Atul Gawande has an honest, poignant and important essay in the New Yorker (Letting go: what medicine should do when it can't save your life?). For all the technical issues that need to be worked out in the health care system, the most needed and missing thing is an honest and open cultural discussion about the issues described in the essay. It is a wide-ranging piece, and is better just read than described by me. Update: here is transcript of a live online chat session done by Dr. Gawande on his piece in the New Yorker.
At Duke, we (I am the Co-Principal Investigator along with my colleague Amy Abernethy, an oncologist at Duke who directs the Duke Cancer Care Research Program) recently recieved funding from AHRQ to conduct a study that looks at the care preferences of age-eligible Medicare beneficiaries with Cancer and their family members. The study uses a group decision making process called Choosing Health Plans All Together, that was developed by a colleague from NIH, Dr. Marion Danis and her colleagues at the University of Michigan. CHAT is an approach to discussing difficult questions/decisions and starts with persons giving their individual perspective/choice, moves on to a small group process, then a larger group (8-12 people) in which a consensus decision is made about what types of care are most important. The study sessions then conclude with another individual based 'round' in which each person identifies what types of care they would prefer given that they have advanced cancer. A key aspect of the study is to what degree people's perspectives changed by their participation, and how strongly they feel about the decisions that the group made.
The difficult aspect of the decision posed to participants in the research study is that they cannot choose all possible care, and so they must make hard decisions, at least in this study. In fact, the amount of care available in this theoretical exercise is based on the average amount that Medicare spends in the 6 months prior to death for persons who die from Cancer; this constraint is not now imposed on Medicare beneficiaries. The point it to identify preferences of persons with some experience with cancer as either a patient or loved one. The same type of exercise could be done with persons suffering from other diseases, or other groups, such as younger people.
We are nearly finished with pilot testing of materials and will begin data collection in earnest in August or September, 2010. This project is a little piece of our nation learning how to talk about difficult things in medicine and health care, and better understanding the preferences of patients for the types of care they could receive given a particular situation.