Five Most Pressing End of Life Science Policy Needs

A colleague from a federal funding agency asked me last week for a “10,000 foot view of what you feel are the five most pressing science policy issues for palliative, hospice, end-of-life areas?”

Here goes.

  • How to better represent uncertainty (prognosis, treatment effectivenss, etc) to patients and families
  • Aligning patient/family wishes and preferences with treatment options offered (at both a micro level—as patients go through illness trajectory as well as in structuring what is offered to patients in benefit packages)
  • Improving methods of non experimental inference, which includes reaching a societal consensus on ‘how much evidence is good enough?’ to make policy decisions based on observational demonstration evidence
  • Improving prognosis methods, and including morbidity/disability states as both an outcome of interest, as well as using same to better predicting survival
  • Harvesting and providing data on cost, quality and patient/family preferences in near real time so that it can be used to inform treatment decisions

About Don Taylor
Professor of Public Policy (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute), and Chair of the Academic Council at Duke University . I am one of the founding faculty of the Margolis Center for Health Policy. My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

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