July 9, 2012

jamaforum-logo-may-11-20121I’m blogging for JAMA (Journal of the American Medical Association) on its News Forum, News@JAMA, with a group of economists, policy wonks, physicians, and health services researchers.  My latest post speaks to the “death panel” rhetoric rearing its ugly and inaccurate head again.

It’s clear to me that we need to take back the conversation about how we die and reframe it. It’s really a matter of  “choice”–consumer or patient choice. The “death panel” rhetoric limits our choices by undermining the passage of thoughtful public policies that can give us more choice in how we die. This includes paying health care providers for periodic conversations with patients and their families about end-of-life choices before we’re terminally ill. And it includes paying for hospice and palliative care as needed. Medicare still limits hospice coverage to 6 months if the patient is deemed terminal by a referring physician. (This period can be extended.)

The Coalition for Transforming Advanced Care was formed to reframe this discussion. The vision for C-TAC, as it’s called, is: “all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity.”  It’s founders, including former AARP CEO and marketing genius Bill Novelli, felt that “Advanced care” was a more acceptable phrase than “end-of-life” or “dying”. But I’m not sure I agree. We’re already a death-averse society: people don’t like to talk about death and dying, let alone witness it. That is, except for most nurses and some physicians. We are witnesses to death and dying. Perhaps it’s one reason why I feel so strongly that people have to have choices in dying, when possible.

How would you reframe this discussion?

Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing, Hunter College