The Evolution of Hope in Advanced Illness: A Key to Health System Transformation

Aging Asian patient sitting next to IV drip bag and wearing head scarf, indicating that they are being treated for cancer, smiling while being hugged by health care provider.

March 4, 2020, 12:00 PM

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Description

Despite most patients’ preferences to die at home among their loved ones, many with end-stage cancer, heart failure, and other advanced illnesses spend their last days in the hospital. Many clinicians resist telling patients that treatments are not working or that their prognosis is poor, fearful of destroying their hopes for cure. Difficult but honest and needed conversations about patients’ prognosis can be blocked by an unrealistic view of hope focused solely on cure. But, as cure becomes less likely, a new type of hope can evolve. Skilled clinicians can nurture this intrinsic hope for quality of life and meaning by providing honest and realistic insights so that patients can clarify their care preferences and formulate effective end-of-life care plans. This approach, which can improve patients’ wellbeing and reduce caregiver burden and stress, is central to a “moonshot” goal, recently launched by the Coalition to Transform Advanced Care (C-TAC), to ensure that millions of people with serious illness have a high quality of life by 2030.

At this event, innovators, thought leaders, and advocates explored the nature, dynamics, and management of hope in the context of advanced illness and end-of-life care. The discussion focused on creating a foundation for future work, including communication tools to inform clinicians and foster wider awareness of the nature and dynamics of hope, contributing to an exploration of ways to implement, test, and disseminate novel tools and strategies nationally to improve care for the growing population of patients with advanced illness.

Panelists

  • Brad Stuart, MD, Chief Medical Officer, The Coalition to Transform Advanced Care and architect of the first U.S. advanced illness management program

  • Gloria White-Hammond, MDiv, MD, Co-Pastor, Bethel AME Church and Swartz Resident Practitioner in Ministry Studies, Harvard Divinity School

  • Shirley Roberson, Patient Champion, C-TAC Fellow, and Founder of Blue Chair Movement

  • Joseph Jacobson, MD, Chief Quality Officer and Senior Physician, Dana Farber Cancer Institute; Associate Professor of Medicine, Harvard Medical School

  • Megan Shen, PhD, Assistant Professor of Psychology in Medicine, Weill Cornell Medical College; Director of Communications Core, Cornell’s Center for Research on End-of-Life Care

  • Moderator: Carmel Shachar, Executive Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School

Discussion Topics

Panelists addressed topics including:

  • Improving Quality of Life Nationwide for the Seriously Ill: C-TAC’s Moonshot

  • The Importance of Spiritual Care in Walking Patients and Their Loved Ones through the Evolution of Hope

  • Building a Framework for the Evolution of Hope in Advanced Illness

  • Patients’ Perspectives on Hope in the Context of Advanced Illness

  • How Integrating Hope’s Evolution Might Help Improve the Delivery of Patient Care

  • Themes for a Fall 2020 Symposium

Part of the Project on Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity, and improve public and private policies in advanced illness care.

Videos

VIDEO: Panel Discussion

VIDEO: Audience Q&A

Tags

bioethics   end of life   project on advanced care and health policy   public health