The New Health Dialogue

Yesterday we brought you the highlights of the Dartmouth Atlas study on the end of life treatment experiences of Medicare patients with advanced cancer. Lots of last minute hospitalization and rescue care,  hospice was too little and too late, and the significant regional variation that Dartmouth has been documenting in excruciating detail for 20 years.

We promised more when I finished a longer piece. Here's the link to that piece, "For Dying Cancer Patients, Geography is Destiny." Here is some of what I reported:

We are giving an awful lot of very aggressive care to patients who are pretty close to death, with advanced and advancing metastatic cancer. As health care consultant Rosemary Gibson said, "We still don’t know when to stop."

We don't really know how much of this care is really in accordance with the patients' preferences -- although we do know that the vast majority of patients say they would rather die at home with their family, not in an ICU. The issue isn't just how much care people get -- it's whether they are getting the care they want, and what tools and supports do they have to make decisions.

Regional variation is not just McAllen v La Crosse. It's within cities, even within neighborhoods. Vast differences in treatment patterns occur in hospitals that are just a few blocks apart. It's hard to tease out how much has to do with the bed supply and cancer center economics of a specific hospital (Medicare pays a whole lot more for chemo than it does for having a conversation), how much is that doctors in Hospital A have just gotten used to doing things differently (and more intensively and expensively) than hospital B, how much is subtle local cultural differences. As one doctor noted, Hasidic Jews in Brooklyn make very different end of life decisions than Latinos in the Bronx. Physically not so far. Culturally, a chasm.

There is a lot of variation in treatment patterns at very good academic medical centers. Some really renown cancer centers, including Memorial Sloan Kettering and Johns Hopkins, actually have relatively low hospitalization and ICU rates for the dying. Others, not so hot. Similarly, for complex reasons that we can't completely tease out here (including the fact that hospital inpatient palliative care has grown quite significantly since this study started in 2003) some hospitals with nationally known palliative care programs have fairly high hospitalization use. This study measured hospital use and hospice use. Palliative care has developed partly to let people find a middle ground between trying to cure or slow down their disease while also getting some of the pain management and support services usually associated with hospice.

We do know that there is growing evidence that people who have thorough, honest conversations with their doctors about their prognosis and options and wishes and fears and beliefs often choose less invasive, less aggressive care. And as the Dartmouth report said, we all need a lot more of those conversations and we need them well before we are in a gurney heading for the ICU. As Dartmouth's Dr. David Goodman said, “Opening up that conversation early allows for that conversation as well to evolve over time. The tragedy is when those conversations only start near the end. The longer you wait, like many things, the harder it is to do.”