Hospice Organization Reacts to FEN Lawyer Slander
The other day I posted about how a lawyer for one of the Final Exit Network defendants said that hospice is just assisted suicide in slow motion. This is dangerous demagoguery that could convince people not to seek the benefits that hospice can provide. The National Hospice and Palliative Care Organization has now issued a press release rebutting the baseless charge. From the release:
I am aware of the stories of abuse in some hospice cases. They make me sick, but I don't believe they are typical. And there is a problem with whether tube-supplied food and fluids are considered comfort care or life-extending treatment--a matter the government should remedy by regulation."Hospice compassionately cares for people who are near the close of life--but hospice isn't about how you die, it's about how you live. Hospice and palliative care focuses on how dying persons and their loved ones live each day, providing comfort and guidance along the way," said J. Donald Schumacher, president and CEO of National Hospice and Palliative Care Organization. "The quote from that news article demonstrates a callous disregard for all those who receive care, including family caregivers, from our nation's hospice programs."...
- Hospice focuses on caring, not curing and, in most cases, care is provided in the person's home. - Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
- Hospice services are available to patients of any age, religion, race, or illness.
- Hospice provides bereavement support to families for 12 months following the death of their loved one.
- Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.
- Research has shown the Medicare beneficiaries that opted for hospice care as opposed to other medical interventions when faced with a terminal illness lived on average 29 days longer than those who did not receive hospice care.
But I have been a hospice volunteer. I have seen the tremendous good it does, including with my own father who died in hospice care from colon cancer. A wonderful friend who died of breast cancer a few years ago, received such good care she and her husband were able to enjoy a lingering lunch at her favorite restaurant with Secondhand Smokette and me only two or three days before she died at home surrounded by her family.
Hospice is important. It is truly compassionate. It must not be corrupted with the assisted suicide virus. I am glad that the NHPCO leadership felt strongly enough about this respond to that lawyer's nonsense.
posted by Wesley J. Smith @ 10:54 AM
16 Comments
16 Comments:
What is the current regulation regarding feeding tubes? I am leery of the government being able to deal well with the matter of feeding tubes, as it is so disease specific. There is at least piece of research that I can think of having read that said that in the case of Alzheimer's, for example, a feeding tube does not increase life expectancy. However, in the case of ALS, feeding tubes are a significant help.
Having worked in hospice more than two years now, I am quite pleased that the issue of feeding tubes has not come up very often for me. My hospice does supply the feeding tube formula to patients who already have feeding tubes and wish to remain on them. I do not know if Medicare reimburses for this.
These things are none of the government's business. They are none of the hospice's or of the hospice's business. They are more the business of the family and if he person themself, but franky, everyone should have everything until the very end, no question, and the only way the government should be involved is to make sure that that happens. When they can't take people off "expensive resources," doctors and hospitals will have to learn to be more careful about not making them need them in the first place, which they often do only as the result of negligence. There is enough money and facilities and staff to take care of people on life support, etc. It's just a matter of making a point of allocating it, and it's a matter of values and priorities. Someone doesn't want to live in that condition? Too darned bad. Someone else does and isn't allowed to because the former's "wishes" are being indulged as part of an-overarching medical-futility/cost scenario that people are too stupid to realize they're being rooked into going along with. I'm not interested in what happens to anyone that stupid. I'm interested in what happens to those who DO want to live. If one has to pay a price for the other -- if that's even the equation -- the rights of the latter take absolute preference. And anyone who would sign a living will is just going to have to put up with the inconvenience of staying alive. There is plenty of time to be dead later. Rush things for one "voluntarily" ends up rushing things for others involuntarily.
Heather: Some hospice won't permit tube feeding in fear that the government will accuse them of giving life-sustaining care. As far as I can tell, the government is silent about the matter. It needs clarification.
Above, it should have read none of the hospital's or the hospital's business. It's more the business of the family, and especially of the person him- or herself, and if s/he can't speak AT THE TIME (I don't care what s/he signed when, what someone says s/he said, etc.) then roll out the red carpet and give him or her the works until they die naturally WITH the works providing life support. If by the way the government is going to hand out money, this is what it should have it on hand to hand it out for, when families/their insurance doesn't cover it; I don't know if medicaid does that now or what, but it shouldn't be an expense thing, and this should be something separate from funds for medical care; this is funds for valuing and preserving life in a society whose government reflects the value of life and enforces its preservation. It wouldn't be like someone preferring to be on welfare or food stamps, now, would it. I don't care who says they wouldn't want to keep living "like that," or that they don't at the time. Life has a price. Those who want to keep it should not have to pay with it, that's all, end of story. In order to have hospice that is what Wesley knows it to be, those are the kinds of values and laws society must have. I still don't like the idea of hospice though. It's too soft-and-fuzzy not to be part of other things that present as such and are not.
SINCE WHEN IS IT THE GOVERNMENT'S BUSINESS OTHER THAN TO PRESERVE LIFE, AND SINCE WHEN DID WHO PAYS FOR ANYTHING OR WHETHER THEY WILL BECOME PART OF THESE "DECISIONS" WHICH ARE ALL ONE WAY OR THE OTHER ABOUT PAYING FOR IT.
Then it seems that Medicare does not reimburse for tube feeding care, and that would be a reasonable fiscal reason for hospices not to take care of them.
lanthe: I would say that a person's medical treatment is none of a government or hospice's business, if that person were completely self-paying. But that's very rarely the case, and medicare/hospice have to put some limits on hospice in order for it to be hospice (i.e. care for the terminally ill who have a life expectancy of 6 months or less). Don't throw the baby out with the bathwater here. There is a lot of freedom in hospice under Medicare. I am not defending it, but it is the way it is.
If someone wishes to continue to have curative-type treatment until the day they die, that is fine, and nobody forces them onto hospice. However, to force someone to pursue curative-type treatment (even if it won't cure anything), even when they do not wish to, is just as bad for our society as forcing them to give up curative treatment.
I'm sorry you don't like hospice, but I don't think you would still think so if you did the kind of work I do. One of the mottos of my hospice is that people should not have to live in pain. So many more people would die in agony everyday without hospice. I firmly believe that without hospice, the euthanasia movement would have an even greater inroads into mainstream society, and perhaps even be legalized, by now.
Heather: I disagree. The minute people start talking about who is going to pay for it, we're in trouble. Having seen someone forced to die when they wanted and deserved curative treatment (and payment was no issue; their insurance covered everything), I cannot possibly say that it's just as bad to force someone to live, pain or no pain, as to force them to die. I disagree also that hospice makes euthanasia less likely. Further, "avoiding pain" is not the most important thing. Avoiding death is. Especially to people who really want to live and cannot in a culture of which "hospice," "palliative care," and "end of life" are buzzwords. I'd rather see people die in pain than die when they don't want to, and I've seen the latter.
I mean, I've seen it when the person didn't have to die and didn't want to and the doctor had just said he'd seen people in her condition go home before. Hospice grew up at the same time as "living wills" and "end of life" culture and euthanasia. I'm against it. It't not being comfortable when dying that matters -- what matters is not dying. I don't give two cents for anyone who doesn't go down without a big fight, and "making it easy" is as far as I'm concerned obscene.
It's no one's job, including doctors' and nurses', to say when someone is dying. Death happens when it happens. One is alive one second and not the next. Letting doctors and nurses say so and so is dying sets an underpinning for the whole death culture. I've seen how it works. People who work in the system don't see how it works. Doctors should be self-flagellating when a patient isn't doing well, not saying how long the person has. Period.
Note that I did not say force anyone to live. You cannot do that. I said pursue curative type treatment. Sometimes people have diseases that cannot be cured no matter how much treatment they pursue. Hospice accepts this inevitability; as Wesley Smith pointed out, terminally ill people live longer on hospice than not on hospice, almost a whole month longer. Hospice was a reaction to the euthanasia culture, not a sister or an advocate of it. My patients in hospice want to live, but their diseases give them no choice.
I am sorry that you had a friend who died as a result of medical negligence. I think that it has skewed your perspective on things, understandably, and I don't think that my pursuing any further conversation here with you would be fruitful. I am as pro-life, anti-euthanasia, anti-assisted suicide as they come, but I don't think we're even talking in the same universe here.
Heather: I had the same opinion about hospice long before my mother was murdered by euthanasia in a hospital that had messed her up, against her will when she wanted and was capable of continuing to live. If taking her to hospice could have gotten her out of that hospital alive, I'd have done it, but she needed medical care that they refused to give her or acknowledge that she had the condition that required it, and they refused to let her out of the hospital alive, using mechanisms of their own design that they had used in other situations; I've since learned that once in hospice, with what goes on around here, she might have ended up starved and dehydrated, or at least I'd have had to put up a fight as I had with the hospital. The way things work around here, constantly attempts by hospital corporsations and social workers are being made to push people into hospice when they aren't even sick, just because they are old, and then...And, as I said, it looks different, and reads differently, to someone looking at it from outside the system than it does from within it. Many who do the work within the system are trying to do their jobs and have come to accept as simple reality what those looking at the outside can see is causing things to be all messed up and not only must, but can, be radically changed-- like insurance etc. requirements, systems, etc.
How long has hospice been around, and how long has euthanasia been around, and how does hospice make things less bad re euthanasia? I mean, how does that work? From what I've seen, and heard from others, the euthanasia problem hasn't abated and is only getting worse.
As for can't get well, I still say better not to talk or think in those terms. A person is alive up until the moment they are dead, and medicine hardly knows everything. It's an important attitudinal thing that branches out into other seemingly unrelated of medical care and, again, it's easier to see why I'm saying this from the outside than it is from the inside.
Palliative care: now 12% as humane as Auschwitz!
Ianthe, I have to take issue with some of what you said here. I appreciate your desire to live as long as possible no matter what the circumstances, and would respect that decision in a clinical situation. However, why do you assume you speak for everyone else?
For instance, you say:
"These things are none of the government's business. They are none of the hospice's or of the hospice's business. They are more the business of the family and if he person themself."
But then you also say:
"Someone doesn't want to live in that condition? Too darned bad."
Your second statement directly contradicts your first one. Some other things you say are also rather frightening:
"Further, "avoiding pain" is not the most important thing. Avoiding death is... I'd rather see people die in pain than die when they don't want to, and I've seen the latter."
" I don't give two cents for anyone who doesn't go down without a big fight, and "making it easy" is as far as I'm concerned obscene."
Frankly, you're acting the same way as those you claim are forcing their viewpoints about dying onto others.
Dr._Dredd: Frightening? No, I've seen what happens when the other point of view prevails, and when the person wants to live. If there is going to be error, it has to be on the side of allowing those who want to live, and otherwise get caught in the net, to live. Once one is dead, there is no going back. It's worse to be made dead when one doesn't want to be dead than to be alive when one doesn't want to be alive. I've seen frightening, and it's in the attitude and behavior of those, including in a hospital, who would, and do, force death on those who do not want it.
And I've seen the opposite. I've had family members be in pain like I don't even want to think about. My grandfather, Jewish, died in a Catholic hospital. He was fortunate in that it was relatively sudden; we were told that his wishes regarding life support would probably not have been honored otherwise.
I don't have a problem with every person choosing for him/herself how they want to deal with the end of life. It's when one side tries to force the other that we run into trouble. You yourself say that you're horrified by those who would "force death"; don't you see that there are people who are equally as horrified on the other side?
Dr. Dredd: I have only seen the side when death is forced on someone unwilling, and based ostensibly on a piece of paper they had signed as the victim of manipulation; in the other cases I know of where death was forced on someone who wanted to continue to live, there wasn't even that piece of paper. I wish that all of those victims had been in that Catholic hospital, as they would have as well. The problem is that once "end of life wishes" start getting discussed and become an issue, other people -- religion, hospitals, do-gooders, meddlers, the works -- stick their noses into it and somehow the person themself loses their right to have what their wishes at the time are honored. Why people think that they have the right to stick their noses into it in the first place, and why they have sanctimonious views on things they have never experienced themselves, including being geriatric, is a good question. But the minute there start being documents like "living wills," the person him/herself is no longer alone in his/her decision -- the attorney making the document, the law, judges, hospitals, doctors, hospital administrations, social workers, the works, all have been given roles to play. Even "health care proxies" bring others into the scenario. The whole thing has become an enterprise, replete with everything from the above-mentioned to bioethicists and a now-bifurcated approach from the Vatican. Every religion has its own "take" on it; according to Hasidic principles, life support is not to be removed as long as the heart is beating, as in a recent case in Washington, D.C. Every person has his or her own take on it as well, but all these other institutions, and other people, including family members, interfere with their sovereignty. The saying "the road to hell is paved with good intentions," and what "means well" can involve, are relevant here as well. It should be a matter of the person's own decision, and there should not be all this overlay and interference, but we get the latter once we regard "end of life" as an issue rather than a specific situation. It's because of what's behind its having become an issue in the first place that there is a problem, and what's behind it is a desire to save costs now that people are living longer and means of life support of various kinds are available, and that's why the scale is tipped against those who want to live. Of course I don't want to see anyone suffer, but in the mess we've got now, in which institutions that are understood to have the intention of being benign, such as palliative care and hospice, are ending up all too often as excuses to bring about euthanasia which is anything but non-traumatic, if there is going to be error, it has to be weighted in favor of those who do want to live. To me, the life force is the paramount value, and I am concerned more about what happens to those who want to live and fight to live than for those who are willing to give up. The more people smugly say that they are glad they have their papers in order, without any knowledge, which no one can have before the fact, of what the actual situation that might manifest for them might be, the more difficult it is for those who don't want to be swallowed up by the death culture, which is what's happening to the elderly and the disabled who do want to live. People often have no idea what's in store for them when they go into hospital, and there would not be as much horror in store for them if "end of life" had not become a "field" in the first place, and if there were more sense and sanity in more people. I don't mean in any way to minimize what your grandfather, and others, have gone through, but with things as they are, it's the fight for survival of those who want to survive no matter what that has become the scariest issue, and it has become one because "end of life" is an issue and has become an institution in the first place. It's not supposed to be one group at the expense of the other, but that's what it's become, and if both sides, together, addressed what's wrong with what's going on, well, it couldn't hurt. Done effectively, it certainly would discomfit many who are at best idiots, and that in itself would be a good thing. A huge undertaking, but a necessary one.
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