As we've written a lot on end of life care, we notice when others do the same. NPR's Joseph Shapiro this week reported on La Crosse, WI where 96 percent of the adults who die have an advanced directive. That extraordinarily high figure arises from the innovations and commitment from Gundersen Lutheran hospital. Careful, sensitive discussions by trained doctors and nurses -- they use a 12 page guide -- is time consuming. Medicare doesn't reimburse them for that time, A provision in the House health care bill would change that -- the provision that was caricaturized as a "death panel." The Senate bill doesn't contain it.
After all the sound and fury of last August, we're pleasantly surprised that the right hasn't risen again with all sorts of horror stories about the resurrection, so to speak, of the "death panels." Maybe because all that fear-mongering was finally discredited. Maybe we are finally getting just a little bit smarter.
The inevitable focus on the politics of health reform, and the disproportionate amount of attention paid to the public plan, sometimes obscures the many ways that the House and the Senate health plans are ambitious. Not perfect. Ambitious. I've heard experts, people I like and respect, say the legislation does "nothing" to advance the cause of quality of end of life care in America. They are wrong. The House and Senate bill each contain measures that would advance that cause -- not fix it completely, far from it, but they will take us important steps in the right direction. It's too soon to know which of these measures - if any -- will survive a final melding of House and Senate legislation. But let's look at them here because, except for the end of life consults which got way too much of the wrong kind of attention, they haven't gotten adequate attention. In an accompanying guest post. Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, talks about what these changes can mean for his patients and their families.
We just posted on some of the measures within the House and Senate bills that may help lead us to improved care for people at the end of life. Here, Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., returns as a guest poster to tell us what it all means for his patients -- and the doctors who treat them. Byock, the author of Dying Well, has written for us before about the need to think more broadly about what kind of changes we need in our health care system -- and our communities -- to do a better job of caring for sick and frail people trying to get by in their homes.
With Baucus's bill now out, there will be ample and we expect acrimonious debate about subsidy levels and affordability, the mechanics of the insurance exchange, the financing, and of course the lack of a public plan option. (We wonder if the recent survey showing how popular the public plan is among US doctors will have a discernible impact.)
But we wanted to point out some of the less controversial measures (if there is such a thing as uncontroversial after this summer) that touch on some of the topics we've been writing about that aim, simply, to keep us healthy, or to reduce avoidable complications and deterioration when we get sick. As Sen. Baucus himself put it, steps toward changing how we deliver and pay for health care are often overlooked in the national debate but can have a "transformative" effect on enhancing quality while holding down costs.
Preventive care will get more emphasis, and Medicare patients won't have a co-pay for certain screening tests and preventive services proven to be effective. Medicare patients would also get a "wellness visit" annually (which isn't covered now.)
Dr. Diane Meier, one of the nation's leading voices for palliative care writes about what really happens in end of life discussions on RWJF's User's Guide to the Health Reform Galaxy blog. Diane notes that "end of life" is a misnomer -- many people live for a number of years with chronic disease, and we don't really know when someone will bounce back from a crisis, when they will decline gradually, when they will die. It's a delicate conversation -- for which doctors currently are not well compensated. But it's a crucial conversation that can guide patients, doctors and families into making sure that people get the treatment they want when they can no longer speak for themselves. And if their wishes are for aggressive, do-everything-you can treatment, that too counts as an advanced directive.
Lots of heat out there about palliative and end of life care (they are not synonyms) but not a lot of light. Carol Ann Campbell on Kaiser Health News today takes a look at what palliative care can do for seriously ill children and their families, and the obstacles to getting it to them. I've reported on some of these same programs and obstacles before (here and here) as well as the slowly expanding access cancer patients -- including some who are very sick but not necessarily dying -- have to palliative care as they endure painful symptoms, difficult treatments, and complex decisions. As the political hue and cry shows, these are difficult topics to talk about in our culture. Too often, people equate palliative care with "pulling the plug." In reality, palliative care teams (which often include chaplains and social workers, as well as doctors and nurses) treat pain, control symptoms, and help patients and their families with the physical, practical, emotional and spiritual challenges of serious illness.
Paul Testa's post about Obama's town hall meeting in New Hampshire mentioned Ezra Klein's interview with Sen. Johnny Isakson about advanced directives. We thought it was worth sharing more of Isakson's comments. Isakson's a conservative Republican from Georgia, and not one of those mavericky independent conservatives. But he says he can't figure out how a bipartisan initiative that encourages people to plan for (and share with their family) what kind of care they want if they are critically ill and incapacitated has become a partisan fight about government-run euthanasia. We were just about to post this when -- proving our point about his nonmaverickness -- we checked his website and saw his statement "denouncing" the White House for complementing him...Excerpts below:
First the interview:
How did this become a question of euthanasia?
Older Americans are a lot more apprehensive about health reform than younger ones, according to a CNN/Opinion Research Corp. poll released this week. That's highly understandable given all the outrageous rhetoric out there trying to convince people that health reform would be tantamount to Henry VI shouting, "First, kill all the Grannies."
Overall, the poll showed that support for President Obama's health reform has actually held pretty stable -- despite the stepped up and shrill campaign against it. In late June, 51 percent backed Obama on health care, 45 opposed. A month later, it was 50 percent in favor, and a stable 45 opposed. And a large majority -- 77 percent -- agreed it was necessary to make "major structural changes" to U.S. health system to make sure everyone has health insurance, and a similar number -- 74 percent -- said major structural changes were necessary to reduce costs.
But the poll also found that a majority of those over age 50 opposed the president's approach, while a majority under 50 approved.
You may have seen the latest message tirade from the right -- health reform equals rationing equals hospice equals euthanasia.
Give us a break.
The House bill would encourage advanced planning. It would not mean that "old people could be visited in their homes and essentially be told, 'all right, sweetie, you have had a good life.'" It would not send government bureaucrats into homes to counsel seniors about how to cut their life short. It would not "start us down a treacherous path toward government-encouraged euthanasia."
Republicans talk about choice, and about patient autonomy and decision-making. Advanced directives encourage, and enable, informed choices. They encourage, and enable, conversations between patients and doctors. They encourage and enable conversations in families. They make it more likely that choices are respected and carried out -- which is not always easy in a medical system where the default is usually to do more and more, and in a culture where the default is often to avoid thinking about or talking about death and dying.
President Obama speaks about his grandmother's death and the questions it raises about end of life care in an interview published in this weekend's New York Times Magazine. It's a thoughtful and frank public airing of a painful topic. The Times' Peter Baker wrote a related article linking the president's comments to the politics of health reform. The questions Baker raises about scarce resources and decision-making were perfectly legitimate, given the political moment we are in, but they aren't the questions that came to my mind as I read the piece. (On the web, the relevant portion of the magazine interview starts at the end of page 4).
The questions I wonder about were why, exactly, did Madelyn Dunham (Obama's grandmother) get hip replacement surgery given that she was suffering from heart disease, terminal cancer and possibly had had a stroke. I'm not talking about the cost, here. I'm talking about whether it was really the best option for her, or whether she was a victim of our procedure-driven "let's do it because we can" medicine. Did she fully understand the risks and implications, not just while she was in surgery but during the recovery? How well did anyone explain other less invasive options? Who—if anyone—was coordinating her care? Were the various specialists (that may have included oncologist, surgeon, cardiologist, orthopedist, hospitalist and/or internist and who knows who else) communicating and how? Was a pain or palliative care specialist consulted?