Responding when Patients Decide to Be Heard: A Comprehensive, Community-Based Approach to Advance Care Planning

Premier Nursing News     March 2018

By Abi Katz, DO, Medical Director of Premier Health Advanced Illness Management

Our medical director spent the evening with a retired philosophy professor and his wife discussing his advanced directives, and they wanted to know whether he needed to have a DNR. He said, “For several years, I have been trying to think about my death in a rational manner. I want to accept my aging and my death without prolonging things.” His biggest fear was that “even comfort care would be an opportunity for dying to take longer than it should.” At 89 years old and married for 65 years, he is looking forward to his 90th birthday party. He also has late stage Parkinson’s disease and peripheral vascular disease, and has recently had several hospitalizations due to frequent falls. They talked through what matters most to him; his fears; what “living well” means to him; what he would want to have happen in the case of a sudden change in his condition (for example, if he didn’t know who he was or who he was with); and how he would like his wife to make decisions for him. He was clear and articulate, and he and his wife both learned some important values and goals. After the conversation, his wife voiced that she felt more confident in approaching future decisions she may need to make.

We share this story to advocate for a cultural shift in our approach regarding advance care planning. That is why Premier Health is partnering with other providers and agencies in the Dayton area on “Decide to Be Heard,” a regional model based on “Respecting Choices,” an internationally recognized, evidence-based model of advance care planning. Created in 1993 by Gunderson Health System in LaCrosse, Wisconsin, “Respecting Choices” has been adopted by more than 100 cities around the world. It takes a community-based approach, providing trained facilitators to help people engage in productive conversations with their health care agents and loved ones and complete advance care directives. In LaCrosse, 80 percent of residents have participated in “Respecting Choices” and have established advance care directives accessible to medical providers.

Second phase pilot testing begins

Our local partners include Kettering Health Network, Ohio’s Hospice, University of Dayton, and Wright State University, as well as the Greater Dayton Area Hospital Association, which is providing coordination and extensive administrative support. Pilot testing involves developing educational tools, refining workflow and operational processes to manage change at each pilot site, inviting a target population to participate in a conversation, and training facilitators to have a structured conversation about advance care planning. We have trained 26 facilitators so far, including physicians, nurses, social workers, chaplains, and volunteers.

The “Respecting Choices” model helps us begin conversations about a person’s goals for care and wishes while they are still healthy, thereby moving the conversation upstream and making it part of the continuum of care. Our comprehensive approach helps people complete advance directives that are inclusive of personal values and beliefs, and communicate their wishes with their family members, loved ones, and health care providers.

Last summer, Premier Health Partners and Kettering Health Network began a six-month-long pilot study with eight different sites that were willing to provide access to trained facilitators and make advance care planning conversations available at their locations. At Premier Health, this includes a test with Premier’s Health’s Healthy Living program for employee wellness; patients who are not yet on dialysis receiving treatment at Miami Valley Hospital’s renal unit; and patients who receive a social work order for Fidelity Health Care’s home health services. Each conversation takes about one hour, and participants are encouraged to bring a loved one if desired.

The conversation described above followed our local model with “Decide to be Heard.” It provided the patient with an opportunity to express his most precious values and beliefs while teaching the future health care agent the skills she will need to make many potential decisions, and allowed for completion of the legal documentation needed for the health care team to respond.

Be part of it

Creating partnerships with community leaders and organizations is essential to the success of “Decide to be Heard.” You can help! If you are part of a professional group, church, or other community organization and willing to present information about advance care planning, or have an interest in being a future pilot site, please let us know. Together, we can help people in our community understand the benefit of advance care planning for them and for those who might one day need to speak for them when they are no longer able to speak for themselves.

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