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Massachusetts Coalition Explores ACP Utilization and Health Equity

The Massachusetts Coalition for Serious Illness Care was founded in 2016 with the goal of improving conversations for those living with serious illness. Advance care planning (ACP), where people are encouraged to name a health care agent and consider what kind of medical treatment they would want if they couldn’t speak for themselves, is one of those conversations. The coalition has done research over several years to determine the public’s attitude towards the ACP process, research that has helped inform C-TAC and the whole field about how to best prepare people for making future important medical decisions.

During the 2021 C-TAC National Summit, Anna Gosline from the Massachusetts Coalition spoke about the research efforts which are helping create a more equitable healthcare system that prioritizes the needs and preferences of all people with serious illness. Leaders like C-TAC board member Shirley Roberson steered this research into the nuances of ACP delivery, including details about how questions were asked and how patients felt when completing ACP appointments. While the research dove into the details of ACP, changemakers like C-TAC senior faith advisor Rev. Dr. Tyrone Pitts continued to place the research into a bigger context of what has gone before and what will come ahead. At the 2021 Summit Rev. Dr. Pitts reminds researchers to take care of the people who take part in surveys and forums and ensure that they benefit from the data collected.

From 2020 to 2021, the Massachusetts Coalition leveraged the findings of their 2018 survey efforts, which indicated that additional attention on public engagement around ACP was needed, and embarked on research exploring how to promote Black and Latinx utilization of ACP. The efforts were focused on the messaging around ACP and focused on these populations since they are least likely to utilize ACP and most at-risk for poor outcomes from serious illness. The research was done in the context of stagnant ACP utilization rates among people with and without serious illness, and as use of advance care planning methods, such as advance directives, declined in recent years.

Key findings from these research efforts underscored the importance of addressing the complete health care experience for underserved populations. In the shadow of stark inequity and injustice, ACP messaging is limited in its ability to improve care planning for individuals who have had negative interactions with the health system. Researchers found that the value of ACP was not always evident to patients and their families and that an individual with a prior negative health care experience was less likely to speak with their doctor about care planning.

The Massachusetts Coalition’s research efforts center the patient experience in order to uncover and address issues of equity around ACP. In doing so, their research points to the need to transform the healthcare system and create policy and practice that improves the experiences of all people with serious illness.

For more information on the Massachusetts Coalition for Serious Illness Care and their research efforts, click here.

View C-TAC’s National Summit content until January 31, 2022 here.

Written by: Andrew Lozano – C-TAC Communications Specialist, Marian Grant – C-TAC Senior Regulatory Advisor

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