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The Journal Gazette

Wednesday, March 16, 2016 9:33 am

Putting patients' wishes first

Abraham Schwab

April 7 was National Coffee Cake Day. I can appreciate a good coffee cake as much as the next person, but I don’t think we need a day for it. Indeed, we now have national days for lipstick (July 29) and margaritas (Feb. 22), too. Despite my ambivalence, here I am taking advantage of today’s National Healthcare Decisions Day ( to discuss advance care planning and why Fort Wayne has the chance to be a leader in this area. To understand our opportunity, we need to understand why ACP is important.

Advance care planning happens when a patient takes steps to ensure their future health care aligns with their wishes. The first step is identifying a health care representative or health care power of attorney to make decisions for you if you’re no longer able. In Indiana, failure to assign a health care representative can lead to what I call the "Brother from California" syndrome – everyone agrees on a course of treatment except for the brother from California. And in Indiana, if you do not have a written advance directive, he has an equal say with every other family member, regardless of how long it’s been since he’s been in touch.

As we approach the twilight of life, advance care planning involves much more. If medical conditions begin to pile up or if the body begins to slowly fail, ACP often includes living wills, Physician Order for Scope of Treatment forms, or Do-Not-Resuscitate/Allow-Natural-Death orders. And it is in this area of ACP that Fort Wayne can draw on Gundersen Health System’s success.

For more than 20 years, Gundersen Health System has been committed to improving the advance care planning of its area, La Crosse County, Wisconsin. Gundersen has been working for years to develop the best methods to discuss, describe and educate about ACP with patients. And its work paid off.

In 2010, Gundersen demonstrated that of the patients who died in a care setting, 96 percent had an advance care plan, and 99 percent of those plans were available in the medical record. In itself, these statistics are impressive. Nationally, about 50 percent of patients have an advance care plan and even fewer have them in their chart. 

But two truly amazing facts drive home Gundersen’s success. First, and most importantly, 99 percent of patients with an advance care plan received treatment and care consistent with that plan at the end of life. Nationally it’s more like 50 percent. Second, and this also has a strong appeal, patients served by Gundersen spend fewer days in the hospital leading up to death. As a consequence, the health system spends less on this care than 90 percent of other U.S. health systems. 

Gundersen’s methods lead to patients getting the care they want, and the care costs less.

In Fort Wayne (and northeast Indiana) we have a unique opportunity to be a leader in advance care planning. Because of the generous work of Susan Hickman at IUPUI and her help bringing the Gundersen Health System’s method to Fort Wayne, we already have 49 trained facilitators in ACP. We will soon have an individual, Katie Hougham, who will be able to train other trainers.

To get Fort Wayne and northeast Indiana into this position has taken tremendous support and generosity. Visiting Nurse and Aging and In-Home Services have been in the vanguard, and the Community Foundation has recently provided generously as well, as have many others.

But to be a leader in ACP, we need more than the generosity and investment of these institutions. We need a cultural shift. We need patients who talk to their families about what they want; we need physicians, nurses, social workers and other care providers to have time to talk to patients and their families about advance care planning; and, we need health systems and long-term care facilities to support these conversations. We need Lutheran and Parkview as hospital systems, Miller’s Merry Manor and Lutheran Life Villages as long-term care facilities, and all of the other facilities providing care in the twilight of life to embrace advance care planning and to make the time for such discussions to be part of a team member’s job.

I like to think of Fort Wayne as being a leader in advance care planning. But even if we aren’t, ACP will be part of our future in medical care. Last November, the federal government released a new set of guidelines for its reviews of long-term care facilities. These new guidelines include advance care planning. Reviewers will ask patients and care providers about advance care planning at their facilities.

Fort Wayne and northeast Indiana have the opportunity to be leaders in a cultural shift that is coming to Indiana. And like all cultural shifts, it requires the work of us all.