Death can be a conversation-killer.
But while discussing and planning for health care at the end of one’s life or in preparation for a possible accident can help loved ones, very few people plan for end-of-life care in the event they cannot make their own medical decisions, leaving health care providers the daunting task of finding family members or close friends to make those decisions.
Honoring Choices, an initiative of the Washington State Hospital Association and the Washington State Medical Association, is working to change this statewide, in tandem with health care organizations and other community partners.
The work largely involves providing curriculum and training to health care providers and volunteers who can host trainings on end-of-life care and on how to fill out documents to direct that care. But those behind the initiative say they are also just trying to get people to think and talk about the end of their lives.
“Any conversation is a valuable conversation,” said Mary Catlin, senior director at Honoring Choices.
Honoring Choices is looking for more community partners in the Spokane area, beyond health care organizations, to help raise awareness about end-of-life directives.
Advance care directives are documents that come in various forms that designate a specific person as a medical decision-maker as well as preferences for end-of-life care in the event a person cannot give verbal consent or make a decision for themselves.
In Washington state, these documents have to be notarized or signed by two witnesses.
This year, Honoring Choices partnered with a research group from the University of California San Francisco to implement an online advance-care directive program called PREPARE. The program offers easy-to-understand forms, which demystify language that can sometimes be bogged down with legal terms, in both English and Spanish.
“It helps us to reach diverse and underserved populations in a way we haven’t been able to with our current form,” Catlin said.
To direct care at the end of life, a person can use any number of forms available from health care providers or groups like Honoring Choices. Ideally, that form should be in a person’s electronic health record, so providers can access it if and when necessary.
WSHA and other health care providers, including Providence, are in favor of the Legislature sponsoring a registry for these advance care directive forms, so a person’s final wishes can be known and followed, regardless of what medical facility or system they are in.
“If we had a state registry, if I were traveling in Seattle or someplace else, it would be more seamless to find those documents,” said Kellie Durgan, an advance care planning manager at Providence.
Durgan has helped train facilitators that host free classes at Providence primary care clinics throughout Spokane.
Previously, only spouses, parents, children or siblings could be designated to direct a person’s end-of-life care. This meant health care providers would sometimes have to go to court to get guardians named for end-of-life care, a process that could take weeks or months, Durgan said.
That list was extended in Washington state law last year to include grandchildren, nieces and nephews, as well as an unrelated person in the absence of a relative, Durgan said.
Without a directive, the family members of a person who cannot communicate their medical wishes must all agree on a plan of care together, according to Washington state law.
As a nurse, Durgan has seen families struggle to make those difficult decisions.
“I saw so many people arguing, saying things that cannot be unsaid over the bed of their dying loved one, and I worried what will happen to this relationship when their mama is gone, because you can’t unsay the words you just said to one another,” Durgan said. “And there has to be a better way, and there is.”
Advance care directives can spell out a person’s preferred quality of life, comfort, where they would like to die and whether they would like an autopsy conducted, among other decisions. Medical providers always default to the most aggressive form of life-preserving care, but advance care directives can come into play once a person is out of the emergency department.
“I work with families and our palliative care team works with (families) who agonize every day because they don’t know what their loved one would want,” Durgan said. “It’s so hard, that is the burden, that not knowing is the burden, and it’s such a gift to families to hear their loved one’s voice and say this is what’s important to me and why, which provides that springboard for future decision-making.”
Ultimately, people like Durgan are fighting deeper cultural tendencies to avoid conversations about mortality and death.
“This conversation is not talking about how you want to die, it’s talking about how you want to live, so how do we reframe it so it’s something people want to talk about instead of something they want to avoid?” Durgan said.
So far at Providence, Durgan said the community conversations are helping because more patients have directives in their records each month. Overcoming cultural stigma around death, however, continues to be a challenge.
“We’re all going to die. We are mortal beings, so how do we normalize that conversation?” Durgan said.
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