Unclear wording adds to patient confusion over living wills

Most patients don't realize that directives take effect only after a diagnosis of terminal illness.

By Andis Robeznieks, amednews staff. Dec. 23/30, 2002.

Few patients arrive at a hospital with their preferences for end-of-life care formally expressed in living wills or advance directives. But even when they do, these preferences may be packaged in documents that are not clearly understood or available.

In a study published in the Dec. 1 American Journal of Respiratory and Critical Care Medicine, Connecticut researchers at Bridgeport Hospital in Bridgeport and the Yale University School of Medicine in New Haven examined if patients, family members and physicians were all on the same page regarding cardiopulmonary resuscitation and endotracheal intubation/mechanical ventilation.

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The researchers found that only 206 patients (4.3%) out of the 4,800 admitted to the 325-bed teaching hospital between July and October 2001 had living wills and that "living wills did not reflect fully patients' expectations of receiving or not receiving life-sustaining modalities."

Of those 206 patients, researchers were able to interview only 151, and of those, only 88 had complete data.

Of the 88, more than half wanted to block intubation or ventilation if the chances of recovery were less than 10%, and about 15% wanted to block it even if the chances were 50-50.

Constantine A. Manthous, MD, one of the authors of the study, said most living wills would not grant this request, and he was "startled" by how few people knew this.

"Living wills, as they are currently written, don't 'kick in' until a physician or physicians come to the conclusion that the patient is terminal," said Dr. Manthous, director of internal medicine training at Bridgeport Hospital and assistant clinical professor at Yale University School of Medicine. "As our study demonstrates, the most common misunderstanding regarding living wills is that they apply to non-terminal circumstances, which they don't.

"[Patients] are considering a 10% chance of survival as terminal, when terminal is 0%," he added. "Unless you have a an absolutely zero chance at survival, the living will does not apply."

At the root of this confusion, Dr. Manthous said, is a phrase used in a sample living will posted on the Connecticut attorney general's Web site: "If my condition is deemed terminal or if it is determined that I will be permanently unconscious, I [request to] be allowed to die and not kept alive through artificial support systems."

This phrase "may lead to significant ambiguity for patients, doctors and families," Dr. Manthous's report stated. And because that phrase is in materials prepared by the attorney general's office, he said, many living wills either directly copy it or "emulate the language."

If a patient wishes to block CPR, intubation or ventilation under any circumstances, they have to say so specifically, Dr. Manthous said.

If they want those treatments blocked when it appears their chances of recovery are decreasing, he suggests the living will be written to include something such as "If after a trial of therapies and X amount of days, my condition continues to worsen and my chances of survival are getting smaller, then terminate mechanical ventilation."

White patients are more likely to have living wills than are black or Hispanic patients.

"I haven't seen a living will in 10 years that's written like that," he said.

The other major finding in the report was that white patients were 23.2 times as likely to have living wills as black patients and 10.5 times as likely as Hispanic patients.

"Hardly any blacks or Hispanics have living wills," Dr. Manthous said. "And I found that disturbing."

He didn't have any clear explanations why this was so, but Dr. Manthous said it was something he could work to improve through his position as head of the hospital's internal medicine training program.

Bringing clarity

Fixing the ambiguities included in the language of most living wills, however, is another matter. Dr. Manthous said he wrote a Dec. 9 letter to Connecticut Attorney General Richard Blumenthal, but he had yet to receive a reply.

"To change that would require a top-down approach," Dr. Manthous said. "It would be very difficult to approach one person at a time in Bridgeport. It has to be mandated and thought through on a higher level than I could do personally."

One community that has taken almost a door-to-door approach is LaCrosse, Wis., where a 1995 study showed that 85% of the people who died there had an advance directive on file. This was done through the Gundersen Lutheran Medical Foundation's "Respecting Choices" program, initiated in 1986 with a focus on chronic dialysis patients.

"The use of advance directives is no different than any other part of health care," said Bernard Hammes, PhD, director of medical humanities for Gundersen Lutheran. "A system has to be in place, and it has to be monitored. I don't think I can overemphasize the importance of designing a system and managing it."

Steps to effective directives

According Dr. Hammes, there are five elements that keep the Gundersen Lutheran program working:

Doctors have to initiate the advance directive process. He said research shows patients don't feel it's their place to bring it up.
Patients must be assisted in the process by physicians, and attorneys if necessary.
End-of-life treatment plans must be clear to patients, physicians and family members.
Patients must have confidence that the proper documents will be retrievable when they are needed.
Patients must have confidence that physicians will follow their advance directives.

"If any of those pieces is missing, your system is seriously flawed," Dr. Hammes said.

He also warns physicians against starting the process by saying: "Let me tell you what you need to know."

"Most patients have stories about good deaths and bad deaths, and they have opinions based on them," Dr. Hammes said.

"Take a moment to listen to them, and learn what they need to know, what they don't want and what their values are."

ADDITIONAL INFORMATION:

What you need to know

Questions to ask regarding local advance directive programs:

Are you merely completing documents, or are you having quality advance-care planning conversations?
Are you initiating conversations with all patients and families early in the course of chronic illness, or are advance directives completed just before death?
Are the documents available when end-of-life treatment choices are needed?
Is there evidence patient treatment choices are being honored?
Are patients communicating their preferences to their physicians, chosen health care agent and loved ones?

Source: "Respecting Choices" program developed by Gundersen Lutheran Medical Foundation in La Crosse, Wis.

Weblink

Gundersen Lutheran Medical Foundation program, "Respecting Choices" (http://www.gundluth.org/eolprograms)

Abstract, "Patient, Physician and Family Member Understanding of Living Wills," American Journal of Respiratory and Critical Care Medicine (http://ajrccm.atsjournals.org/cgi/content/abstract/166/11/1430)

American Thoracic Society patient primer on critical care (http://www.thoracic.org/assemblies/cc/ccprimer/mainframe2.html)