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Tools for planning end of life care are varied, untested: study

By Kathryn Doyle

NEW YORK (Reuters Health) - Many tools exist to help introduce people to the subject of advanced care planning, but they vary widely in what they offer and how accessible they are, according to a new research review.

The authors found the tools that are most readily available often have not been vetted by formal studies, and the ones that have are often not accessible to the public or are specific to certain diseases.

“Decision aids” have proliferated in many areas of medicine but have yet to really take off in the area of advanced directives, though they have a lot of potential to help doctors and patients, said Dr. Benjamin H. Levi of Penn State College of Medicine in Hershey, Pennsylvania.

Levi was not one of the authors of the new paper in the Annals of Internal Medicine, but he did review it for the journal.

Advance care planning helps seriously ill patients think through their treatment goals and informs care choices for the future in case they cannot express their wishes.

Less than half of severely or terminally ill patients have an advance directive in their medical record, according to the study authors, and past research has found doctors are only correct 65 percent of the time in predicting what intensive care a patient would want.

Some patients prioritize living longer, whereas others may not wish to be kept alive when meaningful recovery or a particular quality of life is no longer possible, write the authors, led by Mary Butler of the Minnesota Evidence-based Practice Center at the University of Minnesota School of Public Health in Minneapolis.

One common “advanced directive” is a do not resuscitate order, but the directives can be much more nuanced than that, taking into account religion, spirituality and philosophical outlook, they note.

It can take more than an hour to have that kind of conversation with your doctor, Levi said, time many doctors can’t devote to one patient.

“For something like advanced care planning it’s way outside the experience of most people, they don’t know how to word their preferences,” Levi said. “The decision aid can be very useful as a stand-alone or as springboard to that conversation with your doctor.”

Decision aids, some of which actually function as legally binding final directives, should not be a substitute for talking to your doctor, though, he told Reuters Health.

As the study notes, those aids that exist can be printed leaflets, videos or interactive sites, some of which work to introduce any person, healthy or sick, to the idea of an advance directive. Others are tailored specifically to certain long-term illnesses.

The existing studies on these aids have not been uniform and there has not been a side-by-side comparison of the different types to see which are best, Levi said. The new research review did not attempt to do that either, rather it just accumulates the existing studies in one place, Butler and her co-authors write.

“You can’t use this article to choose one,” Levi said.

Dr. Linda L. Emanuel, director of the Buehler Center on Aging, Health & Society at Northwestern University Feinberg School of Medicine in Chicago, agreed.

“We have no idea how to assess what’s a good decision aid,” Emanuel told Reuters Health by phone.

“First of all, these decisions are assessed as good bad or indifferent in real time, and ‘maybe I regret my decision but I don’t know how another decision would make me feel.’”

But there are certain criteria anyone can use to assess whether an aid might be useful, she said. It should be understandable and accessible for patients and should communicate with their healthcare teams in a useful way.

Patients should remember that they have a federally protected right to have their preferences honored no matter how they communicate them, even verbally, she said.

“I think there’s really only one product out there that I think is good and I would recommend, it has a website that people can go to and have an interactive experience,” she said, referring to PREPARE, an interactive website for families navigating medical decision making, run by the University of California.

Emanuel also recommended The Conversation Project as “a good resource for familiarizing yourself with advanced care planning and seeing what people are talking about in the area.”

The experts agreed that advanced care planning is important and the best advice right now is to do a little exploring, try a few different decision aids and see what works for you.

“I believe strongly that these decision tools can be helpful for folks and that they should try one or more different ones to see what works,” said Dr. Michael Green of Penn State College of Medicine in Hershey. He and Levi helped develop “Making Your Wishes Known,” one of the interactive web tools included in the review.

“I think everybody should explore this, not just sick people,” Green told Reuters Health. “If someone is sick and comes to the hospital, the default position is to do everything.”

“In many cases that’s the right call, but in some cases it’s not and what a shame and a waste and a tragedy if people undergo unnecessary unwanted treatment because there is no directive,” Levi said.

SOURCE: http://bit.ly/UzEcfY Annals of Internal Medicine, online July 29, 2014.

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