Joan Teno, M.D., above, has devoted her career to measuring and improving the quality of end-of-life care for vulnerable populations, especially those in nursing homes. (OHSU/Kristyna Wentz-Graf)
Teno and her research team recently published findings in JAMA on trends in where people die. Read about the research on OHSU News.
Among her accomplishments, Teno and her research team helped create the Family Evaluation of Hospice Care survey used by 1,700 hospices across the United States.
Research News sat down with her to discuss her work. Here are some of Teno’s reflections.
Early lesson: Care wishes need a care plan
When I started practicing medicine in Washington, D.C. in 1990, I had a wonderful patient in an assisted living facility. She had detailed wishes on what she wanted for end-of-life care. I wrote notes outlining those wishes in her chart and filled out with her an advance directive. But even with all that she ended up in the E.R. against her wishes. Why? She needed opiates, and opiates could not be delivered to the assisted living facility, which was just six blocks away from the White House. To get opiates, she had to go to the hospital. If I’d known, I would have made arrangements for her to have opiates at her facility. It made me realize I can do this beautiful job documenting wishes but if I don’t have a plan to honor those wishes, it’s all for naught. That was an important lesson for me.
Older patients, complex cases
At the beginning of my career, I rarely saw people older than 100. Now I see people at 104, 105. “We have a tsunami of elderly.” And I used to see them in just one setting. Now, they’re moving between multiple settings, and they’re seeing multiple providers: hospitalists, intensivists, post-acute care. They’re frail. They’re older. The risks increase with each care transition.
“We can’t get it wrong”
Each person will have different preferences. For providers, the heart of it is this: excellent communication skills and shared decision-making. “For seriously ill people, advance care planning is not clear-cut. It’s complex.” You are there to help people understand their illness, correct misperceptions, explain what their prognosis is, offer treatment options and discuss what’s important to them. It’s about what they want to accomplish in this phase of life. We can’t get it wrong.
New models of care
That approach requires new models of care. We’re finally seeing a big transformation in medicine. It’s a time of great innovation in the care of the seriously ill. We are weaning ourselves off fee-for-service and moving to this notion of value. Take a 78-year-old with metastatic lung cancer. The physician may be important, but perhaps what is most important is a trusted, experienced nurse who helps coordinate that person’s care. How do we measure that quality and use it to shape the notion of value? How do we pay for it? These are the key questions for the next decade that I want to help answer at OHSU.
“The critical role that I, as a clinician-scientist, play is that I understand the science but I also understand what it’s like to care for patients.” I don’t study this alone. I work in a team of researchers, always a team, and it’s multidisciplinary. We are working to bring information to policymakers to make the best decisions. We can give policymakers statistics, but I can say: here is how your policy impacts that patient. It’s about trying to make a difference.
Teno is a professor of medicine, Division of General Internal Medicine and Geriatrics, OHSU School of Medicine.
In conjunction with the National Hospice and Palliative Care Organization, she created a data repository that provides benchmarks and research to improve hospice care. This survey was the basis for the Consumer Assessment of Healthcare Providers and Systems Hospice Survey that is being used nationwide to evaluate the quality of hospice care. In 2009, she was awarded the National Hospice and Palliative Care Organization Distinguished Research Award and named a Pioneer in Palliative Medicine by the Journal of Palliative Medicine for this contribution.
Another of her research projects examines the role of the acute care hospital in decisions to insert feeding tubes in nursing home residents with advanced dementia. She is also the project leader of an effort on Shaping Long Term Care in America to examine the variation and consequences of health care transitions.