In November, my hospital sent me to attend the National Seminar given by CAPC, the Center to Advance Palliative Care. My experience at the conference ended up being personally impactful. I have always felt, on an intuitive level, the profound differences between working for a hospice agency and a palliative medicine team in a hospital, since I changed treatment settings in 2008. However, attending the conference stimulated a lot of thoughts for me about the uniqueness of palliative medicine in a medical hospital and a music therapist’s role there. My impression of the music therapy end-of-life care scene is that we tend to focus on the hospice part of the greater palliative care umbrella, but there is so much more for us to know about, and so much more for us to offer.
My physician colleague, Dr. Bridget Earle, and I created two posters about music therapy and its use within an inpatient palliative medicine consult team, and these were accepted for presentation at the conference’s research poster session. November, of course, is conference season, and the CAPC Seminar began 5 days after the AMTA Conference, on which Jillian has published a review. The conferences were, of course, quite different from each other. There were over 900 attendees at the CAPC National Seminar. There were several inspiring keynote and lunch lectures in addition to concurrent sessions. The poster session had an open bar and delicious catering stations. Between sessions you could always stop to pick up (free) bottled water, soft drinks, coffee, tea, fruit, and yogurt. They also had “office hours” times, where well-known experts in the field were available to meet and offer advice or guidance to other professionals who were looking for support. Every morning I got an email reminding me of the day’s schedule.
Although there were hospice workers at this conference, the emphasis of palliative care is broader than hospice, and really also broader than end-of-life care. The sessions that I attended focused on palliative care as a service for people with serious illnesses, not necessarily dying imminently. There were a lot of conversations about the stresses of representing palliative care in medical settings, covering issues that I have grown accustomed to over the years. These include: handling the difficulty of talking to patients and their families for the first time about the seriousness of their condition, dealing with other hospital team members who are afraid of what they think your team represents, making a case to the general hospital community that palliative care is an important service. (In this last way, the struggles of palliative care professionals are very similar to the ones faced by music therapists.)
Already the differences between hospice and inpatient palliative care are probably clear. Managing symptoms, processing feelings, and helping family members to connect are still relevant, and often dealing with the moments leading up to death is also still important. But palliative teams are usually in the position of delivering bad news, which is a huge job with tremendous stressors connected to it. Palliative teams are often the ones who are tasked with telling the patient and family, for the first time (and sometimes the second, third, and fourth time too, depending on how many times it takes for that message to come through), that treatment isn’t working, that the patient will never return to the previous level of functioning, or that they are nearing the terminal stage of their illness. Sometimes these messages are being delivered while other professionals are giving contradictory messages. Sometimes patients, family members, or other professionals who don’t understand palliative care will yell and bar palliative care from the room. In many cases, the ideal outcome for palliative medicine patients is that they are discharged to hospice, but in my experience (at two different hospitals), only a third of the cases end that way. A third die in the hospital, often in less-than-ideal ways, and a third go home or to rehab, with the expectation that they will be back.
I’m sure music therapists who are reading this, and maybe learning about this part of palliative care for the first time, are already imagining where we, as music therapists, can help. And you would be wise to be thinking about that. At the CAPC seminar, I learned (from Diane Meier, director of CAPC, in her keynote address “Palliative Care Everywhere”) that palliative care has reached its tipping point. Ten to fifteen years ago, it was a new innovation, but now it’s an established field. We have many palliative teams in hospitals, rising public and professional awareness, supportive policy. The prevalence of palliative care in U.S. hospitals with 50 beds or more has nearly tripled since 2000, reaching 61 percent of all hospitals this size. This is an area of medicine that is booming. And we, as music therapists, can help. We know that we can effectively serve seriously medically ill patients and their families. Now is the time for us to get in there.
There are obstacles, of course. As I mentioned earlier, there were over 900 people in attendance at the CAPC Seminar. I feel confident telling you that I was the only music therapist there. As I mentioned, my colleague Dr. Earle and I presented two posters — one illustrating the research we conducted on the use of music therapy on our team, and the other describing effective procedures for starting a music therapy program. We had some demoralizing interactions in front of those posters. One woman checked them out, asked me if I was a music therapist, and when I said yes she started laughing hysterically. When she finally calmed down her first comment was, “How did you get them to pay you a salary?” I eventually asked Dr. Earle, who is well-known in the CAPC environment, to stop introducing me as a music therapist, because as soon as people heard “music therapist” they would shut down. I’d hear, “That’s so sweet!” or something similarly condescending right before the person would tune out from any kind of conversation with me. We made remarkably better headway (we were both sort of shocked by the difference) when she started introducing me as a psychotherapist who also does music therapy: suddenly, people were interested in hearing more. I don’t know why this was the case, but it’s pretty discouraging.
And yet, the hope is still there. I had several opportunities to explain some of the areas where music therapy can fill a unique area of need for palliative care teams, and I saw the wheels turning for a few people as I explained. Our posters were situated next to another poster manned by the chair of the Humanities and Spirituality Special Interest Group for the American Academy of Hospice and Palliative Medicine, and he told me that his committee is in the midst of surveying its members about their use of the humanities (including music therapy) for care of their patients. Perhaps most exciting of all, in their Call for Papers for the 2015 National Seminar, CAPC specifically requested proposals on the topic of music therapy.
Here are a few additional links if you’d like to start learning more about what’s happening now in palliative care: