End-of-Life Medical Care Program Prompts Worries in Wisconsin

The debate raises moral and ethical questions that lie at the heart of end-of-life care, including what constitutes living, what medical care is normal and what is extraordinary, and who decides how and when life should end.
by | October 18, 2012

A statewide pilot program aimed at getting more people to document their wishes for end-of-life medical care is modeled in part on a successful La Crosse program that has been touted as a national example.

But the new initiative will exclude one key feature of the La Crosse plan, a bright yellow document that directs emergency caregivers -- paramedics and emergency room doctors -- to provide or withhold lifesaving treatment in accordance with a patient's wishes.

Advocates consider the POLST, or Physician Orders for Life-Sustaining Treatment, an important tool that gives chronically and terminally ill patients greater control of their care in the final moments of their lives.

Critics, including some physicians and Wisconsin's Catholic bishops, fear it can be abused to expedite death and advance euthanasia.

The debate raises moral and ethical questions that lie at the heart of end-of-life care, including what constitutes living, what medical care is normal and what is extraordinary, and who decides how and when life should end.

They are questions that strain and often estrange family members who confront them at the bedsides of elderly relatives, and they will only grow more urgent as the nation's elderly population nearly doubles by 2030, according to projections.

"POLST is the lightning rod at the moment," said Tim Bartholow, chief medical officer of the Wisconsin Medical Society, which decided against including the document in the pilot, which will encourage people to prepare advance directives, such as health care powers of attorney.

"I think we'll get there," Bartholow said. "But it could be three or four years before there's consensus about this."

While POLSTs are not part of the new pilot, they are being discussed around the state, including the Milwaukee area, as one model for improving end-of-life care.

Medical orders signed by a physician, a POLST form can be followed immediately and moves with the patient across settings -- from home to nursing home, to the ambulance and the hospital emergency room.

They're intended for people near the end of life -- those at risk of death in the next year and for whom some treatments may be painful or burdensome. And they kick in when patients are incapacitated and cannot speak for themselves.

POLSTs go beyond advance directives and Wisconsin's do-not-resuscitate statute by allowing patients to check off their preferences in four key areas of treatment: resuscitation, intubation, intravenous antibiotics and feeding tubes.

Developed in the 1990s in Oregon, POLSTs were meant to eliminate situations in which critically ill patients clearly stated their preferences in living wills or other advance directives only to have them ignored in emergencies.

"So you have an advanced directive. Where is it? In a drawer? In a safety deposit box? That's the problem," said Margaret Murphy Carley, executive director of the National POLST Paradigm Task Force at the Oregon Health and Science University in Portland.

"Families were saying, 'Why can't we talk to each other?' and 'If we write (medical) orders in one place, why are they ignored in another?' "

Fifteen states have endorsed POLST with legislation or administrative rules protecting providers who sign and follow them from legal liability, and more than 20 others are developing them, according to the task force.

They've been used as a best practice by health care providers, nursing homes and hospices in La Crosse for more than a decade, and more recently in some facilities in Kenosha and five counties in northern Wisconsin.

They are just beginning to be seen in the Milwaukee area, primarily with patients who have recently moved here.

But efforts to expand their use in Wisconsin hit a hurdle this year when the state's most influential religious lobby, the Catholic bishops, issued a letter urging their faithful -- more than a fourth of the state, by some accounts -- not to use POLSTs or living wills.

"A POLST form presents options for treatments as if they were morally neutral. In fact they are not," the bishops said in the letter published by its lobbying arm, the Wisconsin Catholic Conference.

The bishops argue that health care decisions are too complex to address in advance, and they cite a number of concerns, including the lack of a patient signature on the Wisconsin form and the absence of a conscience clause for health care providers. Bishops encourage members instead to designate health care powers of attorney who can speak for them if they are incapacitated. Milwaukee Archbishop Jerome Listecki and La Crosse Bishop William Callahan declined to be interviewed for this story.

"POLSTs lock into place orders that in the moment might not be appropriate and might be dangerous," said Stephen Pavela, an internist with the Mayo Clinic Health System-Franciscan Healthcare, in La Crosse, which has used the POLST since 1997.

Pavela, who co-authored an essay critical of POLST in the National Catholic Bioethics Center on Health Care and the Life Sciences newsletter in January, uses the form with his patients but crosses out everything but the section on resuscitation.

POLST critics say they are provided in some cases to patients who are not near death, particularly in nursing homes; that social workers and others without medical training are counseling patients about their use; and that the training materials emphasize withholding rather than providing care. And some suggest the movement has more to do with managing costs than care -- an assertion that outrages Bud Hammes, who heads the Respecting Choices program at Gundersen Lutheran Hospital, which pioneered the use of POLST in Wisconsin 15 years ago.

"They're wrong. They're simply wrong," said Hammes. "I work shoulder to shoulder with doctors and nurses who care every day for dying patients. They see the pain. They see the suffering when there is not good planning."

Hammes said critics misunderstand the program, focusing on the document rather than the lengthy process patients go through to prepare them.

Like the bishops, he said, Respecting Choices also promotes the use of a health care power of attorney, in tandem with the POLST for those who have them; and that POLSTs can and should be filled out in accordance with a patient's own religious beliefs or values.

"One of the fundamental misunderstandings is that the POLST form is not appropriate for every adult. It's only appropriate for those patients very near the end of their life . . . when you can more reliably predict what things work and what do not," Hammes said.

He said POLSTS are not ironclad -- they should be updated regularly and can be overridden by attending physicians when medically appropriate. And, he says, it's not just about denying treatment: 65% of those who have them in La Crosse seek some kind of care short of the most aggressive treatment, according to a study there.

As with any system, said Hammes, it comes down to the ethics of the individuals -- the physicians, the social workers and others who work with patients and their families to complete the form.

"From our perspective, I would have no disagreement with the general moral concerns of the bishops. We all should be concerned about the inappropriate limitation of medical care," he said.

The bishops' letter has prompted Ministry Health to suspend its POLST program in northern Wisconsin while it works with the local bishops to address their concerns. And it is likely to slow implementation of a pilot program in Appleton and Oshkosh, advocates there said.

The letter also has spurred a public discussion of POLST and end-of-life concerns that proponents say is likely to benefit patients in the long term, regardless of their religious beliefs.

"In the end, people want to live as long as they can, and they want the care that will benefit them," said Hammes.

"On the other hand, when they're faced with care where the burdens are high and the benefits are low, they don't want that. "The ethics of decision-making in the end looks the same, regardless of your religious perspective."

(c)2012 the Milwaukee Journal Sentinel

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