JB: You certainly were there for us at a pretty difficult time. I remember watching you and thinking you moved like a dancer. At the time, it seemed like a stretch to go from one radically different career to another. After talking with you, it makes more sense to me.
HK: You are right, it does seems like a stretch. However, being a dancer has given me an ability to understand how a lot of what's important that we say, we say without words. The transition at end of life is much like a dance. There is the body, the music of life around you, and the unknown that is left for each person's interpretation.
JB: That's a lovely way to put it. I didn't know much about hospice then and, while I know a bit more now, I'm sure there are many readers out there who know even less than I did. Can you give us an idea of what hospice looks like? It's not a one-size-fits-all, is it?
HK: You are right, again. Hospice is not a one-size-fits-all. I think most everyone understands that hospice is end of life care. There needs to be a medical diagnosis of a life expectancy of six months or less to live. There is not a crystal ball and often people live more or less than six months. Hospice should provide a family with comfort, peace, and a sense of living at this time. Hospice services are provided wherever a person is at. It can be a house, a nursing home, or at a hospice unit. The idea is to treat body, mind, and spirit.
While there is a large focus on ensuring comfort, how that is achieved is guided by a patient and their family. One family may want minimal visits from hospice staff and another may want frequent visits. In my experience, there are families that can openly share their needs and goals and others that desire to keep things more private. You said hospice is not a one-size- fits-all. That is true. Much like how someone lived their life is the same way they continue through the end of their life. Some patients seem to like a lot of family around them and others may not. Some patients seem to ask many questions and others barely talk. The hospice staff is there to help guide patients and families through this time.
JB: You spoke about how the very end of life is a dance of sorts, Heather. That's more than a metaphor: through hospice, music [in our case, specifically, a harp] is involved. That was a new but wonderful concept for me. I'm pretty sure that many of our readers are likewise unfamiliar with it. Can you fill us in?
HK: Midwest has a program called Music Care Services. This program is made up of music therapy and music thanatology. They use a wide range of music techniques to provide a space for patients to express feelings, relax, and often allow for patients to remember meaningful moments in their lives. Both therapies can often be a benefit to not only patients but to family members as well. Family members often see the effects of music on their loved ones and it can provided a sense of comfort. Family members can often see a smile that has not been seen in a very long time or their loved one take a deep sigh and relax.
Music therapy is different from music thanatology. I recall that your mother was provided with a visit from one of Midwest's music thanatologists towards her final days. Our thanatologists use science-based techniques to provide patients, and families, with comfort in their final hours. They arrive at a patient's house with their harp and voice in hand. Once they sit down, they respond to breathing and pulse. I think of it as the therapist responding to the room, the tone, and the now. As I said before, I feel that this transition, at end of life, is a dance between the body, the music around you, and what is to come. The presence of music at this time can make this dance lined up and balanced. I have had family members tell me that the presence of music next to the patient at this time not only eased their loved one but, provided them with a place to open their hearts to feel joy of life.
JB: Tony, the harpist, came just a few hours before my mother died. Although I wasn't present, my daughter and our caregiver were both very enthused about how peaceful it was and how my mother, pretty vegetative at that point, nevertheless visibly reacted to the music. I truly believe it eased her on her way and that gives me comfort.
I now know that there's a wealth of services provided for families after the patient has already died. That was a big surprise to me and I'd like to share this information with readers.
HK: Some of my colleagues are better equipped to answer, Joan, so I'm turning your question over to them.
Grief Services Manager, Fran Nathanson: Because the grieving process can include feelings of sadness, pain, isolation, depression, confusion, anger and resentment, our organization seeks to create a safe environment for people to connect with bereavement professionals, as well as others who have had similar experiences. We offer grief support programs to adults, teens and children at no cost, including support groups, family workshops and individual counseling. We also stay in contact with families through periodic mailings. In addition, we offer bereavement camps for children and teens. Our Glenview office organizes CampCare, which includes an overnight camp in Wisconsin for school-age children who have experienced loss, and an Adventure Camp for teens that takes them canoeing and camping along the Wisconsin River. Our Barrington location offers Camp Courage, a weeklong day camp in Ingleside for ages 6 to 13. Finally, our Chicago location runs school-based outreach services that connects students who have lost loved ones with bereavement services. Camps and children's services are also free and open to everyone our communities, regardless of whether their loved ones died in our care.
JB: Those services sound wonderful and much needed, especially for younger family members. Is hospice a growing trend? Is it recognized by doctors and insurance companies as a viable option?
Kelly Fischer, Chief Operating Officer: Yes, according to the National Hospice and Palliative Care Organization's Fact and Figures on Hospice Care, the number of patients and families served by hospice has steadily increased over the past several years. With this new generation of seniors, we are on the cusp of a sea change in how people see themselves age--quality of life is increasingly becoming a part of the discussion, not just length of life. The desire for quality of life, and demands from their Gen X caregivers, will influence and reshape tomorrow's care systems. I believe that baby boomers will demand more palliative care and holistic end-of-life care for themselves and their loved ones.