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Integrating the Patient and Caregiver Voice into Serious Illness Care: Proceedings of a Workshop (2017)

Chapter: Appendix B: Workshop Agenda

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Previous Chapter: Appendix A: Statement of Task

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Suggested Citation: "Appendix B: Workshop Agenda." 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: 10.17226/24802.

Appendix B

Workshop Agenda

DECEMBER 15, 2016

8:00 am	Registration and Breakfast
8:30 am	Overview of the Roundtable on Quality Care for People with Serious Illness
	Leonard D. Schaeffer, University of Southern California (Chair)
	James Tulsky, MD, Harvard Medical School (Vice Chair) Roundtable on Quality Care for People with Serious Illness
	Overview of the Workshop
	Rebecca Kirch, JD, National Patient Advocate Foundation JoAnne Reifsnyder, PhD, RN, Hospice and Palliative Nurses Association
	Planning Committee Co-Chairs
8:45 am	Session 1: Integrating the Patient, Caregiver, and Family Voice into Person-Centered Care: Gaps, Challenges, and Opportunities
8:45 am	Moderator: Amy Berman, BSN, LHD, The John A. Hartford Foundation

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	Caregiver‒Clinician Pediatric Palliative Care Perspective
	– Blyth Lord, Courageous Parents Network Richard Goldstein, MD, Boston Children’s Hospital
	Caregiver‒Clinician Adult Palliative Care Perspective
	– Susie West, Hertzberg Palliative Care Institute at the Icahn School of Medicine at Mount Sinai
	Diane Meier, MD, Icahn School of Medicine at Mount Sinai
	Patient and Family Beliefs and Values in the Context of Spirituality
	– Karen E. Steinhauser, PhD, Duke University School of Medicine
	Panel Discussion, Audience Q & A
10:30 am	Break
10:45 am	Session 2: Addressing Sociocultural Differences in Care for Seriously Ill Children and Adults
10:45 am	Moderator: Robert A. Bergamini, MD, Mercy Clinic Children’s Cancer and Hematology, Supportive Care Coalition
	Addressing health equity and quality-of-life priorities and concerns experienced by patients and caregivers among geographically and ethnically diverse and vulnerable populations
	– Shonta Chambers, MSW, Patient Advocate Foundation
	Opportunities for addressing health disparities through chaplaincy/spiritual care services and support, including cultural humility/sensitivity
	– Rev. Alice Cabotaje, MDiv, BCC, ACPE, Massachusetts General Hospital

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	Promoting dignity, quality of life, and health outcomes for underserved populations and addressing ethnicity and poverty effects on preferences and care
	– Stacy Fischer, MD, University of Colorado Denver School of Medicine
	Identifying and honoring preferences in the context of reducing racial disparities—addressing health disparities through improved communication and other strategies
	– Kimberly Johnson, MD, Duke University School of Medicine
	Panel Discussion, Audience Q & A
12:30 pm	Lunch
1:20 pm	Session 3: Integrating Person-Centered Care Across Ages, Diagnoses, and Disciplines
1:20 pm	Moderator: Terry Altilio, LCSW, ACSW, Mount Sinai Beth Israel Medical Center
	Nurturing healthier connections between patients, caregivers, and clinicians through skilled communication emphasizing honesty, empathy, and hope
	– Anthony L. Back, MD, University of Washington and Fred Hutchinson Cancer Research Center
	Team-based prehabilitation and rehabilitation services integration as complement to palliative care and other supportive services focused on addressing patient and caregiver quality-of-life goals and priorities
	– Julie Silver, MD, Harvard Medical School

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	Special issues and needs in caring for seriously ill infants and their families, including identifying parent values and preferences in the context of perinatal and neonatal care and developing strategies for teams and a relationship-centered approach
	– Kathie Kobler, MS, APN, PCNS-B, CHPPN, FPCN, Advocate Children’s Hospital
	Opportunities for extending health system reach in addressing patient and family needs for spiritual and other care throughout the continuum using community-based chaplaincy and other services
	– Rev. Malcolm Marler, The University of Alabama at Birmingham
	Panel Discussion, Audience Q & A
3:15 pm	Break
3:45 pm	Session 4: Innovations and Interventions to Support Communication of Needs, Values, and Preferences
3:45 pm	Moderator: Ellen Goodman, The Conversation Project
	Engaging communities in using tools to normalize quality-of-life conversations and build patient connections that support improved decision making and help align care with values, preferences, and priorities of the patient, family, and caregiver
	– Nick Jehlen, Common Practice
	Community outreach to vulnerable populations in care planning and discussions; PREPARE website and tools
	– Rebecca Sudore, MD, University of California, San Francisco, School of Medicine

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	Community-based research on health-related quality of life in complex chronic illness, rural health disparities, integrated palliative care
	– Joy Buck, PhD, RN, West Virginia University Health Sciences Center
	Findings and lessons learned from nationwide research on consumer preferences related to end-of-life care
	– Peter Mitchell, SalterMitchell
	Panel Discussion, Audience Q & A
5:15 pm	Wrap-Up and Reflections on the Day
	Rebecca Kirch and JoAnne Reifsnyder
	Planning Committee Co-Chairs
5:30 pm	Adjourn