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End of Life Counseling in the Health Care System Transformation Bill

This issue has arisen in recent days. Supporters of H.R. 3200 claim that its end of life counseling provision, section 1233, is merely voluntary for the patient. But a closer look shows that section 1233 includes conditions and financial incentives for physicians and other health care providers that create a setting in which an elderly patient's decision to appropriate this option is likely to be less than voluntary.

Writes Charles Lane in this morning's Washington Post (HT: Jim Gergahty at NRO's Campaign Spot):

Though not mandatory, as some on the right have claimed, the consultations envisioned in Section 1233 aren't quite "purely voluntary," as Rep. Sander M. Levin (D-Mich.) asserts. To me, "purely voluntary" means "not unless the patient requests one." Section 1233, however, lets doctors initiate the chat and gives them an incentive — money — to do so. Indeed, that's an incentive to insist.

Patients may refuse without penalty, but many will bow to white-coated authority. Once they're in the meeting, the bill does permit "formulation" of a plug-pulling order right then and there. So when Rep. Earl Blumenauer (D-Ore.) denies that Section 1233 would "place senior citizens in situations where they feel pressured to sign end-of-life directives that they would not otherwise sign," I don't think he's being realistic.

. . . Ideally, the delicate decisions about how to manage life's end would be made in a setting that is neutral in both appearance and fact. Yes, it's good to have a doctor's perspective. But Section 1233 goes beyond facilitating doctor input to preferring it. Indeed, the measure would have an interested party — the government — recruit doctors to sell the elderly on living wills, hospice care and their associated providers, professions and organizations. You don't have to be a right-wing wacko to question that approach.

Read Lane's entire piece here.

It seems to me that one should be deeply concerned about this, especially if one has elderly parents. If, let's say, H.R. 3200 or something close to it were to become law and the public option pushes private insurance into near non-existence (as would surely happen with all the incentives in place), then there will no neighboring state to which to run. You won't be able to take your business elsewhere, since there will be no elsewhere. And to whom will you issue your grievance, a special "health court," one likely informed by a youth-worshipping culture and a utilitarian bioethics philosophy that sees the elderly (not to mention, handicapped infants) as burdens that are syphoning away valuable resources that could be put to better use in support of society's "real persons" and more productive contributors?

If you think my reflections are "fishy," you can report me to the White House, here. The email address is: flag@whitehouse.gov.

Comments (29)

[commentary removed - plagiarism is not allowed]

Don't let Obama's death panel euthanize my parents and my baby with Down Syndrome!

Frank, I'm glad you brought up this issue. Wesley Smith has been following it carefully. Your point about the physicians' initiating is well-taken. There are several other relevant points. First, although in another part of the law the term "voluntary" is used, it has not been inserted here, despite the controversy and the insistence that having such a consultation is voluntary. As Smith points out, this would have been easy to do, and it would also have been easy to insert language making it clear that patients would suffer no repercussions if they refused. But even though the bill has been revised since this question was raised, such revisions have not been made.

It's also relevant that there would be all sorts of soft coercion that could be used. The most obvious of these would be simply to tell the patient that he has to do this because it's "standard now," even without any explicit threat. That would be enough to get probably the majority of people to go along without asking further questions about opting out. Another option would be vague references to "difficulties" in ordering care "since your wishes are not known." This would be a tacit threat to withhold care from patients who had not cooperated in writing an advance directive.

Then, too, there is the fact that patients are to be urged to undergo such counseling *every five years or if their health changes*. One of the triggers for their being thus urged is simply if they develop a "life-limiting illness." That's rather scary: "So, Mr. Smith, I see here that you said that you would want everything done when we had a counseling session five years ago, but now that you have been diagnosed with MS, are you sure about that?" It's a kind of bullying, with the "trigger condition" aspect of the law implying that people should be pressured specially whenever they face a "limitation" on their normal lives.

Moreover, there is the problem of what sort of counseling we are talking about. It is not appropriate for a physician to have an incentive to pressure patients to refuse care. That compromises the Hippocratic commitment by the physician to seek what is truly best for the patient. Indeed, Obama's advisers have admitted openly that they want physicians to take a different attitude from the Hippocratic one and to consider the cost to the community as well, and this is a very dangerous thing to do. It is corrupting to the medical profession. This is why traditionally it has been lawyers who have advised people in writing their advance directives. It would have been valuable for the bill to have added language stating that counseling should not pressure patients toward refusing care, but of course nothing of the kind has been added.

More alarming still, Wesley points to a recommended model advance directive

http://www.firstthings.com/blogs/secondhandsmoke/2009/08/01/obamacare-example-of-why-some-fear-counseling-about-end-of-life-care-could-become-persuasion/

that as a default setting has the patient refusing care, including nutrition and hydration, and, crazier still, has the patient consenting in advance to be used in human experiments. The patient must _cross out_ these various objectionable clauses or else, when he signs, they stand as a legally binding expression of his wishes. Ironically, this document is presented as part of a guide to "caring conversations."

People have real reasons to be concerned about all of this.

Very Very Fishy Dr Beckwith :) have you considered turning turning yourself in ?

Show of hands: how many, here, think that the solution to aging given in Logan's Run would be welcome by some crafting the current healthcare legislation.

The Chicken

P. S. Note to the White House: I'm not making fishy comments I'm making chicken comments...

Is Logan's Run the one where they bump off everyone who turns 30? Nah. Not efficient by a utilitarian calculus. Too many healthy workers get bumped off just as they are coming into their most productive years. Now, if you did a modified LR and moved the age up to 70...That might be considered more acceptable. But what they really want is to be able to micromanage. 70-and-Alzheimer's: Now _there's_ a case for making cost-saving cuts.

Dear Lydia,

You wrote:

Too many healthy workers get bumped off just as they are coming into their most productive years.

But, but, 70 years old is a very productive year...for producing baby-sitting grandparents...

I say, let the first men to go to Mars be 70 years old. If they don't come back, well...

The Chicken

The Patient Self-Determination Act (PSDA) was passed by the U.S. Congress in 1990. This law required many hospitals, Nursing Homes, home health agencies, hospice providers, HMOs, and other health care institutions to provide information about advance health care directives to adult patients upon their admission to the healthcare facility.

If you can show how patients bowed to white-coated authority under this law, it would make the "pressure tactics" argument look more plausible.

In 2003, the Dept. of Health issued the following report on the matter of advance directives, which encourages physician participation in the discussion:
http://www.ahrq.gov/research/endliferia/endria.pdf

"So, Mr. Smith, I see here that you said that you would want everything done when we had a counseling session five years ago, but now that you have been diagnosed with MS, are you sure about that?"

According to the report mentioned above, patients were more likely to change the directive in favor of receiving care after being diagnosed with conditions they previously considered intolerable.

It seems to me that whether patients change in one direction or another depends a great deal upon how they are approached. Lane mentions the 1990 law you mention and contrasts it with the new provisions, I believe justifiedly.

Step2, have you seen how they measure those statistics? I would be very hesitant to accept the conclusion before I read up on the methodology. Many of the statistics stated in the report are in terms of what "patients would want". It is easy to see that getting a desired (i.e. biased or skewed) answer to a question of "what would you want if scenario A were to occur to you" is very easy to manipulate.

Two of the conclusions stated are:

• Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing the patient’s advance directive.15 • Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.16,17

And just how did they go about finding the "real" treatment desired when most of the advance directives giving power to surrogates required the patient to be "incapacitated". And many of those incapacitated never regained sufficient health and mental capacity to decide for themselves what they (a) really wanted, or (b) would have wanted had they had all of the correct and pertinent information (since other parties decide what they think are the correct and pertinent information to give to a patient or surrogate.

We don't want the government deciding when Grandma gets antibiotics or an injection. It's that simple.

No, we want the all-wise insurance companies deciding who gets what treatment!

According to the report mentioned above, patients were more likely to change the directive in favor of receiving care

Does anyone really doubt that financial incentives mixed with perverse understandings of compassion and individual autonomy will lead to the following;

Spiritual care, by contrast, was associated with higher rates of euthanasia and physician-associated suicide. The receipt of spiritual care increased the odds of these life-ending measures by 18.5-fold.

"Life shortening end of life decisions often occur within the context of multidisciplinary care in Belgium," the authors write, "and they often coexist with a palliative care philosophy."
http://www.rtmagazine.com/reuters_article.asp?id=20090730ethc001.html


The establishment has spoken;
But not all the incapacitated, or terminally ill, or permanently despairing are willing to wait for a natural death, or to take messy and uncertain measures to kill themselves without medical help...Their lives were their own, and they wanted to end them...To deny it to them is to add cruelty to misfortune.
http://www.economist.com/opinion/displaystory.cfm?story_id=14034893&CFID=73020395&CFTOKEN=735529


No, we want the all-wise insurance companies deciding who gets what treatment!

Nor that either, natch. Aren't there other options? Cannot human ingenuity combined with human compassion divine some other mechanism than a government or insurance bureaucrat deciding 1500 miles from the situation?

We don't want the government deciding when Grandma gets antibiotics or an injection. It's that simple.

It's a good thing I don't want government deciding that either. Advance directives are made by the patient in consultation with their relatives and their doctor, not a government agent.

Look, this argument has two basic directions to go in. You can say that advance directives are somehow a misrepresentation of the patient's wishes. You could also say that doctors should not be allowed to discuss with their patients possible medical outcomes and their patient's wishes. Either one of those two claims is very, very debatable. I would say the second claim is outright hypocrisy, since doctors already are required to respect the wishes of those who refuse surgery, blood transfusions, etc. for religious reasons.

I've said something much clearer than either of those. I have said that it puts doctors in a position of a conflict of interest and in danger of a corruption of their medical role to ask them to try to influence patients in ways that will save costs, because this could easily be in conflict with their advocating what is physically in the patient's best interests. I have also pointed out that having the doctor initiate the conversation puts pressure on the elderly person to fill something out. I have pointed out the extreme dangers of default versions of the form in which you have to cross out refusals of treatment *and consent to be experimented on*, and if you don't happen to cross one out, it is treated as your wishes even though you didn't write it. I have pointed out the tacit pressure involved in _initiating_ the suggestion of a revision _because_ one has been diagnosed with a "life-limiting" illness. I have pointed out several tacit ways in which patients can and will feel specially pressured both to fill these out and to fill them out in a particular way.

For such a subtle and intelligent guy, Step2, you are approaching this in a surprisingly naive and simplistic way.

Lydia,
What is the incentive that is leading you to suggest bad faith by the doctor? You seem to think that he has an incentive to leave his patient untreated. I think he has a responsibility to find out what the patient specifically wants.

I agree with you about the particular version that Wesley Smith linked to, but even in that poor example the questionnaire was carefully balanced and detailed, so I would still want to keep that part of it as a valid declaration of the patient's wishes.

Thank you for the compliment, truly. I am simply not alarmed by discussions about advance directives which have been common practice for almost two decades, nor do I see any conflict of interest for the doctor. If the doctor's preference is based on financial incentive, his options are between high cost treatment versus low cost palliative care. Why would he ever prefer the latter over the former?

It's not bad faith I'm concerned about in the doctor so much as his being pressured from above to use this as an opportunity to help save costs. You say,

If the doctor's preference is based on financial incentive, his options are between high cost treatment versus low cost palliative care. Why would he ever prefer the latter over the former?

Because one of the whole points of nationalizing health care is to put up counter-motives to any sort of profit motive. Indeed, the architects of such plans positively sneer at fee-for-service. It would be highly naive to assume that an individual GP doctor would make more money from a patient of his who, in the hospital, received ANH, a pacemaker, or whatever, than he would if he had guided a patient to refuse such things in advance. Even in the current system, _he_ isn't making money out of many of those things anyway. And once there is more government oversight and the whole push of the system is towards cutting costs, there are all sorts of ways in which his career could be negatively affected if he were not bringing about such systemic savings by influencing patients in the right way. Moreover, medical training will take on a cost-saving bent. I have told you already: The bioethics cutting edge are expressly pushing the collectivist doctrine that the doctor should consider himself as much responsible to save money for society as he is to do what is best for the patient as an individual. That is how our medical personnel will now be trained and indoctrinated.

And therefore the patient could be "guided" in the direction of refusing everything, up to and including nutrition and hydration, for the sake of saving costs. Truth: ANH is not itself expensive. But the indefinitely on-going _life_ and _care_ of the person receiving ANH is expensive. Nudging people to refuse ANH is therefore an efficient way to save money. Which I find horrifying. To the extent that the purpose of this is to save money (and the whole claim is that it _will_ save money), the bias is towards refusing care rather than asking for it. That, combined with the fact that many people really do not understand what they are putting themselves in for (for example, what it really means for an otherwise not dying person to die of dehydration over a 2-week period) makes it pretty much guaranteed that people will be refusing basic care in higher numbers as a result of this aggressive push for advance directives.

Lydia brings up a problem with a health care system that intentionally requires doctors to engage in practices that ordinarily would be a violation of medical ethics if they colluded among themselves without the assistance of government (or privately, in the case of some HMO policies). I wrote about this in 1996: "The Ethics of Referral Kickbacks and Self-Referral and the HMO Physician as Gatekeeper: An Ethical Analysis." Journal of Social Philosophy 28.3 (Winter 1996): 41-48. You can find it online here: http://homepage.mac.com/francis.beckwith/JSP.pdf

There is already a scandal with hospice care. Medicare typically pays only for a few weeks of hospice care on the theory that it's for the dying, not the merely very sick. So folks sent into hospice are essentially drugged up on halidol, rendered unconscious, and then dehydrated and starved to death. Disoriented and grieving relatives are told this is the "dying process" and "he's feeling no pain" and "this is all very normal," when their grandparents and spouses are, essentially, being murdered before their eyes.

I saw this with my own grandfather two years ago. I was totally unfamiliar with what was going on. I saw them remove his brown urine from the bed, brown because essential nutrients and water were being denied him. I saw them put the lotion on his lips so that we couldn't see the evidence of willful and easily remedied dehydration. I wasn't sure exactly what was going on; I've actually never had anyone close to me but him die. But as I looked into it, it became clear; he was being euthenized in plain sight, and an entire industry has grown up around this evil practice. When the financial incentives are flowing up and down the chain of care in the Obamacare regime, it will be all the more tempting to encourage living wills with limitations on food and water and doctor-ordered, cost-saving trips to the hospice. Two weeks later, no more "expensive bills racked up at the end of life."

I'm not very emotional of a writer/blogger, and I almost never give testimonials. But seeeing this all take place was one of the most disturbing experienced of my life, and I had limited understanding and no power (or at least no lawful authority) to stop it. But I sure as shit won't do this to my parents some day, and I'll encourage everyone I know to do the same. There are of course some legitiamte hospices out there, but I believe one must make triple sure what you're dealing with before sending a loved one to a possible scene of mass murder.

The question of nutrition and hydration in hospice has been a problem for a long time. I gather that some hospices do administer ANH but that others do not, and in some cases ANH is regarded as non-hospice or as "extraordinary" care, even though it is merely nutrition and hydration. The practice of administering Atavin is also a serious problem. The concept of hospice, the theory, has much to recommend it. But for it to work out in practice requires watching like a hawk by a patient advocate--preferably the next of kin and/or whoever has the person's durable power of attorney for healthcare, as well as the patient himself if he is conscious when first admitted--and in particular insisting that nutrition and hydration are not optional. Speaking for myself, I would never consent for myself or any loved one whose care I was overseeing to be admitted to hospice until and unless this issue had been clarified and I had received a credible promise that nutrition and hydration would be administered, by tube if necessary, and that mind-altering drugs would be kept to a minimum. And even then I would watch.

"a special 'health court,' one likely informed by a youth-worshipping culture "

Youth-worshiping might not be the driving force. A doc I know with the local CMDA tells me that doctors and other professionals, being overachievers themselves, tend to define quality of life on a competitive scale. If one can't compete, perhaps one doesn't deserve to survive.

This isn't necessarily social Darwinism, but a manifestation of our universities' Careerist creed.

This is also an especially worrisome possibility because it is reinforced by common tropes of pro-business sentiment. Let inefficient businesses fail, let inefficient lives die.

My mother passed away August 10 at the Midwest Palliative and Hospice Center in Skokie, IL. I have never encountered a finer group of people than those who cared for my mother during the last days of her life. Each and every decision regarding care was determined in advance by my mother. Decisions to eat and drink - or not to - as were decisions on comfort medications were hers and hers alone. It was my mother's choice to enter hospice - and everyone at the Center helped her live in final days in peace and comfort.

As my sister and I left the center on the evening of my mother's passing, one of my mother's caregivers found us waiting for the elevator. She told us that it had been a privilege caring for my mother.

Thank you. But the privilege was having this wonderful nurse and so many others care so deeply about my mother and our family.

Peace.


David Strandberg
Minneapolis

Comment on end of life issues, the DNR'S and Hospice have been in the making for the last 15 years. When a person goes to Hospice, it is exactly as was mentioned in the above posts. The Nurses are taught no heroic measures, The person is allowed to eat and drink if they can, but they are so heavily sedated, that they become stuporous, the minute they wrinkle their eye brows , the Hospice Nurse's have been trained to administer, more and more and more Roxinal, everytime that patient whimpers, they are medicated. It usually takes a week to ten days for them to pass on. All the while the Nurses are trained to tell the families, look how peaceful Granny or Grandpa looks. they don't die from old age or disease , they are starved, and dehydrated to death! The families leave with a clear conscious that they have done everything right for their loved one, unless of course they happen to notice what is actually going on, as mentioned above. this has been going on for years, if we are not killing our elderly we are killing our unborn, and if you think abortion isn't murder think again!! My friend, late term abortions are preformed on the the fully developed children, by delivering the whole body breach and leaving the head in the birth canal. Then the Dr.takes a sharp instrument and jams it into the back of the neck, just below the skull, cutting the brain stem and disconnecting it from the brain, of course the child is not born a live or does the child have the chance to take its first breath. the child is murdered and cannot defend itself. On the matter of The term DNR Do Not Resuscitate, Our Govt. has been using this for years as another means of population control. A person or surrogate is given the opportunity to sign a DNR they are told this will prevent them from being put on life supports and living out their life in some nursing home with their skin rotting away from underneath them, in pain, and unable to communicte their needs until they actually die again, if they stop breathing or have a heart attack. Most people say I don't want to have that happen to me and so they sign the order. then they come down with the Flu , or their lab values come back critical, or they fall and have a head injury ETC., and the Nurse calls the Dr for orders to send them out for treatment to the Er. and is yelled at, why are you calling me she or he is a DNR, yes Dr, sir , but I don't want to resusitate them I just want to get them the medical treatment they deserve. well send them if you have to don't bother me again, I'm busy. Most Nurses will just follow their initial order, and not question the Dr. We live in a selfish, me first, cess pool of a nation demoralized, by the media, sex, drugs, our govt. has taken away our ability to raise our children up to be productive citizens! Euthanasia has been here all along it has just been in the closet, Now the Govt. is coming out and God help us all. PS Germany tried this once! Connie RN 28 years in the business.

A blistering indictment, Connie, and one I don't doubt. You even forgot to mention that they _don't_ let stroke patients drink
in hospice, even if they are able to drink by mouth. They're usually marked NPO, even if they can drink. And if someone gets the NPO reversed, gives them a drink, and it turns out they are having the tiniest bit of aspiration, the NPO gets slapped back on, even if the patient is verbally asking for water. So much for hospice being all about keeping you comfortable! Really the only way around that is to write up a living will and have a DPA for healthcare to enforce it that _demands_ a feeding tube. That way, when they decide not to allow you to drink and eat normally (sometimes, even when you could), they have no excuse for not giving you tube fluids.

Lydia, or anyone, do you know of any place one could find examples of/templates for health care durable powers of attorney that are very clearly pro-life in nature? We need to create new ones and would like to see the wording of ones that hold to a Biblical view of life. Thanks for any help.

There are such, and I could look them up, Beth. They became very popular in the 1990's, and I used one originally in the 90's as a basis for my own. _However_, there's one thing you want to watch: They often say that the person does not want to have tube feeding "if my death is imminent." This might not matter if "imminent" meant "in a day" or something. But usually it is interpreted far more loosely. The extreme example I have heard of is of a case where a woman had one of those pro-life living wills and was nonetheless _dehydrated to death_ over the standard long period of time because the health care workers were permitted to interpret it as meaning that her death would be imminent *if tube feeding were not administered*, which was of course not what she meant. I have therefore worded mine so as to request food and water *even if my death is imminent*, knowing how these things go.

In my own state, I gather that the person who makes your health care decisions is even more important than the document. If you have a good person, that can be a good thing.

If you know where to find some, I'd appreciate it, Lydia, when you happen to have some time. My web search skills seem to be seriously deficient whenever I'm looking for anything of this sort -- legal documents, official statistics, etc. I find lots and lots of things, but never what I really want . . . :( (Yet one more reason I hate teaching our research course; I'm not competent!)

Beth, see here:

http://www.nrlc.org/euthanasia/willtolive/index.html

I had an unfair advantage. I knew that beginning in the 90's, the RTL groups referred to such a document as a "will to live." So I was able to find it by googling "Will to live." Nothing to do with your abilities to do research.

You are most kind -- both to find this link for me and to pretend that I'm really a competent person! :) Thank you very much!

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