A Tale of Twin Cities

Setting off a national movement to improve end of life care

By Elizabeth Sidney

Minnesota’s adaptation of Respecting Choices shows how the advance care planning model can work on a large scale. Launched by the Twin Cities Medical Society in 2008, the initiative set off a national wave, with states seeking to replicate the medical society’s success. The TCMS represents the seven-county Minneapolis-St. Paul region, but the Honoring Choices initiative includes all of Minnesota.

“Everybody has heard about or dealt with a good death or a bad death,” Sue Schettle, CEO of the medical society, says when describing the impetus for the grassroots initiative. “All the health systems we talked with knew we could do end-of-life care better if we agreed to collaborate on a model,” she says. ”The competitive nature of health systems can be put aside.”

With that resolve, TCMS, working through its foundation, took on the role of convener, coordinator and catalyst. From hosting of exploratory meetings with community groups, hospitals and health plans, to the adoption of basic ground rules, and setting shared goals, TCMS built a collaborative structure. The framework assists organizations with the implementation of a comprehensive advance care planning program.

The guiding concept is simple. “Advance care planning is “a conversation between family members about what one’s beliefs and values are,” Kent Wilson, MD, medical director of Honoring Choices Minnesota, explains. Participating health organizations agree to:

1) begin a conversation with patients about advance care planning;
2) provide access to planning facilitators;
3) make sure that plans are clear;
4) keep copies on file; and
5) follow plan instructions when the time comes.

Honoring Choices has its own specific governance, health care directive, and patient education materials, using the training, principles and overall methodology of Respecting Choices. With a solid foundation in place, TCMS trained health care leaders, who in turn prepared their organizations to launch pilot sites. The pilots targeted specific patient populations and identified individuals to be trained as facilitators and instructors. The programs reported their findings, helping to refine training. Hospital-based pilots opened at a rate of six a year.

By 2013, almost all Twin Cities’ health systems had begun to incorporate the Respecting Choices model, and movement throughout the state was well underway. Honoring Choices so far has partnered with 21 hospitals representing all six of the major health care systems in the metro area. The initiative has since teamed with public television.

Multi-pronged Outreach

Grassroots engagement goes beyond traditional health care. A pilot, Graceful Journey, is making waves in the faith community, asking congregations to think about end-of-life planning. Honoring Choices and the Minnesota Council of Churches launched this effort. Schettle says that Honoring Choices works diligently to connect with multicultural organizations and diverse communities. Individuals from these groups tend to have complicated reactions to the health care system, she notes. The initiative provides culturally sensitive education.

Seeking more inroads, Honoring Choices partners with physician-led free clinics and non-profits that serve the homeless. The initiative has moved into higher education, teaming with medical schools as well as schools of nursing and bioethics departments, to train faculty and students. The Minnesota Department of Corrections invited Honoring Choices to bring the program to inmates, and there is interest among attorneys, estate planners, and funeral directors says Schettle.

At last count, 1,700 trained facilitators were at work in Minnesota health care systems and community organizations. Roughly 35% of residents in the state report having an advance directive; the national average is 30%. Both a long form directive and short version are available free of charge.Partners also coordinate their efforts with POLST. Governor Mark Dayton proclaimed Wednesday, April 16, 2014, as Healthcare Decisions Day in the state of Minnesota. Though doctors still need to raise the importance of advance care planning, taking a few minutes during the annual exam or when there’s a change in health status, they can refer their patients to facilitators for in-depth conversations.

Measuring Outcomes

For a variety of reasons, states want to replicate what Honoring Choices has done in Minnesota. Patients desire control over their end-of-life care; health systems increasingly are required to incorporate advance care planning into patient care; and policymakers hope to tame exploding health care costs.

While Respecting Choices has been shown to result in more advance care directives, it’s too early to assess outcomes for Honoring Choices. However, its leaders know that data is critical to the program’s ongoing success, so Minnesota is laying the groundwork to measure outcomes.

It could be decades before the full impact is known. But the wait doesn’t perturb Schettle. “We’re in it for the long haul,” she says. “The need isn’t going away, and neither is Honoring Choices.”