Social Change Movement in Development of Meaningful Palliative Care and Medical Aid in Dying Policy: Understanding Oral Histories of Lived Experience of Unmitigated Pain and Bearing Witness

Background/purposes:

The problem of pain among diverse populations across the global world and development of palliative care policy are issues of critical significance in gerontological health and social work research. Challenges in the implementation of palliative care laws have been well documented. Such palliative care access barriers have galvanized robust advocacy for Medical Aid in Dying (MAID) Policy in New York.

The objectives of this study were to deepen understanding of the public health and social problem of pain at life’s end and the burgeoning social movement advocating for enactment of proposed MAID Policy in New York. The research questions were:

How do persons living with uncontrolled pain, and their family members and social work, medical, and other professionals who bear witness, understand the experience of intractable pain at life’s end?

How do narratives of experience of pain at life’s end impact the social change movement in New York to enact MAID Policy?

Methods

This exploratory study of pain and attitudes toward MAID and policy development used methods of oral history and qualitative inquiry and narrative analysis to unpack the meanings of oral histories of a convenience sample of forty (40) participants who provided testimony to the New York State Bar Association (NYSBA) MAID Task Force during the period September – December 2023.

Results

Participants with terminal illness or at life’s end communicated the meaning they made of their own lived – through pain as deeply personal and not directly knowable by others. Their perceptions of the right to self-determination and to choose medical aid in dying were prominent in the data.

Participants with disabilities made meaning of their experience of living with disabilities at life's end as being one of heightened structural vulnerability and risk in the event that medical aid in dying were to become law in New York. Some participants felt that no safeguards or additional measures or protections could reduce their risk in these contexts.

Social work, medical, and other professional participants from both Upstate and Downstate New York envisioned medical aid in dying as part of a reconstituted continuum of hospice, palliative care, and end-of--life care, but only if such continuum of care were to be adequately funded to ensure all New Yorkers had equitable access to such benefits.

Concerns about structural inequities and disparities were made explicit, underlining the importance of ensuring that all New Yorkers would have equitable access to medical aid in dying if enacted.

Conclusions and Implications

Oral history data from the NYSBA MAID Task Force Hearings help to illuminate the experience of pain as a social and public health problem. Structural inequities in care systems and failures in policy are also laid bare. Qualitative analysis of individual oral histories highlight the connection between personal stories of pain and bearing witness to pain as a larger context for driving social change and policy development in a refashioned pain-palliative care-medical aid in dying continuum in New York.