I am not sure if the current US News and World Report issue represents progress or not. In the US News and World Report two short statements about healthcare reform appear. At issue, Two Takes, are the opposing views of Michael D. Tanner, former senior fellow at the conservative Cato Institute, and Laura Hershey, advocate for people with disabilities and writer. Both Tanner and Hershey were asked "What do you think? Should American healthcare be rationed?"
As one would expect, Tanner and Hershey views are diametrically opposed to one another. Tanner thinks health care is a valuable commodity, a finite one that must be rationed. Hershey points out the inherent dangers of rationing health care for people with a disability. This makes for interesting reading but I find the entire premise undermines disability rights at a fundamental level. Hershey and her life requires explanation and a solid defense. Tanner's existence and life is assumed to have value and he writes from a position of assumed power. This is the exact same issue that Harriet McBryde Johnson wrote about in the New York Times with regard to her meeting and debate with Peter Singer. I thought McBryde won the day but I must be wrong because Tanner and Hershey cover similar fundamental grounds. Why do we people with a disability need to justify our existence? Why do people assume my life and the lives of others with a disability are inherently less valuable? This puzzles me as I have been retrospective lately. Growing up in the late 1960s and early 1970s with a profound neurological deficit was hard. Pediatric neurology was in in its infancy, modern diagnostic tools such as an MRI or CAT scan were figments of people's imagination. The prospects for morbidly sick children such as myself was grim, the overwhelming majority died. The result was that I physically suffered as a child but one thing I never worried about was my healthcare. Technological marvels did not exist, hospitals were sterile and cold environments that controlled every aspect of my life but those charged with my care did a marvelous job. I never doubted my humanity in large part because health care was not rationed nor was it perceived to be a valuable finite commodity. If health care is in fact a commodity I should have died--a massive amount of health care dollars and human labor was spent keeping me alive. This was done without question and I shudder to think of what happens today to people whose care is expensive. Thus like McBryde, I fear what she called the "disability gulag". This metaphorical gulag is not limited to nursing homes but rather is on my mind every time I visit a doctor, enter a hospital ER, and access healthcare in the broadest sense of the term. Will my paralyzed body be perceived to be inherently problematic and expensive? Will I receive the same sort of medical treatment as a person that walked in the door? Will it be assumed I am physically and cognitively disabled? If I have a stroke, will some over tired resident or attending physician assume I do not want to live because I have already suffered enough?
I sincerely doubt the sorts of questions that run through my mind go through the minds of people without a disability. Our bodies, disabled bodies, are out of the norm, subject to intense scrutiny and people such as myself have put a tremendous amount of thought into why this is the case. This is why we people with a disability and those that study disability need to have a voice when health care reform is subject to discussion. My life is at stake as is the life of other people with a disability. If you question this I suggest you read what Laura Hershey has written in the US News and World Report. When she was admitted to the hospital for pneumonia she was asked not once but twice by nurses "Do you have a DNR order?" I have no doubt this question was asked because of her disability. Like other smart activists all too familiar with disability rights her reply was classic: "I came to the hospital to get better not die". Score one for disability rights, nil for ignorance! This story highlights that healthcare is deeply ingrained in our culture and those disenfranchised like Hershey are the people most likely to experience discrimination. Like I said, a lot is at stake--my life.
8 comments:
I think the anger over health care reform surprised a lot of people, and I think the fact that they were surprised indicates that they didn't think through how these things were portrayed.
The "health care crisis" and "47 million Americans uninsured" was one thing, but then immediately there was talk about making hard choices and so on. Well, hard choices are being made now, and they're actually inevitable no matter what kind of health care system we have. But if you start out talking about that, then that is what people hear.
Zeke Emmanuel says that his writings have been distorted, which I am happy to see is the case. Here. At the same time, the end-of-life verbiage has supposedly been pulled from the pending legislation in response to protests. So what are we to think? Supposedly, the idea was only that doctors who talk to end-stage people about their options should get paid to do that, but as far as I knew, they already are.
One understands that we can't give everybody everything. The State of Tennessee just about bankrupted itself trying, and Memphis almost lost its good children's hospital - if Methodist hadn't taken it over it would have closed.
If you talk about rationing health care, then the question has to be asked, who is doing the rationing. I may decide that my migraine prophylactic is too expensive and I'll just do without b/c I'd rather go to the movies or whatever - that's rationing. (Thankfully, it's very cheap.) Or the insurance company may say, we'll pay X toward this treatment, and anything else you'll have to come up with yourself. That's not really rationing, because you still have the decision to make, whether you can or want to cough up the money. But I remember the nurse in the UK whose doctor wanted her to take a new drug to fight her breast cancer; the NHS not only wouldn't pay for it, but they wouldn't let her pay for it unless she opted out of NHS care altogether, b/c it wouldn't be fair to other patients who couldn't afford to pay for their own. That is the kind of rationing we don't want to see here.
So I think it would be better to have taken steps toward helping the folks who don't have coverage, or whose coverage isn't sufficient, rather than to do this broad, sweeping thing that's going to affect everyone, (and in a 1000-plus page doc that our congresspeople were going to sign without reading, how scary) and talk in the same breath about rationing and end-of-life decisions.
...My MIL had a very sudden and desperate illness a few years ago. The doctors were kind of shaking their heads in ICU, and one asked my SIL how long her mother had been bedridden. "She wasn't bedridden!" my SIL said. "We were out shopping when she got sick!" Their attitude changed abruptly and they set about getting her well. That makes me kind of angry when I think about it, even now.
Laura, What is lost in the hysteria about health care are the very reasonable and important reforms being suggested. I suspect most people wopuld agree withe the following:
1. No more coverage denials because of your age or pre-existing conditions;
2. Decent, guaranteed benefits like members of Congress get;
3. A cap on what you pay out of your pocket so no one faces medical bankruptcy;
4. A national insurance market with more choice, clear pricing and no hidden costs; and
Discounts on polices for those who can’t afford coverage.
These reforms do not seem controversial to me but I do not read or hear anyone discussing them. Instead we get story after story of "death panels" that do not exist. This is the same hysteria Clinton encountered that led him to abandon the idea of health care reform. Sadly, the level of discourse one comes across has not changed and may defeat Obama. I hope this is not the case as our current health care system is hopelessly flawed.
"1. No more coverage denials because of your age or pre-existing conditions;"
If we do this one we will have to mandate that everyone get insurance whether or not they think they need it or want to budget the money for the premiums. Otherwise people will not have it when they're healthy and buy it when something happens, and that's just not sustainable. I think everyone should have it, of course, and eat franks and beans four nights a week if necessary so they can pay for it, (have done this myself,) but I shrink from thinking that it's for me to tell someone else what his or her priorities ought to be.
"2. Decent, guaranteed benefits like members of Congress get;"
I am totally with you there. Can't believe that we have a system that allows Congress to decide what's good for the rest of us but they get to opt out.
"3. A cap on what you pay out of your pocket so no one faces medical bankruptcy;"
Well, the difficulty here is that people may go bankrupt from a series of bad luck, poor choices, or any combination of the above. Expenses that one person takes in stride might bankrupt another person, even if they have the same income, for this reason. So a cap is fine, but I don't think you can have one such that medical bankruptcies are prevented.
"4. A national insurance market with more choice, clear pricing and no hidden costs; and
Discounts on polices for those who can’t afford coverage."
Sure. Once again, we could get into what "afford" means - don't want to rag on the poor, but I'm talking about what I see. If a person spends $100 per month on cable TV, how much can he/she afford to spend on health insurance premiums? And this would be none of my business, except that we are now wanting the taxpayers to fill in the gap. How much of my taxes should go to supplying premiums for that person, when I am also providing for myself and choosing to forgo cable so I can have stuff like medical insurance? So I can get on board with what you say, as long as we can have an open and honest discussion about what "afford" means - and of course, that won't involve discussions about cable TV, but income levels and numbers of household members.
Re: the hysteria at the town hall meetings. I think it's there b/c it looked like this tremendous thing was going to happen very fast without anybody asking questions or any way to put the skids on. Same with Hillary care, so you'd think somebody would have figured this out. Sometimes throwing a tantrum is about the only recourse a person has.
Laura. As always I shoot from the hip and you force me refine my views. For t his I am grateful. I think there are answers to the problems you pose on the points I raise.
1. We mandate many things like income tax, state tax, speed limits, etc. I do not want my money to go towards the military budget but have no say in the matter. I see no reason we cannot mandate money from every citizen for health care. If you want more than the minimum coverage it should be available. As it is people such as myself cannot possibly get health insurance. I have so many preexisting conditions I no longer bother to try and get full coverage. Last time I tried it would have cost double my income.
2. We agree here.
3. My out of pocket expenses could purchase a car. In wheelchair cushions alone I have spent well over $10,000. If it were not for the support of my family I would be bankrupt and living in a nursing home not of my choosing. Every paralyzed person I know faces the same problem--out of pocket expenses are astronomical. I think the benefits here far outweigh the inherent problems you mention. I mean who really wants to purchase catheters and wheelchair cushions?
4. The durable medical goods industry is designed and run by crooks. The cost of medical supplies is devoid of reason. No person without adequate insurance can survive. For instance, my wheelchair parts come from bike shops. Identical items from a surgical supply house would cost 10 times the price. Choice, clear price limits are desperately needed. My goodness a urine analysis is $100. Which is cheaper a urine test or ten days in the hospital with IV antibiotics?
On the hysteria: we need to change out cultural mind set towards health care. On this front I think we are on the same page. All must be treated equally and hard decisions must be made and this requires deep thought and intense reasoned debate. We have plenty of people willing to scream and distort the facts. We have lots of people like Peter Singer willing to justify killing the old, sick, and disabled. We need compassion and reasonable people that disagree but can find compromise and common ground. Heck, if you and I can do this why can't our elected officials?
"Heck, if you and I can do this why can't our elected officials?" Because we have low-drama day jobs, and we're the kind of people who like it that way. Elected officials, not so much.
I appreciate your letting me express myself without telling me I'm a bad person who doesn't want poor people to have cable TV.
I think health care costs are nuts because the market got totally distorted by insurance and by the government - hence your less expensive bicycle-shop wheelchair parts.
The skipping of the urine test and spending money on IV meds is certainly just one example of some really dumb decision making on somebody's part, probably a bureaucrat, and nobody even looking at dollars and cents - nobody, because it's nobody's job who cares enough. And doctors themselves sometimes make really stupid decisions. Sometimes I wonder why I go to them when I know more about whatever-it-is than they do. Had a doctor back in Memphis who was wonderful about cutting past the nonsense and solving the problem, and he was one of the two or three things about that city that I regretted leaving.
I think attempts to fix healthcare are hurt by people making decisions based on the assumption that other people will act as they would, and that's never a good idea. Example: When Tennessee first implemented TennCare, one driving force was the desire to empty the waiting rooms at ERs. People who signed up were supposed to pick a primary care doc, and after a grace period of a few months, they were to be required to go to that doc for routine care. There are many good reasons for this: it's less expensive, you're more likely to get followup care, you can develop a relationship with a doctor, it frees up the ER for actual emergencies, etc. And this was expected to happen. Only the ERs never changed. The newspaper sent a reporter around during a weekday a few years after this was implemented, and he asked some folks lined up at the ER (and waiting for hours) if they'd mind telling him why they were there. Most of it was the kid's earache or Granny's arthritis kicking up, things like that. Don't you have a primary care doctor? Well, yes. Then why are you here? Because this is what we're used to ... I don't like making appointments ... don't like the receptionist at the doctor's office ... and so on. And the ER people wouldn't turn them away. So this didn't get fixed, after all, and there's no reason why it shouldn't have, except that the man in the street has free will and he doesn't always exercise it the way the politicians expect.
When you put actual human beings into the equation, all kinds of unexpected things can happen that blow your theories of what will work all to smithereens. Another reason to start small, by the way, maybe on a pilot scale somewhere, to see what actually works, as opposed to what looks good on paper.
Another thing I have figured out is that when the government gets ready to cut loose some money for something, scammers come out of the woodwork with their hands out. Saw this with TennCare too, there was next to no oversight, and some really awful things happened that I won't go into here. This is probably part of the market distortion I was talking about, but not the whole picture.
Anyway, I appreciate the conversation.
Laura, I love being unknown and having a day job that is anonymous and rewarding. I could never live in the spot light politicians seem to adore.
I appreciate your willingness to engage in a lively and educational exchange. That is what this blog is all about--learning. I also know my views are well out of the norm. I am accustom to be yelling at and it is not fun.
Health care reform has not worked in Tenn. I will accept this as I am not familiar with the state. But health care initiatives have worked very well in Vermont, a state I am familiar with. Thus I agree a trial could be used at a state or local level to test how ideas in theory work in real life. And, sadly, yes, there are hordes of people out there that are all to ready to scam the government or individuals.
I suspect where we disagree at a fundamental level is you are willing to accept the status quo. I cannot accept this as I too many people with a disability are get screwed and die needlessly or have their lives hopelessly compromised. Yet as each and every day passes I think people with a disability are being used as political props to support or defeat certain health care ideas. Frankly, this pisses me off in the extreme. Here i refer to both Democrats and Republicans.
So if my ideas that I think were reasonable don't work what do you propose? How do we make health care affordable? Since this blog is about disability how do we lower the price of durable medical goods so people like me can afford them and not rely upon the generosity of family? I know my insurance company does not care nor does any wheelchair manufacturer.
"I suspect where we disagree at a fundamental level is you are willing to accept the status quo. I cannot accept this as I too many people with a disability are get screwed and die needlessly or have their lives hopelessly compromised. Yet as each and every day passes I think people with a disability are being used as political props to support or defeat certain health care ideas. Frankly, this pisses me off in the extreme."
I wouldn't say I am willing to accept the status quo. There could never be a system that could not be improved, and the system we have certainly has some glaring problems. The ER overcrowding is one, for the reasons I mentioned.
I have a hot-button issue, myself, and it's the infant mortality rate in Shelby County, TN, which rivals that of 3rd world countries. The Governor announced the formation of a special committee to address this some time back. There are a lot of premature and low birth weight babies. Part of this is due to the poor health of the mothers, untreated gestational diabetes and high blood pressure and so forth, and the assumption is made that these women don't have access to health care. But they do. There are vans that go into the poor neighborhood to do screening for these things, and transport them for care if needed. Also, education about proper nutrition is constantly being done. Prudential and other companies have done studies to try to find out why women who have health coverage don't get prenatal care - what they found was that the major barrier wasn't money or transportation, it was lack of emotional support from the husband or boyfriend (how do you fix that?) But what majorly causes the prematurity is teenagers getting pregnant before their bodies are mature enough to support a pregnancy. I've spoken to people in the medical field who have told me it's not infrequent that a girl never even begins to menstruate - she's pregnant as soon as fertile, which means somebody's been at her even before puberty. But of all the studies I've seen, I've never seen one where anyone looked at who is knocking these little girls up, whether it's boys their age or grown men, and if possible, jailing those people to put a stop to the predation. Instead, all of the problem solving has to be done on the back end.
Political props, yes, and when people are used as political props then problems are not being solved. Money is wasted and even what works is being screwed up, but the problems are still as big as ever. I saw this in the public school system back in Memphis too.
How to solve the durable goods problem? I suppose that the disabled population needs its own Sam Walton - somebody who can ignore the temptation to screw the government and insurance companies out of every penny they can get (hence really screwing people who are on their own) and get back to simple market economics - provide a quality product at a reasonable price. They're going to have to totally end-run around the insurance providers to do it, though, b/c otherwise they'll have to pay for all the overhead of the paperwork clerks and claims experts and waiting 30 days to 6 months for their money. And I don't know if it's even legal to do that anymore - to offer, on the free market, goods that Medicaid or Medicare would pay for, to people who are on one of those programs. I'm serious about that. If it still is, it may not be for long.
Well, thanks for letting me blather. You said it is a disability blog, and there I went way off-topic. Going forth, I'll stick to the subject and blather on my own blog. But I just wanted to demonstrate that I do care, I know there are problems, I want them fixed, but I don't think the solutions will be easy, I don't want to see facile assumptions made about what the problems are, I don't trust the gov't to be smart about it or not to do grand-standing at the expense of solving the problem, and I want to see demonstrated results on the small scale before I believe the fed. gov't can overhaul everything and make it better.
Laura, Glad to know you are open to reform of some type. There are far too many problems with health care today to resist significant reform in addition to the one's mentioned here.
I am glad you have an issue you care about. Infant mortality rates in this country are hard to accept. The attempts at reform in Shelby County, Tenn that have not worked are replicated in other places. Long ago an anthropologist named Oscar Lewis wrote about the culture of poverty--a concept that has been misunderstood and confused. The point f his work at a general level was that fundamental change must take place throughout a culture. Here, I think the infant mortality issue must be looked at from a larger cultural context. One cannot change just infant mortality but rather one must seek to change the entire culture. This is the only means to create effective change. A bad analogy could be made to losing weight. Anyone can lose weight by going on a diet. The real trick is keeping the lost weight off and to do so one must change their life style. This, of course, is easier said than done.
You can blather away anytime on this blog. I want people to read and think and you always make me do that for which I owe you thanks.
Finally, I don't trust the government either. But I also do not trust big business. Ethics are utterly and completely absent. Money is valued above all else in this country and we are all suffering as a result. I will take the slow moving beaucracy of the government over the greed of the 1% of super rich than controls much of the economy and wealth.
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