Remember all the hue and cry about “Death Panels” last year? Recall how powerful the fear was that it invoked, and how the outcry wound up blocking legislation aimed at reimbursing doctors for the time required to provide patients with information regarding end-of-life care?
Well, where legislation failed, it looks like regulation will prevail. The New York Times carried a front page article a couple days ago leaking news that under new Medicare regulation, starting on January 1, 2011, doctors will now be reimbursed for the time required to provide patients with adequate counseling for end-of-life care planning.
“The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.
Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.”
As some of you may remember, I wrote about this subject a while ago in Christmas Trees and Death Panels: How Fear Sets A Snare. Back then, I was disappointed but not terribly surprised that this legislation failed because it’s nigh-on impossible to legislate something that no one will even discuss. As someone who worked for six years with hospice and who strongly advocates for end-of-life care conversations, I’m certainly glad it finally passed.
But my reaction is hardly all leaping joy and ribbon waving.
On the one hand, I’m profoundly relieved that one of the major roadblocks to physician/patient discussions about end-of-life care is now removed. Even though this policy doesn’t address the real elephant in the room…the fact that most doctors are clueless about how to have that particular discussion with a patient…it at least now provides a financial incentive for them to face into all their deepest fears about death and dying and try to learn how to talk about it.
And I believe that’s a good policy. To explain why, I’ll refer once again to the decades long experiment in La Crosse, Wisconsin where doctors have been having regular end-of-life care conversations with their patients since the mid-1980’s. I’m not exaggerating when I say that this one, simple practice has made the quality of dying in La Crosse among the most benign, respectful, compassionate, comfortable, and enlightened in the nation.
Having said all that however, I’m still bummed at the stealth used to get this policy instated.
“While we are very happy with the result, we won’t be shouting it from the rooftops because we aren’t out of the woods yet,” Mr. Blumenauer’s office said in an e-mail in early November to people working with him on the issue. “This regulation could be modified or reversed, especially if Republican leaders try to use this small provision to perpetuate the ‘death panel’ myth.”…
The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.
So why does this kind of behind-the-scenes maneuvering dismay me? Because it’s going to make having an open, constructive, educational, illuminating, respectful, national conversation about dying even harder than it already was. (I didn’t know that was even possible.) Far from building any kind of consensus or trust, or making an attempt to listen to or address some of the real fears feeding into the Death Panels uproar, it instead seems to confirm one of the deep fears a lot of people already have about linking how we die with big government: namely, that those in power don’t really care about the concerns or desires of everyone they govern, but are only intent on imposing laws that they believe are best for everyone.
Overall, I rate this new regulation as basically two steps forward for health care policy, and one step back for public discussion and trust.
Sigh.
I foresee, with my magic crystal ball, that setting public policy around dying is going to continue to be a tough dance for everyone to learn.
copyright 2011 Dia Osborn
Update: Snoring Dog Studio expressed some confusion in the comment section as to what part of this regulation I was objecting to. Great question. It made me realize I didn’t reference something important that was said later in the article. I have now included the pertinent quote. Thanks Snoring Dog!
The Odd and Unmentionable 
I don’t understand your concern with this legislation – but I want to, because I think it is a good step in the right direction. How would our government mandate that docs have this discussion? Frankly, they certainly should, but most don’t even feel comfortable discussing obesity issues or the need for a patient to stop smoking. My experience with hospice during my Dad’s mysterious dying and resurrection was incredible. I’ve never met a more compassionate bunch of souls. My brothers were there – both are docs – and thank goodness they could talk about the end of life with their siblings and my mom. Enjoyed your post.
Hey Snoring Dog–thanks for the comment. I forgot to reference something mentioned later on in the New York Times article, which I’ve now included.
My concern is not with the policy. It’s great policy and badly needed. My concern is with the lack of national discussion around dying. The attempt at legislating doctors’ reimbursement for end-of-life care discussion was an incredible opportunity to jump start an intelligent, thoughtful, respectful, national conversation about how we die. The fact that thoughtful public discussion was largely ignored and mishandled from the start, predictably leading to the near-hysteria about Death Panels that followed is, to my mind, symptomatic of how terrified most people are to even think about the subject of dying, much less calmly discuss it.
What I’d really like to see is that underlying (largely unconscious) terror openly addressed with calm, understanding, caring, and respect. I’d love to see that kind of effort running parallel with further legislative efforts. It’s what the hospice team I worked with did on a small scale every time we walked into a home. We LISTENED to the dying person and their loved ones, worked to first understand, then address, THEIR fears, values, desires, needs, and dreams, so that we could best serve and support them.
I’d love to see a similar dynamic happen between our legislators and those they govern. Pipe dream? Probably. 🙂 But it’s MY pipe dream. What can I say?
I understand why, with the national conversation as emotional as it had become, that the Dems felt like the policy had to be crafted with a degree of secrecy. And like I said, I’m GLAD it’s now in place. VERY good things are going to happen as a result.
But that secrecy is going to create even more mistrust than before, and make a respectful conversation even more difficult going forward. That’s why I’m also a little disheartened.
I can’t disagree with you at all. I could smack the guy who began the whole nonsense about Death Panels, because, yes, right then and there, fear overcame reason and calm dialogue. Politicians and the people doing their PR management do us all a disservice when the much needed conversation gets shoved aside just for some spin. But shamefully, where were the physicians’ and other caregiver groups during this discussion? They of all people should have weighed in.
Ideally, there would have been a huge educational campaign implemented BEFORE the legislation was even proposed. Springing straight to law-making about dying, with a population that’s already so afraid of the subject they refuse to even talk about it, was bound to backfire. I’m reasonably sure if it hadn’t been “Death Panels”, something else would have surfaced to blow up the discussion. The American psyche just wasn’t prepared yet to grapple directly and courageously with something as frightening as the inevitability of dying.
The good news is, that kind of educational campaign can still be mounted. But I’m thinking now it will be harder for politicians of any stripe to participate in it because of the risk of the conversation becoming further politicized. I’m hoping the more that little conversations like this one can take place, the easier and more normal it will feel for others to tentatively join in.
I really believe that a better quality of dying is coming down the road. It’s just gonna be a bumpy ride. 🙂
my brother has been discussing “living wills” with his consultant…….
heres hoping someone reads it!
Dia, your blog is the perfect vehicle to jump start a national discussion. With that in mind, I was primed to post a link to this post on my FB Wall. After all if http://nerdyapplebottom.com/2010/11/02/my-son-is-gay/ can go viral, why not the death panel two-step?
But this quote gave me pause: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.” Would I be helping or hindering the process, I wonder?
I got your comment and thought I’d do a quick Google search to see if the regulation was a done deal before I answered. I found this article: http://www.nytimes.com/2011/01/05/health/policy/05health.html?_r=1 I feel like I just got kicked in the gut. The policy change was removed from the final version. I’m so sad. I can’t help thinking about all the people who will still be caught facing dying unprepared and flailing, probably without even their doctor to turn to for guidance or answers. Oh Linda…the hole is SO big. Once again I can’t help but think that this kind of legislation may not be possible without a longer, bigger, respectful, compassionate discussion that includes EVERYONE. The fear of talking about dying is so profound it’s paralyzing the whole system.
Damn, damn, damn.
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