Lawyers help people fill out living wills at nursing homes

April 17--Helen Henzler filled out a living will on Wednesday because she wants to make sure her end-of-life wishes are followed.

"I don't want to live after I'm dead mentally," said Henzler, 85, of Lemay. "I'm trying to protect myself."

Henzler participated in a free service offered at nursing homes across St. Louis as part of National Healthcare Decisions Day. Attorneys donated their time to help residents, staff and family members fill out and certify advance directive documents that were provided by the Missouri Bar.

Advance directives are legal documents that designate power of attorney and end-of-life treatment preferences also known as a living will. Most people don't think about the decisions until after they experience a heart attack, serious accident or other life-threatening event. Fewer than one-third of Americans are thought to have completed the legal documents.

The documents allow for the designation of a decision-making representative and two alternatives if a patient loses the ability to communicate. Another section indicates what measures should or shouldn't be taken to prolong life, including feeding tubes, ventilation and surgery. The forms also include questions about autopsy, organ donation and medical research after death.

The event Wednesday was also sponsored locally by the University of Missouri, which received a $15 million federal grant to study ways to reduce repeat hospital visits among nursing home residents. Living wills are particularly important during transitions from nursing homes and hospitals.

"What sometimes happens is that people get transferred from the hospital to a skilled nursing facility or vice versa, and the communication about their advance directive doesn't follow them," said Colleen Galambos, a professor of social work at the University of Missouri who helped organize the clinics. "They get treatment they don't want or don't get treatment they said they wanted. The conversations have to be continuous."

Mike Roth, president of Alexian Brothers Sherbrooke Village in south St. Louis County, said he wanted to host an advance directive event as part of the skilled nursing facility's end-of-life programming.

"It's very much needed, and it's not understood very well," Roth said. "Nobody wants to face those issues."

Roth encouraged employees to participate as well. Linda Amoroso, life enrichment coordinator at the facility, said she has seen families try to make decisions in crisis situations and wanted to make it easier for her children by filling out the documents.

Amoroso worked at a now-closed local hospital where Christine Busalacchi stayed. Busalacchi was in a persistent vegetative state after a 1987 car accident. Her father battled the state of Missouri for years to have her feeding tube removed. She died in 1993 after then-attorney general Jay Nixon said the state would stop pursuing the case.

"Nobody wins in that fight," Amoroso said.

Tiffany Nelson, an advanced practice nurse at Sherbrooke Village, served as a witness for people signing their advance directives. She said the documents can relieve feelings of guilt for grieving families because the end-of-life decisions have already been made.

"It's hard for families," Nelson said. "They want to do the best for their loved ones but they don't know what the best is."

Galumbos said it's important for families and health care providers to normalize discussions about death by easing into them until it becomes more comfortable.

"We look at making a discussion about what you want for your life to be part of the normal process of health care," she said. "If all of a sudden the family is called to the ER because mother has a heart attack, that's a very difficult time to start making these decisions."

A crucial part of the process is designating power of attorney, or an agent to carry out the living will, said attorney Brigid Fernandez of Martha C. Brown and Associates, who helped find the 15 lawyers who volunteered locally.

"Everyone hopes that they're able to communicate their needs until the very end, but it doesn't always happen that way," Fernandez said. "It's important to start the conversation and educate people about their options."

Blythe Bernhard covers health and medicine for the Post-Dispatch. Follow her on twitter @blythebernhard

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