Sue Schettle has spent the past three years coordinating an ambitious campaign to help Minnesotans make better end-of-life medical choices. As CEO of the Twin Cities Medical Society, she's seen how often big decisions go wrong at difficult moments.
Then she found out that her sister, who almost died from complications of emphysema 18 months ago, had made a big decision of her own: She had designated Schettle to be her "health care agent" to decide on proper care in case she is unable to speak for herself.
"This is very different from talking with other people about the benefits of planning for the end of life," said Schettle, 47, as she visited her sister, Pam Lyons. "This is real, and it's personal."
It's also a sign of how Honoring Choices Minnesota, an effort of the Medical Society and its foundation to encourage such discussions, is taking hold across the Twin Cities and beyond.
The campaign has enlisted doctors, hospitals, insurers and thousands of patients in the Twin Cities, with fingers stretching to outstate Minnesota and into Wisconsin. Now community and faith groups are joining the effort, and the project has generated a five-part public television series broadcast more than 70 times.
About 90 professionals leading the effort will gather Thursday in Minneapolis for an annual meeting to gauge where they are and what remains to be done.
Honoring Choices is based on a program begun 20 years ago in La Crosse, Wis. Health professionals there had grown alarmed at the stress on families when some dying patients were given intensive care that merely extended the dying process -- and sometimes put them in agony.
Studies have found that most people enter their final days without instructions to guide their care. For millions of Americans, that results in unwanted tests, drug treatments and even operations at a time when they are too sick to ask doctors to stop.
The new approach goes deeper than earlier strategies, such as living wills or more generic advance-care directives, and encourages discussions about death and dying. Trained facilitators help healthy patients and families discuss the level of intervention they might want in case of an accident, for instance. But for the sick and frail patients, they help zero in on specific care choices they may soon face.
In a metro area of 2.5 million people who come from many cultures and speak many languages, the Minnesota program is believed the most ambitious and sophisticated project of its kind in the nation.
"It was always going to be a major project, but it's become a rather amazing community engagement strategy, a grass-roots effort," Schettle said. "Groups, cities, even other states hear about it and they start looking for ways to participate or build their own systems."
'At first, I was scared'
Although she had been sick with emphysema for several years, Lyons, 59, had never thought about filling out an advance directive until she was hospitalized in December 2010.
"With pneumonia on top of my emphysema, I almost died. They had to put in a breathing tube," said Lyons, who lives in Maplewood and who has three grown children.
When a hospital social worker asked whether she wanted to consider an Honoring Choices health care directive, Lyons declined. "At first, I was scared. It was like she was asking me how I wanted to die, and I did not want to think about it," Lyons said.
But a few days later she called the social worker -- among the 500 people in the Twin Cities trained to help with such discussions -- and started to work.
The two sisters have talked several times about how Lyons wants care to keep her comfortable -- but not extend her life if she is dying. Each time they go deeper.
"Now it's much easier to talk about these things, to joke about them even,'' Lyons said. "Like how I want all Elvis music at my funeral -- except that's no joke."
"When you can say these things out loud, you realize how important it is," said Lyons, who uses a walker and oxygen.
"I've got a really serious condition, and I don't know when I'll die. But I want to make sure my kids or the doctors don't have to guess what care I want."
Warren Wolfe 612-673-7253