When Colorado health system executive Kevin Unger and his wife, Stacy, started estate planning in 2016, a nurse practitioner working in the system asked a pointed question: What about their future health care planning?
Unger, president and CEO of UCHealth’s Northern Region, Poudre Valley Hospital and Medical Center of the Rockies, admitted they hadn’t done it.
“We all have busy lives, and we tend to put it on the back burner,” said Unger. The question from the nurse Peggy Budai, RN, was a wake-up call. The Ungers not only got busy crafting their advance care plans but they inspired legions of others in their Fort Collins community to follow suit.
“We realized,” as a couple and as a community, “this was a conversation we needed to have,” Unger said.
More U.S hospitals, including in Texas, are reaching the same conclusion as they seek to change the culture around end-of-life conversations. Their goal is for advance care planning to start earlier — in a calm setting and not during a health crisis, when emotions can run high.
Hospitals are working with traditional — and not so traditional — partners to move the conversation out into the community. The intent is to get people to discuss their health care wishes with primary care physicians and family members and to document those decisions in their medical records.
Successful hospitals typically have a passionate champion for advance care planning. The Ungers demonstrated the power of leading by example.
With the help of Budai, who specializes in geriatric and palliative care, the couple decided on the kind of care they wanted — and didn’t want.
The couple’s willingness to speak out on what can be a difficult subject was a culture-changer, Budai said. Many hospital workers and community members wrote down their treatment wishes, not just for the end of life but also in case of chronic illness, a serious accident or other life-changing event.
Regardless of their health status, less than a third of adults have an advance directive, an official document articulating treatment wishes and designating a representative to speak for them in case of incapacitation. Even fewer have had “the conversation” with loved ones.
Although national data show Texas is behind most other states in advance care planning, the climate is changing. A big incentive came in 2016, when Medicare and other insurers began reimbursing doctors and hospitals for discussing advance care planning with patients: Do they want a breathing tube, CPR and other life-extending measures? What about chemotherapy if it adds only a few weeks of life?
To date, the palliative care team at Poudre Valley Hospital and Medical Center of the Rockies has helped more than 3,000 community members complete an advance directive and get it incorporated into their medical records, Budai said.
The effort was informed by a national initiative called the Conversation Project, founded by journalist Ellen Goodman. UCHealth teamed up with the Public Health District of Northern Larimer County and included local representatives in primary care, long-term care facilities, disease support groups, the Larimer County Office on Aging, community nonprofits, a seniors group affiliated with the UCHealth and others.
The Conversation Project provides a starter kit to help families discuss individual preferences for care, and the UCHealth team shared it with community groups. “We had all of the volunteers use the starter kit to do their own planning before we had them speak to others about documenting their wishes,” Budai said.
Other hospitals model their work on the Respecting Choices program, created about 25 years ago in La Crosse, Wisconsin, a community of 118,000 where 96 percent of adults have an advance directive.
Amy Stang, RN, faculty director of advance care planning at St. Luke’s Health System in Boise, Idaho, said St. Luke’s collaborates with a competing hospital system and a major health insurance company on Respecting Choices.
Founded by La Crosse-based clinical ethicist Bud Hammes, Respecting Choices provides a curriculum for training health care workers on how to guide conversations with patients and families on wishes for care. For patients expected to live less than a year, Respecting Choices follows a national model, the POLST Paradigm.
POLST, or Physician Orders for Life-Sustaining Treatment, uses the patient’s current medical condition to specify treatments, such as CPR, for care given by emergency workers, nursing homes and others.
Respecting Choices certifies medical professionals and volunteer facilitators who successfully complete its educational requirements.
Working with the competing hospital in Boise was important because “most people go back and forth between the hospitals,” Stang said. “We needed standardized messaging. …we’ve provided over 1,500 conversations from September 2016 to May 2018.”
For some hospitals, moving the discussion to communities not only has led to partnerships but also to grants to sustain advance care planning efforts.
Sandy Severson, vice president of care improvement at the Arizona Hospital and Healthcare Association in Phoenix, said the organization’s board was concerned about repeated emergency room visits during patients’ last six months of life.
“We started doing public speaking … and the more we spoke, the more we were asked to speak,” Severson said. “That’s what got us our funding.”
The David and Lura Lovell Foundation provided $2.5 million for advance care planning, and the Community Foundation for Southern Arizona kicked in another $500,000.
The health association, in turn, reached out broadly, including to such nontraditional partners as community colleges.
“Students are signing advance directives,” Severson said. “They take extra documents home for their parents, siblings, anyone over the age of 18. We’re really working to normalize the conversation around dying.”
Camille Collett, M.D., a family medicine physician in Salt Lake City, Utah, said partnerships are vital because people need to be in a comfortable setting for such conversations to occur. While getting a master’s in public health, she studied barriers in hospitals to advance care planning and found “it wasn’t a user-friendly environment.” Busy physicians were pressed for time; most staff were untrained.
She is now in the early stages of a collaboration with the city’s public libraries to help them host advance care planning sessions with local citizens. Libraries provide a neutral turf and “are pretty nonthreatening,” Collett said. She will speak at libraries this fall and help community members complete advance directives, with librarians acting as legally required signature witnesses.
In many communities, churches are key partners.
At the Henry Ford Health System in Detroit, Michigan, 40 community nurses work to improve the health of their congregations, said Jim Kraft, the system’s director of advance care planning. As trusted members of the church, “our goal is that (these nurses) will be the spiritual bridge to the hospital,” Kraft said.
“I want to impact the way people of faith experience chronic illness. I want them to finish the race well,” he said. “It’s all of our goal to relieve suffering, and we know early and often communication is one of the best ways to avoid unnecessary suffering.”
At Atrium Health in Charlotte, North Carolina, Michelle Kirby, RN, the program manager for Your Care – Your Choice, said nurses working with faith communities perform a similar role. Atrium offers training in advance care planning to all interested staff, from nursing to housekeeping, she said.
It started with outreach to primary care physicians. “They know their patients,” she said. But Atrium also believes anyone can get the conversation started. Kirby’s team has reached out to libraries and community organizations as well.
Changing the culture is slow-going, she said, but the good news is, “Ten years ago, these conversations were not being had.
Texas Hospitals Make Headway
What an advance care planning program is called can make a difference in how it is received.
At the 153-bed Guadalupe Regional Medical Center in Seguin, the palliative care program – home to most advance care planning programs – is now called LIFE Care. Ten volunteers help patients devise care plans, have conversations with families and get the plans documented in medical records, said Liliana De La Torre, a chaplain and director of advance care planning.
The hospital’s efforts were launched by Charles Nolan, M.D., a palliative care specialist who came to Guadalupe Regional about four years ago, De La Torre said.
The program offers regular opportunities for employees to complete directives at the hospital, which helps give staff the position and perception that a patient might have. “Many times, they struggle with it,” De La Torre said, but “you have a better insight when you put yourself in the shoes of the patient.”
The LIFE Care team meets with pastors and their congregations; civic organizations; and places where seniors gather. The goal is to get everyone in the community, 18 and older, to have the conversation and make their wishes known, she said.
Even people who come in for outpatient testing get an information card, in English or Spanish, about advance care planning, De La Torre said. If the person wants to learn more, they get free, unbiased help filling out an advance directive.
“There is a lot of hunger for getting to know more,” De La Torre said.
Guadalupe Regional even created its own documents, including one for healthy adults and another for those with life-limiting illness or advanced age. Documents are very specific and spelled out in non-clinical plain language. CPR, for example, is described as a “tube in the windpipe, electrical shocks to the chest, chest compression and IV tubes for fluids/medications.”
“We want the documentation to reflect their values and their beliefs and honor what brings meaning to their life,” De La Torre said.
At Memorial Hermann Health System in Houston, the palliative care program is growing and also has been renamed — to ‘supportive medicine,’ said Sandra Gomez, M.D., system medical director of supportive medicine.
“In the Houston market, we found that ‘palliative care’ meant end of life and hospice,” she said.
All adults coming into the Memorial Hermann system for whom a supportive medicine consult is requested, regardless of health status, are screened to assess what’s important to them when receiving care and whether they have an advance directive, Gomez said.
“We have a tool we are in the process of improving … to track every time there’s a conversation,” she added.
Nursing leaders embraced the notion that the hospital’s role is to support the patient holistically — physically, mentally, spiritually and emotionally, she said. The hospital culture changed “once we empowered the nurses to be champions.”
Nurses know the patients and their families best and can act as their voice, said Jennifer Cox, RN, supportive medicine clinical manager at Memorial Hermann. “When you spend 12 hours a day, three days in a row with the family, it’s a trust, and then you can educate the families.”
At the MD Anderson Cancer Center in Houston, all staff providing direct care are trained to have the conversation with patients, said Christine Durlam, senior social work counselor at the hospital.
The goal is for all patients to have had a chance to make their wishes known by their third visit, she said. They’re also informed they can change an advance directive any time.
“When a patient’s prognosis changes, we continue the conversation,” Durlam said.
As she and others stressed, getting the conversation going and sustaining it changes the culture.