Millions of people—infants, children, adults, and their families—are currently coping with serious illness in the United States. Efforts are intensifying to improve overall care quality through the delivery of person-centered and family-oriented services, for patients of all ages and across disease stages, care settings, and specialties. While aging Baby Boomers are increasing the proportion of patients in the Medicare population over time, the sickest and most vulnerable patients needing health system support and other services to meet their complex needs can be found across the age spectrum and in a broad range of care settings, from perinatal care to geriatric care.

Recognizing the need to thoughtfully consider and address the challenges and opportunities in efforts to improve care quality and value, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held the public workshop Integrating the Patient and Caregiver Voice into Serious Illness Care, on December 15, 2016, in Washington, DC. This workshop was the first in a series planned by the roundtable, and was designed specifically to bring together diverse personal perspectives and experiences about priorities and values that are important to patients and families coping with serious illness, and to consider solutions that support integration of these priorities and values in practice. This publication summarizes the presentations and discussions from the workshop.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• PLANNING COMMITTEE FOR A WORKSHOP ON INTEGRATING THE PATIENT AND CAREGIVER VOICE INTO SERIOUS ILLNESS CARE
• ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS
• Reviewers
• Acknowledgments
• Acronyms and Abbreviations
• Proceedings of a Workshop
  • INTRODUCTION
  • INTEGRATING THE PATIENT, CAREGIVER, AND FAMILY VOICE INTO SERIOUS ILLNESS CARE: CHALLENGES AND OPPORTUNITIES
  • EXPANDING ACCESS TO PALLIATIVE CARE
  • ADDRESSING SOCIOCULTURAL DIFFERENCES AND NEEDS IN UNDERSERVED COMMUNITIES
  • ADDRESSING SERIOUS ILLNESS IN PERINATAL AND NEONATAL CARE SETTINGS
  • ADDRESSING IMPAIRMENTS THROUGH THE INTEGRATION OF PREHABILITATION AND REHABILITATION SERVICES
  • SUPPORTING SPIRITUAL, SOCIAL, AND PSYCHOLOGICAL NEEDS
  • PRIORITIZING COMMUNICATION AND CONNECTIONS
  • TOOLS THAT HELP MATCH TREATMENTS TO VALUES
  • FINAL THOUGHTS
  • REFERENCES
• Appendix A. Statement of Task
• Appendix B. Workshop Agenda

Rapporteurs: Joe Alper and Laurene Graig.

Suggested citation:

National Academies of Sciences, Engineering, and Medicine. 2017. Integrating the patient and caregiver voice into serious illness care: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/24802.