THE PALLIATIVE CARE PROJECT
Our goal is simple: Create consumer-friendly tools that empower adults and families to start a palliative care discussion with their care providers to help manage the pain, symptoms and stress of serious illness. The task however is formidable as Palliative Care programs in Massachusetts, whether centered in primary care, community groups, in-patient hospital programs or other facilities, can have wide-ranging protocols for how they define and talk about palliative care, who is appropriate for care, the types of services offered, and how to pay for care.
Our Honoring Choices Partners, Lisa Leydon, Health Systems Manager, State-Based American Cancer Society, Christine McMichael, Executive Director, Hospice & Palliative Care Federation of MA, and Elizabeth Collins, MD, Palliative Care Medical Director, Lahey Hospital & Medical Center, came together to see if we could identify a more common, unified ‘palliative care language’, to help consumers understand palliative care, start a discussion with their care providers, and find appropriate services in their community.
Ms. Leydon first approached Honoring Choices and suggested we work with the Northeast Palliative Care Regional Group, that includes care providers from Lahey Clinic, Hallmark Health, Winchester Hospital, Lawrence General, Lowell General, Tufts Health Plan, Atrius Health, Care Dimensions and many other groups, to start our collaborative project. The Northeast Palliative Care Regional Group is part of the Massachusetts Comprehensive Cancer Prevention and Control Network (MCCPCN), MA Department of Public Health. The MCCPCN is co- chaired by Ms. Leydon, Gail Merriam, MSW, MPH, and Connie Dahlin, ANP, BC, ACHPN, PFCN, FAAN, with support from Cherline Gene, MSW, Program Coordinator, Office of Clinical Preventative Services, MDPH.
Building on the success of the Honoring Choices “5 Things to Talk About with Your Care Providers” handy discussion cards, the Northeast Group worked diligently over several months to draft a new card called “Palliative Care: 5 Things to Talk with Your Care Providers.” The index card has consumer questions on one side, and mirrors those same questions from the care provider’s perspective on the reverse side. In this way either the consumer or care provider can start a palliative care discussion. The Honoring Choices discussion cards have been very successful in making goal-centered care discussions known and routine.
Additionally, Honoring Choices posted a “Palliative Care” page on its website that contains basic information and terms. Dr. Elizabeth Collins has consulted on the basic definitions and discussion card, and is creating a Serious Illness-Palliative Care Journey Timeline to help consumers understand the possible trajectory of their illness and how palliative care can be useful at different phases of illness. Christine McMichael is working with the Northeast Group and Signe Peterson Flieger, PhD, MSW, Tufts Health Plan Professor of Health Care Policy Research, Tufts University School of Medicine, on a mapping project to help consumers locate palliative services in the community.
Our next step is to send out the consumer-friendly packet of tools to all Honoring Choices Partners and any interested professionals for comment. Our goal is to unify a more common language among care providers, so consumers can approach any provider and have an effective discussion. If you are palliative care professional or work in the field, and not yet a Partner, please contact Ellen DiPaola, www.honoringchoicesmass.com, and we’ll send you the consumer packet for your comments. Everyone is welcome. Let’s do this together!