[Reflections on Practice]

A Struggle Within: The Case Study of Kenneth

By Joy Allen

Abstract

Music therapy is unique in its ability to address physical issues such as pain along with emotional and spiritual issues faced when living with a chronic illness. This case study describes in-patient music therapy sessions with Kenneth, a 31-year-old man diagnosed with Burkett’s lymphoma and HIV. A biopsychosocial approach was taken throughout the seven months of recurrent music therapy sessions, focused on pain management, emotional and spiritual healing, and family dynamics. Phases in the treatment process with Kenneth and his family are described along with personal thoughts and feelings of the therapist. As working with medical patients is often supportive in nature, boundaries can become fluid. The inherent parallel process became a powerful tool to facilitate awareness and healing for both client and therapist.

Keywords: Cancer, music therapy, pain management, bipsychosocial

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Introduction

Music therapists working in medical settings frequently treat and assess patients within single sessions, focusing on behavioral and/or physiological responses. However, life and health are not always amenable to a single prescription or type of intervention. Complex referrals occur, and the perceived panacea of a “musical quick fix” is neither achievable nor even tenable. The therapist, in an effort to minimize the impact of disease on the physical and emotional development of the family and the patient, must assess and explore reactions and experiences to gain insight as well as confront challenging situations. When working at this advanced level, there are inherent risks. Sometimes, a therapist is going through something very similar to a client--perhaps unknowingly--whether it be grieving a loss, looking for answers, a seeming loss of control, or other emotional and/or spiritual pain. One can unconsciously strive for a “musical quick fix," in which a happy ending is provided for one's own grief or related life challenges. We can unknowingly place these needs onto our clients. However, when countertransference arises, is acknowledged, and worked through, aspects of health can be restored. In the following case study, I share my experiences working with one such complex referral.

This case study describes the emotional struggles of a sick patient with Burkett’s lymphoma and HIV, as well as the emotional struggles and challenges I faced in treating him. Cancer temporarily or permanently disrupts lives, dreams, hopes, careers, aspirations, integrity, and a sense of security (American Cancer Society, 2012). Feelings are played out in ways that are unique to each individual and each family. Added to this is a diagnosis of HIV, which carries an overwhelmingly negative association and stigma (Brown, Macintyre, & Trujillo, 2003; Galvan, Davis, Banks, & Bing, 2008; Parker & Aggleton, 2003). By using music to address “health” we recognize that multidimensional aspects of self and multidimensional techniques are needed to access, explore, recreate, or create a new way of being (Allen, 2007). The purpose of music therapy with patients is to address those factors impairing survival from cancer – feelings of helplessness, lack of a fighting spirit, fatigue, and difficulty expressing feelings, anger, anxiety, distress, and depression (Allen, 2007).

Kenneth, a single 31-year-old African American schoolteacher, was initially admitted to the hospital with intractable pain, extreme anxiety to the point of hyperventilation, and a left axillary mass. A biopsy was performed with results consistent with Burkett’s lymphoma with bone marrow involvement. It was also noted that lesions were present on Kenneth’s liver and right kidney. To further complicate matters, routine testing discovered Kenneth was HIV positive. Kenneth was having a difficult time emotionally. He was extremely depressed and anxious about starting vigorous treatment regimens for his stage IV Burkett’s as well as his HIV. Once diagnosed, Kenneth had surgery for placement of a Port-a-Cath and an Ommaya reservoir. He began chemotherapy – hyper-C VAD as well as Ativan for anxiety and nausea, Lexapro for depression, morphine for pain, and Levaquin for a bacterial infection. Additionally, he began Atripla for management of HIV symptoms. Kenneth had a difficult time coping with his diagnoses, particularly HIV. He requested that no family members be made aware of his HIV diagnosis.

I received a referral to work with Kenneth a week into his hospital stay secondary to high levels of anxiety. He was in his room, lying in bed, his room completely filled with family members of all ages. I was a bit shocked by the number of people in the room – there was no room to move around at all. What was even more troubling to me was the fact that they were all just sitting and staring at Kenneth, as if they were waiting for something dramatic to happen. Before I had a chance to finish introducing myself, Kenneth immediately jumped in and asked, “Are you here to help me plan the music for my funeral?” While an unexpected response from the client, his question provided great insight on his coping manner.

Re-finding Voice/Reconnecting With Family

After I reassured Kenneth I was not there to plan his funeral, I briefly explained I was there to address his anxiety and pain. His face relaxed and brightened as he spoke of his love of music. Kenneth loved all kinds of music from country to classical, to religious, to R&B, and pop. He loved to sing and his family said he had a soulful voice. I asked Kenneth if he was up to singing today and I presented him with a lengthy list of songs from various genres. He chose “I Believe I Can Fly” (Kelly, 1996). As I began playing the chords on the guitar and singing, he closed his eyes and swayed his body to the rhythm of the music, occasionally singing along. At the chorus several of his family members joined in as well.

He then asked for “What a Wonderful World” (Weiss & Thiele, 1967). I played a soft picking pattern on the guitar as I quietly sang. Again, Kenneth closed his eyes, swayed to the music, occasionally sang along, but as the music continued he began to fall asleep. I continued playing a soft picking pattern on the guitar, encouraging him to lay back and rest. The session ended with Kenneth sound asleep and several family members resting with their eyes closed.

Assessing this first session, I concluded that Kenneth was extremely anxious, likely had not processed everything that was happening to him, and was aware of the anxiousness of his family members as well. I was equally concerned about the number of people in the room and the effect their presence had on Kenneth. I wondered if their presence was doing more harm than good. I spoke with Kenneth’s nurse and learned that no one in Kenneth’s family knew about his HIV status, including his girlfriend. I also learned that Kenneth was afraid of telling them. Additionally, family members were at his bedside twenty-four hours a day, which also made it difficult for medical staff to explain to Kenneth his treatment.

Kenneth already appeared to have a strong connection with music and seeing his reaction to the first session let me know he would benefit from music. My initial goals included decreasing anxiety while increasing opportunities for self-expression. I felt I had to help Kenneth “find” his voice so he would be able to connect with his support system.

I continued to check on Kenneth, but several days passed before I had the opportunity to work with him again. When I walked into his room for his second session, however, I noticed a bit of difference. Once again several family members were present, but this time I was greeted with a smile from Kenneth and an eagerness for some music. After resolving some anxiety over an IV leak, Kenneth asked to see a song list stating, “I want to sing” and began picking religious songs. As I began playing and Kenneth tried to join in, he became noticeably distressed by the sound of his voice and asked me to change the key. We spent several minutes trying out different keys until he found one with which he was comfortable. I felt this process was important because it was one area in the hospital with which Kenneth had control. Looking back, this was the first step in Kenneth regaining his voice.

Once he found his key, he began to sing. His voice was soft, but soulful, clear and expressive. We maintained eye contact as we sang together. He would take the lead, and I provided accompaniment with soft vocal backup. The more he sang, the more his body seemed to relax and the more his family also began to relax. We sang a few songs this way before I asked Kenneth if he knew the song “Farther Along” (Stevens, 1911). His eyes lit up as I gave him a copy of the lyrics so he could sing with me. Before I could even start playing the guitar, Kenneth began singing the first verse and the room became quiet. I joined in with him on the chorus and provided support when his voice was weakening. After the chorus he motioned for me to sing the second verse, and then he joined in on the chorus before taking over on the third verse. We continued this pattern of taking turns singing the verses, together on the chorus, until the song ended with Kenneth asking to sing the last verse again--but by himself. When he finished, there was silence. Words could not explain the profound impact this moment had for everyone in the room. The lyrics of the hymn, along with Kenneth’s voice, reflected the pain of not knowing or understanding why the illness was happening to him. There was no need to verbally process because I felt the lyrics of the hymn and Kenneth’s singing captured the emotions he was feeling.

I sensed this was a good time to end the session, but Kenneth wanted more music. Trusting my instinct, I asked if he knew the song “I’m Your Angel” (Kelly, 1998). This is a pop/R&B song with powerful, inspirational lyrics. I chose this song because of the genre of music and because the lyrics deal with struggles. I chose it not only for Kenneth but also for his family. Kenneth and his family were emotional as I played and sang this song and at various points they all joined in singing and made eye contact with one another. As the song ended there was a brief moment of silence in the room before Kenneth exclaimed, “I needed that.” Again, I did not process or analyze the meaning of this song in depth because the reactions of those present was process enough, and I felt it important to let that energy remain. His mother asked for a copy of the lyrics as I was preparing to leave. Little did I know that this would become an anchor for Kenneth and his family as he battled for his life.

I thought we accomplished a lot in this session. I learned how important it was for Kenneth to not only hear the music, but to sing it. This allowed him to begin opening up and expressing his feelings through his emotional renditions of the music. This session also allowed me to interact with and include the family, which provided opportunities for them to access some of the emotions they were experiencing as well as begin to trust me and the music. Most important, through the last song the seed was planted to begin focusing on what was going to help him and his family cope with his illness. I was eager to have a follow-up session with Kenneth, but he was discharged the next day.

The Battle Continues

Ten days later, Kenneth was re-admitted to the hospital with uncontrolled nausea and pain. I walked into his room to find him with his eyes closed; however, when I spoke his name he sat up eager for a visit. Once again, family was present, but this time it was only his mother and his girlfriend. Kenneth reported that he was feeling better with some pain going down his right arm. I offered several suggestions to Kenneth, including music-assisted relaxation, but he asked if we could sing together. I gave him a long list of titles from which to choose. He focused on contemporary Christian songs, asking to hear, “I Love You Lord” (Klein, 1978) despite never hearing it before.

After singing the song he shared that he liked to write music and wanted to share a few songs that he wrote. The power in his voice and the lyrics he chose were strong metaphors reflective of this relationship with God. The melody flowed so naturally it appeared to be an externalization of his soul. It was even more obvious that Kenneth’s faith was his biggest support system and his voice was what connected him to that. Furthermore, the music was the catalyst that would help access and express the emotions that were stirring within. As the session was coming to a close I encouraged Kenneth to turn to his music during periods of increased anxiety. Kenneth responded by looking at his mother and stating, “We used to sing together all the time when I was little.” It was a matter of seconds before mother led the entire room in song as she began singing, “This Little Light of Mine” (Loes, 1920) As the song ended she started, “Down by the Riverside” (1927). For the first time since Kenneth was hospitalized I began to see connection between Kenneth and his mother. Fear and anxiety were no longer showing on her face; instead, she was smiling as she reconnected with her son in such a powerful way. Before the session ended we returned to, “This Little Light of Mine” (Loes, 1920), this time, everyone was singing and clapping as the words were spontaneously changed to provide support in relation to what they were all experiencing. As I left, Kenneth spoke up to say that in the next session he wanted to write a new song, a song about what he was going through in the hospital.

It was touching and rewarding to see Kenneth and his family re-connect through the music, re-discover ways to support each other, and have a moment where they could just enjoy one another. What remained troubling, however, is that Kenneth had yet to share with his family or his girlfriend his HIV status and the complications inherent in his treatment. This secrecy continued to cause high amounts of anxiety in him, and no one on staff had the opportunity to process this with him because of the constant family presence. While visitation restrictions were put in place so that no more than two family members could be in the room at any one time, I knew that it was in Kenneth’s best interest to have an individual session. I spoke to the treatment team about asking the family to leave during our next session.

Two days later I walked into Kenneth’s room with a keyboard in hand. His mother and girlfriend were present; however, his girlfriend was getting ready to go out for lunch. Kenneth and I convinced his mother to take a break. We were then ready to get to work. Kenneth was used to working alone with just melody. So I could be supportive of his attempts, I suggested that we just improvise--I would play some chords on the keyboard, and he could vocalize on top whatever he needed or wanted. After playing several chordal patterns on the keyboard, Kenneth settled on some minor “jazz” progressions. We found a pattern with which he was happy, and I continued to play that progression while he closed his eyes, appearing to meditate. Before long he was humming to himself, grabbing a pen and paper, and writing a verse before singing the words aloud. When one verse was done he moved on to the next verse--humming, writing, and then singing aloud until his song was completed. After he finished he looked exhausted and had tears rolling down his cheeks. I softly asked him how he was doing and if he was willing to share with me the connection to each verse.

In you I find my own security
Making my heart and soul release their keys
Ways upon to love beyond mercury
Lying beneath my favorite oak tree

In life I find the test that I must add
Find the truth between content and sad
Rejoicing cause you have made me glad
Coming forth with boldness, no passing fad

Chorus:
Because you are my only, my only, my only, my only, true love

And if you continue on this race with me
Somehow I might show you how it’s like to be
In love with someone’s heart like me
Rejoicing in time I see you come in the door
Welcome friend can you stay a little while
Don’t let it end
Because you are my only, my only, my only, my only, true love

He explained that the first verse was about God and how his relationship with God was such a strong support for him during this time. The second verse was about his relationship with his illness. In some ways he was thankful for this illness because it gave him an opportunity to examine what was most important to him. The third verse was about his girlfriend, but he did not go into great detail about this. The chorus was again about his girlfriend, and included a wish, a desire of what he hoped she was.

The session ended with Kenneth looking at me in a rather quizzical way before exclaiming “there is something different about you…I don’t know…you’re like a therapist…better than a therapist.” I chuckled as I told him he found out my secret.

I continued to check on Kenneth throughout the week. Nurses reported that some days he was fine, other days, he was emotional and sometimes “whiney.” An ethics consult was ordered because Kenneth had not told his girlfriend about his HIV status despite being diagnosed two-months earlier. It was the ethics committee that forced Kenneth to tell his girlfriend about his HIV status. Obviously, she was angry--angry with him and at his mother. She was also scared, as she did not know much about the illness. At the same time, Kenneth was having more complications from the illness and the medication.

When I was finally able to see him for a fifth session I was greeted with a big hug. By this time his speech was slurred, his voice horse, and his eyes unfocused, secondary to palsy. His girlfriend had returned to his side and his mother and sister were also present. Surprisingly, he was upbeat and joking around. After a few minutes of catching up, he asked to hear, “I’m Your Angel” (Kelly, 1998). As I began to play, he lay back in bed and closed his eyes. Then Kenneth began to cry--a loud, full body cry that made it difficult for him to catch his breath. I sensed that it was okay for me to continue as his family came to his bed, put their arms around him and began sharing tears while holding one another. As I played, they cried and continued to cry as the song came to an end. Between tears they began verbally and physically supporting one another. With little prompting Kenneth, his mom, his sister, and his girlfriend began to open up to one another--talking about how they would be there for one another, they would fight the battle together, they would cry together, and they would be together.

This was such an important moment for Kenneth and his family. Some of his anxiety had been lifted as he finally shared an important component of his illness with his family and most importantly, they were still by his side. This time they were not only physically supportive but also emotionally supportive, a component that is so important to have as one battles cancer.

The session ended with Kenneth asking for music to help him rest as he was getting tired. I softly played religious songs that he had requested in previous sessions that had tempos close to that of the natural heartbeat and gradually just began improvising on the guitar--at first between verses and then gradually just improvise on the guitar as he drifted to sleep. As I was leaving, his mother walked out with me and thanked me. She said, “You came at the right time, and played the right song. Thank you so much.” I hugged her and again let her know I was there to talk if she needed someone.

This was a powerful session. The sounds of him and his loved ones crying and the images of them holding him were quite powerful. There were so many emotions in that one session--joy relief, sadness, support, and love. As the therapist witnessing these events unfold, it was difficult to not be overwhelmed by what I, too, had experienced.

Right before Kenneth was to be discharged I had another session with him and his family. He was excited and so was his family as it had been a long, emotional stay. He asked to hear, “I’m Your Angel” (Kelly, 1998). As I played, he made eye contact with each family member as they occasionally joined me in singing. As the song ended, Kenneth began sharing about the “angels” in his life. He talked about his mom’s love and support, his girlfriend, his grandmother, and God. All were helping him take one day at a time and all offered a different level of support—a different kind of support—when he needed it. He knew to whom he could turn when he needed support. It was clear that this song became his theme song that would help him fight on those days when things were the most difficult. I was confident that we had reached the initial goals of decreasing anxiety while increasing self-expression. Kenneth rediscovered his voice from within and was re-connected to his family and together they became a source of comfort for one another.

Frustration

Two weeks later I came into work to find that Kenneth had returned. I could only imagine his frustration. I checked on him several times, but he was always soundly sleeping. Nursing staff reported Kenneth was depressed, choosing to sleep away the days, acting childish by insisting that his mother and staff do things for him that he was capable of doing for himself. Late one afternoon, I caught him when he was awake. He appeared agitated, restless, and immediately asked me why I was not there that morning, saying, “I really needed you.” He verbally shared his frustrations with his family, his life, his disease, and being in the hospital. He then went on to say that he was just plain tired, despite sleeping at night, and just wanted to rest. He was rather demanding, insisting that I pick out songs I knew he would like so he could rest. As I did, he fell asleep, and I quietly slipped out of the room. The next session was similar to this one and, shortly thereafter, he was once again discharged. I was quite aware that during this phase of his illness Kenneth needed to control something and demanding I play so he could rest was the only control he had at that time.

Kenneth was readmitted two more times, but he chose to come alone. He explained that he was tired of everything and scared. Medically, he was having significant toxicities from the chemotherapy in addition to intractable pain, nausea, and vomiting. Furthermore, despite six rounds of chemo, his tumors continued to grow and he was having a decline in performance status. While his family tried to be supportive, Kenneth seemed to need more. As I sat on his bed, holding his hand, he quietly shared that he was afraid— afraid he was not getting better, afraid that when he closed his eyes he would not wake-up, and afraid to plan for his future. He wanted to talk about the “what ifs,” but his family did not want to hear about this; they wanted him to go on with life as if nothing was happening. He wanted to acknowledge the possibility that treatment would be unsuccessful, while they only wanted to focus on the positive. The focus of the music therapy sessions during this time shifted. It was evident that Kenneth wanted me to listen to him as he talked about his fears, feelings, frustrations, and need for support outside of the hospital. Kenneth then wanted me to play softer music to help him sleep. I was reluctant to continue this pattern, as I was not sure it was helpful to him and was concerned that emotionally he was experiencing more than he could handle or cope with at this time. So, I decided to shift gears. I began playing “Somewhere over the Rainbow” (Arlen & Harburg, 1939) and could tell by his facial expressions that the music was speaking to him. He did not say a word, just looked off in the distance. I sat with him waiting for his directions. After what seemed an incredibly long silence, he began vigorously crying while I held his hand and eventually wiped his tears. It was then that Kenneth began sharing with me.

His voice was filled with anger as he shared his HIV status with me. He said that family treated him as if he were contagious. His anger over getting HIV was also expressed when he stated, “The doctor thinks I might have gotten it from a needle when this was done,” as he pointed to a tattoo. “The funny thing is, I didn’t want this tattoo. It’s my fraternity tattoo.” He continued to talk about how the illness was affecting him, his family and friends, and how he didn’t want a girlfriend because he could not be there for her right now like he would want to be. He talked about feelings of helplessness, having to rely on others, regret, guilt, shame, anger, sadness—a full range of pent-up unexpressed emotions came forth. He talked about death and how he hated the way he felt. As he continued, he stated, “I want to die empty, not full.” Puzzled, I asked him what he meant by this. He explained that dying empty meant that you gave everything you had inside of you to someone else, whether it is love, gifts, or talents.

A graveyard is so rich. If you look out there, you can see that so many people had so much to give, and there are those that have the gifts of others inside of them. Some have love, some have poems, and some have music. Right now, I’m full; I don’t wanna die like this. I wanna be totally empty.

I asked him how he wanted to become empty, and he shared that he wanted to give his love, his heart, and his everything to someone else. Because of his strong connection with music, his love for music, and his amazing ability to express himself through music, I suggested that he use music to “empty” himself. I suggested that he write songs, sing songs, give songs to others he cared about or possibly create his own songbook. He thought about it, wiped away his tears, and looked at me as he smiled, “I think that is a great idea. What better way to make me empty.” Kenneth was discharged the next day.

Emotional Suffering

Two days before Christmas, four weeks since I had last worked with him, I was despondent to find that Kenneth had been readmitted to the oncology unit with a high fever and probable pneumonia. When I went in to say hello, I was quite upset to find him shivering in bed, writhed in pain and disoriented. He was confused as to where he was, what was happening, and who I was but when asked, responded, “yes” to music. It was incredibly difficult to see him in so much pain, literally suffering. It took me a few moments and some deep breaths to gain my composure. I began improvising on my guitar with a slow and steady tempo. As I continued to play, his legs slowly began to release from a fetal position as his body began to relax and his breathing became deeper and steadier. At one point, I thought he was sleeping and was surprised when he began talking:

I am angry. Is that okay Joy…is it okay to be angry?

It’s okay.

Why did this happen? Why? I don’t think they are telling me everything--would you tell me if I am going to die?

At this point I stopped playing my guitar to hold his hand and rub his head to comfort him. As he began drifting again, I quietly sang to him several songs that we had sung previously in addition to hymns that I knew would be a source of comfort to him. At one point he quietly joined me in singing, “Amazing Grace” (Newton, 1779/1835). Afterwards, he drifted off to sleep. When I left his room I went back to my office and cried. I was hurting for him and recognized that he was rapidly deteriorating. By this time, the cancer had metastasized to his brain, which accounted for his disorientation. From the beginning I knew that he did not have a favorable diagnosis, but I hoped that he would have the opportunity to find peace and it looked like this might not happen. Furthermore, he was alone.

I didn’t see Kenneth for a few days because of the holiday season. When I returned, I found him sitting upright, looking weak and fatigued. I was pleased to see his mother at his bedside attending to his needs. He was more lucid than when I had seen him last, and he asked me if I had been in to see him. I promised that I had as he again drifted off to sleep. I spoke with his mother briefly. She was reassured by my presence that I was “taking care of Kenneth.”

Two days later I worked with Kenneth again. He was lethargic but reported less pain. When I entered, he stated, “Sing to me, just sing anything…help me rest.” Again, I improvised on my guitar. Before long he grabbed my hand and began to cry with his whole body as he tightly squeezed my hand. I had tears in my eyes as I simply allowed him to release the tears and the anguish that he was obviously going through.

It was increasingly difficult for me to go in to see Kenneth. His oncologist was going back and forth on a plan of care. It was apparent that he was not going to survive this illness and quite possible that this would be his last hospitalization. Another round of chemo could be initiated and there was the possibility of palliative radiation to the head. It would take close to a week of tests and various consultations, including a palliative care consult, before a course of action was chosen. During this time I was unsure of what to do. The music was a great source of comfort to Kenneth, and it certainly helped him cope with the increase in pain and anxiety. However, I was having an extremely difficult time seeing him suffer. His pain was not managed and every time I entered the room he was moaning. Each time, however, the music helped calm him. He used the music session to express and access his feelings. It was only after this expression of tears that he allowed the music to relax him.

Kenneth’s mother began falling apart. Her anger and frustration during that week was directed at the nursing staff. I went in to be with her and she hugged me tight as she worshipped and praised God, “I am not going to cry Joy, I am going to praise God Almighty, hear me lord Jesus.”

The next day I went in to check on Kenneth. Again, he was curled up in a fetal position yet receptive to music. His mother was there and she looked right at me and said, “Please Joy, don’t make me cry…I can’t cry…I can’t cry today, not today.” I had no idea what to do. Kenneth seemed to have found the greatest comfort in releasing his emotions through the music; it allowed him to rest. Yet, I was receiving this request from his mother that I not provide music to her son. What I decided to do was just play guitar at a tempo close to that of the natural heartbeat, occasionally singing words or humming, but the majority of the time just improvising on the guitar to match Kenneth’s breathing pattern. Before long, he was in a deep sleep as was his mom.

It was four days later when I saw Kenneth again. He was alone in his room, resting and more lucid. He spoke in two to three word sentences before his voice drifted off. I played a few songs, improvising on guitar between versus before singing, “I’m Your Angel” (Kelly, 1998). As the song ended, he said, “You remembered my song, thank you…what’s a hospice center?” Kenneth made it clear that he wanted to go home and home was his grandmother’s house. He was responding to the chemo and radiation and was slowly beginning to eat again. Kenneth was discharged from the hospital five-days later with plans to continue chemotherapy as an outpatient.

A Choice

Two and a half weeks later Kenneth was readmitted. When I entered his room to say hi, I was quite shocked by what I saw. Kenneth had lost close to 23 lbs. since I last saw him. He looked emaciated, his skin just hanging from his bones. He was not eating secondary to side effects from both the radiation and the chemotherapy. Kenneth was sleeping most of the time with periods of alertness characterized by high levels of anxiety with resulting increases in pain. His mother continued to struggle, angry if Kenneth was anxious or in pain, and angry if he was sleeping secondary to medication for the anxiety and pain. I had two sessions with him during his first three days of readmission. Both times he appeared restless, asked for music, and used the music to fall asleep. During the first session, he was more alert, and I attempted to engage him in songwriting; however, he was not interested. “Maybe tomorrow” he said. During the second session, he was not lucid enough.

I admit I was quite frustrated about what I felt was inhumane, prolonged suffering. I so wanted him to access the turbulence inside, process it, and make peace with it so that he would have a “good death.” While I knew the music was helpful in decreasing the physiological signs of increased anxiety and pain, I wanted to be able to do more than that. I wanted him to allow the music, trust the music, to process so that the underlying issues contributing to the anxiety could be dealt with. I also recognized at that moment that this was about me and not about Kenneth. I was given the advice, “Don’t offer music unless he uses it to process.” I was not sure how I felt about this, but I did know it gave me an out. An out from bearing witness to another’s struggles, another’s suffering, and it was tempting to bite. I discussed the case with my supervisor, who was unaware of the complexities of the case. The supervisor responded to me, “Whose need is this, and why are you trying to change the family system?” I was quite angry at this response. I only wanted what was best for the patient. However, a short time later I knew he was right, and I came to my senses—yes, the family system.

Kenneth was his “mama’s baby” and was a “mama’s boy.” Kenneth was going to do what his mama wanted him to do, what he thought his mama needed. While he was comfortable with displaying his anger towards her before, he was now scared more than ever and needed his mom. Furthermore, his mom’s way of coping was focusing on and praising God, not processing all of the feelings, emotions, and certainly not accepting that death was a possibility or preparing for such. So, with this “revelation” and understanding about family systems and my role, I visited Kenneth with a new focus, the mother/son bond.

Kenneth was extremely lethargic when I entered the room, going in and out of sleep. I suggested that we allow his mother to choose some songs, and Kenneth agreed. His mother chose an old hymn, “One Day at a Time” (Wilkin & Kristofferson, 1974), and held Kenneth’s hand as I sang. After the song ended she softly broke into song, singing a few verses of various gospel songs from her childhood with a promise from me that I would try to find the lyrics for her. As I was beginning to leave, Kenneth opened his eyes and asked for “my song.” While I did not know it, this would be the last time I would sing this song for Kenneth. As I sang, “I’m Your Angel” (Kelly, 1998), the words seemed to take on a new meaning. I had to hold back tears as his mother began softly crying as the words

And when its time to face the storm, I’ll be right by
Your side, grace will keep us safe and warm, and I know we will survive; and when it seems as if your end is drawing near, don't you dare give up the fight, just put your trust beyond the sky...

were sung with Kenneth making direct eye contact. As the song ended there was a heavy silence.

Kenneth continued to decline, and his body was fighting more and more infections. When I entered his room two days later, his mom, aunt, and three nieces greeted me. Again, Kenneth was lethargic, slow to respond to any stimuli, but seemed to be comforted by the presence of his nieces. When I asked him if he was up for music therapy, he slowly responded, “Ask the girls.” I soon learned that Kenneth was the center of his niece’s world – they could not get enough of their “Doubie.” I asked “the girls” for their help in writing a song for “Doubie.” In a few short minutes, we had a silly song written. Next, the girls helped me sing to Kenneth. They and their aunt choose a variety of songs, ending with religious songs. It was a wonderful session. Kenneth participated as much as possible, but more importantly, had the opportunity to hear from his “girls” how much he meant to them. At the end of the session, I reminded his mother of one of the first sessions I had with them when she spontaneously broke into song. The session ended with a melody of spirituals, clapping, singing, smiling, and memories.

This would be my last session with Kenneth. The next day a palliative consult was placed and mother became irate. She was even more frustrated when her religious beliefs were called into question and “guarded” the door. Furthermore, staff members were concerned that she was not allowing him to receive a proper dosage of pain medication. My last interaction with her would be as an intermediary with staff, as I was the last staff member she was willing to talk to. We talked at the end, in an effort to give her some element of control. I offered to help her make a CD of music to use at night when she and Kenneth had difficulty sleeping. She jumped at the idea. I did not know that this would be my last interaction with her.

That weekend Kenneth was discharged; there was nothing more the hospital could offer him unless he went under palliative care. A week later Kenneth was brought by ambulance to the emergency room. He died within minutes of his arrival from respiratory arrest. His suffering was over; his mother was finally free to “fall apart” with her family there to pick up the pieces.

Personal Reflection

Music therapy sessions with Kenneth addressed many goal areas. The music allowed Kenneth to access and express his emotions. It validated his religious and spiritual beliefs. It decreased anxiety and pain. Last, it fostered communication, deep and meaningful verbal and nonverbal communication, between and within family.

In medical settings the focus is generally on the body and healing with little regard for the emotional, spiritual, social aspects of illness. Music therapy’s uniqueness expands beyond the medical model to include a biopsychosocial approach to treatment. Life and health, like music, are composed of many layers and relationships. During treatment, individuals may be challenged to balance their own notions of healthy self with their actual experiences of new or different physical, spiritual, emotional, or social capabilities. A biopsychosocial approach seeks to minimize the impact of disease on the physical and the emotional development and functioning, as well as to achieve a dynamic balance between disease management and quality of life for the patient and family. It provides for a broader understanding of disease process as encompassing multiple levels of functioning.

Working with medical patients is often supportive in nature. We comfort, advise, encourage, reassure, but mostly we listen. We become cheerleaders on the bad days, shoulders to cry on, and someone with whom a patient is free just to “be” with. On most days we, as therapists, hold our composure well, support one another, and take care of one another and ourselves. However, we are human and suffer from our own struggles within as I did with this case. Watching Kenneth writhed in pain was almost too much for me to bear as it conjured up losses in my own life, and situations in my life that were out of my control. Furthermore, as a mom, I could certainly empathize with Kenneth’s mother and her need to keep it together and not “fall apart.” While there was a time that I did not understand it, situations in my life lead me to a greater understanding of one’s sometimes-desperate need to just keep it together. Working with Kenneth, reminded me that as a music therapist I, too, am vulnerable, and that vulnerability is a gift to me, to my patient and to his family. Last, it was a reminder to me that we cannot force a client to go where they are not ready to go, but we can remain a presence to offer the client what only music and the therapist can provide: a tool to access, a tool to re-create, a tool to redefine, a tool to express, or a tool for life.

As the field of medical music therapy continues to grow and develop, it is important for our profession to encourage dialogue on the depth and breadth of our work, including the inherent risks to both client and therapist when working within advanced levels of practice. Like our clients, we face crises. Being confronted with clients who are facing similar emotional struggles and concerns happens far more than therapists realize. We may not be consciously aware when we are confronted with clinical situations that are reflective of our own. However, when confronted, we have a choice. We can choose to let our issues get the best of us or we can embrace a parallel process – using our process to benefit the client and the client’s process to help in our own healing process. When used appropriately, parallel process can help us see our client’s needs more clearly and, in turn, help us in the therapeutic decision making process. Like music, parallel process can be a powerful tool within the client-therapist relationship. Gaining insight into my own process and working through my emotional and spiritual struggles allowed me to gain greater insight into Kenneth’s needs and, in turn, offer him interventions focused on meeting those needs.

References

Allen, J. (2007, March). A Biopsychosocial approach to cancer care. Continuing Music Therapy Education Course presented at the Southeast Region American Music Therapy Association, Memphis, TN.

American Cancer Society (2012). Coping with Cancer in Everyday Life. Retrieved from http://www.cancer.org/acs/groups/cid/documents/webcontent/oo2801-pdf.pdf

Arlen, H., & Harburg, E. (1939). Somewhere over the rainbow. New York: Robbins Music Corporation.

Brown, L., Macintyre, K., & Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: What have we learned? AIDS Education and Prevention, 15(1), 49-69. doi: 10.1521/aeap.15.1.49.23844

Down by the Riverside (1927). In C. Sanburg (Ed), The American Songbag. New York: Harcout Brace and Company.

Galvan, F., Davis, M., Banks, D., & Bing, E. (2008). HIV Stigma and social support among African Americans. AIDS Patient Care & STDs, 22(5), 423-436. doi: 10.1089/apc.2007.0169

Kelly, R. (1996). I believe I can fly. Santa Monica, CA: Universal Music Publishing.

Kelly, R. (1998). I’m your angel. Santa Monica, CA: Universal Music Publishing.

Klein, L. (1978). I love you Lord. Santa Monica, CA: Universal Music Publishing.

Loes, H.D. (1920). This little light of mine. Public Domain

Newton, J. (1779/1835). Amazing grace. Public Domain

Parker, R., & Aggleton, P. (2003). HIV and AIDS related stigma and discrimination: A Conceptual framework and implications for action. Social Science Medicine, 57(1), 13-24. doi: 10.1016/S0277-9536(02)00304-0

Stevens, W.B. (1911). Farther along. Dalbo, TX: Stamps-Baxter Music Company.

Weiss, G., & Thiele, B. (1967). What a wonderful world. New York: Herald Square Music Company.

Wilkin, M., & Kristofferson, K. (1974). One day at a time. Nashville, TN: Buckhorn Music.

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Appendix

Farther Along

Lyrics by W.B. Stevens

Tempted and tried, we’re oft made to wonder
Why it should be thus all the day long;
While there are others living about us,
Never molested, though in the wrong.

Refrain:
Farther along we’ll know more about it,
Farther along we’ll understand why;
Cheer up, my brother, live in the sunshine,
We’ll understand it all by and by.

Sometimes I wonder why I must suffer,
Go in the rain, the cold, and the snow,
When there are many living in comfort,
Giving no heed to all I can do.

Tempted and tried, how often we question
Why we must suffer year after year,
Being accused by those of our loved ones,
E’en though we’ve walked in God’s holy fear.

Often when death has taken our loved ones,
Leaving our home so lone and so drear,
Then do we wonder why others prosper,
Living so wicked year after year.

“Faithful till death,” saith our loving Master;
Short is our time to labor and wait;
Then will our toiling seem to be nothing,
When we shall pass the heavenly gate.

Soon we will see our dear, loving Savior,
Hear the last trumpet sound through the sky;
Then we will meet those gone on before us,
Then we shall know and understand why.