I am watching you from this ﬁeld of grass
You can see me but you don’t hear me
I can see you talking but only hear myself
If you noticed me you’d run away
Theresa, Sobell House, 2012
When I received an invitation to speak at the last Medicine Unboxed event in Cheltenham, UK, I was immediately struck by the title for the weekend: voice. It’s a word that permeates throughout my work perhaps more than any other, and it’s a word that carries deep signiﬁcance for many of the people I work with as a music therapist. Here’s an interesting exercise; try thinking of some of the words you might use to describe voice. How soon do you move on from descriptors such as “singing” and “speaking” and “quiet” or “loud” into “powerful” or “silent”, “lost” or “rediscovered”, “unheard”, “unwelcome”, “abandoned”? And, of course, this is just the tip of the iceberg. This word is impossible to disentangle from pretty much every human emotion and experience. Even in complete and perfect silence there is still a voice; and we’re listening to it.
At Medicine Unboxed I played the recording of a woman I had worked with, whom I’d called Eileen. I’d met her in a care home a few years ago and she’d been referred to me because, in the words of her referrer, “she’s driving us all mad”. Eileen was 90 years old and was, I was told, suﬀering from late stage dementia. I found her in one of the day rooms, rocking slowly back and forth in a wheelchair, eyes closed, mouth wide open saying “La, la, la” constantly in a voice that ached with loneliness and despair. They’d asked me to see her in the hope that a music therapist might help her ﬁnd a way to be quiet. Her voice was too much for them to bear.
I took her to her room and for a while we sat opposite each other as I joined in the dialogue with Eileen, repeating her “La, la, la” at her pitch and at her pace. Eileen’s eyes were still tightly shut and I had no idea how she was responding to me; or, indeed, whether she could hear my voice at all. After a short time I moved a little closer to Eileen, played a simple open chord on my guitar and began to sing her words, “La, la, la” using a single note. The quality of my own engagement changed within seconds; I felt more open, a little revealed and as a result, perhaps, my willingness to be present and alongside Eileen became more apparent. Eileen responded almost immediately, her eyelids ﬂickered. She cleared her throat and began to sing her own song with me, “La, la, la”. We met on ﬁve further occasions and we always sang together. Her repertoire expanded with each session as she explored her own vocal range and from time to time sang new words, almost always the names of other people. In our last session together, shortly before she died, Eileen sang uninterrupted for 40 minutes.
When I have shared the recording of this session with colleagues and health professionals, it has provoked long debates about music and the brain, fuelled by evidence emerging from neuroscience about experiments with people engaged in active music making. It’s all fascinating stuﬀ, of course, and helpful in many ways. But I have a much simpler way of explaining my experience with Eileen. By answering Eileen I could let her know that I could hear her and that I was listening; her voice moved from unwelcome and dismissed to heard and acknowledged. By singing her words I was able to communicate something more: the importance of her words, exactly as she was saying them. Eileen’s voice moved from heard and acknowledged on to welcomed and respected.
Today, perhaps more than ever before, there are loud voices all around us, angry voices demanding that we show our ability to care for vulnerable people with respect, integrity, and compassion. It’s our primary duty; nothing else works for the patient or the carer if we don’t practise in this way. And isn’t this exactly what Eileen was trying to tell everyone working at the care home where she spent the last 2 years of her life? “La, la, la…this is the voice I’m left with, why won’t you listen to me?”
When working in palliative care environments with people who are dying, I have encountered an extraordinarily wide range of voices. I have become familiar with voices that are frightened, shocked, or angry, as well as those that are reconciled, peaceful, and hopeful; and my work involves listening to and hearing them all. It became apparent to me very early on in my work at the hospice that music therapy sessions would be an opportunity for people to talk as much as a chance to play music. I knew that creating music would provide a powerful channel for emotional expression and I sought to encourage my clients to stay in what we would frequently refer to as “The Musical Space”, where the rhythms, melodies, and harmonies we created could become a representation of the words themselves. Here, I would often meet the silenced voice, the frightened voice, and perhaps most frequently the lost voice.
The words that began this essay come from a song written by a client, Theresa, a woman in her late 50s who was ﬁnding the last few months of her life unbearable. In our ﬁrst session she had said almost nothing at all, preferring instead to sit at the piano playing single, repeated notes with one ﬁnger as I supported her by providing a simple harmony. When I asked her how she was feeling she thought for a long time before replying, “invisible”. In our second session she had told me how much she wanted to die. I’d probed a little and she replied: “They think I’ve disappeared, I must be dead already.” By our third session a more creative dialogue had opened up between us and by placing some of her words into a musical framework Theresa was able to not only express but also to explore some of her more diﬃcult feelings in a helpful way. “But I love you all”, she wrote in her second verse, “And I watch you all, I am always here, guarding you. You can call on me, you can call on me.” By reading the words back to Theresa I was able to help reinforce her sense of being acknowledged and listened to. But I believe the transformative moment in our brief time together came when we recorded the song with Theresa singing. This had taken a considerable amount of negotiation in supporting her to overcome some of the judgments she had been making about what she was saying and how she was going to say it. When Theresa ﬁnally listened to the recording of her song she cried, something she hadn’t been able to do for many months. Then she said: ”There, it’s done, it feels good to tell the truth”. For Theresa, ﬁnding her voice again had also revealed some of the reasons why she had come to believe that it had disappeared in the ﬁrst place.
Helping patients to ﬁnd their voice is not the exclusive preserve of those of us who work in palliative care environments. But perhaps the very nature of these environments does invite us to seek opportunities to model and develop approaches that are both creative and compassionate. Perhaps too it’s easier for us to place “the patient’s voice” a little closer to the top of the complete care package simply because we’re asking such big questions of patients, as they are of themselves. But even then it can still be one of the most diﬃcult things to do. The Liverpool Care Pathway was, I believe, a well intentioned system designed to help give patients and their families their voices at a time when they most needed to be heard. Could the failure in the successful, long-term implementation of such a system have something to do with the way that we are listening? This may seem to be a simplistic view of a very complex system but the Liverpool Care Pathway, like all systems, can only provide the framework. The rest is down to us.
Looking through the list of the many hundreds of songs that have been created by my clients over the past 10 years or so, I begin to notice a striking feature. Almost all of these songs were created at a time when the writers were at some level experiencing discomfort and pain. And yet very few of the songs address these issues at all. Instead, the titles—often the ﬁrst line of the songs—reveal patients reaching out to us, singing out in fact, and asking us to really listen to their voices. “Are you listening?”,
“Can you hear me when I call?”, “Is there anybody there?”, “Make a space for me”, “Stop, and hear me”, and the list goes on. Many of these songs are addressed to these patients’ own families and loved ones, but I do recall that during the writing process it felt as if these patients were talking to me too. A music therapy colleague recently shared a song that had been created by one of her clients whilst on the inpatient unit. The patient’s words are an invitation to us all:
It’s simple, so simple
Don’t tell me how I feel, ask me,
Don’t run oﬀ half way through, follow through Don’t think you know how I feel, Just ask, it’s simple
When we are responsible for the care of those who are suﬀering we have no choice if we want to do it well. We have to help our patients to ﬁnd their own voices in whatever way we can. How we then listen and respond will have a profound impact; not only upon the important outcomes that we measure and monitor but also upon the very human experience of needing and receiving care. And, importantly too I would argue, upon ourselves and the quality and safety of the care that we all aspire to deliver.
Bob Heath has worked extensively as a music therapist in Palliative Care and Mental Health and is a lecturer and supervisor. He is published and has presented work at a range of events including The Hay Literature Festival and Medicine Unboxed. He works at Maggies Cancer Care Centre in Cheltenham and has a small private practice in Berkshire
Patients’ names in this essay have been changed to protect patient conﬁdentiality.
This article was originally published in the Lancet, Vol 384 September 13, 2014. It can be found here