February 7, 2018

Health literacy is for doctors, too

Doctors as well as patients need health literacy. I just came across a "Perspective - Less is More" essay in the JAMA Internal Medicine that makes the point better than I ever could. (Unfortunately, JAMA does not allow me to make the two-page article available to you, but you can see the first page online and then ask your internist to borrow his copy!)

Two young doctors--and brothers--shared the story of taking their grandfather home from the hospital:  "Dying at Home - Our Grandfather's Great Escape".  Besides acknowledging the typical end-of-life trajectory in Canada and the U.S. (repeated trips to the hospital and being "weaker and more discouraged" upon returning home each time), they also write eloquently about how their family pulled together as advocates for their grandfather in his final days.

These young doctors nailed it when they observed that care at the end of life--and for all chronic and critical conditions--is more than just asking about advance directives. Preserving patient autonomy requires complete and effective patient-provider communication, while respecting the patient's dignity and values. 

This is the part I was most drawn to: "Certainly our health literacy, knowledge of existing public resources, and financial means for accessing private services when needed all helped ensure that our grandfather was comfortable and cared for at home." Health literacy. Not their obvious expertise as health care professionals, but their ability to access resources and make informed and shared decisions. Health literacy is the same for all of us.

And this is the part that most concerns me:  It is the second time in as many days that I have heard doctors analogize a hospital to a prison, with phrases such as "making the 'Great Escape'" and "busting them out of there." If that's indeed what health care in the final chapter of life has come to, let us hope the wardens, guards and prisoners can work together to make needed changes.

To Dr. Nicolas Chin-Yee of The Ottawa Hospital and Dr. Benjamin Chin-Yee of the Department of Medicine, University of Toronto, I thank you for sharing your personal story. The quality of patients' lives to the very end of life depends on the health care providers of your generation. And I thank you for speaking truth to outdated attitudes. I hope you will continue to be inspired by the "quality finish" your grandfather had.