End-of-Life Choice, Palliative Care and Counseling

Movement Grows in Planning End-of-Life Strategyby Sonja

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by T.J. Greaney
Columbia Daily Tribune
January 9, 2013

Kathe Ward could see that her mother was slipping away.

Suffering from advanced Alzheimer’s, the 77-year-old passed her days in a nursing home bed, unable to speak, sit up or control her bowels. So Ward, a St. Louis registered nurse, asked a lawyer to draw up a document forbidding medical personnel from aggressively trying to prolong her life by using CPR, dialysis or a ventilator.

Known as an “advance directive,” the document signed by her mother, with Ward’s help clutching the pen, gave Ward power of attorney in health care for her mother.

“I felt like I knew her well enough to know she wouldn’t want to linger in the state she was in,” Ward said of her decision in 2005 to prepare an advance directive. “But I knew there was a possibility she could have lived in that state for another 10 years.”

In 2007, when her mother stopped breathing correctly and a feeding tube implanted in her stomach fell out, Ward relied on the legal document to help her make the wrenching decision to let her mother die despite some resistance from siblings. “Had it not been for me really taking the bull by the horns and saying, ‘We are not taking her to the hospital to put another tube in her stomach,’ then I think my sisters would have just said, ‘We want everything done,’ ” Ward said. “And it would have been much harder for them to let go. And it would have been prolonged.”

Ward just wishes she and her mother had talked about an advance directive before her mother’s illness.

A new proposal might encourage more Missourians to have that talk. Lt. Gov. Peter Kinder plans this summer to roll out a plan similar to the program at Gundersen Lutheran Hospital in La Crosse, Wis., where more than 90 percent of the patients have signed advance directives. Advocates say results include less expensive and more satisfying end-of life care.

Bud Hammes, director of the Respecting Choices training program at Gundersen Lutheran, said the end-of-life care model began in 1986 with dialysis patients, who are at high risk for strokes that can severely impair motor skills and brain function. Hammes kept having the same difficult discussions with family members in case after case about whether the loved one would like to continue receiving dialysis to prolong his or her life.

“I repeatedly got this look of despair and the response of, ‘If I only knew,’ ” he recalled.

Hammes said he was surpised that dialysis patients were visiting the hospital three times weekly for hours at a time and no one bothered to ask what type of care they’d like should they become incapacitated.

Over the years, advance care directives have become a communitywide passion in La Crosse. The discussion is built into the hospital’s admissions process. From primary care doctors to emergency rooms, patients are given the opportunity to make end-of-life plans. At Gundersen Lutheran, advance directives are part of a patient’s electronic medical records, viewable by medical care personnel from paramedics to the bedside nurse.

Gundersen Lutheran is one of the least expensive places in the nation for the last two years of a patient’s life. The hospital has a Medicare reimbursement of $18,359 per patient, about $7,000 below the national average. The hospital averaged 13.5 hospital days per deceased patient, 10 fewer than the national average.

“This is not an effort to limit care. This is an effort to understand what good care looks like for that patient,” Hammes said. “And the only way to do that and prepare for a time when the patient is incapable of speaking for themselves is to talk with them in advance.”

Hammes said a doctor or staffer will ask patients a series of questions: Who would they want making decisions if they become incapacitated? What would the appropriate goals of care be if they should forget their identity, their whereabouts or their loved ones and they appeared unlikely to recover those abilities? Are there strongly held religious or philosophical beliefs that would affect how they prefer to be cared for?

Doctors are trained to update advance directives as a patient’s health changes. These discussions are also incorporated into a standard sheet, “Physicians Orders for Life-Sustaining Treatment,” which stays in the patient’s medical records. Near the end of life, Gundersen emphasizes palliative care.

Gundersen has a big fan in former U.S. House Speaker Newt Gingrich, whose father-in-law died at Gundersen after a three-year battle with lung cancer. “What they create is a family relationship in a difficult period so that the families end up being very satisfied,” he said. “The families feel there was dignity, there was dialogue, people were collectively doing something.”

Kinder plans to use his role as the state’s advocate for seniors to promote a statewide Gundersen-style proposal. His chief of staff, Rich Aubuchon, said the lieutenant governor already has forwarded documents on Gundersen’s program to AARP and will reach out to the Missouri Hospitals Association. The proposal might not become law, Aubuchon said, but might stimulate a pilot Missouri hospital program that would encourage the practice elsewhere.

Linda Newkirk, executive director of the Alzheimer’s Association Mid-Missouri Chapter, is intrigued by the idea. She recalled her father’s end-of-life care, when doctors wanted to run a battery of tests for cancer. He was 85, confused and suffering from dementia. Her brother finally said “no.”

“There is a point where the care needs to be comfort care,” she said. “When they’re near the end of life — and that may be one year or two years — there is a point where they’re not really connecting with things going on. And it’s OK to begin to say, ‘What do we need to do to make this person comfortable?’ ”