Some people might want to go make some informed comments on this: http://open.salon.com/blog/amytuteurmd/2009/04/01/is_alzheimers_care_a_waste_of_money
So what do we do, take them to the vet when they are ready to be put down!!!!! What about the mentally disabled children who will never live "normal lives" Oh, and the elderly, once they stop paying taxes, lets take them out too! How about disabled vets, that will never lead normal productive lives, say, "thanks for your service, but see ya" So from now on only the so called Normal, Perfect get health care! Wow, I'd be attending many funerals. Hey take it one step further, a mass grave to save money???? Sounds like Hitler is back. I'm BS, can you tell!!!!!
It's not even worth taking the time to comment.....we care for ad patients because we love them. That is something that no government can ever provide.
The obvious solution to this problem is to have our elderly gain productive employment, by drafting them into the military. They would have food, clothing, and shelter, and would earn a salary. Our medical budget would disappear, and we then would be free to have a larger military, and start wars in many more places. It would be easier to accept the casualty figures, since they were formerly a burden on society anyways..But, with the money we save on healthcare, we could then afford better medical coverage. Think of the benefits of having the elderly wage war?? Who would suspect an 84 yr old lady as a soldier..we could become an undercover army....wow...I am sure that some would remember ww2, the Korean war, Vietnam, and think of all that experience.. Our military budget stays the same, the medical budget goes down 60%, and our caregiving days are over....yeah..great idea
Thank you for providing the link to this. I just read her blog, and my first reaction was that it made me want to throw up. After I read some of the comments other people had written, I felt even worse.
Unfortunately, I do believe that this is a very common idea, and that it is going to become even more popular. I started to become concerned about this when I read a recommendation that antibiotics be stopped in the last two months or so of life for someone with dementia. How do we know when the last two months of life are? Well, I guess if we stopped antibiotics on a lot of our loved ones, it would be their last two months of life. But the idea of this blog and the comments seemed to be that they weren’t worth treating any longer, so let’s just not waste money on them.
Some of the comments asked what group we eliminate next. A very good question. There are a lot of other groups of people who will never be healed. But it looks like they want to eliminate our loved ones first. Are we supposed to hide our loved ones away to keep them protected from people like this doctor, who think they aren’t worth treating?
For us, it has been six years since DH was diagnosed. Yes, he has declined, but he can still enjoy his life, and his presence is a comfort to me. The idea that somebody who doesn’t even know him thinks they have the right to discuss ending his life is terrifying to me. I feel sure that these people would think that six years of my husband being a drain on the medical system would be quite enough. Who are they to decide that?
I think that we HAVE TO respond to people who think like this, because they aren’t going to go away, and over time they are going to convince other people that they are right. If we don’t provide a dissenting voice to their plans, who will?
Well, this definitely postpones the blog I had planned for today. Extremely well worth discussing. I am going to print the entire article on the home page of my website - www.thealzheimerspouse.com - anyone who wishes to read it and comment can do so here.
PLEASE BE ADVISED - This is a very controversial article. Your opinions are important and welcomed, but I urgently request that you address your comments to what Dr.Tuteur wrote, and respect the opinions of those on this board whose ideas may differ from yours in relation to what Dr.Tuteur wrote. We have just recovered from a very unpleasant episode of comments that offended and hurt many of our members. I do not want to go down that route again.
Dr Tuteur writes as if she has had no experience with anyone with AD. Her comments show her lack of knowledge about the progress of the disease. Her article is inhumane and facetious. What is her solutions, the poor house, homelessness? Of course, families and society have obligations to the sick and elderly. It goes against the very nature of humanity to suggest anyone who is not productive should be ignored or worse. Who is this person?
"Does anyone benefit from our perverse insistence on indefinitely extending the lives of the senile elderly?"
Please note the "indefinitely extending" part of the sentence. She isn't talking about day to day care of patients with dementia. Frankly outside of nursing homes that isn't all that expensive. She is talking about constant tests and unnecessary doctor's visits. She is talking about automatically resuscitating a dementia patient who has tried to die naturally. We have talked about that here too and a lot of us are NOT taking our LOs to a lot of extra doctors these days.
She also talks about what happens to the caregiving families of a dementia patient. And boy do we know about that here.
She doesn't talk about killing dementia patients. She says: "It sounds very callous, but most people I know dread being kept alive in a state of mental incapacity..." Please note "...being kept alive..."
It is easy to misunderstand the article. I did at first as well. She wasn't as careful about what she wrote as she should have been, or how she wrote it. But I've already talked to my husband's doctor about the fact that we will not be "keeping him alive" when the time comes to make those decisions. When the time comes, no feeding tubes, no respirators, no antibiotics unless the hospice doctor thinks it is necessary for comfort, etc.
Boy do I wish the author had done a better job of telling her story.
I just read the article and all the comments following. It definitely hit a nerve. It will be interesting to read the comments made here by our very caring caregivers who dearly love their AD spouses and also dearly love their grandchildren who may need care and not be able to afford it.
Most of us here have discussed comfort care in the end stages of AD. I can't speak for anyone but myself, but I surely will not allow feeding tubes, anti-biotics, and heroic measures to keep my husband alive if he is in a fetal state.
However, I think it is a question of WHEN. I agree with Starling in that Dr. Tuteur was not specific or clear enough. Just exactly WHEN does she think our LO's are not worth caring for? Incontinence can come very early, when one still has plenty of faculites and awareness. What are we supposed to do? Leave them in a corner in a pool of urine and feces because Depends cost too much? Who decides WHEN?
I also think that perspective is everything. Dr. Tuteur is an ob/gyn, who is focused on the newborn and young. Based upon her writing, it sounds as if she has NO EXPERIENCE with a loved one afflicted with AD.
"Keeping alive" is different than her statement - "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."
'PROVIDE CARE' does not necessarily mean going to extensive lengths to "keep alive". In my opinion, it means provide humane care of cleanliness and comfort. Is it not "morally incumbent" upon us as human beings to provide that care to other human beings?
This is her blog where she discusses the topic http://open.salon.com/blog/amytuteurmd/2009/04/01/is_alzheimers_care_a_waste_of_money . It is a very interesting discussion. My DH and have have living wills that give instruction for no extraordinary means to sustain life. I think Dr Tuteur tries to create controversy for her blog.
I have news for Dr. Tuteur. My DH and I are part of the taxpayers group. She talks like it is only the younger people who pay taxes and what about the people who have lost their jobs? How much are they paying? Not to mention the elderly paid taxes for many years and may not have used much in the way of medical care. If you go along with her thinking you just keep paying taxes and when you get older and have health problems you shouldn't get health care. Give me a break!
"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?"
I agree with several of the above comments (by members of this group, not Dr. Tuteur). Most of us have already decided that we will not insist on "indefinitely extending the lives of the senile elderly". The same should apply to any condition for which medical science can no longer provide for any improvement - cancer, respiratory failure. What about the elderly, diabetic with kidney failure. Should he/she be put on dialysis? This is getting started down the slippery slope. As long as the patient is alive we should provide for his/her comfort, even if we can do nothing to improve the underlying condition. The alternative, just leaving them alone, is unthinkable.
Maybe we should adopt the Eskimo plan. When a person is too old to be of any benefit to the society, they have a big party celebrating that person's life. When the party is over, and the "guest of honor" has had plenty to drink, he/she is put in a kayak, without paddles, and shoved out to sea.
I read that article with much anguish as well. its indeed a slippery slope and will bring about much controvesary. i agee with marsh most of us have already decided what the course of action will be int he final stages. comfort care with the intention of a dignified death if possible.
what i dont think is discussed is that this dr amy has no idea this is not an exclusive 'elderly' disease. as babyboomers progress in the next yrs we are going to see ALOT of EOAD cases..so in essence we are not exclusively discussing old age dementia patients but some in their 30's and 40's many in 50's. someone needs to enlighten this so called dr AD is NOT exclusive to the just the 'elderly'.. divvi
oh yea, and i remember the hippocratic oath, "first do no harm???"
Oh, don't you worry, divvi, SOMEONE (that would be ME) is going to write to Dr.Tuteur. I will be respectful and polite, but I will "enlighten" her as to how "unenlightened" she is concerning AD.
I have a very dear friend - my "longest" (we don't like to say "oldest") friend who is a PEDIATRICIAN. Her sister is a nurse. Their 89 year old mother lives with the sister. Both of them are involved in Mom's care. I am going to get my friend's input on this subject.
The question is: Is AD care a WASTE OF MONEY? Like countless others, I spent a small personal fortune to help my DH, and I'd do it again in a heartbeat. And without question, I agree that we have a moral obligation to care for those who cannot care for themselves, altho there are certainly those who would disagree, and as someone alreay said, we do it out of love for our own LO. None of us are going to trade places and willingly do what we do for strangers. But what happens when the CG becomes elderly, like me, or when the individual has no family to do the personal care? Generations ago it was easy. Someone was sick or injured, they either got better or died--Nature's way and no one questioned it. Today, it's life at any and all costs, where does it stop? Many of us have said no heroic efforts, but that's for us, I don't have the answer for everyone.
My daughter argues eloquently about the humane qualities of the European system, having lived there for 30 years. However, I do not feel Americans are inhumane, quite the opposite, but with the exception of perhaps a handful of small Scnadanivian homogeneous countries, there simply is not enough money to give all the care needed to all the people--and that's the bottom line. So some meds are denied in the UK for things like AD and even breast cancer, Canadians flock to the US to pay for care they can't get in Canada or have to wait months for a diagnosis for something like a brain tumor. Is that humane? Someone asked--WHO decides? Well, it's a government clerk in a cubicle in an office half way across the country who decides--not you and not your doctor. We complain that insurance companies don't always cover everything--and they don't--and often enough it's because they don't get enough bang for the buck--it is the same with government health care--it's bang for the buck. For good reason, we concentrate on AD, but AD is only part of the overall picture, millions need care for all sorts of things. And so the question is--and it's not an easy answer--but is some medical care worth the MONEY?
If you look at other things she's written, apparently she likes to be "controversial." Not clear what she really thinks..
I dunno, I spend so much less nowadays than I used to. Little going out to eat, no reason to buy new clothes, or fancy wines, or travel; he's not spending all his retirement money on books he'll never read or charities of little worth. Except for the Depends and the once a week "housecleaning" we really spend a good bit less than we used to.
Such a difficult subject. Does anyone remember the Si-fi movie Logans Run? I have only begun to think about my DH's future healthcare needs as far as his ailments other than FTD. His Dr's. are amazed by how well he has functioned with such a weak heart. Most of that is due to medications. How will I feel about continuing his meds when his mind is completley gone? I honestly don't know. If his mind was strong I wolud do anything to preserve his heart but when it's the other way around... I am giving serious thought to have put in writing my wishes if I also fall victim to any of these terrible diseases. I would not want my children to do what I do or to make decisions for me. It would be difficult though to set the parameters for when to stop all treatment. As far as the financial burdens of these diseases, well we've paid taxes all our lives and I personally don't feel a bit bad about taking advantage of what is offered.(have not done so yet) I've heard the same comments regarding saving seriously pre-mature babies. The costs are emormous and the child MAY never be NORMAL. I guess I don't fret about the expense. I can only do what I think is right for DH.I hope I don't live to see the day our goverment makes those decisions for us. cs
p.s. cs - my granddaughter was 24 weeks, 2.4 lb when born. Caught up within a year, and now is totally normal (although 10 year old girls are not always totally delightful!) and accomplished.
I have been thinking about this topic all day. My husband is end stage FTD and lives in a dementia only facility. I don't think a resident is his "neighborhood" has an inkling of who they are or where they are. They are still worthwhile individuals who made their contribution to society. They took care of us and it is our turn to take care of them. Several times over the years my husband developed severe chest congestion. Our care team advised use of anti biotics as a comfort measure. Personally I do not consider that extraordinary measures. I will not, however, consent to tube feeds, ventilator or even CPR. My husband and I were the first in our community to learn and teach CPR and that was in the 70's. I am sure my husband in that way contributed to saving many lives. I could never "throw" him away. Nora
Yes, first thing this morning I read Dr. Amy's blog and all the many responses it had generated on that website, and I've been mulling over all of the arguments pro and con in my head ever since -- on the back burner. Her position strikes me as far too radical (not to mention too misinformed about the true nature of AD, and too provincial about her specialty area embracing child medical care), but it IS a provocative subject -- how best (most bang for the buck, most ethical, most moral, but not most political) to spend PUBLIC money on health care. It would be an interesting exercise to just imagine that we could somehow miraculously suspend all spending of PUBLIC money on WAREHOUSING and MEDICAL TREATMENT of Alzheimer's sufferers for say five or ten years, and use that PUBLIC money instead on RESEARCH and INCENTIVES for finding ways to PREVENT AD. My guess is that with that kind of spending and priority, we'd have an effective cure/prevention breakthrough within that time frame.
Now, as a practical matter, suspending PUBLIC spending on AD care for five or ten years isn’t really going to happen for various ethical/moral/political reasons, but WHAT IF those generous folks in Washington who are throwing hundreds of billions of PUBLIC money at elusive “bailout” and “stimulus” targets could be persuaded that throwing some multi-billions at research and incentives aimed at preventing AD would also be a “good up-front investment”— creating jobs, placing the US in the forefront of medical technology, and significantly reducing downstream PUBLIC costs associated with aging of the baby boom generation?
Where, oh where, is Sunshyne when we need her help in placing some numbers on these alternatives?
Some years ago the state of Oregon got permission from the federal government to base payment for Medicaid treatments and studies on the cost/benefit ratio. The number one, low cost and very effective, was the use of penicillin to treat Strep throats. Near the bottom was a liver transplant in an HIV positive drug addict with hepatitis C who was still using drugs. Each item was listed in order, with the estimated cost for the year. Then the costs were added up, starting at the top, until they had reached the money the state had to spend. Anything above that point was covered, anything below was not. I check some procedures I used and found one of my most common treatments was below the line. I wondered, how in Oregon, I would treat the patient. I then found an alternative threatment above the line that would work just as well and be cheaper. It might be worth looking into something like this to force doctors to use less expensive treatments and proceedures. I find that working in a Free Clinic, with patients who have no insurance, makes me much more aware of the cost of what I am ordering. Almost all the drugs we prescribe come from the Walmart $4 list ($4 for one month supply). In only a few instances do we have to go with the more expensive drugs, such as Aricept, Exelon, Namenda where there is no inexpensive generic equivalent.
In order to give an opinion on the Dr.'s article, I would think one would first have to read the Alz Association report. Something tells me she may be distorting what the report says regarding costs to be covered by public funds. It doesn't make sense to me that public funds would pay for treatment--Medicare only covers doctor's visits and if you have Part D, part of the cost of drugs. The really big expenses, adult daycare, inhome help, assisted living/nursing home costs, aren't covered by government programs except for the VA and Medicaid. I would surmise that the majority of dementia sufferers don't qualify for either of those. In the future, I think Medicaid eligbility will be even more difficult to obtain, because unlike prior generations, the boomers are apt to have most of their assets in retirement accounts. That makes it much more difficult to "spend down" assets to qualify.
You ( and everyone) can read the report she is referring to by logging onto my home page - www.thealzheimerspouse.com. Look to the left side, and click the section on the DC Forum. There is a direct link to the report - ' 2009 Alzheimer's Disease Facts and Figures" in that section.
Joan thanks for taking this on. Feel free inviting her to spend a couple days with any one of us ;o) She'll soon see why we love our spouse and and why we need funding to cure this hidieous disease. Also invite her to read this website. We'll straighten her out.
Thanks, Joan. I think that is something I will try to read on a day when I have no crises to resolve, Steve is otherwise entertained, my brain is functioning well and there is peace and quiet around here. Hopefully, a day like that will happen sooner or later!
Marilyn, with nursing home costs at roughly $80,000/year a lot more of us will be on medicaid (or our spouses will be) than you might think. That's why the Alz. report recommends approaching "long term care" The cost of Alzheimers is what is finally getting attention across the board. A great many of the boomers coming along don't have VA support,not compared to the number of WWII and Korea vets.
briegull--I guess I'm thinking about the people we know, in their 50's and 60's, who have bought long term care insurance as a part of their financial planning. Financial advisers now suggest it as a staple of a good plan--like life insurance used to be. Of course, I would imagine that the economic downturn would have an effect on people's ability to do that, or to keep paying the premiums if they already have it.
If I were starting over as a young person I would invest in minimal life insurance and get into a LTC policy. Long term care can wind up costing much more than the pay out of a life insurance policy. My husband's policy has paid out over $100,000 with no end in sight.
well, back twenty years ago, when my husband retired - I guess it's close to 25 now - we investigated it, and at that time it was so out-of-sight expensive (he was 60!) and only paid for three years - that it was not considered a good buy. We did invest, roughly the same amount, but of course that's gone way down now!
Well, it would be ideal if long term care was covered by Medicare, but, in reality, I just can't imagine it happening. The Medicare program is running short on funds as it is, and with everything else the government is printing money for these days, it sure would be great to have the ltc coverage for all. However, I don't think it ranks as priority (except to people like us) when compared with boosting the economy and of course, the war.
Does this excuse of a human being who decided to publish this vomit of hatred want to kill the jews as well? gypsies, homosexuals, etc... If you can do one, you can do the other?
Whoa down, Guy, whoa down. Take a breath, this extreme is hardly necessary------
On another note, when I first took DH to UCLA a counselor advised me on many things as his CG, including getting LTC insurance, which I did. I did not think my children could manage if both of us got sick w/out ending up in the poor house. At that time it was fairly reasonable and has stayed so as I've aged. Hopefully, I'll never need it, but it eases my mind.
I understand your point, but as Betty said - slow down and take a breath. We need to keep things civilized here. HOWEVER, you make a point that others brought up on the posts to the doctor that accompanied the article. Where do you draw the line? Someone in a message to the doctor wrote: "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...." So you see, Guitar Guy, there are others, including me, who find her arguments more than troublesome.
The doctor is very poorly informed, as she writes, "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."
As all of you EOAD spouses know, AD is NOT just a disease of the elderly, which I intend to inform her. Her premise in the above statement is highly offensive to me AND my 91 year old father. According to her, he's had his share of medical care, so now it's time to give it to the young. My father served his country in WWII, brought up and educated 2 daughters on almost no money, took care of his wife and sister, who were dying of cancer at the same time, and is now physically frail, but mentally sharp. He has a condition that causes him to fall, that can be alleviated by draining fluid from his brain. Needless to say, he and the family have decided that brain surgery is not going to be performed on a 91 year old. But does the doctor feel we should not fix a broken bone when he falls, because he has "used up" his share of medical care?
As I said, I'm working on a response to the doctor. But I am taking my time to calm down, gather the facts, and organize my words carefully.
And Joan, there are some of us with conditions like you mentioned who are Caregiving, and performing positively in society. Would she have had us done in too? Some conditions come in degrees of severity. It appears she ignores this, as well as the fact that mkany of the Alz patients contribute to society for as long as they're able--even after onset. Where would she draw the lines on who still gets car and who loses it?
notice she is NOT a practicing doctor. She is a "medical writer" and hasn't practiced in years. If you look at her blog, you'll see she loves to pose conundrums for people to think about. THIS DOES NOT MAKE WHAT SHE SAID OKAY. What she says can be quoted by wing-nuts and others. I think that anything you say must acknowledge that she possibly doesn't "really" mean what she says - but why it is still dangerous and unfeeling - or she'll come back and say that to you as a defense.
Early on we completed a '5 Wishes' (www.agingwithdignity.org) for us both, indicating that did not replace durable POA or any other legal documents but more clearly defined our medical wishes (POAs, Medical Directives, etc are generally pretty vague). My DH certainly put down things like 'he did not want antibiotic or tube feeding' but decided he did not even want Ensure if he could not eat, as people can stay alive a very long time on that. There's more 'don't want', but you get the idea. He dated & initialed each thing, controversial or not, so all would know that was his wish. Then we shared that info with all our kids and his siblings who lived close. We had a trial run when he had major surgery. We made sure his surgeon knew my DH did not want to be on machines 'even for a few days.' Our kids knew this was being communicated to the surgeon. Absent legalized euthanasia, determined like our insurance by 'Chip' who is faceless and works in a cubicle somewhere far away, the article seems designed to either purposely generate controversy or be totally uninformed/misguided. Since all this, my response had become, "I feel sorry for them." I firmly believe that as you sow, so also shall you reap threefold. Poor lady. And on the 'healthcare' issue...let's HOPE our nation does not embrace socialized medicine, the path it seems to be heading down or many of these decisions will no longer be ours to make.
In Pennsylvania the "medical directive" is anything but vague. The language requires you to state that you do, or do NOT WANT at the end stages:
"Heart-Lung Resuscitation (CPR) Mechanical Ventilator (Breathing Machine) Dialysis (Kidney Machine) Surgery Nutrition supplied by tube Hydration supplied by tube Chemotherapy Radiation Treatment Antibiotics
It also specifies "I direct that a physician responsible for my care issue a do-no-resuscitate (DNR) order, including an out-of-hospital DNR order and sign any required documents and consent."
Please note that the above is a quote from my husband's actual document and mine as well.