Talking about death is never easy. But it’s especially difficult in a hospital when a loved one is incapacitated and family members are trying to guess their wishes. Two healthcare workers in Anchorage want to convince Alaskans to have that conversation before a crisis and sign an advance health care directive.
I had known Gigi Rygh for all of about 20 minutes when she brought up the subject of advance directives. To be fair, I was interviewing her for a related story. Rygh found a way to casually fold it into the conversation. She had also hit on the topic with her coworkers earlier that day.
“This morning I said in my office, ‘okay so you guys, this is my mission, do you have your advanced directives? If I want 100 percent of the people I’m seeing to have them; my coworkers should have them,'” she says. “And 75 percent did not.”
Rygh is a medical social worker at Alaska Innovative Medicine. The new group helps patients with complex problems navigate the medical system to improve their care. Rygh counsels patients in their homes to help them stay on track meeting their healthcare goals. And she always tries to bring up the topic of advance directives with patients and their families.
“They’re kinda thrown off by that, like ‘wait a minute, that’s just for my dad,’ or, ‘that’s for my husband,'” she says. “I really believe everybody needs a healthcare agent that knows what they want.”
Before Alaska Innovative Medicine, Rygh was a social worker at Alaska Regional Hospital. In that job, she saw too many patients in medical crisis unable to speak for themselves. Rygh says family members often didn’t know what the patient wanted, or disagreed about their wishes.
“And their voice wasn’t at the table when the family was talking to the doctors. And that makes me sad,” she says. “The person that is being talked about should have a way to be be at that table whether they’re physically present or not.”
An advanced directive puts you at the table. It’s a legal document that spells out what type of lifesaving measures you want doctors to take if you’re in a coma, suffer severe brain damage or are close to death and not expected to recover. Advance directives also ask you to appoint a health care agent, someone who knows your wishes and will speak on your behalf if you can’t.
Kris Green is the Advanced Care Planning Coordinator at Providence Health Services in Anchorage. She has a two year grant to try to convince more Alaskans to sign advance directives.
“My job is to get the word out, to educate the general public that these forms exist, and how to have that conversation. Because this is tough stuff, people don’t want to talk about death and dying – they don’t,” she says. “And yet, it’s critically important because it can happen on a nanosecond.”
Green knows from experience. Ten years ago, her husband, Michael Shibe was working to set up a large dining tent at a Boy Scout jamboree in Virginia. As Shibe helped guide the tent’s center pole into place, he was electrocuted along with three other scout leaders. Shibe was 49 years old. He and Green had signed advance directives earlier that year when they were drawing up their wills. Shibe died instantly, but because they had had the conversation, Green knew her husband wouldn’t have wanted heroic lifesaving measures. She also knew what kind of funeral arrangements to make.
“This plan in place is a gift to family members, because the most important or difficult piece of all this is families are struggling when there is an accident and people haven’t had those conversations,” she says. “(They’re) left with bad feelings and just horror at having to make a decision at a very difficult time.”
The state of Alaska recognizes two types of advanced directives. One is a formal looking legal document provided by Alaska Legal Services. Green says for people new to the conversation, a form called ‘Five Wishes‘ is an easier place to start. Green also recommends getting advice from an expert. She’s developing workshops to provide that advice and is recruiting volunteers to help.
In the end, Green and Gigi Rygh, at AIM, don’t care which document Alaskans use, as long as they tell their loved ones their preferences and identify a health care agent. The last essential step: signing the advance directive.
Rygh doesn’t let me leave our interview without asking me if I have an advance directive. I sheepishly answer no. She runs into her office, grabs the forms and tells me she will personally notarize them when I’m ready.
This story is part of a reporting project with APRN, NPR and Kaiser Health News.