Respectful Insolence

A little more than a year ago, the entire nation was captivated by the case of Terri Schiavo. As you may remember, Ms. Schiavo was an unfortunate woman who lapsed into a persistent vegetative state after suffering anoxic brain damage after a cardiac arrest. Her husband insisted that she had stated that she never wanted to be kept alive in such a state; consequently, he fought to have her feeding tube removed. Her parents fought to have it left in. Eventually, her husband Michael Schiavo prevailed, and Ms. Schiavo died on March 31, 2005. In my mind, this was indeed a matter of personal autonomy, not state-sanctioned murder, as the activists who pilloried Michael Schiavo and made ill-founded comparisons to the Nazis represented it. (As has been said sarcastically about such comparisons, “Yep: Adolf Hitler, famous advocate for patient autonomy.”)

Now a more disturbing case has come to my attention, that of Andrea Clarke. Oddly enough, I only just discovered it on Saturday as I was catching up on reading my medblogs and found the story at Medpundit, even though it’s been going on at least since April 21. That’s when Andrea’s sister, a lifelong Democrat, posted a plea to the Democratic Underground discussion boards under the subject header, “Killing My Sister – We Are Protesting – Help Us”:

My sister, Andrea Clarke, is at St. Luke’s Episcopal Hospital in Houston, TX. St. Luke’s is located at:

6720 Bertner Avenue, Houston, TX. Their phone number is: 832-355-1000.

The hospital ethics committee met the day before yesterday and concluded that Andrea’s treatment (respirator and dialysis) should be discontinued. We have ten days to move her from that hospital or they will “pull the plug” and let Andrea die. Andrea, until a few days ago, when the physicians decided to increase her pain medication and anesthetize her into unconsciousness, was fully able to make her own medical decisions and had decided that she wanted life saving treatment until she dies naturally. We have learned that this is part of the process, when hospitals decided to declare the “medical futility” of continuing treatment for a patient. But, this is not a Terry Schiavo case; not anything like it. Andrea, when she is not medicated into unconsciousness (and even when she is, and the medication has worn off to some degree) is aware and cognizant. She has suffered no brain damage to the parts of her brain responsible for thought and reason, or speech. She has only suffered loss of some motor control. The reason that the physician gave to medicate her so much is that she is suffering from intractable pain in the sacral region (in other words, she has a bedsore that causes her pain). This is not reason enough, in our books, and we are trying, as we speak, to get Andrea’s medication lowered so that she can speak to us.

There is also some disagreement as to whether Andrea is really in that much pain, as well. When she is not medicated to this degree, and she sees her son, Charles, she smiles. She also mouths words (Andrea is very vocal, normally, even with a trach, and asks for food, etc., when she is not medicated to the gills). Once again, this is not like the Shiavo case, where there was brain death. Andrea has voiced her wishes, over and over again, and if she were not on so much pain medication, she would voice them again.

Houston hospitals have a policy in that once the medical treatment of a patient has been deemed “medically futile” no other hospital in the area will accept transfer of that patient to their facility. This means that the patient, who is usually in a very delicate condition anyway, has to be transported over a long distance, in order to receive care.

We received notice of the ethics committee decision the day before yesterday and we are organizing a protest to take place tomorrow, at 2-2:30pm outside St. Luke’s Episcopal Hospital. Our family members number four and we will all be there, but we need more people. Please help us.

Of course, in the above post we are only getting one side of the story. Until this weekend, there was surprisingly little in the press about this, and the main sources of information I was able to find were follow-up posts in the Democratic Underground message boards, one of which speculated (probably with some justification) that this was about the insurance company balking at paying for long-term care for Clarke, a whole lot of posts on right wing blogs, a pro-”intelligent design” blog, and Daily Kos. My two favorite bioethics blogs, blog.bioethics.net (the blog of the editors of The American Journal of Bioethics) and Bioethics Discussion Blog, have been surprisingly (and disturbingly) silent on the issue as of this writing, even though this case has been going on for nearly two weeks and one of them has even commented again on the Schiavo case.

Let’s set one thing straight right off the bat. As Andrea’s sister says and contrary to what some say, this case is not analogous to that of Terri Schiavo. In Schiavo’s case, the fight was over personal autonomy, the court having concluded multiple times that the evidence showed that Ms. Schiavo did not want to live in a persistent vegetative state. Consequently, the Schiavo case was a case of patient autonomy, of honoring Ms. Schiavo’s wish, not a case of the state wanting to “murder” Ms. Schiavo. Also, unlike Ms. Clarke, Terri Schiavo was in a clearly hopeless state, with no hope for recovery of any sort of neurological function. Her brain CT and MRI showed massive irreversible atrophy from her anoxic brain injury. Ms. Clarke, on the other hand, is not in a persistent vegetative state and is able to communicate when she is not too sedated to do so. Certainly the hospital has not attempted to argue that she is not able to communicate her wishes.

Andrea Clarke is 54 years old and has a long history of heart problems. Indeed, news reports indicate that she was one of the “blue babies” upon whom Drs. Michael DeBakey and Denton Cooley operated on in the late 1950′s. I could not find out what specific cardiac operation she underwent late last year, but it was complicated by bleeding in the brain and multiple infections that have left her ventilator-dependent with a tracheostomy. Despite her condition, it is clear from the reports I’ve been able to find that Clarke is able to communicate by mouthing words and has made her desire to live known. However, under the Texas Futile Care Law of 1999, hospitals can convene a meeting of their bioethics committee and declare further care “futile.” Once that decision is made, the wishes of the patient or family no longer matter, and the hospital only has to give the family ten days to try to find another facility to care for the patient, or the plug can be pulled:

Under Chapter 166 of the Texas Health and Safety Code, if an attending physician disagrees with a surrogate over a life-and-death treatment decision, there must be an ethics committee consultation (with notice to the surrogate and an opportunity to participate). In a futility case such as Andrea’s in which the treatment team is seeking to stop treatment deemed to be non-beneficial, if the ethics committee agrees with the team, the hospital will be authorized to discontinue the disputed treatment (after a 10-day delay, during which the hospital must help try to find a facility that will accept a transfer of the patient). These provisions, which were added to Texas law in 1999, originally applied only to adult patients. In 2003, they were made applicable to disputes over treatment decisions for or on behalf of minors. One of the co-drafters in both 1999 and 2003 was the National Right to Life Committee. Witnesses who testified in support of the bill in 1999 included representatives of National Right to Life, Texas Right to Life, and the Hemlock Society. The bill passed both houses, unanimously, both years, and the 1999 law was signed by then Governor George W. Bush. The statute was designed to keep these cases out of court.

Interestingly, the law seems to mention a patient’s surrogate’s wishes, but not the patient herself, the assumption being that the patient is incompetent. I can’t reasonably comment on whether Ms. Clarke is incompetent to decide, but, if her sister’s account is correct, she may indeed be competent to decide her own fate. Regardless, once the doctors got the decision they wanted from the bioethics committee, the hospital played hardball. The family could not find any hospital in Houston or even Texas that would take Andrea, but they did find one in Illinois, as described by Wesley J. Smith (a Senior Fellow at the Discovery Institute and hence someone whom I would rarely find common cause with):

Since the patients threatened with death by ethics committee are often the most expensive to care for, it will often be difficult for families to find other institutions willing to accept a transfer. But the futility deck may be especially stacked against Houston patients. Many city hospitals participate in the “Houston City-Wide Guidelines on Medical Futility,” raising the suspicion that participating hospitals will not contradict each other’s futility decrees.

If so, this would mean that patients seeking refuge from forced treatment termination will have to be transported to distant cities, as has already occurred in a few futile-care cases, perhaps even out of state. Illustrating the level of hardball some hospitals play against patients and families, the Clarke family’s lawyer Jerri Ward told me that St. Luke’s agreed to pay the $14,806 transportation costs to transfer Clarke to a hospital in Illinois — more than 1,000 miles away — if the decision to transfer is made on Thursday (4/27). If the family doesn’t decide until Friday, the hospital will pay only one-half of the cost of transportation. Thereafter, it would pay nothing.

Unfortunately, even the above deal fell apart when the accepting institution realized that Clark’s case was too complex for them to handle, and it is unclear what will become of Clarke. The hospital has decided to hold off on pulling the plug beyond the original deadline of yesterday until a meeting on Tuesday to discuss the case.

This case brings up a number of serious issues. In my training, I participated in the care of a number of patients like Ms. Clarke, chronically dependent on the ventilator and even on dialysis. They tend to be what we call “metastable.” In other words, they are not making any real forward progress in getting off the ventilator and getting better (nor is there much hope that they will), but they are not clearly going downhill, either. Despite their apparently “stable” condition, they are either too complex or not stable enough to be transferred to a cheaper long-term care facility or nursing home capable of caring for ventilator-dependent patients. Consequently, they stay in the ICU, sometimes for many months–or even, as in one case I saw at the Cleveland VA Hospital, for well over a year–until they either show signs of improvement or die. Clearly such patients are enormously expensive to care for and can rack up medical bills of hundreds of thousands, if not millions, of dollars, which is why hospitals are often desperate to try to find a way to transfer them to a long-term care facility. When such patients (or their families speaking for them) no longer want care, it is clearly ethically justifiable to grant them their wishes on the basis of personal autonomy. But what do you do when the patient apparently wants to keep living, even on a ventilator and reportedly in pain, with little (but not no) hope of improving. How much suffering constitutes too much to keep putting the patient through and shouldn’t the patient be the one to decide? How small a chance of recovery is so small that withdrawing care is justified even in the face of a patient and family who do not want support withdrawn? These are very difficult questions, and they will come up more and more as we face the decision of who will pay for increasingly expensive technology to prolong life even when there is little hope of recovery. In many nations with state-paid health care, in a case like Clarke’s, additional care other than palliative care would have been denied a long time ago. It’s also a mistake to pillory Clarke’s doctor as uncaring or even downright evil, as some have done. What may be difficult to understand just how truly difficult a thing it is to care for such patients day in and day out with little evidence that they are getting better and little hope that they ever will. It bothered me when I was a resident, and I had the knowledge that in one, or at most two, months I would be moving on to another rotation, making the patient no longer my problem. Imagine having to take care of such a patient indefinitely, particularly if you were the surgeon who operated on her, resulting in the complications that led to her condition. Most doctors, faced with such a patient, will eventually come to view that patient’s care as futile and wonder why they are continuing to “torture” the patient needlessly. Indeed, at their heart, medical futility arguments are based on value judgments:

Clarke’s case involves value judgments rather than medical determinations. In such “qualitative futility” cases, treatment is stopped in spite of a patient’s or family’s objections — the intervention is necessary not because the treatment doesn’t work, but because it does. In essence then, it is the patient’s life that is deemed futile and, hence, not worthy of being preserved.

Arguing such cases from patient autonomy cuts both ways. If a patient’s stated wish that, in the event of becoming ventilator-dependent or comatose with no hope of recovery, he or she wouldn’t want to have life prolonged is sacrosanct (as it should be), it’s difficult to argue at the same time that a patient’s wish to have everything done should not also be sacrosanct. (It’s not without justification that some have boiled the Clarke case down to, “In other words, you’re free to choose, as long as your choice is for death.”) True, it could be argued that society is not under any obligation to honor such a wish if the requested care is truly futile or in very short supply (i.e., providing it to this “hopeless” case would deny it to others that it might save, such as organ transplants) and society has to pay for it. Arguably in this case, neither condition applies. Clarke could live for a long time, perhaps years, if ventilatory support and dialysis continue to be provided, and she has not yet exhausted her health insurance. In such cases, although there may come a time when our resources no longer permit us to do this, deference should be given to the patient’s wishes and we should try to err on the side of life, barring a compelling ethical argument not to. At the very least, every attempt should be made to determine it is true that, as her sister says, Andrea Clarke is capable of articulating her wishes about her own fate.

So far the hospital has not made a compelling ethical argument about why Clarke’s personal autonomy should be overridden, nor has it demonstrated that the representation of her wishes by her family is not valid. Indeed, it has done nothing to blunt the impression that this is more about money than bioethics. Few would argue that society has the resources to spend on “futile care” indefinitely. The problem is deciding what constitutes “futile” care and who gets to decide. The other problem is who will pay for it. Right now, it’s hard to escape the impression that the hospital (and the State of Texas through its law that allows the hospital to do what it is doing) are motivated primarily by finances rather than ethics. If the hospital and those supporting the withdrawal of care against a family’s will are going to make the argument that we as a society can no longer afford to provide what it considers “futile care” to Clarke and others like her, that doing so raises everyone’s health care costs and uses up scarce resources for little or no benefit, they should make that argument rather than hiding the what is clearly primarily an argument weighing the good of the patient versus the good of society in unconvincing arguments based “personal autonomy”–or explain how it serves personal autonomy to let a woman die against her and her family’s will.

NOTE: I have posted an update here.

Comments

  1. #1 John Wilkins
    May 1, 2006

    Let’s see the GOP and the Bush administration get involved in this one…

  2. #2 TheProbe
    May 1, 2006

    I vaguely recall another case in Texas a few years ago which was determined under our Right-To-Life President’s law. I wonder what the case would be if the patient or their family were financially so well off that they could afford to pay for their own medical care indefinitely? Would the hospital be so quick to move in this direction? Somehow, I do not think so.

    A few years back the Governor of Colorado made an off the cuff remakr about allowing seniors to die to save money. He was castigated at the time. Where are those people today?

  3. #3 William the Coroner
    May 1, 2006

    I think I remember that guy at the Wade Park VA from when I was a surgical clerk.

    Autonomy is a two edged sword. If the choice isn’t what the authorities (be they government or medical) think the choice should be, it should still be honored. Otherwise, you’re no longer talking about choice, but paternalism.

    Gee, that wouldn’t apply to other issues, now would it?

    Nah!

  4. #4 Samantha Vimes
    May 1, 2006

    Bush signed in the law that lets the hospitals do this. A baby was taken off life support against the objections of family in a Texas hospital at the same time the Schiavo case was hitting high profile news.

  5. #5 Mike
    May 1, 2006

    Who else, with a much better chance of living a purposeful life, might die if this lady takes up scarce resources to no purpose. She’ll go to heaven anyway won’t she?

  6. #6 Andrew Wade
    May 1, 2006

    Who else, with a much better chance of living a purposeful life, might die if this lady takes up scarce resources to no purpose.

    But it isn’t to no purpose; it would seem the lady is still getting some value from her life. The cost isn’t necessarily in lives, it might rather be in quality of life: with less disposable income there are going to be fewer large tvs. Fewer cars. Crappy dentures. Whatever… It’s nice to pretend that we wouldn’t allow people to die just for the sake of nicer toys, but our choices as a society belie that. We don’t spend all our resources on extending human life, and as a result some people are going to die earlier than they otherwise would. As a society we must make decisions that put a finite value on human lives. We can pretend that they’re not those sorts of decisions, but I’m with Orac: I’d prefer that we be honest about what decisions we’re making. How can we make good decisions when we don’t acknowledge what we are deciding?

  7. #7 Anon
    May 1, 2006

    In America, nobody seems to care about a very obvious question: who’s gonna pay (for all this special care)? It’s very nice that the family cares this much about the patient; now they should put their money where their mouth is.

    It’s the typical consumer behavior of the American citizens: first they don’t save money for future problems, then they whine about not being able to pay for them. A 54 year-old person should have hundreds of thousands of dollars in retirement accounts, which would pay for medical care for years.

    I think the hospital has every right to pull the plug. They have every right to limit their financial losses.

  8. #8 Dave S.
    May 1, 2006

    Samantha Vimes says:

    Bush signed in the law that lets the hospitals do this. A baby was taken off life support against the objections of family in a Texas hospital at the same time the Schiavo case was hitting high profile news.

    Yes, I remember that case too. The baby was 6-month old Sun Hudson, and the plug was pulled against his parent’s wishes by the hospital, based on the authority of Governor Bush’s Advance Directive Act.

    This case was all but ignored during the Schiavo circus.

  9. #9 Andrew Wade
    May 1, 2006

    In America, nobody seems to care about a very obvious question: who’s gonna pay (for all this special care)?

    The state. I am unabashedly socialist when it comes to medical care. And yes, that means higher taxes, which means that citizens will have less disposable income (except for those who require expensive medical care).

    It’s the typical consumer behavior of the American citizens: first they don’t save money for future problems, then they whine about not being able to pay for them.

    Foolishness with money should not be a capital crime.

    Anon, there is one other thing you are missing, and that is the effects of poverty. A significant proportion of America’s population cannot justify saving significant amounts of money; they may not have enough to cover their existing needs, and neglecting their basic needs because of the mere possibily of needing medical care later would be the irresponsible choice. And if an expensive illness occurs, they’re screwed. In theory this is where medical insurance would come in. In practice HMOs screw the patients over, and to add injury to injury, someone with a expensive medical condition will have a very hard time finding legitimate employment.

    I think the hospital has every right to pull the plug. They have every right to limit their financial losses.

    Running hospitals as for-profit businesses is almost as bad an idea as running prisons that way. Nonetheless, the money for patient care does have to come from somewhere, and if the money isn’t available someone is going to have to lose out.

  10. #10 Anon
    May 1, 2006

    I come from a country with a socialist healthcare system. Trust me: there are few things worse than that.

    In America, nobody seems to wonder: What is more important? Saving one Andrea Clarke or one hundred others? (Let’s not talk about the thousands of children in Africa you could save daily with the cost of her care.) Because, with this socialist view, this is what it comes down to. A hospital, for-profit or not, has limited resources. There should be a limit to wasting money on desperate cases. We all pay for that, even in a capitalist system.

    I agree that there should be protection for poor people (better than Medicaid), but everything has to have a limit. Even in a socialist system, people should have like $100,000 lifetime coverage, after which it should be up to them. Otherwise, it ends up in a corrupt quasi-bankrupt system, where almost nobody receives proper care, except the “insiders”. I’ve experienced it first-hand, thank you very much.

  11. #11 epador
    May 1, 2006

    For those of you making this a partisan issue in this thread, read your history more closely: Governor W signed the law only after significant attempts to weaken it (it was a Democratic initiative) and add at least the 10 day waiting period. It wasn’t his plan, and there was an attempt on his part to reach a compromise to keep from vetoing the whole bill.

    BTW, the patient was supposed to be transferred to a hospital out of state this week.

    The family’s take on the issue was that the insurer (BCBS) directly or indirectly pressured the hospital to pull the plug. A non-partisan effort from both Republican and Democratic folks pressured the hospital into extending the deadline and paying for the transfer out of state. The negative media attention apparently had effect. An effect generated through the blogsphere.

  12. #12 Sid Schwab
    May 1, 2006

    The case is a loud example of the inevitable clash between morality and money, as applied to health care. If resources (financial and human) were unlimited, it likely wouldn’t be an issue. All things for all people. Like Orac, not knowing detail limits specific comments. But the situation arises, and nearly all physicians have had to deal with it. There are times when ethics committees are just what are needed to add weight to reason. There are also, perhaps more so in Texas, when they are shills for the hospitals’ bottom line. The Schiavo case was never much about healthcare. This one is: it forces us to face that conflict arising from limitations on resources; on health care costs and how draconian a solution we are willing to face. And the more imbalanced are our priorities, the more ill-advised revenue decisions are allowed, the more we let government ignore the problems they are creating, the worse it will get. At the very least, one might hope a case like this would open some eyes. But it won’t, at least not in D.C.

  13. #13 Joseph Hertzlinger
    May 1, 2006

    We reactionary wingnuts have not been ignoring this. This has been covered on # Blogs for Terri, # Right Wing News, # My Vast Right Wing Conspiracy, etc.

  14. #14 Andrew Wade
    May 1, 2006

    I come from a country with a socialist healthcare system. Trust me: there are few things worse than that.

    I too come from a country with a socialist healthcare system (Canada). And the health case system in the United States is worse than that. Really. Not for the rich–the standard of care for them is excellent (and there’s nothing wrong with that). But those further down on the socioeconomic ladder can’t afford that standard of care. If they’re lucky they merely go bankrupt paying hospital bills and the sufferer finds himself unemployable. If they’re unlucky, they can’t get good care at all. And for all that, the U.S. system doesn’t even save money over Canada’s, despite the corruption up here. Sure it’s not on the public purse, but as individuals the public pays and pays (and pays for decreased productivity due to illness on top).

    Now, I admit that the United States is probably not the best examplar for for-profit health. Private health insurance need not be as broken as it is in the United States. But a person in an emergency medical situation (as does happen) is not in a position to comparison shop for hospitals, and is thus vulnerable. Neither is a person covered by an HMO in a position to comparison shop for doctors, and this would not be such a problem were they able to choose their HMOs, but this is often not the case either. (It’s often either a crappy job with an HMO that is committed to the cheapest care possible, or not job and no coverage at all). The poor get screwed in a capitalist system. The poor get screwed regardless, but such things as socialised health care can soften the slings and arrows of outrageous fortune.

    A hospital, for-profit or not, has limited resources. There should be a limit to wasting money on desperate cases.

    Oh absolutely. And not just desperate cases either; the differences in cost for some drugs can be dramatic with very little difference in efficacy. (In fact, pharmaceutical companies can occasionally get a less effective, more expensive drug prescribed more than a more effective alternative).

    There is one area where Canada screws up big time: wait times for diagnosis and treatment of cancer. Reducing those wait times would be expensive, but the nature of many cancers is that early treatment vastly improves outcomes. It’s well worth the cost.

  15. #15 Millelacs
    May 2, 2006

    When will people accept that death is inevitable? This is mean to say, but when the merry-go-round stops spinning, you get off.

    I can’t accept that anyone would rationally consider ventilator dependency, immobility, and sedation to constitute any sort of quality of life. It has to be plain old fear of death keeping this woman from acquiescing to reality. Well, aren’t most of us afraid of dying? She’s just in the unusual position of being able to put it off, potentially by years.

    It’s tempting to reason that the money spent on the patient’s care could go toward saving untold numbers of underprivileged children, but then so could the money affluent people spend on jewelry, fine wines, expensive cars, and big houses. However, if there’s only so much space in the unit where she’s being cared for, and she’s occupying a bed that could be used to save a potentially recoverable person, I say her interest has to yield.

  16. #16 Susang
    May 2, 2006

    Here’s the update from yesterdat. I’m a donor at DU and was able to do a search for you:

    Th1onein Donating Member (1000+ posts)Mon May-01-06 11:25PM

    Original message

    KILLING MY SISTER – UPDATE

    I don’t really know how to begin this post. Everything is so different now, than it was before. It’s like everyone moved the pieces on the chessboard, while I was out of the room.

    First the good news: Andrea’s white blood cell count is down, for the fourth day in a row. This signals the level of infection that she has in the repaired valve of her heart.

    More good news: Andrea was on two “pressor” medications. These are drugs that increase the blood pressure, so that the organs will receive enough blood. They are very, very hard on the body, though. Andrea has now been taken off of these medications, not because it is a part of withdrawing treatment, but because she no longer needs them.

    Okay, I tricked you! There’s all good news, no bad news! (I’m sorry; I’m just so happy!) The futility process has been halted. Andrea has a new doctor and the medical futility process has stopped right there, with him! He has lowered (halved) her pain medication, which she doesn’t seem to need as much of now(none of us in our family ever thought she needed as much as they were giving her, but the futility morons pour on the pain meds right before unplugging a patient that is cognizant–we have learned that this is part of the “process”).

    This new doctor told us to make no mistake about it, our sister is in “serious” condition, but that doesn’t mean, he said, that she can’t get much better!

    You know, my sister, who was one of the first patients ever to be operated on using the then brand new technology of the heart-lung machine, made history when she was five years old. And, having been declared “futile,” and having had her family and the rest of this country fight that death sentence…..well, she might make history again, showing that this law gives doctors too much power over people’s lives, if she continues to recover.

    Knowing Andrea as I do; knowing her iron will to live, I’m putting my bets on her.

    Melanie

    http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=364&topic_id=1078338

  17. #17 Graculus
    May 2, 2006

    many nations with state-paid health care, in a case like Clarke’s, additional care other than palliative care would have been denied a long time ago.

    Do you have any stats to back this up?

    It seems to me that a single payer/socialized system would be more likely to accomodate this patient.

  18. #18 Alexander Whiteside
    May 2, 2006

    The Bush administration: ambivalent towards human life, but all for interfering.

    I thought that the Republican party was meant to be the non-interfering one? Admittedly all of my US politics were picked up from The Simpsons and The West Wing…

  19. #19 Steve LaBonne
    May 2, 2006

    Millelacs, I trust you learned something from the update on Andrea’s case that appeared right after your post. The problem, you see, is that a system which provides a powerful financial incentive to declare that a patient isn’t “potentially recoverable” is fundamentally corrupt and will lead, quite simply, to the killing of people who WOULD have recovered had care been continued. The temptation is just too strong.

  20. #20 Lisa SG
    May 2, 2006

    I think that posts like Millelac’s should illustrate to the rest of us exactly why disabiity groups like Not Dead Yet are against legalizing physician assisted suicide. These groups are on the left, not the right, so it is NOT about religious ideology. They are simply afraid that other people, ignorant people, will start defining their lives as not worth living.

    Millelacs, I want to know why you feel free to define “life worth living”? Who gives you that power? I thought that for most pro-euthanasia folks, this was supposed to be a debate about autonomy? It’s the old bait and switch. Now it’s about utilitarian concerns and money, not autonomy. That’s why I never trusted this supposed “left-wing” movement.

    BTW, I don’t know that I’d want to live on permanent sedation, but I think that I would want to live even if immobilized, and I believe that the family was saying that she did not NEED so much sedation in the first place. Do you think the life a bedridden person is generally not worth living? Even if they can read, and talk, and think? Studies show (see Not Dead Yet’s site) that disabled people, even severely disabled people, have the same level of happiness as those who are not disabled. So if people are happy living, why should they not live? Because they do not fill your definition of “usefulness”? To repear myself, so much for the debate being about autonomy.

  21. #21 Anon
    May 2, 2006

    Just one example of the waste that comes with socialist medicine: Patient blocks hospital bed for 4 years.

    I am glad that Ms. Clarke is much better. However, that doesn’t change my opinion that there has to be a limit for the financial credit a healthcare provider offers to a patient. If we continue subsidizing hospital losses, we will not talk about “welfare states” but about “healthcare states”, meaning states where a large portion of the budget goes toward the health hole.

    Any family with a similar problem should first put their money where their mouth is, and then point their finger at the hospital. All of us could be hysterical about the extended care rights of a loved one, but what would happen then? Who would pay for it? God?

    Again, I am interested in an answer to the question: how much money did the family offer to the hospital, for the extended care of Andrea Clarke, before going to the media and crying wolf?

  22. #22 Steve LaBonne
    May 2, 2006

    It’s good to know where some conservatives actually stand on the relative value of money and life, isn’t it.

    NO family whose surname isn’t Trump or some such could conceivably pay for more than a tiny fraction of the care she’s received. Now, while normally I would be happy to see my tax dollars go for critical care for a sick person rather than killing civilains in faraway countries, I just might feel like making an exception in Anon’s case, should the occasion arise.

  23. #23 Anon
    May 3, 2006

    I am afraid I am not really a conservative. Just more centrist than some liberals. I am also frugal, which makes me more inclined to look at the cost/benefit ratio.

    And I know one thing. The basis of mutual insurance is that there are many people paying so that a few sick can get their treatments. However, there are (financial) limits to these treatments. The sicker the average person is or the more sick people, the more the system is strained. If a hospital runs out of money, sooner or later it won’t be able to help anybody. A lot of community hospitals are already in financial strain, because of the large number of non-paying patients.

    So, taking a case like this is a huge risk, worth hundreds of thousands of dollars, maybe millions (if it goes on for years). No responsible institution can willingly take a liability like this, and no person with common-sense should ask for it. I am sorry, but the burden is too high. No person has the right to ask the state or the taxpayers to support a very expensive treatment, which the medical professionals consider futile. There are many others who could be helped much more with the same resources.

    I am really glad that Ms. Clarke is feeling better, and I wish her the best. But that does not change my views. There has to be a limit, even for healthcare costs.

    Let me end with Orac’s beautiful explanation (one of the many):

    Clearly such patients are enormously expensive to care for and can rack up medical bills of hundreds of thousands, if not millions, of dollars, which is why hospitals are often desperate to try to find a way to transfer them to a long-term care facility. When such patients (or their families speaking for them) no longer want care, it is clearly ethically justifiable to grant them their wishes on the basis of personal autonomy. But what do you do when the patient apparently wants to keep living, even on a ventilator and reportedly in pain, with little (but not no) hope of improving. How much suffering constitutes too much to keep putting the patient through and shouldn’t the patient be the one to decide? How small a chance of recovery is so small that withdrawing care is justified even in the face of a patient and family who do not want support withdrawn? These are very difficult questions, and they will come up more and more as we face the decision of who will pay for increasingly expensive technology to prolong life even when there is little hope of recovery. In many nations with state-paid health care, in a case like Clarke’s, additional care other than palliative care would have been denied a long time ago.

    (Note: Italicization is mine.)

  24. #24 outeast
    May 3, 2006

    Anon, you argue that the hospital had the right to terminate care to save costs; however, according to Orac’s sources “Clarke … has not yet exhausted her health insurance.” As a consequence, your argument is a red herring – it would be the insurer, not the hospital, that would pay.

    One of my pet peeves about private insurance-based healthcare is that insurers seem all too willing to fight not to deliver on their side of the bargain. I have health insurance: it’s about 10 or 15 per cent of my income or something, but that’s OK as long as if I ever need that health care they damn well deliver. They sure don’t give it back if I don’t use it, after all!

  25. #25 Anon
    May 3, 2006

    I agree with you about HMOs, but the fact that Ms. Clarke had not exhausted her health insurance is irrelevant. Why? Because insurance companies pay the hospital a fixed amount, based on the diagnosis. If the patient stays in the hospital longer than “required” (by refusing to move to and extended care facility)… tough luck: the insurer won’t pay a dime extra.

    The day private HMOs will disappear should be celebrated like the end of a world war. However, I have a bad feeling that it’s going to take the second coming of Jesus for that to happen.

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