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Advance care planning education can provide patients and their families with valuable information for making decisions about patients’ care at times of health crisis, or end of life.
Case managers might ask themselves, “If you had three months to live, what would you give yourself permission to do?”
It’s an uncomfortable question and topic to ponder, but it’s a situation that many at-risk patients face — whether they know it or not. And it’s a way to introduce the concept of advance care planning.
Nationally, only about 30% of people have sought advance care planning, says Jackie Dinterman, MA, LBSW, ACM, manager of care management for Frederick Regional Health System in Frederick, MD.
The health system developed advance care planning education for patients and their families, for healthcare providers, and for the Frederick community.
The program was started after a health system leader attended a conference and heard about a Wisconsin initiative in which 96% of patients at the time of their death had advance directives, Dinterman says.
“Our CEO was interested in how they do that and what the response has been,” she explains. “We learned that they had trained professional facilitators who would take the time involved to sit down and talk with patients about their goals of care.”
From Frederick Regional Health System’s perspective, this is a conversation that needs to take place before a frail or at-risk adult is admitted to the hospital — before they are in a critical and stressful situation.
Two years ago, Dinterman began to look at what they could do in the community to provide advance care planning education so medical terms and forms would be understood prior to admission.
The first step was to form a multidisciplinary advance care planning committee, including community partners, to discuss how to move advance care planning education out into the community.
The advance care planning initiative working group consisted of Dinterman as chair, and 21 additional members.
The committee’s main goal was to provide education and awareness to Frederick County residents about communicating their preferences for end-of-life care. Another goal was to improve the understanding of palliative vs. hospice care. (See table with definition of advance directives in this issue.)
“We were looking at our high skilled nursing facility [SNF] readmission rates and discussing with them what we could do to help,” Dinterman says. “The nursing facilities felt that if a thorough discussion was held with the patient and family about advance care planning, palliative care, or hospice prior to admission to the nursing home, then there would be less of a chance for readmission to the hospital.”
The advance care planning work group decided to provide community education through outreach to nursing homes, assisted living centers, and independent living locations, as well as through community events, civic organizations, and the media.
After the committee researched national programs and free advance care planning resources, Dinterman created a community education, titled, “Advance Care Planning: Igniting ‘The Conversation’ in our Hospital and our Community.”
They have also met with the hospital’s community partners, including monthly meetings with nursing homes and assisted living facilities, where advance care planning was sometimes discussed.
These round table discussions at skilled nursing facilities and assisted living homes include talk of different issues, including readmissions rates and how to reduce them.
“We’ve provided over 85 to 90 presentations in two years, and we’ve all worked together to develop a comprehensive, successful program,” Dinterman says.
One of the best resources that has helped with their success is the Conversation Project, which provides free resources for community education and information on how to start a conversation about advance care planning, including asking questions such as, “What matters to me at the end of life is…”
The following are some other questions to jump-start the advance care planning discussion:
“We try to keep all of our presentations on a positive note,” Dinterman says. “I see a lot of literature where people do Death Cafés and things with nuances and titles that we didn’t think would work well in our community, so we tried to look at how we were sharing the message and how to get people involved.”
The outreach appears to be working. Nursing facility staff has offered positive feedback, as well as constructive suggestions. “They said we were not having the advance directives conversations at the hospital, and so when they started the conversation [at the nursing home], they were starting from scratch,” Dinterman says.
“So we did a pilot with a social worker who sat down with every patient who was going to a skilled nursing facility to make sure they understood advance directives and the MOLST [Medical Orders for Life-Sustaining Treatment] form, and who completed advance directives or the MOLST if they wanted to,” she explains. “When patients were made aware of their options and understood palliative care or hospice care more fully, they made different choices about the treatment they received and whether to return to the hospital for care.”
As a result, they saw an increase in patient satisfaction surrounding their choices, and a reduction in the readmission rate with this population of patients, she adds.
The health system’s senior leadership has now supported a full-time social worker position to provide those conversations, she adds.
“For example, a heart failure patient who comes from the nursing home would have a conversation here about advance care planning with the social worker, and then the physician,” Dinterman says. “Maybe they won’t complete the paperwork here, but then they’ll hear the same information again in the nursing home and feel a sense of comfort that they’re hearing it in both settings.”
Discussing advance care planning issues helps patients engage with care planning sooner than they would without the conversations.
The pilot project showed an increase in advance directives discussions from 1% upon admission to the health system in April 2015 to 75% among nursing facility discharges by the time the pilot ended six months later, Dinterman says.
The readmission rate for SNF patients who were not educated on advance directives was 21%, and it was 12.5% for patients who had advance directives, she says.
“We also saw an increase to 43 days for patients’ days in hospice among the advance directives group,” Dinterman says. “For those without an advance directive, the average days in hospice care was 14 days — so they didn’t receive a lot of benefits that you can get from the hospice program.”
Also, the advance directive cohort had a decline in healthcare encounters and a drop in total costs of 66%, Dinterman says.
“So in the pilot, those patients transferring to a nursing facility, who had an advance directive, had less encounters and less healthcare charges,” she adds.
The educational program includes advance directive packets of information distributed to people and used at meetings. Educators answer all questions and help people complete an advance directive, if they desire. They also scan, using a mobile scanner, the advance directive into the hospital medical record, as appropriate, Dinterman says.
“At our last community event, we found that a lot of people had questions for attorneys, so we now have an attorney on our advance directives committee,” she says. “And we’ve found an attorney group in Frederick County that does a pro bono law day with information for the community, and advance care planning is one thing they cover, so we have collaborated with them.”
The educational events always end with a personal family testimonial or story, and that’s often the attendees’ favorite part, Dinterman notes.