I conducted an internship with Hospice Austin in the Bereavement Services Department in the summer of 2013. I am currently a graduate student in the Department of Anthropology, and am writing my thesis on end-of-life care, decisions regarding hospice care, and what effects these decisions may have on family dynamics. My internship thus served two functions: it would be a form of direct and participant observation to further guide and shape my thesis research, but it would also be an opportunity to reach out to those who really are somewhat invisible in our society. I decided the internship would allow me to conduct preliminary research, but would also be an opportunity to give back to those I was studying. The internship program in the Department of Anthropology gave me the opportunity to do both.
The modern hospice movement began in 1967 as an attempt to redress the impersonal and sometimes inhumane care of a dying patient, and thus a major focus of hospice care has been the emotional needs of the dying patient and their family. The hospice movement in the United States was spearheaded by Elisabeth Kübler-Ross in and represents a more humane approach to death, as well the beginning of a dialogue concerning death and dying in the United States. In the early 1980s, there were over 1,000 hospices but many Americans were unprepared to choose hospice when thinking about the end-of-life due to the treatment-driven nature of our culture. The high value which hospice care places on comfort and relief of suffering conflicted with the dominant model of mainstream biomedicine with its emphasis on high-tech, treat-and-cure approaches.
Hospice care, as defined by the Hospice Association of America (HAA), are generally agencies that “provide and support palliative care to people at the end of life…[and that] focus on comfort and quality of life, rather than curative treatments. The goal of hospice is to care for dying patients via symptoms management in hopes of alleviating pain and maximizing comfort at the end-of-life. Hospices promote patient- and family-focused care and strive to maximize patients’ quality of life, rather than quantity. However, emotional conflicts, spiritual questions, and struggles related to coping with grief are also a part of hospice services, including bereavement services. Hospice services include nursing care, medical social worker services, physician services, counseling, inpatient care, medical appliances and supplies, physical and occupational therapies, bereavement services for families, and more. Hospices thus employ multidisciplinary teams of physicians, nurses, home care aides, social workers, chaplains, therapists, and counselors.
Hospice Austin was established in 1979 as the first hospice in Central Texas. It was established by a group of doctors and citizens, for the purpose of serving families. Hospice Austin is a nonprofit organization whose mission is to ease physical, emotional, and spiritual pain of any person facing the final months of a serious illness by providing care, education, and bereavement support. In turn, Hospice Austin provides care to anyone who needs it, regardless of illness or financial situation. As they are a nonprofit organization, all resources go back into Hospice Austin services. In other situations, Medicare, Medicaid, and most private insurance companies cover the expenses of hospice care. In 1986, Hospice Austin became Medicare-certified and expanded its services to surrounding counties.
I volunteered in the Bereavement Department, so most of my experience with hospice care had to do with everything that happens after death. Office work and other menial tasks were part of my experience, but I also got the opportunity to take part in F.I.G. (Families In Grief, a support group designed for families who have had a family member die in the past six months), make bereavement calls, facilitate a support group, and be a counselor at Camp Brave Heart. The main focus of my internship was the support group facilitation and Camp Brave Heart.
A few months into my internship, I was asked to help co-facilitate an 8-week support group for individuals who had lost a parent. I was the youngest person by a good twenty years, which made for an interesting situation: would they trust me? Would they take me seriously? To my surprise (and delight), the individuals did trust me and did take me seriously. Part of this might stem from the fact that I have experienced multiple deaths in my own lifetime, and after hearing this, the individuals saw me as “one of them”, as opposed to the outsider anthropologist. It was heart-wrenching at times, but also very cathartic. The group members were really getting something out of this.
Camp Brave Heart is a three-day retreat for children ages 6-18 that had lost a family member recently. Most family members had died within the last year, though they accepted “special cases”- children who were still exhibiting signs of grief even though their family member had died over a year before camp. Camp Brave Heart combines a summer camp-like atmosphere with therapeutic sessions. I was a counselor for the yellow group, children ages 9-10, with three other counselors. Between us, we had about 30 campers. Each day had a different set of activities, and two therapeutic sessions were squeezed in each day between the fun activities.
This was a very interesting experience. At our first therapeutic session, most of the kids did not seem to fully grasp why we were there- they were just ready to go to the pool. Everyone was fidgeting, bored, and did not talk much (about grief, at least). We asked them to share who had died and what they loved about them, and most responses were something along the lines of “My dad…I miss him”. This was very different from the first session of the support group I facilitated. Where the adults dove into their experience with death and all the emotions that accompanied it, the children rarely referred to their own emotions. However, though the children did not necessarily talk about their emotions, I could tell this started to bring up feelings that the children possibly had not dealt with yet, or feelings they did not want to have. But, for the most part, their attention was elsewhere. The next two days included a few therapeutic sessions, woven into a day filled with camp-like activities. It helped the campers remember they were there to have fun, but we also had work to do, so to speak.
The children’s realization of the purpose of the camp became apparent on the last day, during the last ceremony. All campers gathered together where we ate meals, and what ensued was a group funeral, of sorts. Each camper was called up to the microphone, said the name of their loved one, lit a candle, and then joined the rest of their group in front of the pictures frames (including a picture of the deceased) that they had made during one of our therapeutic sessions. I was standing by the picture frames, and one by one the campers came up to me with tear-filled eyes. At one point, I had seven children hanging off of me, all clenching me while crying (and at this point, I was crying as well). This really seemed to solidify the function of Camp Brave Heart.
My internship with Hospice Austin allowed me insight into hospice care generally, and Bereavement Services specifically. I was able to work directly with the bereaved, as well as perform what seemed as menial office tasks, which actually allowed me a glimpse into the organization of hospice care and what it entails. Considering that my thesis work is concerned with hospice care, this was an amazing opportunity. I was able to indirectly give back to those I was studying, and learned a lot in the process. Though at times it was difficult emotionally, it was cathartic. It was more than an internship, it was an experience.