The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
By: Carole Montgomery, MD, FHM, MHSA – Executive Medical Director, Respecting Choices
Person-centered decisions are those that know and honor individuals’ goals, values, and preferences for healthcare.
The very essence of ACP is to help prepare people for making future healthcare decisions. High quality ACP provides an experience that supports people as they explore and reflect upon their goals and values – to discern what matters most in the context of their prognosis – and prepare for making decisions that will respect their lived experiences, and that address their fears and hopes in the context of their illness.
Through experiencing this process, people are better able to articulate, share and assert their personal values, goals, and preferences when those future healthcare decisions unfold at the point of care. They are prepared to engage as fully prepared partners in their care.
The current inequity in access to (and uptake of) advance care planning is one way in which historically marginalized groups face barriers to quality healthcare – healthcare that is consistent with their goals, values, and preferences – in serious and chronic illness.
The important and innovative work to improve equitable access to ACP and bridge the systemically derived gaps in ACP, such as the “Let’s Talk About ACP” project led by Dr. Gloria Thomas Anderson, is an important step to advance health equity. As ACP access becomes more equitable, it will give new voice to historically marginalized people. These voices will be empowered to share and assert their personal values, goals, and preferences in healthcare decisions. These voices will reflect a rich diversity of lived experiences, and of individuals’ social, religious, and cultural lives. Advance care planning provides the “knowing” part of “knowing and honoring” required for person-centered decisions.
In other words, ACP prepares people to let the healthcare team know more about them and what matters most to them. And while knowing is necessary, it is not sufficient to ensure that peoples voices are honored during clinical decision making.
People’s goals, values, and beliefs about serious illness and death are heavily influenced by their lived experiences, and their social, religious, and cultural norms. Person-centered decisions are at the intersection of healthcare and social factors. Temptation to ‘medicalize’ the rich context of who individuals are as people – and instead see them only through the lens and context of their role as “patient” – is a barrier to quality care and contributes to health inequities. As with other dimensions of healthcare, ACP access and quality are improved when facilitated by people that come from the same trusted cultural communities as those receiving the service. Unfortunately, the current healthcare workforce rarely reflects the diversity of the population it serves and in general, healthcare has earned the distrust of historically marginalized people.
Intrinsic bias due to the historic understanding of what the “population with serious illness wants” may impair the ability to recognize the diversity of lived experiences, and social, religious, and cultural lives that need to be integrated into clinical decision-making at the point of care, where person-centered decisions must be made. For healthcare to gain the trust of historically marginalized people, the system must become trustworthy through a commitment to know, understand, and honor what matters most to each person.
To learn more about ACP as a central component of C-TAC’s policy agenda, click here.