Interview with Kandyce Powell: Executive Director of the Maine Hospice Council & Center for End-of-Life Care

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Ms Powell has been instrumental in developing partnerships to address these issues and has been a tireless advocate for those who are disenfranchised and/or underserved. In 2004, the Maine Hospice Council worked closely with the Togus VA Medical Center in Augusta, Maine (ME) to develop one of the first Hospice-Veteran Partnerships in the country. Her organisation also makes a special effort to reach out to the incarcerated veterans at the Maine State Prison.

Why has your work at the Maine Hospice Council placed such a special effort on supporting veterans at the end of life?

My father was a WWII veteran; I remember when my sister and I would ask him questions about the war, he would begin to answer, then tear up and leave the room. Even as a child, I associated war and combat with strong emotions. It seemed that there was a correlation between those experiences and the rest of a veteran’s life. As I got older, while I knew I was not going to serve in the military, I knew I wanted to give something back to the men and women whose lives had been changed by their service.

The Maine Hospice Council board members have always been very supportive of our outreach to underserved and disenfranchised populations. We have formed collaborative partnerships with many community groups. In 1993 we identified individuals living in pain as an underserved population and subsequently started the Maine Pain Initiative. In 2000, we identified prisoners as a population that was underserved and the same with veterans in 2004. In 2004, Dr Pat Daly, a physician with the local VA Community Based Outpatient Clinic (CBOC), called with similar concerns about the needs of veterans at the end of life. It seemed to be a partnership waiting to be born.

What are some of the needs or concerns that you identified?

Veterans’ issues aren’t new. Veterans have been a part of the fabric of our culture throughout history, but focusing on veterans’ unique health care issues has not been part of our culture. While there was some sense that the VA “took care of their own,” the reality was that veterans return from service and live in our communities every day—they have families, they teach school and work in stores and attend church just like the rest of us. Yet when many veterans came to hospice at the end of life, we were addressing their needs just like they were the “rest of us.” when in fact for many veterans, who have experienced combat or observed painful and difficult situations, those needs may be much more complex.

One of the most critical needs we’ve found is just to be aware of veteran’s service and be willing to listen to the stories. Many veterans may need extra time or support to be encouraged to tell these stories; and if someone isn’t willing to hear them, that story may never come out. And for veterans, there may be an even greater reluctance to share stories and emotions, as this process was not encouraged in battle (with good reason). As is true with anyone at the end of life, some veterans may never get to the place where they will tell that story, but creating a supportive and trustworthy environment is key.

A lot of veteran education programmes have focused mainly on WWI veterans, but the demographics are changing. Does that change the type of care that is needed at the end of life?

Vietnam veterans are dying, on average, 20 years younger than other veteran cohorts. In addition, the overall experiences of Vietnam Veterans were so different from what was seen previously, both in combat and when they returned home. Hospices really need to take a different approach to caring for this generation of veterans. I vividly remember serving on a panel with a Vietnam veteran, who gave a clear and concise presentation. Afterwards, as I was talking with him, he put his hands on my shoulders and began to weep, saying, “I have seen and done some awful things. Who is going to forgive me before I die?”

In addition, many hospice professionals grew up during the Vietnam era; the average age of many hospice professionals is roughly the same as the average age of Vietnam vets. I always encourage professionals to really address their own preconceptions or possible biases about war and veterans. Without doing so, it can potentially be more difficult to offer truly supportive care to veterans who are dying.

At the Maine Hospice Council we are really focusing in on Vietnam-era veterans. We’ve also realised some interesting subpopulations within the veteran cohort. For instance, I described before how many veterans have difficutly showing emotions; these situations can really ratchet up a few notches for veterans who have served in Special Forces. Because of the nature of their professional work, these issues can run even deeper.

Another population that we work closely with is incarcerated veterans. We began a Hospice Program at the Maine State Prison 12 years ago. There are four veterans in my class and several of the men they have provided care to have also been veterans. Providing hospice care in the prisons has been a gift for everyone involved.

How has awareness of these issues changed hospice care for veterans, or how should it change care?

If we aren’t aware of the issues that veterans face, we cannot help them. Ignorance is not an excuse; veterans have always been a part of the fabric of our community. Hospice professionals have always shown a desire to learn, and to find ways to provide the most effective care, so this area is one that I find has been well-received.

When we started one of the first Hospice-Veteran Partnership in 2004, I told Dr Daly I wanted to “take the show on the road,” to do focus groups with veterans and their families throughout the State, as a way of developing trust and credibility. We attended spaghetti dinners at VSOs (Veterans’ Service Organizations), and met with other healthcare partners in the community. Our goal wasn’t to go talk or present, but to listen. It took time and resources, but was very well received!

What are some practical steps that hospices can take to better serve veterans in their communities?

Ask the question—did you serve in the military? The goal of all hospice professionals is to provide the most effective care possible. If professionals aren’t even aware that a person coming into hospice is a veteran, how can that care be most effective? You may be unaware of issues that are causing symptoms, and perhaps those symptoms would be treated more effectively if there was a knowledge and understanding of what was causing them. Many hospices are probably caring for veterans right now and are just simply unaware of it, because they haven’t asked the question. Education around this topic is always a great first step in better serving our veterans at the end of their lives.

Copyright, 2013, Hospice Foundation of America. Reprinted with permission from www.hospicefoundation.org

Information about their upcoming programme Improving Care for Veterans Facing Illness and Death can be found on their website.

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