The Alzheimer’s Association recently released a report that attempt to quantify the financial and personal burden of Alzheimer’s care.
… [M]edicare payments alone are almost three times higher for people with Alzheimer’s and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher.
“With the country facing unprecedented economic challenges and a rapidly aging baby boomer population, now is the time to address the burgeoning Alzheimer crisis that triples healthcare costs for Americans age 65 and over,” said Harry Johns, Alzheimer’s Association CEO.
“It is widely understood that addressing health care is key to the country regaining its financial footing,” continued Johns. “And there is no way this can be done without improving Medicare and Medicaid which Alzheimer’s directly impacts…”
The report of the Alzheimer’s Association assumes that the enormous cost of Alzheimer’s care is a morally necessary burden, but it’s far from clear that the assumption is justified. The report ignores the most fundamental question: Is Alzheimer’s care a waste of money?
The report is quite clear on the financial burden to taxpayers and insurance companies, and the personal burden on caregivers. Alzheimer’s boosts the total cost of healthcare for the elderly from $10, 603 to $33,007 per year, each and every year. As the above excerpt from the report indicates, taxpayers bear the bulk of that increase.
The personal toll is equally high:
… According to Facts and Figures, in 2008, nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care valued at $94 billion. In addition to the unpaid care families contribute, the report also reveals that Alzheimer’s creates high out-of-pocket health and long-term care expenses for families.
Alzheimer’s care doesn’t simply cost more. In a healthcare system that cannot afford to provide care for all its citizens, Alzheimer’s care diverts massive amounts of resources away from caring for the young and curable toward caring for the elderly and incurable. As a matter of justice, such a diversion cannot be defended. Every individual deserves the opportunity of a healthy childhood, and, indeed, Alzheimer’s patients have by definition already survived childhood. The moral claim of children carries far more weight than that of the elderly who have already lived a complete life.
I’m hardly the first person to raise this question. As I wrote last fall, British medical ethicist Baroness Warnock, noted for her willingness to address controversial issues stated in an interview in the TimesOnline:
“If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service,” she said…
No one could accuse her of being reticent. The Baroness elaborates:
“With 700,000 people suffering, it really is a problem that has got to be faced. The fact is we have to take a fairly unsentimental view. Care may get better, but if so, at huge cost. There’s no point saying we ought to spend more, because we can’t.
“People talk about it as if the only respectable motive for wanting to die is for your own sake. But it seems to me just as respectable to want to die partly for the sake of others, and for the sake of society.”
The Baroness gets to the heart of the matter and does not flinch:
“If society has an obligation to look after them, I really want to know what for? For whose benefit? It’s not for the benefit of society, as the person is not in a position to contribute, and it’s not for the benefit of the person, so it must be something abstract about our being unable to bear saying ‘We can’t do this any longer’.
“If I were in a state of acute misery or pain, or an insufferable degree of dependency, I don’t see why I should feel an obligation to others to let them keep on changing my nappies.
“It sounds very callous, but most people I know dread being kept alive in a state of mental incapacity, more than cancer or anything else. If so, then I don’t see why society should force them to go through with something they fear the most.”
Her questions are the key questions: If society has an obligation to look after them, I really want to know what for? For whose benefit?
I can think of a few more questions:
Does anyone benefit from our perverse insistence on indefinitely extending the lives of the senile elderly? Are we fulfilling the wishes of the elderly people involved? Would they want to be kept alive, incapacitated, incontinent, and incapable of participating in the most basic tasks or social interactions? It’s difficult to imagine that anyone would want that.
Does it make any sense to spend a major proportion of the healthcare budget on people who are virtually insensate and will never recover? Does it make any sense, financially or morally, to divert resources from young people, who may not even have access to the healthcare system, to elderly people who have already received a lifetime’s worth of benefits from that same system?
The Alzheimer’s Association, not surprisingly, starts with the assumption that we can and should continue to provide care regardless of the cost. Considering that it is we the taxpayers who are paying, it is both financially and moral incumbent upon us to question that assumption.
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I find that when I leave her at the password protected door of the secure wing of the assisted living center that I'm invariably wishing for a stroke or a heart attack to come end her life quickly. Her mother lived, unaware, to 102. My grandmother would be horrified at how she looks, what her life is like and that she is trapped in the same way her mother was.
If no cure comes in time for me, I simply hope for a test that will tell me ahead of time if I'm going to get Alzheimer's so that I can end my life while I still control what happens to me.
"I simply hope for a test that will tell me ahead of time if I'm going to get Alzheimer's so that I can end my life while I still control what happens to me."
I feel exactly the same way. I wouldn't want to live like that, and most importantly, I would never want to be a burden to my children.
It's gonna happen. It's just a matter of time. And you're not gonna like it.
I work with students, interns, and residents from India, Pakistan, Egypt, Lebanon, and Jordan. When they come to our country, they are amazed at our dependence on nursing homes, social workers, and discharge planners. In their part of their world, the family (both nuclear and extended) is the bedrock of custodial care for the elderly. Unfortunately, this foundation has largely crumbled in our modern, restless, atomized world.
"the government will decide for you"
They already decide for you. They decide to pay massive amounts for the care of the insensate elderly, and nothing for the care of children whose parents work for companies that don't provide insurance.
The issue is not whether the government decides; the issue is what the government decides.
"In their part of their world, the family (both nuclear and extended) is the bedrock of custodial care for the elderly."
Sure, but the nature of that care is very different. First of all, life expectancy is much shorter and Alzheimer's is primarily a disease of advanced age. Second, folks in India, Pakistan, Egypt, Lebanon, and Jordan aren't caring for feeding tubes, respirators, providing multiple extremely expensive medications, etc.
My question is "What is the real and moral option?"
Go about administering lethal injection to those with Alzheimers? Withhold any type of nourishment or care altogether until they simply die on their own?
Where do we draw the line - why stop with Alzheimers? What about the other diseases or mental states for which there is no cure? Like Parkinsons, ALS, the mentally underdeveloped and the like? When our soldiers return from battle, their bodies and brain's irreparably damaged without hope of returning to the state of normalcy they once knew, what then?
And while you're at it, why not make it a death sentence at any age - from birth on - to have a health condition for which there is no known cure? That way there isn't any chance that they will ever be a burden on society at any time.
We can build gas chambers with the money we save.
What do ya say?
Excuse me while I go throw up.
[As usual, you present an issue that will get attention, strike a nerve, and is sure to receive comment. I hope you never have to deal with something like this in your own life. This is by far, the most insensitive and thoughtless of your attention-seeking posts. ]
So, are you advocating suicide, or perhaps matricide or patricide? Or just euthanasia? I do believe that people should have the right to die a dignified death. Families need to care, to be able to make those choices .
Where does it end?
The problem comes in that an elderly person will be put on medications and medical devices requiring specialized care in a facility, and then it feels like killing them to remove that support. And if you look at it a certain way, it kind of is. But prolonging life is not always kind. It's more like allowing someone to die.
People may WANT to care for their relatives at home, but the high level of medical care their relatives require makes that extremely complicated.
They may also want to discontinue medical care and take their family member home to die but may not find any support for that and obviously don't want to be seen/treated as murderers.
I once read that something like 50% (or more) of the dollars spent on health care are spent in the last 2 months of someones life.
If this is even somewhat true it does raise huge questions about health care priorities.
My question to you is, "What do we do?" What treatments do we withhold? What treatments do we continue? How do we let the Alzheimer's patient die?
I doubt you will address that issue. So here's the part of my comment you can take and answer out of context.
What are you suggesting people do, withdraw nutrition, or just let their parents wander out into traffic?
This post seems utterly immoral, a word you are not allowed to use anymore when religion is something to be mocked. I will never read you again.
The Catholic Church argued that legalizing abortion would create a slippery slope leading ultimately to euthanasia. They seem to have been right.
April 01, 2009 09:46 AM
Thanks to our politicians pandering for votes to see who they can make more and more dependent on government.
You never withdraw care. Patients always receive palliative (comfort) care including pain management and basic wound care. They are bathed, have clean sheets, comfortable rooms, and so on. They are fed and given liquids by mouth. But you you can discontinue active treatment of medical problems and other kinds of interventions (e.g. artificial nutrition and hydration). You don't have to treat infections, provide dialysis, respirators, treat high blood pressure, send patients to the hospital, etc.
In providing active treatment of medical conditions we have to ask what is the goal of treatment. Typically we treat people in order to restore or maintain some kind of function. In the case of someone with advanced Alzheimer's, it's not clear what the goal of treatment is, other than prolonging a life in which the person is, in a significant sense, no longer there.
I don't really like the term "waste of money." Certainly finances are one aspect, but I don't think it's helpful to look at it from that perspective. But there is value in talking about medical futility and the goals of treatment and whether the treatment provided is really accomplishing any significant goal.
Alzheimer's is a progressive disease, and you don't go from active treatment to palliative care overnight. But I think it makes sense to transition from treatment to palliative care over a period of time.
Not many decades ago we didn't have to worry about these issues because the technologies that can keep these patients alive for years didn't exist. But just because we have the technology doesn't mean that we have to use it, and the uncritical application of technology only serves to inflict needless suffering on patients who can't understand what they are going through, and on their families.
A competent ethicist would never, ever frame this issue in such a facile way. If she had shown even half of the nuance and intelligence of your comment, I might have held back.
Withdrawal of treatment in the case of Alzheimer's is an extremely complicated affair. As you pointed out, people in nursing homes aren't on machines, they haven't been diagnosed with anything terminal that would justify the discontinuation of nutrition or hydration. They're not in palliative care.
So your only option really, is to solve the problem before they go into a nursing home.
And how do you do that? You can't without risking criminal charges. You can't talk them into committing suicide, because word in the medical community is that we are on the verge of major breakthroughs.
So I find this post disingenuous and extremely offensive and insensitive to people in, or likely to be in this situation.
This is the way people talked about AIDS twenty years ago. And I can't believe anyone who is seriously engaged in medical progress could talk this way.
And now we want to cut off their access to care, after they 'played ball'? Sounds like a master plant to me! ;)
I do guess we should spend more resources on the innocent children who have gotten cancer from our industrial pollution (including medical waste incieration, which produces dioxin), from a social justice perspective though! We could throw some of that money toward the families of vax injured children too, come to think of it. Currently they have to fight for up to 10 years in 'special court' to recieve a max payout of 250G. :shock:
Your article makes valid points all around, but didn't offer any suggestions for alternatives to how people currently deal with the worst of situations. I hope you aren't suggesting we resume Dark Age traditions of throwing the sick and elderly off cliffs once they have become useless.
But what are the alternatives for this specific medical condition that you're suggesting?
I am not one of those people who believes that good works here on earth will be rewarded in the afterlife. We have one shot at our humanity. If we screw it up, what have we left as our legacy for those that follow?
"You never withdraw care. Patients always receive palliative (comfort) care including pain management and basic wound care. They are bathed, have clean sheets, comfortable rooms, and so on. They are fed and given liquids by mouth. But you you can discontinue active treatment of medical problems and other kinds of interventions (e.g. artificial nutrition and hydration). You don't have to treat infections, provide dialysis, respirators, treat high blood pressure, send patients to the hospital, etc.
In providing active treatment of medical conditions we have to ask what is the goal of treatment. Typically we treat people in order to restore or maintain some kind of function. In the case of someone with advanced Alzheimer's, it's not clear what the goal of treatment is, other than prolonging a life in which the person is, in a significant sense, no longer there."
One of the basic problems in analyzing moral questions such as these is that people often assume that continuing aggressive treatment is "not making a decision" and ending treatment is "making a decision that is not ours to make." The fact is that providing medically aggressive care is most definitely a decision. Moreover, it is a decision that seriously impacts other people. The massive amounts of money that are spent to warehouse and treat the senile elderly are not available to treat and cure other younger members of society.
"You could pose the same ethical question about any medical condition and its costs: is society obligated to pay for this condition?"
You could, but the facts involved are very different. First, Alzheimer's is a disease of the elderly. By definition it affects those who have lived a full life and have received necessary medical care throughout that life. As a matter of justice, everyone deserves the opportunity to live a full life (and we don't yet provide that) before we start diverting money and resources to prolonging the lives of those who have already done so.
Second, Alzheimer's never gets better. There is no hope that anyone will recover, and the course is one of inevitable decline to insensibility. It is one thing to provide care that can return a person to awareness of himself and others. It is another thing entirely to provide care simply to keep up the heartbeat of an insensate invidividual with no hope of even the smallest improvement.
In an ideal world, I would have the option of signing a piece of paper which instructs the hospitals to actively terminate my life if I am irreversibly mentally incapacitated.
That's the tragedy of modern medicine. We are all condemned to live long past there is any reason to.
Amy asks some good questions. Given the finite resources we have for healthcare, some good answers need to be found.
And those who recoil in horror at these questions are simply refusing to acknowledge these ethical questions. They have to be discussed.
My grandmother had Alzheimer's in her early 80s and the 24 hour care of a nursing facility was necessary because her daughters could not provide the care in their homes (though they tried, until she injured herself). The facility was horrible - the nurses were being paid for nothing but letting the residents waste away - my mom and aunt were there for 2 meals a day to ensure that she ate something (the first two paragraphs of Kelly Green's comment (comment 1) sounds eerily familiar). If the system can be made more efficient, there would be less of a question about the cost. Also, an ability to carry out the wishes of the elderly regarding a dignified death needs to be present.
And get people talking about how spending all this money on brain-dead elders takes away from taking care of other members of society.
"get people talking about how spending all this money on brain-dead elders takes away from taking care of other members of society."
Definitely. We haven't been able to have that conversation in large part because of the influence of the religious right. Now, finally, we might be able to address this serious ethical issue.
And people have the nerve to deride smokers, who die relatively young and mentally intact, for driving up health care costs. If anything, non-smokers and smokers who do not die of smoking related disease are to blame for running up costs and bankrupting us all.
I guess we could be like the eskimos or Native Americans used to be (it's apocryhal -- I have no scientific evidence) and send them out into the wilderness since they are of no use to society any more.
It would be cost effective. Might give the wolves something to eat which is not as heartless as your article.
You will just about write anything for ratings. It is sad in so many ways.
My father has progressive Alzheimer's and he doesn't have the funds to be in a private facility. He doesn't know how to take care of himself and he gets gravely ill with infections and has to live in a full service, 24/7 Nursing Facility.
What would you suggest Amy? Euthanasia like a family pet? Do you think my wife or I, or my sister can quit our job and sit at home with him all day supplying him with the meds for diabetes, prostate cancer and Alzheimer's? You're an Obstetrician for God's sake and you write about this shit like you are the Editor In Chief for JAMA.
Get a f'ing grip, please.
"Do you think my wife or I, or my sister can quit our job and sit at home with him all day supplying him with the meds for diabetes, prostate cancer and Alzheimer's?"
No, Greg, but if you don't want to do it, then you ought to pay for someone else to do it. I don't consider that it is morally justified to divert millions from the care of the young and curable to warehousing the old and insensate simply to keep their hearts beating.
I'd like to see someone make a moral argument that the insensate elderly who have no hope of improvement, let alone cure, should receive massive amounts of finite medical dollars before the young and curable are adequately treated.
Hard decisions have to be made. Where will the money come from to keep all these brain-dead people alive?
Do you acknowledge that there is a problem? Dorinda? Blue? Neilpaul? Anyone? And if so, what do you think we should do to address the problem?
I have a mother-in-law that was and is a card carrying member of the Hemlock Society. She preached to her children to end her life if she was ever ill and could not do so for herself. She had a little stash of pills to do the deed. (Never mind that I find suicide so morally offensive, plus totally debilitating to the family and friends left behind......... As I have been one of the ones left behind and I will never get over it.) But, hear this, she now has Alzheimer's and knew she was in the early stages of dementia a few years ago and told us that she wanted to "LIVE!" By God yes, she wanted to LIVE. I think you underestimate the degree to which life is desirable and to which we are defined by how we care for those while alive.
Also, I have a friend I work with, who is 50ish and he and his 7 siblings took care of his mother with Alzheimer's and Parkinson's disease at their home until her death, recently. They lovingly and with honor took care of their mother, even though she could not communicate for the last 2 years. They grieve that she is gone. God bless them.
Redstocking Grandma and Blue and Mishima. You are my kind of people. It's not a benefit cost analysis.
Alzheimer's isn't only a disease of those who have lived full lives. It strikes some people very early, and with our population having babies later, more and more patients have families at home at onset.
There's no proof - no possibility of proof - that it will continue to be an incurable illness. Cancer was regarded as a death sentence when I was a child; now it's a bump in the road, but not a reason to blow your brains out at diagnosis.
I am an atheist who could care less about the value of life, qua life.
I am describing some people, not anouncing my own views.
I would repeal taxes on cigarettes and let these folks die relatively cheaply of heart disease and cancer.
I would also cover everyone with health insurance, not just those lucky enough to get old. Then I would ration health care.
Just some suggestions.
Alzheimer's patients are not necessarily "being kept alive". They are our elderly, our loved ones who have a devastating condition.
I support a person's right to end their own life if they are of a sound mind and find life no longer worth living. A right, not an obligation to society so they are not a burden.
You bring up the issue of health care for our young and I couldn't agree with you more that we need a better system but I don't think it is an either/or proposition.
I also agree that a person's family should do all that they can toward the care of their elderly but...there always seems to be a but...with the financial situation in this country it is usually difficult to spare the income of a family member for this job no matter how much we want to care for them.
This country has moved more and more away from respecting our children and elderly and it is time for us to stand back and look at our values; look at where we spend our money.
As for you, Dr Amy, I will show you the compassion which you seem to lack. My wish for you is that you are diagnosed in time for you to end it all. Let's see, will you end it when you can't remember where you put your glasses or when you call the paperboy Aunt Susan?
God forbid you or a loved one gets Alzheimer's after we start the mass euthanasia, or how about something less expensive like lining them up in front of ditches a la WWII and shooting. Oh wait, can't do that, the Pharmaceutical companies need the revenue for the euthanasia agents. What a quandary. You WOULD write about anything to get attention and you are pathetic.
No one chooses their disease.
This is by far the most inflammatory post I have seen here. So what are you advocating? Over the Counter suicide pills? WTF?
Brave New World much??!?!?!
In the case of artificial nutrition or hydration, that could be discontinued, depending on the condition of the patient. In most states that is not considered to be "routine" care but rather an "intervention."
I think we need to separate two different issues. One issue is the actual medical treatments given to Alzheimer's patients. The other issue is what we might call "caregiving" -- assistance with bathing, dressing, eating, providing companionship and activities, dealing with issues related to continence, and so on.
While I think that medical treatment can justifiably be withheld, I don't think caregiving ever can be -- at least not unless we want to have a very different kind of society, a kind of society that most of us would be ashamed to be associated with.
If that means that certain medically-intact Alzheimer's patients have to be maintained in nursing homes or other facilities at great expense, so be it. That said, at the point at which such patients begin to develop other medical problems, I think we really do have to consider whether medical treatments are an exercise in futility. There is no hard-and-fast rule for that, and each patient's condition has to be considered. E.g., in the early stages of Alzheimer's, coronary bypass surgery would probably make sense, but in the end stages of the disease it probably wouldn't make sense.
Sure, you're very happy to take the money from the Federal government because it benefits you and your loved one. However, no one has explained why you and your loved one deserve a massive Federal handout while small children go without medical care.
Maybe in an ideal world where money were no object, and difficult choices were not being made, we could pretend that keeping alive the insensate elderly is something we could afford (although most of them would not want to live that way, but that's another discussion). However, in the world we live in, those who expect the government to foot the cost for an insensate relative, rather than paying the cost themselves, are by definition depriving others of healthcare.
I understand that you want the money, you need the money, you like the money. What I'm asking is why should you and your relative get the money ahead of children of the working poor who have no access to the most basic healthcare. I am hoping someone will address this serious moral issue.
"the U.S. is the only country in the western world that does not provide universal health care for children.... And you're going to try and shame the family Alzheimer's patients for this?"
It is apparently impossible to do both. The countries that provide universal healthcare have very strict limits on what they will spend on medical care for the elderly. In this country, because the elderly are a large and powerful voting block, they have earmarked a major share of the Federal budget for their entitlements (Social Security and Medicaid). Children aren't a powerful political constituency; therefore even their most basic needs are often ignored.
There is only a finite amount of money available for healthcare. Of that there is no doubt. Given that there is only a finite amount of money, aren't we wasting it when we choose to warehouse the senile elderly who will never get better, rather than give preventive care and medical treatment to the young, who through no fault of their own have no health insurance?
It is painful to look at that question, but it is painful for innocent people to refuse to look at that question.
You ask for a reason why one should have and one should suffer. You hear no reason because it is a senseless, meaningless question with no answer. Human beings don't see it as a choice. We look to other choices for funding.
I'll leave my comments at that and this is the last you'll hear from me. Hate to spoil your fun.
"It should not be a choice between the elderly and the young."
But it IS a choice between the elderly and the young. Refusing to acknowledge that causes tremendous suffering among people who are ill and could benefit from medical treatment and preventive care. The US can and should spend only a certain percentage of GDP (gross domestic product) on healthcare. Any higher and our country cannot compete with suppliers and manufacturers in world markets.
I, like you, would prefer not to have to make the choice. What people fail to understand is that not only is making a choice unavoidable, we have ALREADY made a choice. We have chosen to provide unlimited funds to warehouse senile elderly people and no funds to large groups of children (and adults) who cannot afford healthcare. I am questioning that choice.
And you haven't dealt with my earlier question. How do you justify your argument in a medical community that may be close to a cure?
"And when these families go bankrupt, and have to derail careers, and can't pay the (admittedly small amount of U.S.) income tax they pay, and their children suffer from the family's lack of resources, the government ends up paying anyways."
I understand the benefits of paying. What I don't understand is why those benefits are supposedly MORE important that the arguably larger and morally compelling benefits of using that money to provide care for children and adults who have no health insurance and who have conditions that could actually be cured.
When, as a society, we decide to to fund the care of one group (the elderly) instead of the care of another (the uninsured), we are presumably acting because we believe that the care of the elderly is more important than the care of the insured. I'm challenging that belief, and I'm challenging the whole idea that we ought to provide unlimited medical care to the elderly regardless of prognosis.
We "warehouse" all sorts of people. There are severely mentally ill people in group homes and mental hospitals. We warehouse many thousands of people in prisons and jails, sometimes for life. We have facilities for severely retarded children.
Unless you want to live in a society in which we have mass executions or people dying in the street I'm not sure what the option is. Note that I'm not talking about medical care, but caregiving -- shelter, food, and clothing.
"What's the solution?"
When a person no longer knows who he is, care should be restricted to comfort measures. Some people with Alzheimer's will continue to live, but many have multiple medical problems are being kept alive by aggressive medical care.
We should not be paying for that aggressive medical care. If families want to pay for it, they can do so, but we should not be diverting precious healthcare dollars from others in order to do so.
Let's face it. Death and dying sucks and having only a limited time to live our lives is a drag.
Also, losing loved ones sucks.
All of this is inevitable and natural. It is pointless to forestall the inevitiable through heroic measures when a life is just being preserved, not truly lived.
And yes, I do feel qualified to say a life is not being lived by the drooling demented. Sorry if that offends you.
You've never answered the question - where's the line to be drawn? Alzheimers isn't the only ravager of the mind and body filling nursing homes with men and women - not just elderly - dependent on others for care. What of those? Parkinsons, ALS, etc. What is the tipping point? Where does it stop?
This is a difficult issue that we all have to face as individuals, as families, and as a society. But we won't solve it here.
I'd like to see an addition made to the law to account for Alzheimer's. To let a patient with a confirmed Alzheimer's diagnosis, who still has his/her marbles, have the same benefit of the law. I would agree with Dr. Amy, no one wants to live like that. I know my own parents well enough that they would never want to be that way. But the only way to deal with this (other than the pallative care that other posters mentioned) is to give people control over their own dying while they are still capable of thought.
I know I'd choose Death With Dignity. If I were elderly, I'd like to die on my own terms, with my family there, rather than running everyone's bank accounts and family time into the ground caring for me when I didn't even know it.
To allow the patients to choose their own manner of dying for themselves is really the only option, I think. To withhold care or actively kill patients with Alzheimer's isn't a road anyone can envision going down. But enabling people to make their own decisions is.
Once again, I think we are kinder to our pets than we are to our elders when it comes to death and dying.
I think it should be expanded to include Alzheimer's.
You haven't established the authority to make general statements on comparative health care policy. Come back with some facts.
"However, could you please take the money question out of this discussion? I find that seriously distasteful."
Unfortunately, it is impossible to take money out of this discussion. As I said in an earlier comment, in an ideal world where money were no object, and difficult choices were not being made, we could pretend that keeping alive the insensate elderly is something we could afford (although most of them would not want to live that way, but that's another discussion). However, in the world we live in, the money spent on Alzheimer's care is money that is not available to care for the millions of young and curable people who don't get healthcare at all.
The primary purpose of the post is to draw attention to the fact that we, as a society, have made a decision. We have decided to to fund the care of one group (the elderly) instead of the care of another (the uninsured). We are presumably acting because we believe that the care of the elderly is more important than the care of the insured.
I'm challenging that belief, and I'm challenging the whole idea that we can provide unlimited medical care to the elderly people who no longer know who they are without depriving others of care that ought to have a higher moral claim on us.
I hope your kids do that to you when you're old.
"Yeah let's just chuck old people out to die on the streets.
I hope your kids do that to you when you're old."
I don't believe that I am entitled to burden my children or society with an existence that extends beyond being a sentient human being.
"We need to create a culture where all life is valued, and where there's value in care giving."
And how does diverting money from the medical care of the young to the warehousing of the insensate elderly demonstrate that value? I don't think it does. It demonstrates a very different value: I'll take whatever I can get for me and mine, and the rest of the world be damned.
you haven't deigned to respond to my comments, which makes me sad.
I just want to simply say you are pretty much dead on with this post. People who are criticizing you still haven't talked about that child who is going without care. They imply we should just pay for that too without saying how.
It seems to me we should provide care to the kids first, then the elderly, if we can afford it. Here I am talking about interventions to cure major illnesses.
This is one of those invisible decisions that is being made. I agree that it is hugely unpleasant to talk about who gets what when we can’t afford everything, but once again, we make these decisions by default. Maybe we need to think about providing everyone a basic level of care and those who want more drastic life extension procedures could purchase extra private insurance to pay for things like feeding tubes in cases like Alzheimer's or an irreversible vegetative state.
that is, if anyone is still reading this
The real crisis is the stagnation of funds in the U.S. towards Alzheimer's research. But for some reason Amy doesn't want to address that.
Yes, because research is being done on these people to discover the cause and cure for Alzheimer's. To simply put people down because we don't understand shows an incredible willfulness towards ignorance.
Who are you to decree that research dollars should be spent on Alzheimer's research and not on research for diseases that attack children and adults in the prime of their lives?
"She could not afford her medicines and specialist visits and eventually was hospitalized with kidney failure and pancreatitis. They did around $900,000 of surgeries, but she didn’t make it. Huge amounts of money were spent on the end of her life because she didn’t get the preventative care to control her Lupus. Ironically, her appeals were eventually noticed and she got back on Tennessee’s state insurance after it was too late. Very sad story, but I’ll bet it’s not all that unique."
Unfortunately, it's not unique. It happens all too frequently. People are literally dying because they cannot pay for their healthcare.
"If anything, non-smokers and smokers who do not die of smoking related disease are to blame for running up costs and bankrupting us all."
People like to claim that preventive healthcare saves money. It doesn't. It saves lives, but it doesn't save money. That's because it costs a fortune to diagnose a disease like cancer or AIDS early and treat it. It costs nothing to miss the disease and let someone die.
"I will gladly change my mother's diapers, spoon feed her and anything else that may be required if and when the time comes."
That's fine. No one is saying you shouldn't. The issue arises when people expect the government to pay thousands of dollars each month to provide those services.
"I also question using Baroness W as an authority."
She is one of the foremost medical ethicists in the world today. Her title is purely honorary, acknowledging her work in medical ethics. It is not a hereditary title.
In treating elders with incurable diseases, I do wonder how many families when presented with the spectrum of treatments by a doctor - from highly invasive life prolonging procedures to simple palliative care - ask this question first: "Who will have to pay for that?" My guess is that passing on the costs to everyone else makes it a lot easier to avoid thinking about the difficult question about funneling limited resources to an elder's care.
The difficulty with making health care policies dealing honestly and effectively with this issue is that it seems that no politican can create a narrative able to withstand the wonderful stories people can tell about their loved ones stricken with Alzheimer's. But with a limited budget, these decisions have to be made. I do believe Mishima666's description (below) of palliative care is something most Americans could support. As this is America, people and groups who would like to do more can join together and raise private resources to do just that.
"You never withdraw care. Patients always receive palliative (comfort) care including pain management and basic wound care. They are bathed, have clean sheets, comfortable rooms, and so on. They are fed and given liquids by mouth. But you you can discontinue active treatment of medical problems and other kinds of interventions (e.g. artificial nutrition and hydration). You don't have to treat infections, provide dialysis, respirators, treat high blood pressure, send patients to the hospital, etc."
- Mishima666
But I suspect she's considered a little out of the loop on Alzheimer's. And I would be seriously shocked if England were to pass a law advocating any duty to die for Alzheimer's patients. So I continue to be skeptical that this view is taken seriously among active policy makers.
I am a gerontologist (social scientist) by training. I totally disagree with argument that the elderly are taking theirs at the expense of the young. I think that framing it in that way creates a false dichotomy where there is not one or should not be one. Our priorities as a nation are split a lot finer than between the young versus the old getting health care. The fact is that we all need to be able to access health care along the lifespan. Remember, the young do get old. And the young do get diseases that make them 'insensate' (truthfully I have never heard anyone in my field use that word, respected or not).
Did you know that one of AARP's platforms is that everyone deserves Medicare? I am from Louisiana and we do have LACHIP, which is a TANF program for the children of mothers in poverty. We also have LAMOMS, which is for the maternity coverage of pregnant poor moms in our state. What we don't have is coverage for those people that are uninsurable due to no fault of their own, like my son and his girlfriend. Not only old and young people deserve medical care; everyone deserves medical care.
There are so many evil things that we do with money in this country-- the war in Iraq being one. Please use your degree and training for the power of good and not for the purpose of tearing us apart.
"I think that framing it in that way creates a false dichotomy where there is not one or should not be one."
It's not a false dichotomy. Unfortunately, it is a very real dichotomy and one that should be addressed.
According to the Congressional Budget Office:
CBO estimates that the federal government will spend roughly three and one-third times more on the elderly this year than it did three decades ago (in constant dollars, excluding the effects of inflation). Since 1971, per capita spending on older people (in 2000 dollars) has risen at an annual rate of 2.4 percent a year, although over the past decade that rate of growth was 1.5 percent.
This year, spending on the elderly will account for more than one-third of the federal budget, up from about 22 percent in 1971 and 29 percent in 1990 . That draw on the federal Treasury is projected to climb to nearly 43 percent by 2010 (according to CBO’s April 2000 baseline budget projections). Under current law, that share will grow even faster after 2010 as the baby-boom generation retires and the population ages 65 and older expands by nearly three-quarters over the 2010- 2030 period.
As a share of gross domestic product (GDP), spending for older people is projected to reach 6.4 percent of GDP in 2000—more than 50 percent higher than three decades earlier but only slightly higher than in 1990. The plateau observed during the 1990s, however, is not expected to continue; CBO projects that federal spending for the elderly will rise to 7.1 percent of GDP by 2010 and grow more rapidly thereafter.
"Remember, the young do get old."
Not if they don't have healthcare. That is the most important moral point. Everyone deserves the chance to become elderly before the elderly deserve the chance to become very elderly. Moreover, I would argue that the money spent on warehousing the elderly is wasted. No one gets better. Virtually no one wants to live that way. As Baroness Warnock asks: who do we think is benefiting?
It troubles me that Amy takes the time to present this dilemma from the standpoint of her medical background and in the perspective of government sponsored health care which I think most on this blog support and many of you respond with the emotions of a group of Republicans trying to express their point of view on abortion. She raised an issue that needs to be dealt with. Many of you responed with an anti-Amy anger fit.
I do not see one thing in Amy's post that suggests throwing them out in the street. I believe what she is suggesting is the discontinuation of aggressive treatment. No heart bypass, no transplants, no major surgery, etc., etc.. We do this for all terminal diseases when the patient goes into hospice.
I know that many of you have personal experiences and situations that make it hard to be impartial. But Amy should be thanked for giving us a format to further this discussion. Some of you need to check your emotions at the door.
This is one industry, like energy, and banking, where the gov has to step in or we will go bankrupt. It's that simple. We will not be able to afford care for the number of people about to retire now even at current costs. Something has to give. For one, it would be nice to outlaw HMOs but I don't think that's leagally possible.
But the beaurocracy is probably the biggest expense. Then the machines, the operations, etc. We can't give 80 million people hip or heart surgery every year. No one has that much money. The cost of stays and the procedures has to drop. Either it comes down or The United States will be insolvent.
2.Provided pain relief, infection control, and comfort measures are still offered at all times, I agree. If a family is able to provide for their family member with Alzheimer's, pay for the cost of the care, etc, then of course their wishes should be honored unless the patient themselves said otherwise when capable. But when it is a question of the taxpayers paying for these services, as sad as it is, the money is needed for millions of uninsured or underinsured children and other young people.
I like how everyone jumped to euthanasia. Of course, that's not what anyone's arguing, as far as I know. Euthanasia advocates (like myself) believe almost universally that it should only be used when the patient is sane, competent, 100% willing and in the end of life. Besides, with Alzheimer's patients the cost is really only once they've been revived several times, are on a vent, on dozens of meds... If they can survive without active medical care, they should be taken care of. If they cannot, but to remove care would cause pain and suffering, they should still receive their medications. I think, though, that performing CPR in an ambulance on a 90-year-old dementia patient in cardiac arrest is cruel to the patient and a waste of time, money, and energy.
It's not that they are useless, really. It's that it's cruel to prolong the life when there really isn't anything there any more. They won't get better; a person currently with Alzheimer's will be unlikely to live to see miracle treatments and if they do, they won't survive too long afterwards. You aren't granting them a few more years with their kids if they don't recognize their kids; you aren't giving them the chance to do what they always dreamed of doing if they can't remember their dreams and can't travel anyway.
I speak as someone who has known very close relatives with dementia. And yes, I thought when my great-uncle was so out of his head that he would pee in the neighbor's bushes and grab his own daughter's breasts and call her sexy that he should have a DNR, even though he was not in pain, particularly, except for the days he thought he was back in the European Theater. I know of very few people who believe living with Alzheimer's is life. If they do, it's because they have either never faced such a fate themselves, or their religious leaders have convinced them that
I and my fiance have discussed it at length and have agreed that we love each other enough that should one of us be left brain damaged beyond recognition, we will pull the plug; if we are not on life support, we have agreed that we will set up a DNR and will see if we can move somewhere where euthanasia is permitted. IF YOUR BRAIN IS DEAD, YOU ARE DEAD. And if your brain is so far beyond recognition you can't remember your relatives, you might as well be plugged in at every orifice and completely unconscious.
I extend this to any incurable degenerative condition that causes mental or physical disability past the point of being able to be an active participant in the world, even if you are just doing so by loving your grandkids and gambling in Vegas. Yes, even if it's a child. The story of Baby K taught me that.
And to doubters: Doctors ask themselves these questions all the time. Most doctors favor terminating heroic measures in the end of their lives. This is a very common question doctors ask. Most simply wait until they, like Amy, are retired before stating them publicly, lest they be attacked by the Religious Police for violating the Sanctity of Breaking Twelve Ribs on a War Veteran who has been Dead for Twenty Minutes so He Can Stay On A Ventilator Fully Sedated For 4 Months Before Dying In A Hospital Instead of His Own Bed.
I don’t accept suicide as an option, because those left behind will feel they have failed. I do believe in allowing someone in the late stages to refuse food and fluids. I wouldn’t treat cancer in someone in the middle stages of dementia, and I would withhold antibiotics in the late stages (my husband has said this is what he would want). I had a relative who told his wife: “I’m having a stroke; don’t call 911.” She called anyway, and I probably would too.
I see death from something else as a blessing but often there isn’t any clear way to get there.
Pam
I don't see the point in posing the question unless you also propose some solutions. What type of care are you proposing should be withheld? My husband is only 50 with early onset AD. He is physically healthy as a horse except for his brain. This is actually the same for the many demented elderly. Due to the good medical care they received as children and young adults, they are extremely healthy. However, at 85, they now have a 50/50 risk of getting AD.
Much of cost of AD caregiving is not for extreme measures but just the daily living. If a person is otherwise healthy, it can take years before their brain deterioates enough so they die of AD.
Do you propose that as soon as someone is dx'd with a costly disease, they should be given the alternative of suicide? Or should we stop treating heart disease, breast cancer etc for people in their 40's plus end all transplants? That way they won't hit old age. Also, why target AD, why not target elective medical costs like cosmetic surgery?
You apparently do not have a clue about the number of years that can elapse from the time that an Alzheimer’s diagnosis is made to the time that an individual with the condition reaches the point where they no longer are aware of themselves and their surroundings.
If saving taxpayer money was your goal, you should have advocated establishing programs that would allow individuals with Alzheimer’s to remain in their homes longer instead of attempting to think of ways that would allow them to die quicker. Have you no concept of the wages that are lost by caregivers forced to leave their jobs (and the tax rolls) because they must care for a loved one? A subsidized home care program would have the dual benefit of allowing caregivers to continue working outside of the home and employing someone to fill in on their caregiving duties. Who knows...The money earned might even be used by a parent to buy food for their hungry child.
Ms. Tuteur (I refuse to address you as a doctor) I would love to know how you would rectify the emotional and financial Alzheimer’s crisis. Reading your editorial, it seems you would rather euthanize Alzheimer patients like a race horse with a broken leg (the horse no longer can win the race and bring home the big payout much like the Alzheimer patient, who now after years of paying their health insurance premiums, now need the assistance of those benefits). Well Amy we aren’t dealing with animals, we are dealing with people. Possibly you should leave the practice of neurology to those who specialize in that field and stick to your field of Obstetrics. You’re mistaking your “God-complex” with playing God. Neither is tolerable nor appreciated.
While I'm not willing to step up to the slippery slope of euthanasia, I think we need to routinely ask why we're giving antibiotics to a bedridden, unresponsive, incontinent patient with pneumonia, for instance, vs. letting them have the natural death they're trying to die. Artificial and invasive prolongation of death is, in my opinion, a greater moral issue than choosing not to intervene.
"I often witness the knee-jerk prolongation of life in old people who are bedridden and either in pain or unaware of their surroundings. I find this vastly more tragic than death, which is not tragic at all, when it's non-violent and comes at the end of a good life."
I agree. Patients' families need to ask themselves whether they are really prolonging life, or only prolonging death.