- Sue Norton
Mary Beebe confronted her mortality about three years ago, when her primary care physician handed her an advance directive form during a regular visit. It asked her to specify which life-extending treatments she would accept or refuse in a situation in which she could no longer speak for herself.
"They were things that were very hard to decide at the moment," recalled Beebe, now 71. "I never filled it out."
Yet Beebe knew she didn't want her family to experience what she had 30 years earlier, after her mother's stroke. Without an advance directive, there were "no discussions," she recalled. "We came in one day, and they had stuck a feeding tube down her throat, and that was something she was always adamant about" not receiving.
Last February, Beebe attended an information session on advance care planning at the Winooski Senior Center, where she's a volunteer. She came out of the discussion, which was co-led by Cindy Bruzzese, executive director of the Vermont Ethics Network, feeling more prepared to think about end-of-life care.
Beebe's takeaway was that she didn't have to make difficult decisions all at once. "You can go in steps," said the Essex resident. Her first step was to appoint her niece to be her health care agent, someone she trusts to advocate for her if she's unable to do so herself during a medical crisis.
Patient self-determination is one of the underpinnings of advance care planning, said Bruzzese, as she presents it in information sessions like the one in Winooski. "This is about living well and understanding your goals and values," she explained, "and making sure that others know what's important to you."
The presentation was part of a new initiative supported by the University of Vermont Medical Center's Community Health Investment Fund. Since July 2016, the Vermont Ethics Network and eight other partner organizations have been offering workshops, resources and tools for advance care planning to businesses and organizations. As of this January, the collective had given 26 presentations and reached about 600 people in Chittenden and Grand Isle counties.
A key objective of the collective is to encourage everyone 18 or older to take the first step in the advance care planning process by appointing a health care agent, also known as a health care proxy or power of attorney for health care.
Studies show that only about 30 percent of adults in the U.S. have advance directives. As of Tuesday, the Vermont Advance Directive Registry had recorded 33,046 registrants. That number may be low, however, because Vermonters with advance directives aren't required to send a copy to the registry.
In 2015, U.S. Congressman Peter Welch (D-Vt.) cosponsored the bipartisan Medicare Choices Empowerment and Protection Act, which would provide a small incentive for Medicare beneficiaries to complete advance directives. Welch said organizations across the political spectrum support the proposed bill and that "it could move quickly once the committee chair decides to put it out on the agenda."
People generally don't consider advance care planning urgent, said Bruzzese: "It's always too soon to talk about these things, until it's too late."
Rabbi Amy Small of Ohavi Zedek Synagogue in Burlington shares Bruzzese's observation. "It's very sad to be with a family when somebody is dying ... [and] the family is struggling ... because they often lack the tools in that moment to make the decisions they want to make," she said. Those decisions could involve considering the end of life from medical, legal and religious perspectives.
For some populations, advance care planning is a new and difficult concept to grasp. Until he started working in the health care field four years ago, Basu Dhakal said, he wasn't aware of it. In his Bhutanese culture, family members generally don't tell ailing loved ones their true diagnosis, fearing it might worsen their condition, explained Dhakal, who is a registered nurse and the president of Vermont Hindu Temple. His work has motivated him and his family members to appoint health care agents, he noted.
Educating Vermonters on such topics is the goal to which the nine-organization collective, with Vermont Ethics Network as its backbone, has devoted itself. One of its key strategies is a stepwise approach that Bruzzese developed and articulated in brochures, using funds from private donors, before the collective formed in 2016.
That approach, as Beebe observed, involves taking advance care planning in manageable stages. A healthy 20-year-old may not know how to approach a decision about resuscitation but can easily appoint a health care agent, Bruzzese explained. On the other end of the spectrum, someone who has a chronic or advanced disease may want to document end-of-life goals.
Another key objective of the collective is to market its initiative to local business leaders and human resource managers as a wellness program. It promotes its educational presentation as an annual lunch-and-learn offering. Since companies undertake yearly benefit renewals and discuss life insurance policies, it makes sense for them to support their employees in planning future medical decisions, said Bruzzese.
Advance care planning advocates cite three of the most famous cases in medical ethics, dating back to the 1970s, to emphasize the conflicts that can arise when a patient has no directive. Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo were in their twenties when they suffered severe neurological injuries. Their medical cases played out in the public arena when family members, doctors and government entities disagreed on whether and how to extend their lives.
Vermont doesn't legislate a particular hierarchy of end-of-life decision makers. "As an ethicist, I would argue that it's really good that we don't," said Sally Bliss. She's a clinical ethicist at UVM Medical Center, which is a member of the collective. "A legal relationship alone doesn't create a good medical decision."
When a patient lacks an advance directive, the clinical team will talk to as many people as possible to determine who knows the patient best, Bliss continued. The process "takes time," she acknowledged, "but if you don't have a health care agent, we're responsible to find the best decisions."
Typically, Bliss is called in to help clinicians, health care agents and families discuss a patient's medical condition and see how the advance directive fits into the situation. "In almost 10 years of being a clinical ethicist, I've seen documents perfectly fit a situation three times," she said.
Given the difficulty of predicting future medical problems, Bliss said, health care agents play a crucial role. Having talked with the patient about their wishes, they can give the clinical team interpretation and context.
For communities that value collective decision making, such as the Bhutanese, appointing one individual to be the health care agent may not be enough to "provide peace of mind," suggested Khara Neopaney. He works for another member of the collective, Age Well, an Essex Junction-based nonprofit that provides support services to aging Vermonters in Addison, Chittenden, Franklin and Grand Isle counties. "We keep explaining the importance of advance directives," he continued, "[but] they're not ready to fill out a form."
While advance care planning advocates create a groundswell of passion in the population, health care providers should also work toward establishing a system of recording advance directives so that they can access and follow patients' instructions, said Bruzzese.
In March, the New York Times published a "Well" column by physician Daniela Lamas that detailed how her emergency room colleagues nearly intubated a dying patient against his wishes. His outpatient oncologist hadn't given him an advance directive form to document his end-of-life wishes, and notes from their conversation were buried in the patient's electronic record.
"I don't know if we'll ever have a perfect system," acknowledged Bruzzese. But she hopes system improvements will combine with increased education and awareness to make such mistakes less frequent. Younger medical students and residents have been trained to ask about advance directives, Bruzzese added.
Bruzzese also noted that an increasing number of health care providers are applying to become authorized users of the Vermont Advance Directive Registry, which allows them to look up their patients' directives and have them in their electronic medical records.
On the public education end, too, the collective's initiative might be having some success. The Vermont Ethics Network reported that, as of June 2017, it had seen a 65 percent increase in submissions to the Vermont Advance Directive Registry from Chittenden and Grand Isle counties compared to the figure recorded from July 2013 to June 2014. While she's careful not to assume a direct causal relationship, Bruzzese said the bump does indicate the "influence" and "ripple effect" of general community conversations.
Changing the culture around advance care planning is a long-term project, even though current funding for the collective runs out in mid-2019, said Bruzzese. But she's seeing encouraging reactions, even from the demographic most likely to shove thoughts of mortality aside, she said: "People are seeing that this is important for them even if they are college-age people."