Improving the End-of-Life Experience

The "Engage with Grace" project was created by Paul Levy, of the Running a Hospital blog, and Matthew Holt of The Health Care Blog:

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

Op-Ed on Health Care Reform

Shannon Brownlee, author of Overtreated, and Ezekiel Emanuel, author of Healthcare: Guaranteed, two thoughtful people working toward making our health care "system" more fair, safe, and efficient, have an Op-Ed in favor of health care reform in today's Washington Post. Their goal is to dispel some myths about health care, starting with the canard that the U.S. system is the best in the world. Interestingly, further down, the authors cite survey data showing that 70 percent of Americans feel that the system needs major changes if not a complete overhaul. Still, it helps to repeat outloud and often that our system is not the best - just the most expensive. The comments about the costs of health insurance, and who pays them, are well taken and less obvious.

Read my interview with Shannon Brownlee here.

Straight shooting on evidence from the NYTimes

Just noticed a new series exposing health care interventions that don't work, in the NYtimes... not in the health section, but in the business section. The first article is on an apparently dangerous prosthetic hip socket, and highlights the US' failure to implement device registries that could allow the identification of faulty implants of various kinds.

Here's the blurb:

The Evidence Gap: An Imperfect Picture

Articles in this series will explore medical treatments used despite scant proof they work and will consider steps toward medicine based on evidence.

I don't know how many of these are planned, but I imagine they could fill a couple years' worth of weekly columns.

Regarding this article, I'd quibble with the idea that registry data are evidence, per se; the problem with interpreting the data is that there are no controls. One application for registry data stems from the fact that pre-market randomized trial data that provide actual evidence for devices (and drugs for that matter) are inadequate. In this case, the faulty devices in question were found to be contaminated with oil, more of a manufacturing quality-control issue than a general validity issue. The former point still holds, but registries can still provide a useful function in pointing to problems.

Best study name ever

Thanks to my friend Pam Marcus for passing this along. I thought it was an appropriate way for me to celebrate my reentry into blogging.

Lacasse A, Rey E, Ferreira E, Morin C, Bérard A: Validity of a modified Pregnancy-Unique Quantification of Emesis and Nausea (PUQE) scoring index to assess severity of nausea and vomiting of pregnancy. Am J Obstet Gynecol. 2008 Jan;198(1):71.e1-7.

Thank you, CBO

California HealthLine today reports on a new Congressional Budget Office Report that finds that inefficient delivery of health care, and delivery of interventions of dubious value, will swamp the effect of the aging of the population in increasing health care costs over the foreseeable future.

"The nature of the long-term fiscal problem has been misdiagnosed," Orszag said, adding that the aging population "is not by any means the main factor" behind the projected rise in cost growth. He noted that many new medical treatments and tests are "of dubious value." He said that in their efforts to stem the growth of health care costs, Congress and federal policymakers need to promote cost effectiveness and "evidence-based" medicine (Reuters, 11/13).

Obviously Congress needs to take the lead in addressing this struggle. Senate Finance Committee chair Max Baucus pledged to address the problem aggressively; I hope he does, and I hope Budget Chief Orszag doesn't lose his job saying what needed to be said.

NY Times skewers "natural" claims of beauty products

Natural does not equal healthier, nor does it even equal, well, natural. An article in today's Times skewers the marketing ploys of a variety of beauty products available at stores like Whole Foods, and reiterates that there's no evidence that individual ingredients benefit health or beauty, or that claims of their natural or organic provenance are even necessarily true. Manufacturers profit handsomely on consumers' emotional beliefs that natural is somehow better.

"We’re seeing an increased consciousness that what you put on your body is as important as what goes in your body,” said Jeremiah McElwee, the senior coordinator in charge of personal care at Whole Foods, which is the company’s fastest-growing department. “The biggest impetus for buying natural or organic body care is the perceived health benefit.”

Emphasis on "perceived."

New website on reporting guidelines

The Equator website serves as a resource for consistent, accurate reporting in the literature of new research in a variety of health disciplines (e.g., systematic reviews, clinical trials, observational studies). Several of these disciplines have their own guidelines (e.g., the CONSORT guidelines for clinical trials), which are enforced by some of the leading journals. The site provides resources for authors, editors, and guideline developers.

reporting guidelines