Conversations about the end of life should start now, advocates say

A phone call was all it took.

Bill Hanley's 92-year-old mother, Carol, had been diagnosed with renal failure and her only hope of survival was dialysis. The doctors recommended it, and Hanley assumed his mother would pursue it.

But at her age, she was not interested in the difficult treatment. Hanley's parents, siblings and children all joined on a conference call, "and we all at the same time got to hear my mom very unequivocally express her preferences." He knew, then, that he had to honor her wishes. Carol died a few weeks later.

Talking about one's own death can be awkward and emotional. But what was once just a suggestion could become routine because of a change in the law.

The Obama administration this summer proposed reimbursing doctors for advance care planning conversations with Medicare patients. Coming seven years after the highly political "death panels" debate, the Medicare decision applies to Americans age 65 and up and is slated to begin in January.

While advocates laud the change, many say it doesn't go far enough. They argue that the conversation needs to begin long before a senior or terminally ill patient walks through the doors of a doctor's office.

How much medical intervention do I want to undergo in order to extend my life? Am I willing to survive in a vegetative state, using a breathing machine, or on a feeding tube? If I am not able to make treatment decisions, who should decide for me?

While completing an advance directive with answers to questions like those is the best insurance that a patient's wishes will be carried out, advocates are pushing for more dialogue among families and loved ones, with spiritual leaders, within ethnic communities and in the classroom, starting as early as age 18.

"We just encourage people to talk," said Sue Schettle, CEO of the Twin Cities Medical Society and executive director of Honoring Choices Minnesota, a statewide initiative promoting advance care planning conversations. "It is uncomfortable to broach the subject, but once you start it, it's really hard to stop."

The Medicare decision coincides with a broader interest in advance-care planning taking root locally. A new course at the University of Minnesota's Center for Spirituality and Healing, "Empowering Patients in Living Well/Dying Well," is helping medical practitioners talk to patients about their end-of-life wishes. And the Park Nicollet Foundation hosted recent discussions centered on Dr. Atul Gawande's bestselling book, "Being Mortal," which reflects on medicine's role at the end of life. A steering committee made up of local politicians and medical professionals sent out about 100 copies with invitations to the book club.

Gawande, one of the most visible champions of advance-care planning, recommends people think about the quality of life they want at the end and make those "loyalties" known.

"People have priorities in their life besides living longer. They have things they live for that are bigger than themselves," Gawande said in a talk at a recent Minneapolis Foundation conference. " … The most reliable way to learn what matters most to people, what those loyalties are, is a highly technical procedure — you ask them. And we don't ask."

Only about 1 in 4 Americans has an advance directive, according to a study in the Journal of Preventative Medicine. Yet, 68 percent say they have concerns about their end-of-life care, including costs, pain, comfort and dignity.

"One of the things that happens in our culture is we're so averse to talking about death, like it's not even a part of life, and of course it is — it's a part of that circle," said Susan Marschalk, executive director of the Minnesota Network of Hospice and Palliative Care. "It calls into question our mortality, and that's why so many people haven't done [an advance directive], even though it's a gift to our families."

The advancement of medical treatments and technology that help people live longer have shifted focus away from death and onto the ability to stay alive. With those medical strides, a way of talking about the inevitable was lost, said Frank Bennett, a former chaplain resident at Abbott Northwestern and the creator of the new U course.

"There's a gap in communication, not just between providers and patients, but also between the person and their family," Bennett said. "Children don't want to talk with their parents about the prospect of that person being gone from their lives."

The conversation with his mother wasn't easy for Hanley, now 61. "You're essentially grieving for her loss while she's still there," he said.

But knowing what she wanted and seeing her wishes granted helped soothe the loss. When Hanley's mother died in 2010, "it brought such amazing relief," he said, "because we all knew she had some sense of control."

Talking about death is different in every family because of cultural and spiritual backgrounds. Bennett advises people to begin by focusing on someone who died in a way they respect and admire.

Not everyone is eager for that level of reflection. On the first day of class in a freshman nursing course at the U, instructor Susan O'Conner-Von gives her students, mostly ages 17 and 18, an unusual assignment: to think about how they would like to die. It doesn't always go over well.

"I'll have students come back to me and say, 'My parents are miffed. Why are we talking about this?' "

Those who do take the leap can be in store for a moving experience. Lynn Betzold, who volunteers with Honoring Choices Minnesota, said talking with her parents about their end-of-life wishes was transformative.

"We had a very heartfelt conversation," she said. "It was deep, it was meaningful, it was sitting at the table with each other acknowledging that at some point, we are going to say goodbye."

Sharyn Jackson • 612-673-4853