Interview with Vince Chiles, MSW

Vincent Chiles, LCSW has a master's degree in Social Work from Arizona State University. He lives in Reading, Pennsylvania with his family where he works as a hospice supervisor for Covenant Home Care, a faith-based not-for-profit hospice provider. He is a contributing writer for the HFA's Hospice and Caregiving blog. Vince has worked in hospice as a social worker and supervisor for over 9 years in Arizona and Pennsylvania. He has also worked as a drug and alcohol counselor, school counselor on The White Mountain Apache Reservation, and mental health therapist. Vince is the author of Happiness in Five Minutes a Day, a self-published book that is scheduled to be released to the public on 3/26/08. His book’s web-site is www.happinessinfive.com.

Q: You’ve worked in hospice for many years now. What are some of the “common threads” that you see when communicating with hospice patients and families?

A. One of the greatest dilemmas is simply educating both families and professionals about what hospice care is. Even if we are simply trying to give them basic information, it’s sometimes like “selling snowballs in a blizzard”; very few people want to talk about death and dying until they really need to do so.

But yet, one of the most common phrases I hear once a family has experienced hospice is, “We wish we had known about hospice sooner…” I think something in that phrase signals what is really a normal grief reaction. It’s very typical for families, after a loved one’s death, to wonder in hindsight what could have been different about the experience; in many ways, that’s a way for them to begin processing the loss.

Q. What are some of the common myths or misperceptions that you find about hospice?

A. The first is always that “hospice is a place you go to die”, and that hospice care only really happens in the last days or hours of life. Another common myth is that patients in hospice are “ready to die”--ie, someone will tell you that their loved one is not “ready” to die, and therefore hospice isn’t necessary yet. In all of my years of experience I have never met a person who wants to die, but I have met many who want or are ready for release from their pain and suffering. This misconception brings to mind a Navajo belief that if we think something bad will happen, we’re inviting that thing to happen. It’s a very unconscious, almost archetypal response, yet it can keep families from receiving the full benefits that hospice can provide.

Q. Once a patient is in hospice care, what information is most important to the patient and the family, especially when death is imminent?

The first thing that families need is the knowledge that there is a person who is willing to listen to them and hear their concerns. They need someone who is willing to be present and support them, especially as the death of their loved one approaches.

I often use the analogy of being a new parent, having a fear that your actions may somehow cause discomfort or distress (some parents even think they might “break” the baby!) Many families experience similar fears when a loved one is dying--will I do something to hasten the death, or to cause suffering? But just as new parents intuitively understand how to be kind and loving, families whose loved one is dying should trust that same intuition.

In hospice, we often find that family caregivers may ask the same question many times, even when they’ve heard the same answer before. Facing the death of someone you love is emotionally overwhelming, and families need to be patient and gentle with themselves. Hospice staff truly believe that there are no stupid questions; families should always feel that they can ask whatever questions they need to, whenever they need to.

Q. The actual dying process can be a confusing and difficult time for family members, even with the support of hospice care. What advice do you offer from a professional perspective?

A. One occurrence that I see often, both with families and professionals, is the onset of what I call “elder speak.” Seemingly out of protection, or a perceived way of expressing comfort, families and professionals will being speaking to the dying person in a high voice, almost in a childlike tone. While this type of communication comes from concern, caregivers need to remember that the dying person is first and foremost a person. That person had a full life, spent in a career, maybe raising a family, making connections with friends. That person experienced trauma and loss and developed coping mechanisms along the way. Most patients in hospice are older, so they have maturity and wisdom. It is tragic to me that these people are often treated more like children as death approaches, when what they truly need and deserve is dignity, respect, and honesty.

Q. Hospice care offers a unique system of support to families while a loved one is dying. How does that communication and support help families after the death?

A. After the tragedies of September 11, there was an increased awareness of the grief surrounding sudden and traumatic loss. The #1 indicator that prevents complicated grief has been shown to be the ability for someone to say goodbye to a dying loved one. I would say that 99.9% of the time, hospice does a wonderful job educating families about the importance of using the time in hospice care to say goodbye, to make amends and complete any unfinished business. In my experience, I truly see most survivors in hospice doing very well throughout their grieving. A woman who runs one of our support groups observed that few of the families served by our hospice actually attend our groups; that may be in part because the experience of their loved one dying in hospice care really aided them in their grief journey, even before the death.

I see death as the second great mystery of life, after birth. Yet in death, the mystery is compounded because there is no tangible proof of that mystery, like the proof that a new baby can provide. That absence of life confuses us, and that is grief.

If families are given the opportunity to do everything they can for a loved one during the dying process, and given support to muster the courage to be really present during that time, that experience may bring a better understanding and acceptance of this mystery. When hospice survivors generally feel like they did everything they could, that can help them grapple with the “what if’s?” that may well up during grief.

Q. HFA’s upcoming teleconference will be focusing on Children and Loss. In your experience, what do you find important in communicating with children about death and dying?

A. People who work in hospice are so passionate about it, and what often drives them is seeing the results of their work in action. Having the opportunity to teach children that death and grief are natural processes in life can be extremely rewarding.

As with adults, platitudes and patronizing are not good. A quote attributed to Albert Einstein says, “The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.” Kids have not learned to live by that “servant”; they are extremely intuitive. Kids need honesty and the opportunity to share their feelings and emotions, without sugarcoating or trying to make it “better” than it is.

I once worked with a teenager on a reservation. He and his friend had both been drinking. He passed out outside, his friend passed out inside, and then his friend died when the house caught on fire. This teen was a textbook example of a dysfunctional, deviant individual. Yet the first thing he asked when I met with him was if I would help arrange for a Medicine Man to come pray for him and his friend. Intuitively, he knew what he needed and was able to seek out that very personal solution.

And we need to remember that kids change; every year, it seems they are a new person, a new personality. Paying attention to those developmental changes is very critical. Adolescents especially need to be given opportunities to grieve that allows their integrity and personality to remain intact. I once worked with a Mexican-American family in Arizona whose grandmother, the matriarch of the family, had died. She had over 50 grandkids, some of whom were teen gang members. A typical support model, like attending a teen grief group, was not going to work for these boys, but yet they were all devastated by the loss. I suggested to them that they go into the bathroom and run the water as loud as they could, to give themselves a way to express that grief and still retain their sense of self that was so important.

Q. You are clearly passionate about hospice and the work that you do with dying patients and families. What about hospice care do you find most compelling?

A. Hospice care allows us to acknowledge that quality care for the dying is just as necessary and valid as is curative care. To me, hospice families are modern-day heroes. As they care for a loved one who is dying, they face their own deepest concerns and fears. These families are willing to go to a real threshold, and a true shift can happen in that process. It is our vulnerabilities that unite us; working in hospice allows us the opportunity to help families make the most of that and to offer support along the way.