The collaborative is an ad hoc activity convened under the auspices of the Roundtable on Quality Care for People with Serious Illness at the National Academies of Sciences, Engineering, and Medicine (the National Academies). The work it produces does not necessarily represent the views of any one organization, the Roundtable, or the National Academies, and is not subjected to the review procedures of, nor is it a report or product of, the National Academies.

Description

Individuals with a serious illness need relief from the symptoms and stress of their illness and the side-effects of treatment across their lifespan. Serious illnesses such as Parkinson’s Disease, cancer, and kidney disease are increasingly chronic, requiring care that meets the needs of a patient and their family at various stages, often for many years. The care that many individuals with a serious illness receive throughout the course of their illness, including at the end of life, has evolved significantly over the past 10 years. For example, many services are now provided in the home, there is growing recognition of the needs of caregivers, and new Medicare payment codes enable a clinician’s ability to work with and train patients and families on care plans and care transitions. However, access to high-quality, patient- and family-centered, whole-person health care varies significantly across the country. Furthermore, the toll of navigating complex insurance structures and health systems affects all people with a serious illness.

Palliative care models can provide a patient-centered home for an individual with a serious illness, but the availability of specialty-trained palliative care professionals varies and is heavily influenced by non-medical factors such as geography, and socioeconomic status. Also, the evolving transition from fee-for-service payment structures to value-based payment for healthcare services presents opportunities to provide coordinated care for serious illness from an interdisciplinary team (e.g., doctors, nurses, social workers, pharmacists, physical therapists, nutritionists, and spiritual care experts), but challenges in implementation remain, such as adequately measuring and reporting the quality and value of care services for serious illness.

Collaborative Approach

The National Academies Roundtable on Quality Care for People with Serious Illness has provided value to the serious illness community since 2015 by offering a neutral setting to convene community partners across sectors to develop a mutual understanding of key issues and provide the launching point for coordinated action and collaboration. This Action Collaborative will develop an individually-authored white paper to elevate and synthesize insights from the past 10 years of changes and advancements in serious illness care and provide technical assessments of strategies or priorities for improving serious illness research and care over the next 10 years.

Collaborative Members

• Brynn Bowman (co-lead), Center to Advance Palliative Care
• Jessica Hausauer (co-lead), National Coalition for Hospice and Palliative Care
• Peggy Maguire (co-lead), Cambia Health Foundation
• Jori Bogetz, Seattle Children’s Hospital
• Ab Brody, NYU
• Jon Broyles, Coalition to Transform Advanced Care
• Heather Coats, Hospice and Palliative Nurses Association
• Matt Gonzales, Institute for Human Caring at Providence St. Joseph Health
• Corita Grudzen, Memorial Sloan Kettering Cancer Center
• Susan Hedlund, Biller Family Foundation
• Amy Kelley, independent expert in serious illness
• Kashelle Lockman, Society of Pain and Palliative Care Pharmacists
• Diane Meier, Icahn School of Medicine at Mount Sinai
• Katie Robinson, CSU Shiley Haynes Institute for Palliative Care
• Phil Rodgers, University of Michigan
• Joe Shega, American Geriatrics Society
• Maurine “Mo” Stuart, National Patient Advocate Foundation