‘Death Panels’ and Maxwell’s Silver Hammer: End-of-Life Planning Scare Resurfaces
Hammer or death mallet? You be the judge...
A hammer is supposed to be used to pound nails. But as the Beatles pointed out more than 40 years ago, it can also be used as a murder weapon. Nobody, however, is calling for a ban on hammers or calling them “death mallets.”
Maybe that’s why the resurrection of the “death panel” canard, as applied to end-of-life planning, seems so unnecessary. Here’s how the New York Times started its story a few days ago:
“When a proposal to encourage end-of-life planning touched off a political storm over ‘death panels,’ Democrats dropped it from legislation to overhaul the health care system. But the Obama administration will achieve the same goal by regulation, starting Jan. 1.”
The only opponent quoted in the story was this:
Elizabeth D. Wickham, executive director of LifeTree, which describes itself as “a pro-life Christian educational ministry,” said she was concerned that end-of-life counseling would encourage patients to forgo or curtail care, thus hastening death.“The infamous Section 1233 is still alive and kicking,” Ms. Wickham said. “Patients will lose the ability to control treatments at the end of life.”
Which, with all due respect, was no more accurate a summary of “Section 1233” or the new regulation than “death mallets” would be to describe hammers.
Don’t believe me? Section 1233 was contained in one early draft of the health care reform bill. Here’s the text of that version of the bill (search for “advance care planning consultation”). It would have allowed Medicare to pay for one such consultation every five years, if the patient wanted it.
Such consultation was to include: an explanation of advance care planning, advance directives, health care proxy, list of resources for further information, explanation of palliative and hospice care, explanation of the advantages of an up-to-date advance treatment order. It would have required training for health care providers (you’d be shocked at what some doctors don’t know about this stuff). And would have required standardization of information and forms used.
It also listed some of the conditions that could be included in a directive. And said that Medicare would pay for more frequent consultations if there were a significant change in condition.
Overly detailed and controlling? Maybe so. Death panels? Not hardly. Limit a patient’s ability to control treatments at the end of life? Not in any clause or sub-clause I can find.
Jump to the new regulation. (It’s in here.) The relevant passage is a lot shorter than the killed section of reform legislation. It adds “voluntary advance planning upon agreement with the individual” to the items that Medicare will pay for during an annual physical. Here’s the whole thing:
“Voluntary advance care planning” means, for purposes of this section, verbal or written information regarding the following areas: (1) An individual’s ability to prepare an advance directive in the case where an injury or illness causes the individual to be unable to make health care decisions. (2) Whether or not the physician is willing to follow the individual’s wishes as expressed in an advance directive.”
That’s it. No panels, death or knotty pine. Just a conversation with your doctor if you want it. No loss of patient control unless the patient is in a condition where conscious control is impossible — in which case the whole point of the planning is to ensure that the patient’s wishes be followed.
Since the New York Times figures Wickham has enough clout to stand in for all opponents, I tried to contact her. No joy. I checked her organization’s website for more insight into her objections. I found that LifeTree is not a generically Christian group, but one that has Catholic roots, starting with the blessing of the bishop of Raleigh, N.C.
So I shifted my search to the National Catholic Bioethics Center, figuring I’d find a reasoned critique that would likely be in accord with the beliefs of LifeTree. I found Marie T. Hilliard, the center’s director of bioethics and public policy. She was more than willing to engage me in civil discussion.
The Catholic Church is in favor of end-of-life planning, she said.
“The issue is not whether a discussion by a health care practitioner with a patient on end-of-life care issues is a good. It is a good,” she said. “And encouraging providers to have truly informing discussions on this issue also is a good.”
So what’s Hilliard’s beef with the regulation? She fears the way that written “orders for life-sustaining treatment” (called “POLST” or “MOLST”) could be abused. A form signed today might not include the actual situation that pops up years down the road.
In other words, a patient could complete a POLST/MOLST form indicating the patient did not want life sustaining treatment, which could be an antibiotic or a blood transfusion or proportionately beneficial assisted nutrition and hydration, before any of the facts that would be appropriate to such decision-making were in play.
The new regulation actually addresses at least one of her concerns in that it makes the consultation available annually, rather than using the bill’s five-year rule. And a standardized form can certainly include the vast majority of situations a patient is likely to encounter. The version prepared by the Rabbinical Council of America, for instance, covers persistent vegetative state, coma, lesser brain injuries along with a terminal illness, and brain injury without a terminal illness along with 31 possible procedures.
But there are conditions and procedures the form does not address. Would a longer form, with more choices, make the possibility of error less likely? Or would a form that’s much longer make it less likely that someone would be willing to fill it out at all?
Hilliard also raises a “slippery slope” argument, suggesting that widespread use of such forms would be employed to put pressure “on persons with disabilities and their families to forgo life sustaining health care treatments.”
To which argument I have consistently replied that if you have a doctor who wants you or your loved one dead, your problem is bigger than a signed form.
Hilliard recommends the use of “health care agents,” a sort of human advance directive. This could be a family member or some other designated person who has the authority to speak for the patient.
The concept was actually included in the killed portion of the health care reform bill, referred to as a “health care proxy.” Perhaps it should have been included in the new regulation.
I think Hilliard and I both agree that the biggest problem with end-of-life planning is that far too often it’s done poorly.
We have a 24/7 consultation line on medical ethics; (1,400 calls per year) and the most frequent call we receive is on end-of-life care, NOT because there is not an advanced directive, often because there is and it does not address the situation at hand, and no helpful discussion had been held with the health care agent. Then there is the question of whether or not the health care agent is locked in by the letter of the law, knowing that the spirit of the will of the patient may be violated.
And that’s for people who have directives or health care agents. Imagine the situation for the far greater number of people who never address these issues until there’s a crisis.
I have some personal experience in this matter. My dad died earlier this year. He was 92. Several years before, my wife had prodded him (and the rest of us) to fill out advance-care directives. Her career has been in long-term health care and she’d seen too many families torn apart by being forced to consider these decisions only under the most terrible stress.
Because we’d talked about the topic once, nudged into it by filling out the directive, we found it easier to return to the subject over the years as my dad’s condition faltered. We and his doctors were all clear about what he wanted — right up to the point when he decided he’d had enough. I cannot imagine how much more difficult those final days would have been without those previous conversations.
But most families do not have the advantage of having an elder-care expert “on staff.” If this regulation prods more doctors into a difficult conversation, if it prods more people into thinking about these issues when they have the luxury of time for reflection, that seems like a good idea to me.
Can such a process be abused? There is no system created by humanity that cannot be turned to evil ends. And yet most of us own a hammer.
By: Jeffrey Weiss-Correspondent-Politics Daily, January 2, 2011; Photo- Getty Images
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