Using reflexive tools for coping and bringing closure in pediatric palliative care: A music therapist’s story of working with a terminally ill child

By Maeve Rigney

Abstract

This paper outlines the therapeutic journey of a newly qualified music therapist and a young girl with terminal cancer. As well as describing the clinical sessions with this young girl and her family, it includes personal reflections from the journal of the therapist, used as a method of self-review and clarification of thoughts and feelings following each session. The aim of this paper is to narrate the music therapy journey with Tina * from the music therapist’s perspective, and to share my thoughts and feelings on coping while working with terminally ill children. In addition to outlining the significance of using reflexive tools for this type of work as a way to improve coping skills and to work more effectively when the future with your client is uncertain, I hope to encourage further others to share their work in pediatric palliative care.

Introduction and Background

At the time of writing this paper, I was a relatively newly qualified music therapist in my eleventh month of clinical practice and needless to say, I had been faced with numerous challenges. During that, my first year of practice, most of my work occurred in the field of education, so there were two months during the summer when the schools would close and teachers, assistants and pupils took a nice lengthy break. For the music therapist in a full- time position, her work continued. At this time, the Northern Ireland Music Trust (NIMTT) employed ten music therapists and provided clinical services in the areas of education, community day centers, psychiatric units, care of the elderly, neurological rehabilitation and palliative care. Therefore, I was aware that my timetable for the summer would change, and I was excited but also quite apprehensive about undertaking clinical work in an area that was completely new to me.

I was about to begin music therapy community/ home visits to children who attended a children’s hospice in Northern Ireland. This hospice provides care and services to children suffering from life-limiting conditions and illnesses across Northern Ireland and it had made use of music therapy through NIMTT in mostly the Eastern side of the country up until that point. I received 23 referrals for children in the Western area of Northern Ireland, as that is where I was situated. As this was to be a six-week project of up to two days per week, I had to priorities the client to whom the service would be offered. Some of the referrals were for children who attend special schools that currently have a music therapy service provided by NIMTT. Therefore, they were not seen as a priority for this project. Other referrals were not considered due to the geographical location of the client, for example being too far from where I was situated, but we did our best to accommodate all referrals. Also, one referral was offered music therapy and did not take up on it. Therefore, I began work with 5 children, with a range of diagnoses and needs, and they varied in age from 4 to 12 years. One referral I received was for a girl who had been diagnosed with cancer and had a very poor prognosis. As this was my first time working with a terminally ill client, I decided to keep a journal of the journey that I was about to embark on, and I will share some of these thoughts as I reflect on my work with Tina[1]. The reason for keeping a journal was based on the idea of “reflexive journal writing” (Barry & O’ Callaghan, 2008), with an aim to use it as a means of self-review and clarification of thoughts and feelings.

The aim of this paper is to narrate the music therapy journey with Tina, from the music therapist’s perspective, and to share my thoughts and feelings on coping while working with terminally ill children. The significance of using reflexive tools for this type of work will become apparent, as a way to improve coping skills and to work more effectively when the future with your client is uncertain. Furthermore, by sharing my experience of working in pediatric palliative care in the community I will also discuss what music therapy can bring to families at a very difficult time.

Music Therapy with Tina

Tina was referred to music therapy by her community nurse from the Children’s Hospice. The information given in the referral form was that Tina was a 12-year-old girl who had a recent diagnosis of cancer. She underwent surgery to remove a growth on her arm and subsequently completed a course of chemotherapy treatment, which initially appeared successful. However, the cancer returned shortly afterwards and had spread to her lungs. Her parents, Pat * and Una* were told that her prognosis was poor, and at the time when I initially met Tina, she was unaware of the outlook. It was hoped that music therapy would be something that Tina’s siblings could engaged in with her, to create lasting memories for them to hold onto, as her illness was terminal.

Tina was from a large, loving family of 4 siblings. She was an aunt to her three-year-old niece, and was surrounded by extended family members and close family friends. On my first meeting with Tina, it was clear that the family was a very close unit. During our first session, a number of extended family members called in to the house to visit Tina, and hugs and kisses were plentiful.

Before my first session with Tina, I had been in contact with the community nurse who verbally filled me in on Tina’s situation.

If I am to be honest, I found it very hard to comprehend fully how a girl of eleven could have lung cancer. It was a disease that I naively associated with people who have abused their lungs with a lifetime of smoking, not with a girl who had not yet reached her teenage years and who had a love for sports and all things activity- based. Feelings of apprehension and fear were the main emotions that came for my diary entry prior to meeting Tina. The apprehension stemmed from visiting her in her home and being unsure if the setting would be adequate. How would I create any necessary boundaries? Would I be able to contain the emotions that surfaced from not only Tina, but any family members that decided to take part in sessions? I put these feelings to the side as I prepared myself for my first session with Tina, and I felt ready to begin the therapeutic journey with this young girl, even though I was unsure how long this journey would last.

Session One: An Enjoyable Experience

On my first visit to Tina’s home, the community nurse accompanied me to the house and I was welcomed by Una and Pat. I was invited to the living room where Tina, her older sister and her cousin were watching TV. My first impressions of Tina were that she was a tom-boy type of girl who wore a football shirt and shorts. She seemed to be in good form and told her nurse that she was feeling good today and they discussed her new medications. I then introduced myself and told her and her mother a bit about music therapy and what we could do. I brought a variety of instruments in to the room and the one the Tina seemed most interested in was a large glockenspiel. Her cousin Claire* was eager to take-part in the session and this was something that Tina was keen on also.

The session began with a hello song and Tina played the Djembe as I sang hello to her and Claire. Tina openly said that she felt happy today and was looking forward to going to her cousin’s house for the weekend. The remainder of the session was made up of structured and unstructured improvisation, and Tina played the glockenspiel for all of the improvisations. She was taking her time to explore the sounds it produced and engaging in a joint play with both me and her cousin Claire. Following a lengthy improvisation, I invited the girls to think of a word or a feeling to match the music that we just played and Tina said “friends playing and having fun”. I put the idea to Tina about recording some of our improvisations and she was very excited about this. We decided that we would do this during our next session. She seemed to enjoy making out tunes that she knew how to play on the tin-whistle, an instrument that she has learned to play in school. Tina asked if I had a tin-whistle with me, and as I didn’t, I told her that I would try to have one for our next session. During the goodbye song the cousins exchanged frequent eye contact and smiles, and seemed to get a great sense of enjoyment from their joint musical experience. I offered Tina another session for the following week and she eagerly said that she would like me to come again.

On reflection of the session, the feelings that arose for me were ones of surprise, relief and joy. I was surprised how at ease Tina seemed in engaging in all the techniques I suggested, and how engrossed she became in playing the glockenspiel. It was clear that Tina was having fun during the session. Afterwards her mum said that Tina had become very bored at home recently and was surprised that she enjoyed the session so much. This provided me with a sense of joy that I could bring some happiness to the life of Tina and her family, and I looked forward to our next session, which was scheduled for the same time that following week.

Session Two: Too Tired for Music

As I pulled up outside the house the following week, there was a different feeling about the place. Compared to last week when the driveway was full of cars and the front door was open wide in a welcoming fashion, there was but one car in the drive, the front door was shut, and the curtains in the upstairs bedrooms were drawn closed. I rang the doorbell and Una answered it, who looked tired. She explained that Tina was asleep as she had received two units of blood the previous day and because she does not like staying over-night in hospital, it was 1am when they got home. As Tina had just settled into a sleep, Una said she was reluctant to wake her and I said that this was absolutely understandable.

It was on my drive home that afternoon that I began to think that perhaps the energy and enjoyment of the first session might not be relived, and the reality of her illness sunk in. Tina was very ill. How many more sessions was I likely to have with her? Would we get to make the recordings that would be so precious to Tina and her family? I was trying to remain hopeful and positive but for the first time in my clinical practice, time was becoming an enemy and not the friend that it is to so many of my clients who flourish over time. My diary entry that evening focused on the issue of time and the challenges that I was encountering. I wondered, if I was feeling the pressures of time and how to make to most of it in our therapeutic journey, how were her family and friends feeling and coping with the element of time? Also, as far as I knew, Tina was unaware of the time she had left to live her life. Perhaps this was why the first session was full of fun and energy. She had no idea that her future might be as short as a few more weeks.

Session Three: The Recordings

Our next encounter took place the following week, and later in the afternoon. As I spoke on the phone with Dad Pat, he explained that Tina was now getting up later in the afternoon, as she was not sleeping during the night. When I arrived at the house, Tina was just getting up out of bed. As she was getting dressed, her younger sister Emily* helped me bring my instruments in from the car. When Tina came downstairs the first thing she did was give her father a kiss and he told her he loved her. Emily asked Tina if she could stay for the session and Tina said that she could. Tina said she was feeling ok today and became excited when I gave her a tin whistle that she could keep. She asked if I had brought my laptop and was eager to begin recording. She wanted to record a tune that she knew called “Circle of Friends”. We did four takes before Tina listened back and was happy with the recording. She showed great concentration and expression in her play, adding a decrescendo and ritardando as she approached the end of the piece. She showed a sense of pride as we listened back to the tune. She then initiated a group improvisation and instructed me to play the xylophone and Emily to play the smaller xylophone. Tina led the improvisation by beginning with a dotted rhythm, played on glockenspiel and jingle stick. She made eye contact when she wanted me to begin and again with Emily when she was to begin. Tina played a constant rhythm, which did not vary. She played a single note C on the glockenspiel, and I embellished the melody by playing a syncopated recurrent phrase, which fitted in with Tina’s pattern. Emily added to this by playing single notes on her instrument. After a few minutes of playing this up-beat and lively music, Tina mouthed to me to stop, and then did the same to Emily. This left Tina to finish the piece, and like in “Circle of Friends”, she slowed her playing down until she was left playing C at a sparser and sparser time interval. When she stopped playing, Tina began laughing and Emily joined in with her. She said “that sounded crazy”. When I asked her if she could pick a name for the piece of music she said it would be “The Crazy Mix” because “it started crazy and then it became a tune”. Before we concluded the session, I explained to Tina that I was going to be on leave for the following two weeks, something I had told her and her parents before beginning the programme. Tina said that this was ok. As I sang a goodbye song to her, Tina opted to just listen rather than play an instrument or sing along. There was a sense of sadness felt from Tina as I sang the closing song. I addressed this when I finished singing but Tina reassured me, or perhaps herself, that she was OK.

My diary entry that evening was very much focused on this music. On listening back to it, I couldn’t help but be drawn to the way in which Tina ended her pieces, in particular the end of “The Crazy Mix”. There was something about the final notes she played that was similar to a breath and the way in which she spread them out before reaching the final and concluding note, made me think about a final breath before passing away. Even though she did not address it, I had a feeling that Tina was now more aware of her short future. Also, twice during the session, Tina coughed up blood into a tray that she carried around with her. I asked her each time if she would like to continue with the session and she simply said “Of course, but this coughing is getting seriously annoying”. I was amazed at her calm reaction to something that seemed to me to be a horrific experience to endure, and something that was beginning to occur more and more frequently. I felt strong empathy towards Tina and her suffering but huge admiration to the way she was handling her illness. My concluding paragraph in my diary that day was centered on my feelings about not seeing Tina again for three weeks due to my planned leave. I was left with the realistic thoughts that things would very possibly be different when I returned, with a further decline in health inevitable for Tina. I would have to deal with this on my return I thought, but I couldn’t help but feel anxious and regretful about this.

Session Four: Resistance

Following my return from my annual leave I contacted the community nurse to check- in on how Tina had been over the last three weeks. She informed me that Tina had declined a lot and was now confined to bed. She had lost all her hair and a lot of weight. Her pain was being managed well but she was sleeping a lot. The nurse said that her parents would still like me to visit so I rang the house to arrange our next session. A session was planned for Friday afternoon that week. When I arrived at the house that afternoon, Tina’s younger sister Emily greeted me at the door. She told me that Tina had just woken up. Emily offered to ask her whether I might go up to her room.

While Tina was adamant she did not want any music, she agreed that I could go up for a chat. When I went up to her room, Tina was lying in bed and was merely a shadow of the girl that I met three weeks previously. As soon as she saw me, she said again “I don’t want any music”. I told her that that was fine and offered her a relaxation session. She said she didn’t want that either. Tina seemed very distant and reluctant to engage in any conversation or interaction of any sort. She avoided eye contact with me and continued to watch her TV. I couldn’t help but feel I wasn’t welcome today and as a last resort I asked Tina if she would like to listen to the tracks we recorded in the previous session. This seemed to be the first thing that interested Tina. She looked at me and said that she would like them on a CD to listen to in her own time. I took that as a positive but then Tina said that she wanted me to burn the tracks onto CD downstairs and to leave the CD in the kitchen. I respected her wishes and took my leave, not knowing whether to acknowledge my parting from her as possibly being the last time. I simply said “Ok Tina, I can still call in to see you for two more weeks so I’ll see you soon”. She said goodbye to me and I went downstairs and burned the CD as instructed to. I spoke briefly to her mum about this. She opened up that it was difficult to know what Tina was feeling or how she was feeling, as she wasn’t talking much about her feelings to anybody. She expressed gratitude at having the recording. We then discussed if she felt I should continue seeing Tina. I made the point that music therapy might help her to open up if she wanted me to visit again. Una said she wasn’t sure if it was worth me traveling the 60 miles from my home incase the same thing as today occurred again. I assured her that this was not an issue and that I would be in touch next week to arrange another visit hopefully.

My drive home that evening was full of emotion. I was feeling guilty. Very guilty for my absence over the three weeks when I was on leave. The decline in Tina’s health was shocking. Thinking about her and trying to understand her feelings, it seemed that Tina was angry and confused and her way of dealing with these feelings was to keep them to herself and to try block people out. The guilt came from Tina’s resistance and reluctance to engage with me in any verbal or musical interactions. Perhaps she was feeling too weak, perhaps she was in pain? I’m not sure how she was feeling that afternoon but what I felt projected onto me left me feeling guilty. Guilty that I hadn’t been there over the last two weeks when she was getting worse, weaker and progressively more sick. My feelings were difficult to take, and that along with thinking that we may not have another session made me feeling deeply sad and like what I could offer Tina was not good enough in some way. I felt helpless.

Session Five: Emily and I

Following clinical supervision the following Wednesday, these feelings were addressed and acknowledged and I felt ready to call the house to see if I could see Tina again. I spoke to a tired sounding Una the following morning who said I was very welcome to call in. We discussed that if Tina would not like a session, then perhaps Emily would benefit from an individual session to explore her feelings surrounding Tina’s illness and how she was coping. Una was very happy with this suggestion.

When I came for the session Tina had not long fallen asleep. As previously agreed upon I offered a session to Emily. Emily cheerfully joined me in the sitting room along with their 3-year old niece Amy*. I suggested to Emily, whom I knew enjoyed singing very much, that we could write a song. A song either for, or about Tina perhaps? Her face lit up and she thought this was a great idea. Immediately she gave ideas for the song, a song that would be about Tina, and how she’s feeling. A song called “You’ll never walk alone”, drawing on Tina’s love for Liverpool Football Club and aptly, a line that speaks a thousand words about how this young girl felt about her sister.

After we recorded the song, which I sang with Emily and with Amy contributing in her own way, Emily decorated the CD and CD cover, which was full of colour and love hearts. She immediately wanted to show the song to her mother, so we concluded the session after 50 minutes.

My journal that evening focused on the joy of being able to extend the service to the family as a whole, and even though Tina did not take part in the session, the song was for her and Emily was eager to play it for her, something they would do in their own time when I was not there, but perhaps it would help them to interact with each other and help Tina to understand who her little sister feels about her and her situation. I felt pleased that I could help facilitate this and looked forward to what next week would bring, even though it was to be our last session, given that the 6-weeks were coming to an end as schools were about to recommence.

Session 6: Over Without Saying Goodbye

The following week, as per the last few Thursdays, I phoned the house to see what time suited me to call the next day. Pat answered the phone and explained that Tina’s night had now become day and visa versa. He said that as she was sleeping for most the day, it was not likely that I would see her tomorrow. I then asked if Emily would be there but she was visiting her cousins for a few days. I was left with the reality that this was to be the end of our journey together, and because of the aggressive nature of Tina’s illness, her sleep was important when she finally did get to sleep. Therefore her parents thought it best that she not be disturbed.

I understood and appreciated their wishes but I was left with feelings of regret that there was no more I could offer the family. I also felt saddened that I did not get to properly terminate with Tina and this did not feel “right” to me.

As my work then returned to the schools that I worked in the previous academic year, I had to find ways to bring closure on this case. This is when I began writing this article. I thought that by writing this story down, reading my journal, acknowledging and accepting my feelings, I would be able to bring closure to the case. Then, on my way home from one of my schools on a Monday afternoon, I received a call from the community nurse who I had met during my first visit to Tina’s home. She informed me that Tina passed away the previous night in the presence of her family at home. It was her 12th birthday the day she died.

Reflection and Conclusion

This is a case that even now, many months on, I think about frequently. Pavlicevic (2005) asks the question, “How do the music therapists themselves cope?” (p. 17). Before beginning my journey with Tina, I was aware that my coping skills would be challenged differently to any tactics I would have had to employ in the past when working with emotionally difficult cases. Therefore the idea of keeping a reflexive journal seemed to be something to help me label and acknowledge my emotions and to reflect on how well I was coping with everything. “Critically reflexive practice embraces subjective understandings of reality as a basis for thinking more critically about the impact of our assumptions, values, and actions on others” (Cunliffe, 2004, p 407). Keeping a journal was initially an experiment, but on reflection, I feel that it heightened my awareness of my own feelings and the therapeutic processes with Tina, as well giving me closure on the case, as I was unable to terminate as I normally would with other clients.

Working with terminally ill children taps into every emotion possible and for me, it had me feeling that all of my resources were drawn upon in order to give Tina every opportunity to engage in whatever way she was able to. And then when Tina was too poorly to engage and I was working in a systemic way for the first time, the perspective shifted again as you were dealing with very different emotions, with family members imminent loss and grief being the ones at the forefront. While reflecting on the journal, it became apparent that one of the biggest issues I was faced with while working with Tina and her family was that of time. Time ran out for me as schools were re-opening, and time ran out for Tina when she sadly passed away. So how does a music therapist cope with endings when it could happen at any point while working with a terminally ill client? Does each session in itself need to end with some form of permanent closure? How do we acknowledge that when a young girl is unaware of her impending death?

All these questions remain with me, and I may not have any answers until I begin work with another unfortunate family to be faced with the same situation. What I can take from the work I did with Tina and her family is the knowledge that you can bring something special to the client and their families, at a very difficult and emotional time. As with what Daveson and Kennelly (2000) say, music therapy can offer comfort to parents and the families of terminally ill children. Even at times when I felt somewhat helpless in what I could offer the family when Tina could no longer participate, I knew that the CDs that both Tina and Emily made would remain as a legacy for the family. These recordings survive as musical memories and creations, and this can facilitate the process of having a continuous bond with the child (Lindenfelser, Grocke & Mc Ferran, 2008). These authors also comment that by involving other family members and friends in music therapy sessions, it can provide opportunities for “fun, improved relationships, soothing experiences, creativity, multi-sensory experiences, and enjoyment” (Lindenfelser, Grocke & Mc Ferran, 2008, p. 341).

Music therapy can improve the quality of life of people with terminal illnesses, as it can create supportive interactions amongst families, and help patients connect with and express emotions without the need for words (Hilliard, 2003; Aldridge, 1999; Amadoru, & McFerran, 2007). Everitt and Nall (2005) developed this thought further by documenting that providing music therapy in the home can offer terminally ill children and their families, opportunities to develop their self-expression and communication further, and enables them to “share special times together” (ibid, pp. 152).

As a final word, working with Tina and her family has given me new perspectives on my clinical work. I have learned that working with a family, as a whole, through the music therapy process is invaluable, when the future is unpredictable and family members are emotionally vulnerable. Moving music therapy from the hospice and into the community, reaches “into the homes of those children who are most in need of the creative and therapeutic power of music” (Nall & Everitt, 2005, pp. 158). Reflexive tools can be highly beneficial when you are working in a new clinical field for the first time, and it can aid how well you cope with the challenges that this type of work can bring. I also believe that the process of writing and reflecting helps to bring closure, when the last phase of therapy as we know it, is not possible.

I look forward to broadening my experience of working in pediatric palliative care, and I hope that documenting my thoughts and feelings from this case study will give others the desire to share their clinical work. I am eternally grateful to Tina’s family for giving me the opportunity to work with them during this difficult time, and for consenting to the publication of this paper. My short intervention with Tina and her family has inspired me to continue working in pediatric palliative care and sharing the joy of music therapy with children and their families.

Note

[1]Denotes that the client’s names have been changed to protect their identity. Informed consent has been obtained to publish this case.

References

Aldridge, D. (1999). Music Therapy in Palliative Care: New Voices. London/Philadelphia, Jessica Kingsley Publishers.

Amadoru, S., & McFerran, K. (2007). The role of music therapy in children's hospices. European Journal of Palliative Care, 13(3), 124-127).

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Daveson, B., & J. Kennelly (2000). Music Therapy in Palliative Care for Hospitalized Children and Adolescents. Journal of Palliative Care, 16(1), 35-38.

Everitt, E., & K. Nall (2005). From Hospice to Home: Music Therapy Outreach. In M. Pavlicevic (Ed.), Music Therapy in Children's Hospices. London: Jessica Kingsley Publishers.

Hilliard, R. E (2003). The effects of music therapy on the quality and length of life of people diagnosed with terminal cancer. Journal of Music Therapy, 40, 113-137.

Lindenfelser, K. (2005). Parents' Voices Supporting Music Therapy within Pediatric Palliative Care. Voices: A World Forum For Music Therapy, 5(3). Retrieved September 27, 2011, from https://normt.uib.no/index.php/voices/article/view/233/177

Lindenfelser, K., Grocke, D., & McFerran, K. (2008). Bereaved parents' experiences of music therapy with their terminally ill child. Journal of Music Therapy, 45, 330–348.

Pavlicevic, M. (2005), "Introduction", in M. Pavlicevic (Ed.), Music Therapy in Children's Hospices (p. 15- 21). Jessica Kingsley Publisher: London and Philadelphia.