Saturday, April 18, 2009

The clinical sons and daughters of Jack Wennberg

Part of my responsibility in accepting a fellowship to attend the 2009 annual conference of the mighty Association of Health Care Journalists was to report on one of the conference sessions for the association website.

Though this is pretty different from my usual fare, I am double-dipping and posting here because I do think the panel, Shared Decision Making, is of public interest - at least to anyone who thinks they might one day go to the doctor.

"This must be gratifying to Jack Wennberg," panel moderator Gary Schwitzer (publisher of mused at the end of the probing Q&A session following the panelists' presentations.

"He couldn't get his work pubished for thirty years. He was laughed at, considered a pariah. Finally, he had to publish in Science, which is not exactly a standard journal for variations in health care."

Our panelists certainly were the methodological and clinical sons and daughters of Jack Wennberg. Using Medicare data, his Dartmouth Atlas of Health Care demonstrated striking variations in the kind of care patients receive - and the resulting costs - depending simply on where they live.

As it has been applied, Wennberg's pioneering research revealed a large number of medical procedures where there is no clinical consensus as to the course of treatment. In response, there is movement to educate - and mandate - physicians to include their patients in the decision-making process.

One panelist, David Arterburn, M.D., M.P.H. (assistant investigator, Group Health Cooperative), drew a clear distinction.

On the one hand, you have something like the prescription for a heart attack survivor to take aspirin daily. The treatment is not invasive, has very little risk and significant established benefits, and there is a wide consensus among physicians to make this prescription to someone with this condition.

On the far other side of the spectrum are the conditions and cases where shared decision-making becomes imperative. Each panelist at one time or another brainstormed a partial list, that included, overall, most surgeries to replace joints, back and spinal care, prostate and early-stage breast cancers, uterine fibroids and angina.

In such cases, Arterburn said, "there is a wide, gray zone in the evidence base where patient preferences really do matter, because physicians have a wide range in which to practice."

Aterburn, like most of the panelists, is associated with either the passage or the implementation of new legislation in the State of Washington pertaining to shared decision-making. In the order they spoke:

* Ben Moulton, J.D., M.P.H. (executive director, American Society of Law, Medicine & Ethics), coauthored a Harvard Law Review article that was used as a source in crafting the legislation in Washington, and he testified at a hearing. He said Wennberg's research taught him that "when there is more than one treatment pathway and the choice is terribly personalized, we do a terrible job of giving information about risks and benefits to patients so they can make an intelligent decision."

* Karen Merrikin, J.D. (executive director, public policy, Group Health Cooperative) has been central to implementing the new law within Group Health Cooperative, a nonprofit health care system based in Seattle that serves more than half a million consumers in Washington and Idaho. As she said, "Whether you have a masectomy or lumpectomy shouldn't vary depending on where you live."

* Arterburn has been a key investigator in collecting the same sort of data within Group Health Cooperative that the Dartmouth Atlas collected nationally - and then in educating physicians once their regional data replicated Wennberg's disturbing findings. As he said, "The evidence pushed our senior leadership and physicians to say, 'What is going on here? People in Seattle and Tacoma don't have different knees and hips.'"

The panel also included Benjamin S. Wilfond, M.D. (director, Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital), who was essentially a refugee from another panel that got spliced onto this one.

It seems that panel would have probed issues of shared decision-making in the context of the Ashley case, where the loving family of a child with severe developmental disabilities - a "Pillow Angel," since she is able to do little but remain where she is positioned, usually on a pillow - elected to pursue invasive surgery on their daughter to limit her growth, in an effort to forestall pain for her and to keep her care manageable for the family.

A blog entry by her parents sparked a national controversy over Ashley's care, and Wilfond participated in the public process to study her story in an attempt to arrive at a consensus for what is appropriate and compassionate in such severe cases.

Without adequate time to develop his own example fully, Wilfond was most helpful in raising points about the work being done by Group Health Cooperative. A key element in their approach is the use of patient decision aids, typically interactive videos developed regarding procedures and conditions where this wide variation in care has been reported.

Wilfond wondered if the burden of a fair and balanced presentation of treatment options isn't being transferred away from the physician and onto patient decision aids and the companies that produce them.

The moderator Gary Schwitzer was a crucial voice in this discussion, since he helped to produce a number of the early patient study aids. He said he has never worked on a project with such an intensive "sweating of the issues" as went into making these presentations fair and balanced, reflecting a variety of treatment options and their outcomes as experienced by patients.

Schwitzer pointed to the Foundation for Informed Medical Decision Making for more information on this, and had its website up on the screen in the auditorium as the session came to a close.


Painting of Jack Wennberg by Bert Dodson from the Dartmouth Medical School alumni magazine.

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