Ellen Fox

Publish date

Tag(s): Legacy post
Topic(s): Cultural End of Life Care

by Ellen Fox, MD

It’s been five years since the media firestorm around “death panels” – a term coined by Sarah Palin to refer to a provision in Obamacare that would have authorized Medicare payments for advance care planning discussions. Though the initial blaze died down quickly, the fire has continued to smolder (as shown in this graph I generated using “Google Trends”). The long-term fallout from death panels has been profound, and has extended far beyond issues of Medicare reimbursement.

In my former role as director of the National Center for Ethics in Health Care within the U.S. Department Veterans Affairs (VA) health care system, I experienced the heat of the “death panel” conflagration firsthand when, in 2009, an advance care planning workbook that had been developed at the Seattle VA hospital in the mid 1990’s became “a lightning rod in the health care debate.”

At the time the media frenzy erupted, we were already overhauling the outdated workbook for national distribution. Due to the unwanted media attention, however, the revision process became even more complex and challenging. After seemingly endless rounds of stakeholder input and review, we were finally ready to release a new and revamped product. It was called Planning for Future Health Care Decisions…My Way (or Planning My Way for short).

But alas, the death panel problem had made Planning My Way a political hot potato. We tried numerous times and tactics to gain approval to release Planning My Way, all to no avail.

As time passed I grew increasingly concerned about the delay. Others shared my concern, including the Special Medical Advisory Group (SMAG) – a statutory committee that operates under the Federal Advisory Committee Act. According to its charter, the SMAG “advises the Secretary and the Under Secretary for Health on the care and treatment of enrolled Veterans and other matters pertinent to the operations of the Veterans Health Administration.”

After my presentation about Planning My Way at a 2013 SMAG meeting, the group recommended to VA’s Secretary that “quality and end-of-life care should never be a political issue,” and that “the roll-out of the Planning My Way resource tool should be launched as soon as possible.”

Despite this, more than 18 months later, Planning My Way has still not been released to the public. It has, however, been released to multiple individuals in response to Freedom of Information Act (FOIA) requests, as documented on this web site. Of note, agencies are required by law to make records available to the public after they have been released under FOIA three or more times.

When I left VA in June, I vowed that if VA did not release Planning My Way soon, I would release it myself.

Today I am delighted to announce that . . . drum roll, please . . . Planning My Way, is now available!

Outside reviews of Planning My Way have been very positive. For example, Charlie Sabatino, Director of the American Bar Association’s Commission on Law and Aging wrote in an article in the journal Bifocal:

The workbook breaks new ground in providing one of the most comprehensive, understandable, and practical guides for anyone ready, or getting close, to engage in advance care planning for health care decisions. Planning for Future Health Care Decisions… My Way functions as an interactive, online navigator through virtually every aspect of planning ahead for health care decisions.

Planning My Way was also described favorably in Green and Levy’s published review of on-line advance care planning resources:

The U.S. Department of Veterans Affairs (VA) is developing an online program called Planning for Future Health Care Decisions…My Way (or Planning My Way for short) that uses text, graphics, videos, and voice-overs to educate people about ACP. The program provides interactive tools and worksheets to guide individuals through the process of selecting a spokesperson to speak for them in the event they lose capacity, thinking about what matters to them and why, and initiating conversations with their loved ones and healthcare providers. The program also enables individuals to document their wishes in a personal advance directive. Planning My Way was developed by VA’s National Center for Ethics in Health Care with input from a broad range of individuals and groups. Great care was taken to ensure that the program does not favor any one point of view, that the interface is efficient and easy to use, and that the content is understandable by individuals with limited literacy skills and accessible to individuals with disabilities. While the program is designed to be relevant to everyone, some of the patient stories will have special meaning for Veterans and their families.

And Darrell Kirch, President and CEO of the Association of American Medical Colleges, summed up the positive reactions to Planning My Way at the SMAG meeting by saying “it is in the interest of the nation to learn more about advance care planning by using the Planning My Way resource tool.”

Click here for a free, downloadable, printable PDF version of Planning My Way.

Now that the cat is out of the bag, I expect that the interactive, on-line version will also be made available to the public very soon.

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