Dr. Ellen Fox, former director of the National Center for Ethics in Health Care with the U.S. Department of Veterans Affairs (VA) health care system, has made public an advance care planning guide specially designed for veterans. The guide, Planning for Future Health Care Decisions, has been delayed for years by officials within the VA, Fox said.

Fox first announced its release in an article posted on bioethics.net, where she noted that five years have passed since the media firestorm surrounding “death panels”- a term coined by former Alaska governor Sarah Palin describing an Affordable Care Act provision that would have authorized Medicare payments for advance care planning discussions. “The long-term fallout from ‘death panels’ has been profound, and has extended far beyond issues of Medicare reimbursement,” she wrote.

Fox spoke with Life Matters Media about the importance of advance care planning and answered questions via email. Planning for Future, also known as Planning My Way, is now available as a downloadable PDF document.

How did you become interested in medical ethics and advance care planning?

At Harvard Medical School, I learned that patients have a right to accept or decline treatments- including life-sustaining treatments- and that physicians are obligated to respect patients’ decisions. However, as I soon discovered, it is rarely that simple. The unfortunate reality is, many patients never have an opportunity communicate their care preferences before they become critically ill or unable to speak for themselves.

Physicians often put off advance care planning discussions until a crisis occurs, or until the patient is close to death and can no longer make decisions. This is hard on everyone, and too often results in decisions that are not what the patient would have wanted.

I knew there had to be a better way. At Yale, I developed an ethics training program for residents that focused on communication skills. Then, I completed a post-graduate Ethics Fellowship program at the University of Chicago. Later, I became the Director of End-of-life Care at the American Medical Association and developed a curriculum called EPEC (Education in Palliative and End-of-life Care) to educate providers about end of life care. In 1999, I accepted the job as chief of health care ethics at the VA.

What was your vision for advance care planning at the VA?

My vision was that every patient who wants to discuss and document their health care preferences in advance will be able to do so. When I started, VA had no laws or regulations about advance care planning. The rest of the country at least had the Patient Self-Determination Act, which required providers to ask patients about advance directives. Every state had advance directive laws– but these laws did not apply to VA. So one thing we did was to publish a regulation that essentially mirrored the requirements outside of VA.

But we did not stop there. We established a policy requiring primary care providers to ask patients about advance care planning at regular intervals. We established a standardized advance directive form that enables patients to communicate their preference in ways that most state forms do not. We put in place a system that streamlines the process of entering advance directives into patients’ electronic records. We rolled out a training program for VA staff who provide patients with information and assistance on advance directives. But a key piece of the strategy was missing– an educational resource to help patients and families with advance care planning. That resource was Planning My Way.

You recently wrote an article for bioethics.net in which you made Planning My Way available to the public for the first time. What was your goal?

My goal is simple – to get Planning My Way into the hands of the people it was designed to help.

Planning My Way was developed to help people plan for future health decisions. A lot of time, energy, thought and taxpayer dollars went into developing Planning My Way to ensure that it was done well. The result is a high-quality resource that I believe will improve people’s lives. The public paid for the development of Planning My Way, and they have a right to it. It is wrong to produce this resource with taxpayer dollars and withhold it from the public.

Why has VA withheld Planning My Way from the public?

I was not in the room when decisions were made about the release of Planning My Way. But it was my understanding all along that it was never a matter of “if” but “when.” The intent was to time the release so as to minimize the risk of rekindling the “death panels” debate. But that time never came.

Has it been frustrating having to counter the “death panel” controversy?

Yes, to say the least! That controversy made advance care planning a political issue.

It played on people’s fears of death and dying by suggesting that the purpose of advance care planning is to encourage people to forgo life-sustaining treatments. In fact, the opposite is true. The whole point of advance can planning is to help patients think about and communicate their own personal health care preferences, regardless of what those preferences may be. The point is to respect how each individual wants to be cared for including what treatments they want to receive.

How long has it been since Planning My Way was completed?

Planning My Way has been ready for release for a long time– years. The PDF version was completed first, followed by the online version. I can’t give you exact dates, but in the spring of 2013, I presented Planning My Way at a public meeting. I showed the group both the PDF version, which had been produced as a bound workbook, and an interactive online version, which was live on the Internet. Both versions were completed long before I made that presentation.

You posted a PDF version on Google Drive. What about the interactive online version? Has that been released?

Not yet, in the sense that if you search for Planning My Way, you will not find it on any VA web site. That’s because VA has still not released any version of Planning My Way to the public. But I have now released the online version myself by posting the link to a hidden web site– a site that VA did not want the public to know about. As of this morning, the hidden site was still not linked to any public web pages, which prevents Internet search engines from finding it. The address of that hidden site is www.ethics.va.gov/pmw_web.

Do you expect that VA will release Planning My Way to the public any time soon?

I certainly hope so. I am hoping that my decision to go public will motivate VA to officially release this resource and make it widely available both inside and outside of VA. My sources inside VA tell me that I have gotten their attention, and that serious discussions are now under way.

I will breathe a sigh of relief when VA finally releases Planning My Way, and I’m hoping that will happen very soon. But I am done waiting for VA to act. My plan is to continue sharing the document unofficially, through various channels, including through direct contact with VA providers, veterans service organizations, advance care planning advocates and other communities that are deeply committed to patients and their right to receive the type of care they want and need.

How is it different from other advance care planning products?

There are a number of different resources out there to help people with advance care planning. Each has its strengths and weaknesses.

One thing that makes Planning My Way different is how we went to great lengths to ensure that its content was unbiased and helpful to everyone, regardless of their background or viewpoint. We consulted extensively with experts in health communications and many other fields, as well as representatives of veterans organizations, faith groups and disability rights communities. I think it’s safe to say that there is no other advance care planning resource that has been as extensively vetted as Planning My Way.

Can any individual benefit from Planning My Way? Or is it designed primarily for veterans?

It was designed for everyone– veterans and non-veterans alike. So anyone can benefit from Planning My Way. At the same time it was designed with Veterans in mind. So some of the images and case examples will have special meaning for Veterans and their families.