By Tara Bannow • The Bulletin

End-of-life discussion

What: Ellen Goodman, founder of The Conversation Project, will discuss the importance of sharing end-of-life wishes with loved ones.

Time: 7 p.m.

Date: Thursday, May 14

Location: Tower Theatre, 835 NW Wall St., Bend

Cost: Free, but tickets required. Visit http://www.towertheatre.org/tickets-and-events/an-evening-with-ellen-goodman or call the box office at 541-317-0700.

Ellen Goodman thought she and her mother had talked about everything there was to talk about.

That is, until she was in her 60s and her mother in her 80s and dementia began to cloud her mother’s thoughts. That’s when Goodman realized there was a crucial conversation they hadn’t had. They hadn’t talked about how her mother wanted to be cared for when she was gravely ill.

“I was faced with a cascading number of decisions for which I was completely, totally unprepared, blindsided,” she said. “I didn’t realize that these decisions would fall to me.”

Inspired by her experience, Goodman, a Pulitzer Prize-winning columnist, left the news business in 2010 to help launch The Conversation Project with media colleagues, medical professionals and others. It’s an organization dedicated to spreading the word about the importance of people letting their loved ones know their wishes for end-of-life care. Goodman will talk about her work May 14 at the Tower Theatre in Bend.

The project’s website contains a downloadable “starter kit” that opens by asking users to rate on a five-point scale their feelings on subjects such as the amount of detail about their condition they would like to know and how much control they would prefer to have over medical decisions. Finally, it gets to straightforward questions about what kind of care people want at the end of their lives, such as whether they want to be put on a ventilator or whether they want a do-not-resuscitate order. The latter questions make up what’s called an advance directive, a legal document used by medical providers to make decisions for people who can’t make them in the moment.

So far, more than 250,000 people have downloaded the kit, although Goodman said the actual number who have used it is likely much higher.

Without a defined set of wishes telling them otherwise, medical professionals will continue to provide more services intended to prolong life when people are very ill, even if those services do not improve their quality of life, Goodman said.

“What happens generally is that you get into the health care system and you’re not asked, and the person you love ends up on a kind of trajectory, a protocol that’s set out without ever really thinking it through,” she said. “That happens a lot.”

That’s what would have happened to Goodman’s mother had Goodman not been there to stop it. For example, doctors wanted to perform a bone marrow test on her mother because her white blood cell count was low, which could be a sign of cancer or infection. At the time, she was 90 years old and ravaged by dementia, and chemotherapy would have been out of the question if it was cancer. Goodman told them to skip the test.

Some of this is because doctors aren’t very good at talking to their patients about death. Often, that conversation can sound like they’re giving up, or like they’ve failed at their job of keeping the patient alive. A study this month found 99.9 percent of doctors have trouble having end-of-life conversations with their patients, according to Stanford University researchers, who surveyed roughly 1,000 doctors.

St. Charles Health System is among about a dozen health care organizations that pioneered a nationwide campaign to develop better strategies for doctors to talk about end-of-life care with their patients. The Institute for Healthcare Improvement, a Massachusetts-based nonprofit that strives to improve health care delivery worldwide, launched the Conversation Ready campaign in 2012 to complement the Conversation Project.

Dr. Laura Mavity, St. Charles’ clinical director of advanced illness management and the one who leads the health system’s Conversation Ready efforts, said the work revolves around three Rs: reaching out, recording and respecting wishes. The first R refers to making sure doctors and other providers are reaching out to community members, and talking about the importance of end-of-life planning and the options that are available. Recording refers to the health system’s ability to document its patients’ wishes. To that end, St. Charles’ electronic health records platform, Paragon, has a spot that allows providers to scan in and easily locate patients’ advance directives.

Finally, St. Charles is working to make sure it can carry out patients’ end-of-life wishes. There have been many cases in which people had advance directives that weren’t used by health care providers, Mavity said. Sometimes advance directives are no longer valid if someone moves to another state, because different states require different information.

Oregon health care providers will recognize the advance directives of people visiting from other states. Once people become Oregon residents, however, they must fill out a specific legal document that aligns with the state’s law around what must be included in an advance directive. Oregonians who are moving or traveling should look at that state’s law to learn whether it will honor their advance directive form, said Kellie Lapp, the executive director of Oregon Health Decisions, a nonprofit that helps people with end-of-life planning. Some states, including Oregon, have specific forms people must use. Others do not, she said.

One woman, identified only as Lisa, posted on The Conversation Project’s website that when her father was transferred to a nursing home in another state, the staff members said his directives were not legally valid, and they would instead follow state and federal law. He ended up being transferred to the emergency room even though he did not want to be hospitalized.

In another case, a woman and her terminally ill husband decided he would die at home. Once he died, she wasn’t sure what to do, so she dialed 911, Goodman said. Because her husband’s advance directives were at the hospital, the workers who arrived were legally required to perform emergency resuscitation on the deceased man. They had no document to tell them otherwise.

To avoid situations like this, once people fill out their advance directive, they should give a copy to their health care representative, the loved one they’ve chosen to oversee their care in the event they can’t make decisions for themselves, their doctor and their lawyer, if they have one, Lapp said.

At St. Charles, administrators and caregivers are working to be able to carry out patients’ end-of-life wishes, Mavity said.

“I think the medical system is not currently built to completely be able to 100 percent respect and honor wishes throughout the continuum of someone’s illness,” she said.

All St. Charles patients are asked whether they have an advance directive, not just those in the intensive care unit. And all doctors — not just those who specialize in end-of-life care — are being encouraged to ask patients about what matters to them and how they define quality of life, Mavity said.

“It really is all about getting into what’s important to them,” she said, “and when we can step back and understand their value system better, then we can come up with a plan that makes sense for the patient and family, and that’s a really rewarding thing.”

Goodman said end-of-life planning doesn’t just benefit the person who dies, it benefits their survivors, who can end up with decades of guilt and depression if they feel they didn’t do the right thing.

“When you get this right, you get something big right,” she said, “and when you get this wrong, you get something big wrong.”

— Reporter: 541-383-0304,

tbannow@bendbulletin.com

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