March 12, 2012

Patient-Centered Outcomes Research Institute

1701 Pennsylvania Avenue, NW, Suite 300

Washington, DC 20006

Re: Draft Proposal for National Priorities for Research and Research Agenda

To PCORI:

The Center to Advance Palliative Care strongly supports the PCORI's draft proposal for national research priorities and particularly the inclusion of palliative care among the 10 priorities.

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

Studies over the past decade have demonstrated that palliative care teams have been shown conclusively to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 10 years the number of palliative care programs has nearly tripled, now reaching more than 85% of large hospitals in the U.S. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families.

Palliative care provides a well-developed and generalizable model to improving care for the 5% of most seriously ill patients and families that are driving over 50% of healthcare costs. Nevertheless, a number of knowledge gaps exist that can only be addressed through patient-centered outcomes research.

Specifically, we urge PCORI to focus priorities in palliative care research in 3 key areas:

  • Addressing knowledge gaps in pain and other symptoms.
  • Improving communication between patients and providers around goals of care and treatment choices in the setting of serious illness.
  • Developing new models and evaluating existing models of palliative care delivery.

We also recommend that PCORI’s Proposed Research Agenda incorporate the following changes:

  • Assessment of Prevention, Diagnosis, Treatment, AND PALLIATION Options.
  • Communication and Dissemination. Research should focus on (1) strategies to improve patient and clinician knowledge about prevention, diagnosis, treatment AND PALLIATION options.
  • Addressing Disparities. Research should focus on (1) ways to reduce disparities in health outcomes, and (2) benefits and risks of healthcare options across populations AND STAGES OF THE LIFE CYCLE.

Thank you for this opportunity to comment.

Sincerely,

Diane E. Meier, MD

Director