"Palliative Care: 5 Things to Talk About with Your Care Providers"

Eight months ago Honoring Choices launched the Palliative Care Project with one simple goal: to create consumer-friendly information and tools that empower consumers and care providers to have effective discussions about palliative care.

Building on the success of the Honoring Choices “5 Things to Talk About with Your Care Providers” discussion guides, the Northeast Palliative Care Regional Group of the Massachusetts Comprehensive Cancer Prevention and Control Network (MCCPCN) worked diligently with Honoring Choices to create a palliative care discussion guide to help consumers manage the pain, symptoms and stress of living with a serious advancing illness. The Palliative Care discussion guides are designed for both the consumer and the care provider: either can initiate a discussion to explore the benefits of adding palliative care at first diagnosis and all through the serious illness journey.

The drafts created by the Northeast Regional Group were sent out for additional comment to the Honoring Choices Partners and palliative care physicians, nurse practitioners, nurses, social workers and care professionals who work in diverse settings from large hospitals to community palliative care programs. Our goal was to bring together a more unified, common language to foster meaningful discussions and to provide early and on-going palliative care.

Honoring Choices is thrilled to launch the new Palliaitive Care webpage. Everyone can download the “What is Palliaitive Care” Question and Answer fact sheet.  Consumers can download the “Palliative Care: 5 Things to Talk About With Your Care Providers.” It provides questions based on your right to information, to make a plan, and to receive care that matches their care goals, values and choices.  There is ample room to write in your own questions and bring the guide to your next medical appointment. “Palliative Care: 5 Things to Talk About With Your Patients & Clients” mirrors the consumer questions for care providers to download and start a palliative care conversation. For Honoring Choices Partners, we created a 2-sided index card which contains both guides.

The Honoring Choices “5 Things to Talk About …”  discussion guides and card deck series have proven very successful in making goal-centered care discussions known and routine at every phase of health. You can view all the discussion guides here:  “ 5 Things to Talk About With your Care Providers, and “5 Things to Talk About With Your Patients & Clients.”

The Palliative Care Project has been a highly collaborative and informative endeavor. We will continue to work together to bring new information and tools to the Honoring Choices website.

We want to wholeheartedly thank the following champions who made this delightful collaboration possible:

• Lisa Leydon, Health Systems Manager, and Lindsay Nicholson, MPH, Health Systems Manager, Hospital, State-Based American Cancer Society. Lisa first brought the project idea to Honoring Choices.  Thanks Lisa for your leadership and vision;

• The Northeast Palliative Care Regional Group, MCCPCN, 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;

• 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, and all at the MCCPCN, Department of Public Health who supported the project. Thanks Gail for your terrific leadership;

• Honoring Choices Partners who sent their comments and edits. We received over 50 comment emails from all palliative care providers and programs across the state.

A special thanks to Elizabeth Collins, MD, Palliative Care Medical Director, Lahey Hospital & Medical Center and Christine McMichael, Executive Director, Hospice & Palliative Care Federation of MA.

Dr. Collins has consulted on the basic definitions and discussion guide, 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.  It’s coming soon to the Palliative Care webpage.

Ms.McMichael is working with the MCCPCN 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.