time comes.

ETpro's avatar

This reminds me that I’ve got to write a living will while I still have the mental capacity to do so. My sincere sympathy to you and the rest of the family who are close to the uncle.

SABOTEUR's avatar

My mom had several strokes. The last stroke left her paralyzed on one side and unable to speak. Her cataracts left her blind in one eye. She had to be fed intravenously for 3 years. She spent her final years pretty much like a vegetable.

Every time I visited her in the nursing home, I felt like I was watching my mom being tortured. Forcibly imprisoned within a broken body with no hope to escape.

I don’t know how to change public attitudes, but I know with great certainty that you can avoid inflicting difficult choices on your loved ones by preparing a living will.

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