Death panels. Seven years ago, these two words nearly brought down the Affordable Care Act (ACA), and effectively halted discussion on end-of-life care issues. Today, the landscape has changed to transform advance care planning (ACP).
As described in a recent Health Affairs Blog post, the 2014 Institute of Medicine’s (IOM) report, Dying in America, and the Centers for Medicare and Medicare Services’ (CMS) 2015 decision to compensate physicians for having ACP conversations were important steps towards increasing the number of ACP conversations and encouraging doctors and patients to discuss the challenges associated with serious illness. These efforts, along with the tireless work of advocates, have raised awareness of the importance of ACP.
However, as one proponent stated, we cannot expect physician reimbursement to change attitudes surrounding ACP — we need to engage community members and leaders. In spring of 2016, a volunteer collaborative based in Washtenaw County, Michigan, the Washtenaw Health Initiative (WHI), set out to do just that by identifying the barriers faced by individuals and families in our communities.
Through a series of focus groups and interviews detailed in a recent white paper we learned that in Washtenaw County, one of the top 10 healthiest counties in Michigan, ACP is not an accepted, understood part of the normal aging process, despite the fact that many residents have access to high-quality health care.

Understanding Our Community And Identifying ACP Gaps And Opportunities

Washtenaw County is home to more than 350,000 people in southeastern Michigan, located about 50 miles west of Detroit. The community is diverse, with a median age of 33 and a median income of about $61,000. The population is 74 percent white, 12 percent African American, 8 percent Asian, and 6 percent of another race or multiple races. Despite the county’s health status, community leaders formed the WHI because they recognized the need to improve access to coordinated care for the county’s low-income, uninsured, and Medicaid populations. The WHI’s ACP project is designed to further and expand that mission by improving and increasing ACP conversations among all residents in Washtenaw County.
Over the course of four months, we conducted focus groups and interviews with more than 80 community residents and physicians to understand the experiences and challenges associated with ACP. Among our community residents, we focused on four sub-populations with particular challenges related to advance care planning: African Americans, veterans, residents living in rural areas, and participants in Program for All-Inclusive Care for the Elderly (PACE). Our physician population included both inpatient and outpatient physicians of various specialties.
As detailed in the white paper, this process revealed the following themes in the community’s attitudes about ACP:

Reframing ACP

Community focus groups strongly associated ACP with dying, not with choices about care. Others reported that since their family knew their wishes, they did not see a need for documenting their wishes in an advance directive (AD); residents felt more comfortable with the idea of choosing who their patient advocate (or surrogate) would be than they did documenting specific treatment preferences. In the African American focus groups, many participants highlighted general medical mistrust as a major ACP barrier, presumably due to a legacy of racial injustice within the American health care system.

Starting The Conversation And Learning What To Say

Both community residents and physicians expressed discomfort and uncertainty about initiating ACP conversations. Residents felt overwhelmed by the idea of making future medical decisions and concerned that their preferences would not be honored. Some participants cited past personal or family experiences receiving treatment that did not align with their stated preferences. Physicians identified both lack of adequate time and emotional discomfort as major challenges to initiating conversations, particularly when the patient or patient’s family was not ready. Several physicians felt they did not have the necessary training to have ACP conversations.

Recording Wishes

We heard conflicting messages from community residents regarding how useful they felt it was to document ACP conversations. Some residents thought it would be difficult to put their wishes in writing and that documenting wishes could limit their treatment options. Others, particularly in the veterans’ focus group, expressed that even with an AD, their preferences may not be honored, while rural community residents worried that their ADs would be not be accessible when needed. Physicians expressed concern about the utility of ADs and challenges associated with documenting patient preferences. Some found that even though ADs were a vehicle for ACP conversations, they were not useful clinically because the AD did not address specific conditions or circumstances a patient may experience.

Opportunities To Improve ACP In Michigan, And Nationally

As the WHI white paper details, there is still a disconnect between policy and practice, despite progress in creating a political and policy environment where it is easier to discuss and debate end-of-life issues. By engaging community members and physicians in a conversation, the WHI ACP project has learned what strategies are needed to improve and increase ACP conversations.
Despite some reluctance within both groups, many residents and physicians wanted to learn more about ACP and to improve these conversations. Community members and physicians identified several approaches to improving and increasing ACP, including finding ways to normalize the conversation, educating patients and training physicians about how to have ACP conversations, and improving health care processes to ensure patient preferences are known and respected. The specific recommendations from our white paper focus on these areas of opportunity to strengthen the understanding and acceptance of ACPs by physicians, patients, and their families.
As a next step, the WHI ACP project is now developing a conversation guide for both health providers and community leaders to raise awareness and educate patients and their loved ones about the principles and importance of ACP. While it is essential that medical education be enhanced to help physicians obtain a deeper understanding and comfort in communicating with patients with serious illness about ACP, there is much that can be done at the community level to enhance the use of ACP even without changes in physician education.
In addition to creating a conversation guide, the WHI ACP is creating more opportunities for community conversations about ACP. Through more community discussions, faith leadership, especially within the African American community, and clearer, more accessible, and more useful tools for families to use to express their wishes in the event of serious illness, we believe we can substantially increase the use of ACP and challenge pre-conceived notions when it comes to ACP to foster an environment that is more conducive to ACP conversations.
CMS also can play an important role in such community-level work by identifying new areas for improvement and data collection. Through the reimbursement system, CMS can disseminate information on what should be covered to be reimbursable as well as to gather more information about who is billing. Providing additional guidance does not necessarily have to be prescriptive but could establish some best practices on what meaningful ACP should look like for the purposes of reimbursement.
For example, many commentators familiar with ACP noted that the initial guidance for reimbursement needed to be modified to reflect the challenging situations that physicians may face: for example, a requirement for a face-to-face encounter with the patient would not be effective in situations where the patient lacks decision-making capacity and the physician needs to speak with a patient’s family.
While we have made strides to promote ACP in the clinical setting, there is still a disconnect between policy and practice. Paying physicians for ACP is not enough to create the clinical setting and social circumstances in which initiating an ACP conversation is the norm. Promoting the conversation with the patient advocate is the most important part of this process, but that has been often lost in the legal and clinical focus that too often accompanies ACP.

Authors’ Note

The Center for Healthcare Research and Transformation (CHRT) at the University of Michigan receives funding from both the University of Michigan Health System and Blue Cross Blue Shield of Michigan.