Obama’s end-of life planning is all about “The Conversation” by Marjorie Arons-Barron

The entry below is being cross posted from Marjorie Arons-Barron’s own blog.  Be sure to visit it also.

President Obama’s “end-of-life plan” is all about The Conversation, but, for it to make sense, he has to shape the dialogue. What’s important is the language. What’s regrettable is that the NY Times headline today heralded “Obama Institutes End-of-Life Plan that Caused Stir.”
The opening of the article refers to the infamous “death panels” that caused a firestorm and nearly derailed the health reform law earlier this year. The notion of death panels is a huge distortion. The proposed reimbursement regulations are not talking about death panels, and the Obama Administration can’t let critics control the public debate, as it did before .

Health reimbursement practices have always paid doctors for procedures, but, especially in the case of primary care physicians, not enough for extended, thoughtful conversations. What the administration intends to do is pay them for the extra time they would spend on The Conversation that each and every one of us would do well to have with our doctors as well as our families.

The Conversation should be part of our wellness care, a routine part of health planning. The Conversation may indicate that, if we are terminal and on life support, we don’t want our lives artificially prolonged by modern technology. Or maybe, for a variety of reasons, we do want to be sustained indefinitely on a breathing machine, hovering between life and death. Having The Conversation is all about making our wishes known while we are mentally and physically able to make those decisions for ourselves. We need information from our doctors if we are to make informed choices and help shape our own medical outcomes.

Maybe we want to write a living will. Maybe we want to know what’s involved in organ donation. Maybe we want to learn more about designating a health proxy. Maybe we’ve already executed such documents but haven’t talked about them with our loved ones or with our doctors. Health experts indicate that more people have spoken with their loved ones about this than with their doctors.

But doctors need to hear our wishes as well. After all, for most doctors, the mission is to save lives, to try absolutely everything, even if the likelihood of a positive outcome is slim to none. The more experienced and thoughtful ones know that part of their mission needs to be explaining to patients what things will look like if life is artificially sustained, and what a “good death” can be with the options of hospice, pain medication, and other palliative care. This isn’t about the government deciding who shall live and who shall die, but our taking charge of our care, deciding, as patients, what we want for ourselves under different circumstances.

Studies show that, while 70 percent of patients say they want to die at home, fully 70 percent in fact die in the hospital, often in the Intensive Care Unit. For survivors, that can translate into guilt and depression. How much better to be able to say, in our grief over a loved one’s passing, that that loved one had the death he or she wanted. Those who have studied this area tell us that sometimes patients who choose palliative rather than aggressive care enjoy a better quality of life at the very end.

Aetna Insurance has experimented with a “compassionate care” program, letting patients with life expectancy of a year have hospice care without having to give up other, curative care. In the program, the percentage of patients choosing hospice care nearly tripled. People want to be able to choose how they’re cared for once they know what the different possible outcomes are. That’s what The Conversation with doctors is all about, and why it should be part of the ongoing care that doctors provide, an important regular conversation that health care reimbursement plans take into account. The Obama administration should keep focused on that and not lose control of the public dialogue. And media headline writers should resist the temptation to exploit the political extremes that grab attention but undermine the public good.

Please let me know your thoughts in the Comments section below.

8 Responses to Obama’s end-of life planning is all about “The Conversation” by Marjorie Arons-Barron

  1. C R Krieger says:

    I agree that these conversations need to take place.  And those conversations need to be paid for.  I do find it unfortunate that what Congress has refused to pass is being implemented by a rule from the bureaucracy.  Useful, but a bad trend.

    Regards  —  Cliff

  2. Righty Bulger says:

    If this is such a good thing, why the directive to try keeping it as hush-hush, low-profile as possible? You don’t think there might be some truth to these “death squad” fears, do you?

    Open your eyes folks. Even though the rest of the world comes here for our quality health care and services, we keep trying to mimic systems from the rest of the world. Does this make sense?

  3. Renee Aste says:

    I won’t go into the detail of my parent’s medical situation, but I do know for one is that s/he wants to live. Even if that means medicine’s best efforts leaves my parent to die in the ICU after week hovering between life and death after all known remedies were exhausted.

    Medicine works on a lot of practice, techniques that aren’t available now, can only possibly exist if doctors try and then develop better practices. What was deemed terminal, a decade or later could be treatable, but only if doctors have the ability and the patients to put in their best efforts.

    I want doctors to be thinking about best efforts to keep people alive and as healthy, not managing issues that contradict that objective or taking up time and energy for us who want treatment.

    I’m not against a conversation with family and friends, but the doctor should not initiate ‘the conversation’ that’s not his/her purpose as a doctor. I want doctors to be about life, not about wishes. If your choice is to live then see a doctor. If not, then don’t.

  4. C R Krieger says:

    Renee’s point reminded me of an article in The New Yorker some time ago, about a surgeon down in Cambridge or Boston, doing experimental surgery and being pretty cold and heartless in his use and abuse of patients, but out of it came some wonderful transplant techniques.  It left me with very mixed emotions, but Renee is correct.  If they don’t try they don’t grow,

    Regards  —  Cliff

  5. Righty Bulger says:

    Well said Renee, and I’m sure you know you and I rarely see eye to eye on issues. But you’re 100% right here. Once we start going down that slippery slope of death panels, it won’t be long before we become other countries, determining which patients are worthy of which treatment and deciding what age is no longer worthy of “heroic measures” to sustain life. Government should have no place in that discussion or in setting policy encouraging that discussion.

  6. Margie says:

    All we’re talk about here is enabling the patient to sort out the options and decide what is right for him or her. Exercising informed opinion means a full understanding of what the alternatives are and likely outcomes. I just don’t see that encouraging that kind of conversation between patient and doctor amounts to a slippery slope to a death panel. Either course of action, treatment or no treatment, I want to be the one to decide, or, if I am unable to do so, to have my medical proxy decide for me, based on my previously expressed wishes.

  7. Renee Aste says:

    I would like to note that ‘the conversation’ shouldn’t be just for those over 65. I think because medicare starts in your 60s, the conversation can be well upsetting. For example being in my early 30s if I’m otherwise brain dead on life support, but pregnant/potentially pregnant I would want a pregnancy test before removing support. If I’m pregnant, then keep on the support until the baby has safely gestated for the eight/nine months for a healthy birth.

  8. C R Krieger says:

    Margie says:  “All we’re talk about here is enabling the patient to sort out the options and decide what is right for him or her.”

    I beg to differ. We are talking about that, but there is also the issue of process, of how the Government rules on what is and is not acceptable.  That is the point that bothers me.  We have “experts” making those choices in this case, AFTER our elected representatives rejected the idea.  Our elected Reps were wrong, but they are the will of the People.  Remember, it was the technical experts, lawyers and doctors, who gave Germany the death panels in Sept of 1939.  No legislature voted on it.  This was before Germany got seriously into the Holocaust business, but was just working through German people who were “worthless eaters”.

    Good decisions taken through a bad process is precedent for bad decisions taken through that same bad process.

    Regards  —  Cliff