Credulity Has Its Place
January 7th 2011 16:00
From the New York Times -- an interview with Governor Mitch Daniels:
"Today, people understandably push for the most expensive treatments because they don’t pay the bill. He would prefer that if you and your family choose to spend tens of thousands of dollars on your final weeks of life, you understand that “the inheritance you will leave to your kids is going to be wiped out, cut in half or something.” Either way, he acknowledged, the choice is “impossibly difficult.”
This seems to make sense, except that it doesn't. Not really. Medical science is, in large part, an oxymoron. The notion of "final weeks of life" implies knowledge that simply isn't there. There will be some cases that are predictable, but others that aren't -- the sort of thing that leads to magazine articles about the healing power of prayer. Then there are the cases where physicians perform a wonderful cure, only to have the patient get hit by a bus on the way home. The assumption that patients and their families make rational decisions about treatment is akin to asking the passengers on a 747 to tell the pilot how to fly a plane.
While there are times when end of life care is very expensive, most of the time this is nothing but the price of palliative care, keeping the patient a bit more comfortable while waiting for a natural death. Heroic measures to extend life are rare -- but the price of an acute care hospital bed runs up quickly.
What Governor Daniels is proposing is care based solely on ability to pay. For a wealthy family, the patient may be given hospice care -- but for a poor family, where a small inheritance may make a difference in a child's education and future career, it may make perfect economic sense to pull the plug as soon as possible. The Republican Party, which opposed the inheritance tax because it might mean selling the family farm to pay the taxes, has its own approach to putting a price tag on death.
Yes, the family, and the patient, should have a say in the matter -- that's what health care proxies and living wills are for. People should be able to express their desire to avoid heroic treatments, but the notion of saying "I reject all treatments that cost more than $7.45 plus sales tax" shouldn't be part of the consideration. The discussion of what steps to take when there are no longer viable treatment options was proposed as part of the Health Care Reform Act, but got labeled Death Panels.
Medical decisions should consider cost effectiveness, but they should be based on the best available information, not just on the price tag. Interestingly, the best resource available if the Cochrane Collaboration, where experts evaluate published studies and reach conclusions which, while not always right, remain the best guides for medical decisions. Unfortunately, these aren't freely available to patients and their families -- except in Wyoming where the State has a subscription that's available to any resident. The rest of us have more information about cars than carcinoma.
Cost of care should be a consideration in medical decisions, but it shouldn't be shifted over to ability and willingness to pay. Recently, the Food & Drug Administration withdrew its approval for use of Avastin in treatment of breast cancer. The drug, which costs $88,000 a year, seems to shrink tumors, but does not extend life. Without evidence that patients on this drug will live longer than those without, use of Avastin places a needless burden on those paying the bill, through their insurance policies or taxes -- but the decision is the result of considerable testing and careful studies. What Mr. Daniels is proposing is too much like sending the family into the drug store with no information but the price tags. We can be more rational than that.
"Today, people understandably push for the most expensive treatments because they don’t pay the bill. He would prefer that if you and your family choose to spend tens of thousands of dollars on your final weeks of life, you understand that “the inheritance you will leave to your kids is going to be wiped out, cut in half or something.” Either way, he acknowledged, the choice is “impossibly difficult.”
This seems to make sense, except that it doesn't. Not really. Medical science is, in large part, an oxymoron. The notion of "final weeks of life" implies knowledge that simply isn't there. There will be some cases that are predictable, but others that aren't -- the sort of thing that leads to magazine articles about the healing power of prayer. Then there are the cases where physicians perform a wonderful cure, only to have the patient get hit by a bus on the way home. The assumption that patients and their families make rational decisions about treatment is akin to asking the passengers on a 747 to tell the pilot how to fly a plane.
While there are times when end of life care is very expensive, most of the time this is nothing but the price of palliative care, keeping the patient a bit more comfortable while waiting for a natural death. Heroic measures to extend life are rare -- but the price of an acute care hospital bed runs up quickly.
What Governor Daniels is proposing is care based solely on ability to pay. For a wealthy family, the patient may be given hospice care -- but for a poor family, where a small inheritance may make a difference in a child's education and future career, it may make perfect economic sense to pull the plug as soon as possible. The Republican Party, which opposed the inheritance tax because it might mean selling the family farm to pay the taxes, has its own approach to putting a price tag on death.
Yes, the family, and the patient, should have a say in the matter -- that's what health care proxies and living wills are for. People should be able to express their desire to avoid heroic treatments, but the notion of saying "I reject all treatments that cost more than $7.45 plus sales tax" shouldn't be part of the consideration. The discussion of what steps to take when there are no longer viable treatment options was proposed as part of the Health Care Reform Act, but got labeled Death Panels.
Medical decisions should consider cost effectiveness, but they should be based on the best available information, not just on the price tag. Interestingly, the best resource available if the Cochrane Collaboration, where experts evaluate published studies and reach conclusions which, while not always right, remain the best guides for medical decisions. Unfortunately, these aren't freely available to patients and their families -- except in Wyoming where the State has a subscription that's available to any resident. The rest of us have more information about cars than carcinoma.
Cost of care should be a consideration in medical decisions, but it shouldn't be shifted over to ability and willingness to pay. Recently, the Food & Drug Administration withdrew its approval for use of Avastin in treatment of breast cancer. The drug, which costs $88,000 a year, seems to shrink tumors, but does not extend life. Without evidence that patients on this drug will live longer than those without, use of Avastin places a needless burden on those paying the bill, through their insurance policies or taxes -- but the decision is the result of considerable testing and careful studies. What Mr. Daniels is proposing is too much like sending the family into the drug store with no information but the price tags. We can be more rational than that.
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Comment by dr db karron
Tell us cases where state mandated choices were in conflict with family and the patient's wishes.
Simply because my mom had 100 days rehab paid by medicade,
she would bounce into and out of the hospital with a 100 day period,
flunking rehab and ventilator weening repeatedly.
The therapist, whom i befriended, called her beyond therapy resistant,
therapy rejection. She was only briefly happy when I convinced her attending that
she needed a nicotene patch. She did 'wake up' for a bit. But the rules would not let her stay on the patch eternally. She had to be forcably weened even on the patch. She was not able to wheel herself in a wheelchair outside the building where the hard core smokers would hook up smokes to their hoses.
Because it was paid for by the state medical standards of care.
In my moms case, the DNR orders could have been overridden by court order or by the intensive care staff, as was the case with my mom. They
were not willing to give up on my mom. Back then we had no idea how terrible living on a vent was. But when we asked her, just before they did the trach and put her on the vent, she paniced when we asked her if she wanted to refuse going on the hose (ventilator). With my sister and I as witness, she wrote out in shakey, wobbley handwriting 'NO NO NO, I WANT TO LIVE'....
but she had no idea how miserable her so called life on a vent would become...
her only happyness was when we visited until ventilator dementia set in for real.
She froze in the bed in a posture of getting out of bed and was unable to lie flat for months. She did not have the strength to get out of bed, but she looked like she was struggleing to get up but never did. After that the geritrician noted she was not maintaining her weight and ordered a NG tube, and then her worse fears were actualized; she was on a feeding tube and a ventilator hose, and unable to say anything (or think anything) about it, in what appeared to be a fully vegative frozen state.
Comment by Sam Uretsky
Random Mumblers Table
What struck me was the incredible cruelty of Mr. Daniels' proposal. The rich, of course, would be unaffected -- they can afford anything. The poor would be bitter, but that's their lot in life -- consider the deaths in Arizona from people waiting for organ transplants, because the State wouldn't pay for the treatment. In one case, as I understand it at least, a patient had a donated kidney from a relative, and they gave the kidney, which had been donated specifically for him, to another patient who had more money. Yes, it seems like the right thing to do, medically, not to waste the donated organ -- yet it also seems incredibly cruel to both the patient and the donor.
But somehow, what I find offensive is the idea that you can make decisions based on how it will effect your inheritance. Would a decision to discontinue treatment, made with thoughts of how much you'll inherit, be much difference from premeditated murder?
Life isn't fair, and distribution of health care resources is notoriously uneven -- but this approach seems incredibly cynical. There are things we think, but don;t say -- and this seems as if it might be in that group.