Thursday, April 30, 2009
David Leonhardt from the New York Times interviewed President Obama earlier this month and asked him about his ideas for health care reform and what that would look like from the patien'ts perspective. They touched on comparative effectiveness research, and the importance of the doctor-patient relationship, but it really got interesting (for me anyway) near the end of the article. Buried was a great insight into the President's own experience with caring for relative at the end of life.
Feel free to read the whole article, but here is the section that focuses on palliative care issues:
THE PRESIDENT: Now, I actually think that the tougher* issue around medical care — it’s a related one — is what you do around things like end-of-life care —
(* Ed. He thinks end of life decisions is tougher than regional disparities in cost of care when outcomes are similar aka the Dartmouth Atlas.)
LEONHARDT: Yes, where it’s $20,000 for an extra week of life.
THE PRESIDENT: Exactly. And I just recently went through this. I mean, I’ve told this story, maybe not publicly, but when my grandmother got very ill during the campaign, she got cancer; it was determined to be terminal. And about two or three weeks after her diagnosis she fell, broke her hip. It was determined that she might have had a mild stroke, which is what had precipitated the fall.
So now she’s in the hospital, and the doctor says, Look, you’ve got about — maybe you have three months, maybe you have six months, maybe you have nine months to live. Because of the weakness of your heart, if you have an operation on your hip there are certain risks that — you know, your heart can’t take it. On the other hand, if you just sit there with your hip like this, you’re just going to waste away and your quality of life will be terrible.**
And she elected to get the hip replacement and was fine for about two weeks after the hip replacement, and then suddenly just — you know, things fell apart.
I don’t know how much that hip replacement cost. I would have paid out of pocket for that hip replacement just because she’s my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question. If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life — that would be pretty upsetting.***
LEONHARDT: And it’s going to be hard for people who don’t have the option of paying for it.
THE PRESIDENT: So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right?
I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.
LEONHARDT: So how do you — how do we deal with it?
THE PRESIDENT: Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists****. And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through the normal political channels. And that’s part of why you have to have some independent group that can give you guidance. It’s not determinative, but I think has to be able to give you some guidance. And that’s part of what I suspect you’ll see emerging out of the various health care conversations that are taking place on the Hill right now.
**Was this the best informed consent? From the families perspective the answer is fairly obvious -> "Let's choose the option that does not result in a miserable quality of life." I know many in palliative care are familiar with this scenario since falls and strokes in the elderly can be poor prognostic signs in the absence of a rapid recovery.
***Hopefully with good palliative care services and a team approach with the orthopedic surgeon, there may have been a few intermediate options that balanced comfort regardless of the surgical approach.
****AND PALLIATIVE CARE TEAMS!
I know the NHPCO and the AAHPM are advocating for seats at the table when health care reform comes up. Palliative care needs to be well represented, but how do you see the role for palliative care principles in health care reform? It cannot just be a larger palliative care workforce, because we already have some difficulty filling the current and near-future workforce needs. What would you write to Obama, DeParle, and Sebelius? If we get a lot of good ideas here then we can submit them to the Palliative Care Coalition. More Pallimed grassroots coming right up!