We, the music therapy community, have a certain way of talking about our work in end-of-life care, and a certain way that we generally do not talk about our work in end-of-life care. End-of-life music therapy clinical work is often described as “so beautiful” and “so spiritual,” I think more so than music therapy in its other clinical iterations. We like to talk about the lightness, the tears of much-needed release, the uplifting, transcendent beauty of music in the moments leading toward someone’s death.
But that’s only a portion of the work, isn’t it? It’s lovely when you can have a beautiful, spiritual experience accompanying a person and/or their family on the way to a “good death,” but so often that isn’t the way it happens at all. Some people never come to acceptance. Some should never have to. Some do, but suffer terribly anyway. Sometimes we, the health service providers, are disturbed by what we see, and sometimes our patients and families do not gift us with their grateful tears and acceptance.
Furthermore, people who are terminally ill (and their family members) don’t suddenly become free of personality issues that might have been a part of them before they were ill. Add in the stress of grief and loss and whatever issues we, the health service providers, have floating in the interpersonal space as well, and sometimes there are conflicts. Sometimes we develop great affection for our patients and their families, but sometimes we are not able to grow to like them. Sometimes we clash with them. Sometimes we get pulled into painful transference and countertransference dynamics and the whole circumstance becomes quite unpleasant. But we don’t really talk about that stuff — not often, anyway — and especially not in end-of-life care.
I think of our end-of-life music therapy discourse as staying somewhere along the lines of Take Me Home Country Roads. I would be surprised if any music therapist working in end-of-life care hasn’t used this song at least once, so I’m counting on the idea that you can picture this session easily: The patient sits with beautiful imagery about going home, heaven, connecting with nature and the cycle of life, being called, and a light-hearted joke about moonshine along with the teardrop (only a drop!) in his eye.
And yet I have sat with many patients who are nowhere near that place, and I know I’m not the only one. To extend the 60’s-70’s pop-folk metaphor, let’s talk about The Boxer. I’ve had a lot of requests for this song, or other ones like it, over the years. Here we’re talking about squandering, lies, running scared, hiding, poverty, prostitution. There’s going home too, but it’s a different kind: It’s a sort of giving up, broken and bleeding. There is anger and shame, and the fighting feels frantic and indiscriminate.
When do we write about this? When do we talk about this? Leafing through the books on my bookshelf, looking at the literature that describes music therapy end-of-life care, I read a lot of inspiring stories. But I don’t read a lot about darkness, conflict, resistance, ugliness. And yet I know that it is there and that it can’t be truly separated from this work.
Why do we feel like we need to white-wash? We’re music therapists after all — it’s our modality that spurred forward so many movements of defiant rebellion, chaos, deviance, sexuality. It’s our modality that has scandalized the status quo again and again, from Stravinsky to Elvis to the Rolling Stones to Lady Gaga and Lil’ Kim. It’s our modality that holds collective rage and anger, and has done so easily, often, and effectively — from chain gang music to Judas Priest. We can get a long way from Kum Ba Ya. And yet in end-of-life care I don’t think we do; or when we do we don’t really talk about it.
I remember a patient that I saw years ago in the ICU. He was a kind, friendly man in his late 60’s, a huge Bob Dylan fan. His disease process was advanced; he was very much on death’s doorstep and it was fairly clear that he wanted to let go and stop suffering. He also deeply loved his wife, who was ready to do whatever necessary to motivate him to stay alive. In one session, the tension between them constellated around a conflict over how active he should be in the music. He wanted to lay back and relax, maybe cry a little bit, maybe drift off to sleep. She wanted him to sing and play the shaker and be active in a way that would lead him toward rehabilitation. She pushed, he pushed back a little bit, she pushed more, he snapped at her, she didn’t back off.
Then he turned to me, and asked that I play Don’t Think Twice It’s Alright. I knew the song well, and the request took me by surprise, but I played it. And then in the music I felt his bitterness towards his wife hit me, and the room, like a punch in the stomach. In those lyrics, I heard the way that he wanted to hurt her, and I think she heard it too. I felt myself singing the words like this patient was my ventriloquist. This was the way that he could express his anger and aggression, and the music and I were going to hold it for him. As I sang, I felt the hostility in the song more than I ever had before. I’m leaving, it’s your fault, you can’t stop me, and I’m not going to miss you, it said. The threat felt so real. I’m going to obscure my rage with sarcasm and my sarcasm with pretty chord progressions and finger-picking, it said. But none of us were going to miss the underlying message. And I didn’t diffuse the anger with that song, and I didn’t try to diffuse it with any song after that. I don’t know if it was possible, and I don’t think it would have been the right thing. Sitting with it was excruciating… we were a long way from any peaceful Country Roads, although something important was happening. And although the experience was memorable and meaningful for me as a clinician, the words “beautiful” and “spiritual” are not at all what comes to mind.
What of our desire to make this work into all lightness and beauty? Why is it hard for us to embrace the darker realities of our work? I am very interested in this question, because I wonder if we feel it is unnecessary, or we think it’s our job to help people avoid it. Do we think that sessions where we don’t get to beauty and acceptance are failures? Or maybe we are scared of darkness and anger ourselves, and we don’t know how to handle it or talk about it. And yet these aspects are part of life; they are certainly part of death. When we are only willing to travel with our patients on the lighter side of the path, or only willing to stay with them if they will allow us to pull them there, then we are abandoning them. “The poorer quarters where the ragged people go” comes to mind.
Death is frightening and chaotic and frequently grotesque — even in the most perfect stories of controlled pain, minimal suffering, and full acceptance, these dark qualities of death will lurk, maybe present only in our relief that we didn’t see them more. Our patients and their families need us for a reason, and that reason isn’t just family bonding and life review. I am fairly certain that part of why we are avoiding this stuff in our discourse is because we are also avoiding it in our clinical work, at least some of the time. How can we, as a community, tap more into the darker powers of music to aid in our presence to the darker aspects of our patients’ experiences? Our modality, our music, can take us so much farther, and so much closer to the full truth of our patients’ death experiences (meaning both light and dark) than we have allowed it to.