The purpose of this paper is to discuss the initiation and ongoing work in a community-based pediatric palliative care program. Benefits, goals and interventions of music therapy will be presented with clinical examples. Personal and professional issues and challenges specific to this work will be reviewed. A brief summary of the program to date will include findings of a satisfaction survey distributed to the parents/caregivers and health care professionals.
Ruth became the first employed music therapist at the Hospital for Sick Children in Toronto, Ontario in 1999 with the creation of a position on the oncology unit. Her experience with children receiving treatment for cancer underlined the value of music therapy for children requiring palliative care. In collaboration with the existing palliative care service and through joint funding, a music therapy service for children receiving palliative care at home was launched in July 2001. Both Ruth and Penny have worked in this community based palliative program.

Story of Avaline
One of the first children served was a 3.5-month-old girl, Avaline. She was tiny, blind and suffering effects of a genetic disorder that left her with no chance for long-term survival. Initially she was only expected to live days. However she survived the first week of life and her parents took her home to join her 3-year-old sister. It was a particularly difficult time for the family knowing that their child would not survive and continually anticipating her death.
Avaline was referred for music therapy as she had periods of agitation that nothing seemed to relieve. Her parents were distressed by her lack of response to usual comfort measures. Ruth gently introduced the sounds of a few chosen instruments but clearly Avaline was most receptive to the guitar. As she lay on the couch listening, she became quiet. When the restlessness started, it did not escalate as usual but slowed, allowing her to settle. Her response was immediate and marked. There was no doubt in mom's mind that Avaline was responding very positively to the music. Ruth also spent time with Avaline’s big sister who enjoyed making music together.
This was the only music session with Avaline as she died within two weeks. This one-time visit was of such significance to the parents that they requested donations be made to the music therapy program in memory of their beloved daughter. Ruth paid a bereavement visit to the family during which mom commented of the music therapy “I hold those moments very close, I know it was so beautiful for her…and she really deserved it". Mom later wrote: “Although Avaline was only 3 months old, it gave her peace. It gives me peace to know that she had peace. Even though it was short, it was one of the best moments we had with her”.

Paediatric Palliative Care
Paediatric palliative care differs from adult palliative care in notable ways:
· The primary decision-making is generally the responsibility of parents or caregivers, not the patient.
· The diseases are unusual and infrequent therefore less known and researched
· Children communicate their needs very differently than do adults, often
through non-verbal cues.
· Pain management is more challenging relating in part to a child's ability to communicate and verbally report specifics (Martin, 2002).
· The emotional impact of caring for dying children presents a different set of challenges than caring for adults in palliative care

Paediatric palliative care includes illnesses that are life threatening and life limiting.
According to Stephen Liben, Director of Paediatric Palliative Care at Montreal Children’s Hospital and Anne Goldman, a paediatric palliative care specialist in the United Kingdom, there are four types of treatment groups:
1) Children for whom curative treatment is possible, but may fail - for example, children requiring treatment for organ transplant or Cancer.
2) Children whose disease requires long periods of intensive treatment to prolong or improve life, but premature death is expected. For example, HIV aids or Cystic Fibrosis
3) Children born with a progressive deteriorating condition of neurological or metabolic origin.
4) Children with a severe disability, often neurologically based, rendering them extremely vulnerable to complications and illnesses. Premature death is most likely, often from a severe secondary infection such as pneumonia.

Music Therapy in Paediatric Palliative Care
Although the use of music therapy in the paediatric hospital setting has increased over the past twenty years, most existing pediatric music therapy literature is not specific to palliative care but relates rather to the care of children with cancer.
The beneficial use of singing, song choices, creative movement, playing instruments, creating lyrics and music games with paediatric oncology patients has been described (Lane,1996). Song creation has been discussed in terms of helping children with cancer in finding new roles, and in creating, and experiencing joy during illness and treatment (Aasgaard, 2001). A variety of music therapy methods and goals specific to states of treatment were considered with paediatric inpatients diagnosed with AML and ALL (Daveson, 2001). Clinical improvisation has been reported to be effective in alleviating procedural distress in hospitalized young children (Turry, 1997). Several music therapy interventions were employed in a study of hospitalized patients with cancer, showing a positive impact on the child’s well being (Barrera, Rykov, Doyle, 2002). Engaged behaviours of ten hospitalized pediatric oncology patients increased with music therapy, compared to controls (Robb, 2000).
Daveson (2000) discussed two brief case studies in which music therapy provided a creative experience, musical memories, opportunities for reminiscence and self-expression, and silent reflection for hospitalized children and adolescents receiving palliative care. Several methods used with a child receiving palliative care were also outlined (Daveson, 2001).
Music therapy goals in palliative care reflect the child and family's needs as they prepare for death, including: facilitating anticipatory grief, providing a legacy, refocusing hope, providing comfort, celebrating life and improving quality of life (Roberts, 2002).

Palliative Care at the Hospital for Sick Children
The Hospital for Sick Children (HSC), Toronto is one of the largest paediatric academic health science centres in the world and is internationally known for its excellence in health care and research. It serves as a teaching hospital for the University of Toronto in many health care disciplines. It is a large institution with a staff of 3000. The Hospital for Sick Children Foundation funds many projects including research initiatives.
Palliative care at HSC was instituted in 1986. It was established and promoted by a handful of people and remained that way until 2002 at which time the program received additional funding. The palliative care team now includes a part-time physician, a clinical nurse specialist, a palliative / bereavement care coordinator, a part time nurse, and a part time music therapist.
HSC is primarily an acute care hospital, and there are no designated palliative care beds. The team works on a consultative basis throughout the hospital and focuses on arranging and providing community care for those families who choose to care for their dying children at home.
Within the Oncology program, approximately 60 children succumb to their disease each year. Those children receiving palliative care in the hospital are offered music therapy, and those children going home may be referred to the palliative home care music therapy service. In addition to serving children within the Oncology program, the palliative care team also provides service to children with genetic, metabolic, neurological and other disorders.

Inception of the Program
The initial phase of the music therapy program required establishment of funding that came through a private organization called “Care for Kids” and the “Canadian Music Therapy Trust Fund”. Ongoing funding is provided by “Care for Kids”, “Hospital Women’s Auxiliary”, “Jesse’s Foundation for Music and Dance Therapy” and other donors. The initial planning phase of the program included:
· Purchase of instruments
· Establishment of vision, mission statement, and framework for practice
· Consultation with a program evaluator from the University Health Network.
· Development of referral criteria and procedures
· Initial design of caregiver questionnaires
· Initial design of parent / caregiver information brochure
Referrals were received through the palliative care department and home visits initiated. The service was well received and efforts were made to secure ongoing funding.

Benefits of Music Therapy in Pediatric Palliative Care
The Benefits of music therapy in pediatric palliative care include:
· Universal appeal – Everyone can relate to music.

· Non-invasive, non-threatening - Most treatments and interactions with these children are medical in nature, and often involve painful procedures. Music therapy offers are more positive and inviting interaction.

· Non-verbal - Music therapy is a means of exploring difficult issues and painful realities without words. It can cross language, culture and communication barriers, physical exhaustion, and coma.

· Social in nature and by nature – Music therapy invites child and family participation, which is so crucial at a time when children are often socially isolated.

· Involves whole person – Music engages the child in body, mind and spirit.

· Flexible/adaptable - The portable nature of some instruments allows the therapist to bring music to any child’s home. As well, the child’s level of participation – from active to passive - can be adjusted to his or her abilities and changing medical condition.

· Focuses on living – Music therapy relates to the part of a person that is well rather than focusing on pathology. This is particularly important when many children in palliative care are so limited.

· Easy to engage - Childrens’ songs are a normal aspect of most childrens’ lives. Generally, this music is associated with familiar and positive memories.

· Captures imagination – A child’s imagination is an important inner resource. Music supports and activates the imagination and spirit.

· Sense of play / humour – Children express themselves through play. Music taps into this innate ability.

· Inroad to the spirit – Music speaks to human experience and spirit. Children’s spirituality may be expressed through music therapy.

The Story of Joshua
Joshua was diagnosed with Leigh's disease at the age of 6 months. Leigh’s disease is a rare inherited neurometabolic disorder characterized by degeneration of the central nervous system. Joshua lived at home with his mom, dad and 3-year-old brother. He was fed by a gastric tube, required frequent suctioning and suffered from seizures and episodes of 'turning blue'. He received 40 hours of nursing care each week and required medications 15 times each day. He had no muscle control, and communicated through facial expression and sounds only. For most of his life, Joshua was held by either the nurse or his mom due to extreme restlessness.
Joshua was a patient of palliative care music therapy from Sept 2001 until his death in March 2004, receiving weekly or alternative weekly visits. The focus of music therapy fluctuated with Joshua’s condition and response level, which varied considerably within sessions. Much of the time was devoted to encouraging, matching, reflecting and enhancing his vocal expression through improvisation. In addition, relaxing guitar or flute music offered relief after intense periods of suctioning or prolonged restlessness. Joshua responded most positively to voice, guitar and flute. His preferred timbres included the tone bar and wind chimes.
Joshua’s mom openly expressed herself without reservation and in the first few months, her tears flowed freely. During several sessions Ruth directed the music to her, inviting participation. During these times she requested songs such as “Amazing Grace”, commenting, “Those words are so true. You really have to have faith to carry on. It's hard. Every day I have to fight. But I know there's nothing I can do to change it”. Of music therapy, she commented: “Joshua always liked music, but I stopped playing it. It seemed with everything else it got pushed aside... Music therapy helps to get back the living aspects of our lives”. Music therapy provided Joshua with a unique opportunity to express a part of himself that he otherwise could not. In music therapy he experienced joy, comfort and relaxation. This in turn brought benefits to the whole family.
Sadly, Joshua died in March 2004, just 2 days after his grandparents arrived to meet him for the first time. Ruth organized the music for his funeral, incorporating songs that were meaningful to his family. She paid tribute through flute music and vocals with guitar. She played a postlude to accompany his casket out of the church. At the graveside, Joshua’s mom requested a favourite lullaby to be sung. At this stage, music helped this family to grieve and to find comfort in the music
that had been an important part of Joshua’s short life.

Individual Goals
Music therapy sessions are designed to address the evolving needs of each child through a positive, affirming therapeutic relationship. Individual goals in music therapy may include to:
· Increase a sense of autonomy
· Promote creativity / spontaneity
· Promote self-expression / expression of feelings
· Promote mobilization of remaining inner resources and strength
· Decrease anxiety
· Promote sleep / relaxation
· Enhance quality of life
· Promote meaning
· Enhance quality of dying
· Facilitate age-appropriate development where appropriate
· Promote gross/fine motor development where appropriate

The Story of Zachary
Zachary was a 7-year-old boy diagnosed with Neuroblastoma (cancer of the nerve endings) at age 4. Penny only saw him twice in his home. During this time, Zachary was very sick and in pain, and did not seem interested in participating in music therapy sessions. He did not attend school, and remained lying on the couch most days. Goals for Zachary included:
· To promote meaningful interaction between mother and child
· To decrease anxiety and increase relaxation
· To reminisce
· To improve quality of life
Working with Zachary illustrates an example of a more passive involvement in sessions. Zachary would not play instruments, sing or volunteer information. In fact, he became irritable when asked most questions. He remained with his eyes closed during the majority of the sessions. However, as Penny sang some familiar songs, Zachary’s foot could be seen subtly tapping to the music. Penny also elicited information from Mom about some of Zachary’s favourite things, and was able to sing about them. Zachary visibly relaxed at one point as his mother rubbed his painful leg while Penny sang and played quietly on the guitar. After the first session, Zachary agreed to let Penny come back for a second session. His mother indicated that this was a sign he was enjoying it, as he was known for asking some professionals to leave his home. For the third session, Penny had planned on incorporating imagery and relaxation to music, but unfortunately, Zachary passed away before she had the opportunity. While the interaction was brief, the music appeared to provide a calming effect while giving Zachary a little joy during such a difficult time.

Interventions
Music therapy service is individualized, and is based on the needs, strengths and desires of the child and family. While most music therapists are familiar with these interventions, the following specifically addresses their application to paediatric palliative care:

· Singing: The therapist will sing selected songs for/with a child and/or family. The family/child may choose meaningful familiar songs to allow reminiscence. They may also choose spiritual songs, or songs with themes of hope, dying or love. The music therapist can also vocalize to syllables. Simple step-wise melodic fragments to match the breath are most appropriate for those children who are very fragile and/or close to death.
· Song writing: A child’s expression is selected by the therapist to create a song with or for the child. For younger child, lyric substitution to a familiar song may be used. The family may be invited to contribute to this process or to write a song for/about their child. For example, Joshua’s mom wanted to write a song expressing her love for her sons but found it difficult to find the words. Ruth realized Donna’s song could be found in the words of a poignant Christmas letter Donna wrote to her family. Ruth extracted the words from the card to create “Being a Mom”, and together they set the words to music.
· Playing Instruments: According to physical ability and interest, a child is invited to select and play a musical instrument with the therapist. Some clients are unable to do this physically. It may be appropriate for them to observe, listen and touch the instruments for stimulation. The therapist may provide hand over hand assistance. Families are encouraged to participate with instruments of their choice, or on an instrument they may be proficient in. One father played the piano while Ruth played the flute, offering his dying daughter her favourite song, ‘Good Kind Wenceslas’.
· Making personal tapes: A child celebrates and is celebrated through his or her own music. Music made with the therapist is recorded on a tape that may provide a tangible memory after the child’s death. Music provides loving memories. Ruth has had several experiences where the tape made with a child became an integral part of the funeral, memorial, or mourning rituals of a family.
· Story-telling to music: The use of imagination and fantasy facilitates expression of a child’s issues or experience in a non-threatening manner. 'Stories' may be improvised or composed through spoken word or song, with or without instruments. For example, with a child in the intensive care unit, the therapist may sing to him/her of how they are loved by the family, and surrounded with gentleness and peace.
· Guided relaxation: Familiar images and music are incorporated to develop a personalized relaxation routine for a child. This may be recorded and kept at the bedside. This may also
be a key intervention for children who are in pain, very weak, and/or who are not able to actively participate in music-making.
· Movement to music: Where possible, the therapist may encourage gentle movement. This might include rocking a baby while singing to him/her. Often movement is appropriate for children whose deterioration is prolonged, thereby promoting the greatest level of mobility.
· Improvisation: Free expression is encouraged through unstructured vocal or instrumental music-making. During an improvisation, melodic or rhythmic themes often emerge which the therapist uses to enhance musical dialogue. At times, this may be the only form of communication for a child.

The Story of Branden
Branden was diagnosed at age 4 with Leigh’s disease. Leigh’s disease is a rare inherited neurometabolic disorder characterized by degeneration of the central nervous system. Symptoms of Leigh’s disease usually begin between the ages of 3 months to 2 years and progress rapidly. In most children, the first signs may be poor sucking ability and loss of head control and motor skills. These symptoms may be accompanied by loss of appetite, vomiting, irritability, continuous crying, and seizures. As the disorder progresses, symptoms may also include generalized weakness, lack of muscle tone, and impairment of respiratory and kidney function.
Branden was not typical in his presentation of the disease. While prognosis is generally poor, it was uncertain how long he might live. Branden was hospitalized approximately once every month or two for 1-3 weeks for episodes of vomiting and diarrhea. At the time Penny worked with him, Branden could not walk but could sit up independently for short periods. Branden required a tracheotomy to assist with his breathing, and needed suctioning and some oxygen. He was fed through a tube in his stomach, as eating orally was not possible. He also had poor fine motor skills. Branden’s communicated effectively through facial expressions, gestures and some vocal sounds.
He had a good sense of humour and loved music. He required 24 hour nursing care including 8 hours/day provided by an agency. A teacher, physiotherapist and occupational therapist visited regularly.

Goals and interventions for Branden included the following:
1. Increase feelings of control.
· Provide choice of instruments and songs
· Provide opportunities for successful music-making

2. Promote communication and creative self-expression
· Music with fill-in-the-blanks or multiple choice
· Improvisation
· Song writing

3. Promote expression of feelings
· Songs that identify feelings (i.e. If You're Happy and You Know It)
· Songs with meaningful lyrics
· Song-writing about hospital and experience of illness

4. Enhance quality of life
· Provide opportunities for meaningful interactions
· Maximize participation, choice, and opportunities for accomplishment
· Experience joy of music making

5. Promote age-appropriate development
· Music about animals, numbers, colours, etc.
· Read books with music

6. Maintain gross/fine motor skills and range of motion when/where
appropriate
· Instrument playing (range of instruments requiring different physical movements)
· Action songs

Summary:
While Branden’s communication was so limited, and his isolation great, music helped him to connect with others and to express himself. In a day where most hours are spent sleeping and watching television, music provided stimulation, and promoted development and interaction. Branden clearly enjoyed the sessions, as evidenced by his repeated smiling during music therapy sessions. He was also able to express a wide range of feelings through movement and facial expression in response to the music. He took control of how the sessions progressed, making decisions about when, where, and how he would be involved. All of these things, along with his pure joy in making music, ultimately lead to a better quality of life for Branden. He continues to receive music therapy service, and his family and nursing staff report how much Branden responds to music.

Family Centred Care
Family centred care is the model of care practised throughout the hospital. The following are some of the underlying principles in providing family-centred music therapy services to paediatric palliative patients at HSC. They are adapted from HSC’s “Standards of Practise for Palliative Care”.

General Principles:
· Music therapist acknowledges and works within the existing family dynamics to bring comfort and healing.
· Through music interventions, the therapist is able to assess, identify and address the needs, hopes, fears, expectations and coping skills of the child within the family context.
· The music therapist will encourage exploration of spiritual needs and desires.
· The music therapist supports existing religious and spiritual values and beliefs of the child and family through appropriately selected music and music interventions.
· Music therapy offers ongoing opportunity for choice according to a child's level of ability to interact with the therapist and/or the music.
· Children who are too compromised to participate in other activities may continue to benefit from music therapy for the duration of their life.
· Music therapy seeks to enhance the interaction between the child and loved ones for as long as possible for connection, comfort and communication.

Family Music Therapy Goals
According to the family's evolving needs, family goals for music therapy may include to:
· Increase meaningful interaction (siblings, parents to child and each other)
· Provide unique form of comfort and support
· Promote reminiscence
· Provide quality memories to assist in bereavement process
· Provide tangible expression of child as memoir (e.g. tape)
· Encourage expression of loss
· Refocus hope
· Encourage expression of anticipatory grief:
· Create an environment in which the child and family feel it is safe to express feelings that are often difficult to understand and not easily shared
· Encourage expression of their grief through music.
· Encourage reminiscence through appropriate music therapy interventions.
· Celebrate the meaning of each child's life and their unique contribution, through music
· Be available to consult for use of music in funeral services, burial ceremonies and/or other culturally appropriate rituals
· Create a legacy of the child's music/music life according to the desires, wishes of the child and families.
The Story of Alicia (Ruth)
I met Alicia as a beautiful 18-month-old girl. Her parents were given the news 6 days earlier that there was nothing more medically that could be done to treat her brain tumour and that her life would last another 4-6 weeks. I visited her in her home twice. The first time, after an initial period of shyness, Alicia responded strongly to the music. Curious and inquisitive, she gathered all her favourite instruments near. She beat steady rhythms on the lollipop drum, smiling and directing mom to join in. Soon mom, Alicia and I were making rousing, beautiful music. She threw her arms over her head in jubilant delight.
When I saw her 4 days later, Alicia was showing signs of deterioration with obvious increasing central nervous system impairment. She was beginning to drool and appearing sedated. Four days later she was hospitalized for pain management. On this particular day, I was greeted by her mom in the hallway. She felt thin in my arms - this mother now required to relinquish her only child. In the room, Alicia was being held and constantly stroked by her father. Family members from China and other parts of Canada were nearby. They were talking freely of her loveliness and expressed amazement at how quickly she had deteriorated. They talked of what a special child she was - how everyone was drawn to her. Grandma arrived a few days earlier to meet Alicia for the first time. Alicia smiled and laughed "more than I've heard her laugh in a long time”, Mom said. The day after her visit with grandma, Alicia quickly deteriorated.
In her hospital room her parents played her favourite ‘Mozart CD’, smiling, laughing about her - remembering her life. "Maybe she's an angel who was sent for a little while”, mom said.
I listened to them revel in their daughter's uniqueness and beauty. We talked of her remarkable affinity for music since her birth. The way she knew what sounds she liked/disliked immediately, (Her parents had started a piano fund), how well she communicated without words, how she knew which remote operated which machine. When the music stopped, I started to sing quietly to Alicia, who was asleep, probably unconscious in her dad’s arms.
"Alicia you are beautiful"…. and "Thank you for coming" I sang, adding out loud, “Even though it wasn't long enough.”
“Your voice is so soothing,” mom said. They were happy when I offered to bring the guitar. At the sounds of the first strums, everyone came into the room and gathered around her. Dad rubbed her head and cheeks and said, "I wish I could just touch the tumour away.” Some wiped away tears to the strains of lullabies and peaceful, soothing songs.
Mom broke the mood by saying, "If Alicia was awake she would say, “YEAHHHHH"
throwing her arms over her head. We laughed and started some upbeat celebratory music. Then mom recalled how Alicia loved the bells and the drum; so I soon returned with the colourful lollipop drum, tambourine, shaker and 2 hand bells. Mom took the drum and began to beat. Soon both grandmas picked up an instrument and started rhythms with our music. I improvised a C pentatonic melody, and the music surged and swayed. Although we could not speak the same language, we were together in the music supporting this child, giving her strength for her journey and holding her parents as they could only watch her go.
As the music closed, grandma gave a final cadential shake on the colourful seed shaker. Everyone laughed and smiled. But the Grandmas continued, playfully picking out music.
I brought in the multi-tone rhythm pot and grandma began to pick out a melody and hum a song. Dad explained, "they are remembering the music from when they were young ….in the 50's in China…”.
There was something lovely, in that moment. This beautiful child, surrounded by love, celebration and music, laughter and tears. This child, destined for another place, was surrounded with the love and music of her family, her ancestors.
Story of Joshua H.
Joshua was a few months old when Penny received the referral from the NICU bereavement coordinator for music therapy sessions. Joshua was born with severe brain damage and the inability to eat orally, and was expected to live a few days to a few weeks. The family, consisting of Mom, Dad, 5-year-old Sarah, 2-year-old sister Courtney and little Joshua, decided to take him home to die.
Upon arriving at the house for the first session, Penny was immediately engulfed by the 2 little girls, Mom and Grandma. They were clearly very curious about music therapy and were eager to participate. After a few assessment sessions, Penny was able to formulate goals for both the client and the family. It was also becoming clear that while Joshua’s health was precarious, the prediction of his prognosis might be questionable.
Joshua was able to respond to music through facial expressions, some hand over hand instrument playing, movement and sleep. Goals for Joshua included stimulation and development. At times, when he appeared agitated, the music served to calm him and allow him to sleep.
Family goals included facilitating meaningful interaction between family members, and promoting siblings feeling important and special. While Penny sang and played guitar, Sarah spontaneously began placing colourful scarves over Joshua to keep him warm. This elicited a conversation about other ways Sarah helps her mother with Joshua. Mom played up Sarah’s helpful interactions with her brother. These were incorporated into the song, and Sarah happily and proudly sang about being a “special sister”:

Putting the blanket on baby brother
Keeping him nice and warm
I am a very good helper to Mommy
I am a special sister too.

In other sessions, Sarah would sit on her mother’s lap with Joshua in mother’s arms and quietly play the tone bar or chimes while singing “Are you sleeping, brother Joshua” to the tune of “Frere Jacques”.
This case highlights some of the benefits of incorporating family members into music therapy sessions. Music can serve as a powerful bond between family members, and can provide opportunities for the whole family to express their grief.

Specific Issues and Challenges
One of the challenges of working in the community involves working in someone’s home. The space within a home is not always ideal for a music therapy session. There may be distractions such as telephones ringing, television, and other visitors. The space can be too big or not contained. However, by working in the family’s space, the relationship between family and therapist becomes more equal, and trust seems to develop more quickly. The family often appreciates the therapist working around their schedule and in the convenience of their own home.
Another challenge and/or benefit to community work is including family members in sessions. The presence of other children in the home necessitates flexibility in including them in the music therapy session. Sessions have included parents, siblings, grandparents, nurses, therapists and other visitors. The challenge in particular of working with siblings is that their needs may be very different than that of the palliative child. Often siblings feel left out and seek extra attention from all who enter the house. However, music therapy sessions can also be a very powerful tool for addressing sibling concerns and issues, and can help to strengthen the sibling and parent bonds.
Because the definition of palliative care is broad enough to include any child with life-limiting illness, this poses problems in terms of how long to carry a case. While some referrals involve children who are in the acute stage of dying, other referrals are for children who are expected to live for many years. Deciding on appropriate goals and length of treatment are particularly critical with these children.
Lastly, the emotional toll of caring for dying children is an aspect of the work that the music therapist needs to be aware of and address on an ongoing basis. It is imperative that each therapist find his/her own method to deal with grief associated with or evoked by the work. Failure to do so can make it difficult to be fully present to the client/families needs and can lead to personal or professional burnout. The following are some ways to assist in this process:
· Support of other team members, or like-minded colleagues
· Adequate sleep, exercise and healthy diet
· Self-awareness and self-care, including knowing one’s abilities and limits
· Nourishing supportive personal relationships
· Practise of spirituality or faith
· Personal expression honouring grief, including art, music and dance.
· Time in nature for renewal
· PLAY!

Multicultural Aspects
Toronto is a city that boasts at least 72 languages, representing many nationalities, cultures and religious groups. At least 50% of the children served at HSC come from families where English is not the mother tongue. The implications for music therapy are many. Families are encouraged to express and explore the music of their heritage. Very often children in such families are steeped in the music of North American popular children’s entertainers.
At every opportunity Ruth encourages parents to use their ‘own’ music and to make music for or with their child. She recently assisted a non-English speaking mother to make a tape for her dying infant son in the Neonatal Intensive Care unit. This provided the baby a chance to hear his mom’s voice, when she was unable to be in the NICU. Owing to his fragile condition the parents were not able to hold him for many weeks. The music served as a way for them to hold him.
Recently a young girl from Nunavut was hospitalized and became very ill. Although she was initially frightened, withdrawn and anxious, music therapy offered her comfort and provided a means of self-expression. Ruth facilitated music therapy for the family by giving dad and his daughter each a drum. Dad immediately began beating a steady rhythm, singing songs of the north. Soon his daughter joined him, astonishing the medical staff with her confident expression.
A young girl from Afghanistan was a patient on the Bone Marrow Transplant Unit. Although her dad insisted he couldn’t play an instrument, when Ruth handed him a drum, he came alive. He beat out strong vibrant rhythms of his heritage. His daughter relished the chance to make music with her dad, improvising on the glockenspiel. The room literally burst into life with their music, surprising the staff, who knew them only as very shy and reserved.
Grieving, death and burial practises vary greatly between and within cultures. It is important for the music therapist to be cognisant of the needs of each family she/he works with and to use culturally appropriate music. For example, an Asian family played a tape for their dying child that constantly repeated a particular refrain. This was chosen because the child had once expressed a liking for this music, and they believed it was important to meet all the child’s wishes before death in order to ensure her next life would be better. The therapist played this simple refrain on the flute as a part of the opening of the sessions.
Another example relates to a non-English speaking grandma who kept vigil over her dying 2- week-old grandson by chanting to ease him into the next world. Ruth joined the chant supporting the family until his death. Grandma was most appreciative, believing that more voices would offer him more help. The family continued chanting for 16 hours after his death as required by grandma’s religious beliefs.

Interdisciplinary Model of Care
The core Palliative care team at the Hospital for Sick Children includes a part-time physician, an acute care nurse specialist, a palliative / bereavement care coordinator, a part-time nurse, and a part time music therapist. In addition, the team works closely with social workers from the hospital, Interlink nurses, and nurses on the units. Many community agencies are also involved with these patients.
The role of the team is to consult regularly with the child and family to develop, implement, evaluate and document a plan of care. The team consults closely with other programs at HSC, such as Oncology and Pediatric Medicine.
Communication is key in working in this program, as there frequently many people working with one child. As music therapists, we are working on the front line. This often means that the family shares their concerns or requests with us. It is crucial to work closely with other psychosocial professionals so that the child and family receive comprehensive and consistent care. This can be a challenge when working out in the community, as it can become very isolating. For example, Penny was working with a client with a severe seizure disorder. At the time of discharge from hospital, the child’s seizures were relatively under control. However, during a home visit, the mother remarked that the child’s seizures had increased considerably. She was frightened and uncertain how to proceed. Penny was able to contact the clinical nurse specialist, who upon consultation with physicians, recommended that mother bring her child to emergency immediately.
On another occasion a social worker informed Penny that a family referred for music therapy was having trouble accepting their child’s imminent death. This knowledge allowed Penny to be more sensitive to this issue when visiting, and to tailor the session accordingly.
The palliative care team meets on a regular basis to discuss clinical cases, to share information and to educate hospital staff. They also hold a monthly open forum where staff from the hospital can attend to discuss or consult around a palliative care case.

Professional Development and Education
Education is a key component of working as a music therapist in any facility. However, because there is only one music therapist within such a large hospital, and music therapy is slow to be accepted among the medical professions, this role is even more critical to promoting music therapy. Ruth has been involved in teaching the palliative care team and other services about the role of music therapy, how to make appropriate referrals, and the impact of music therapy on clients. She has also presented at various conferences and organizations outside of the hospital.
A brochure was prepared with the assistance of the hospital Graphics Design team in order to introduce families to the concept of music therapy in palliative care. The brochure answers questions about music therapy, how to access it, as well as describing music therapy education and training. It also outlines several scenarios drawn from clinical experience to show how music therapy meets the needs of children and families. Staff and families have found this beneficial to introduce and explain the role of music therapy in palliative care.
An annual memorial service was initiated in April 2001 for parents and families whose children have died from cancer. This is held offsite and organized by the staff of Hematology/Oncology. Ruth has organized the music and performed at the service.

Clinical Review
Clinical Work is documented daily according to direct time spent with patient and parent and indirect time, such as meetings, rounds, scheduling, reports, staff consult, session preparation, care of equipment, travel/transport and documentation. Records are kept daily of time spent in different aspects of the role. During the first 2.5 years of service, 39 referrals were received, resulting in 354 visits. 34 of these visits took place in the hospital.

Questionnaire
As part of the evaluation of the music therapy palliative care program, a 15-item questionnaire was designed for Parent/Caregivers. A similar 13-item questionnaire was developed for Health Care Providers. The questions were formed based on Paediatric Oncology quality of life indicators and end-of-life care literature. The parents were asked to indicate their answers on a 5 point Likert scale ranging from 'Not very helpful' 0 to 'Very helpful' 5. There was also opportunity for comments. Some of the questions were as follows:
Did the music therapy help your child express his/her feelings?
Did the music therapy improve your child's mood?
Did the music therapy help the child feel more relaxed?
Did the music therapy help to relieve the child's pain?
Did the music therapy bring your child pleasure?
Did the music therapy help you feel close/closer to your child?
Did the music therapy provide you with good memories of your child?
Overall how helpful was music therapy to your child?
To date, 14 completed parent/caregiver questionnaires have been received. Most of the responses were in the ‘helpful/very helpful’ range. Most indicated the music therapy support to be of a social, emotional, and spiritual nature. The answer regarding relief of child’s pain indicated the most ambivalence. Most people responded “does not apply” to this question. We have 6 completed health care provider questionnaires. The majority responded “very helpful’ to all the questions with a few responding ‘helpful’. Some of the parents’ comments included:
“The introduction of music therapy brings much peacefulness...It is obvious the joy he receives…”

“I will always treasure those memories. They were one of the happiest times we had at the hospital”.

“It helped me during (a) difficult time. It made me breath easy and expresses my feelings when singing with the therapist”

“When I see B. this happy, I become very happy myself”.

Health Care Providers’ Comments included:
“Music therapy gave parents a way to help Alicia to relax but also allowed them to express their emotions and feelings. It provided them with wonderful memories of their child” (Interlink Nurse).

“I have seen wonderful evidence that music therapy provides a comfort to the pt/family that other members of the team cannot accomplish. Very valuable” (Interlink Nurse).

“I think music therapy played a key role in providing a supportive environment for Alicia and her family as Alicia was dying. - especially the work that Ruth did with the entire family in creating such a unique and loving environment” (Social Worker).

“I have had several opportunities to observe, even join in! I notice how Ruth's presence makes a huge difference in this family's lives. I am a strong proponent” (Home visiting nurse).

Future Directions
Securing funding for music therapy services is an ongoing challenge. The 2 day/week service continues to be funded by external donation. A private foundation established by the parents of a child Ruth worked with holds regular fundraising events for the music therapy program. Should enough funds materialize, music therapy will be offered to more palliative patients within the hospital rather than primarily the community.
Ruth and Penny hope to see expansion of music therapy services in the hospital to include other services besides Oncology and Palliative Care. A step towards this involves a recent endowment that was set up to support music therapy services in the hospital.
Ruth and Penny initiated a formalization of the documentation system for music therapy notes and reports. This continues to be a project the whole Palliative Care team is working on. Lastly, Ruth and Penny also believe that a bereavement group would be most beneficial for this population. This is a service the team is considering at this time.

References
Aasgaard, T. (2001). An ecology of love: Aspects of music therapy in the paediatric
oncology environment. Journal of Palliative Care, 17 (3), 177-181.

Aasgaard, T. (2002). A suspiciously cheerful lady: A study of a song’s life in the paediatric oncology ward and beyond. British Journal of Music Therapy, 14 (2), 70-82.

Antle, B. et al. (2002, September). Can we ease the burden? A qualitative study of parents’ perceptions of end-of-life care for the children. Paper presented at Hospital for Sick Children, Toronto, ON.

Bailey, L. (1984). The use of songs in music therapy with cancer patients and their families. Music Therapy, 4 (1), 5-17.

Barrera, M., Rykov, M., & Doyle, S. ( 2002). The effects of interactive music therapy on hospitalized children with cancer: A pilot study. Psychooncology, 10, 10 –20.

Brodsky, W. (1989). Music therapy as an intervention for children with cancer in isolation
rooms. Music Therapy, 8 (1), 17-34.

Daveson, B. (2001). Music therapy and childhood cancer: Goals, methods, patient choice and control during diagnosis, intensive treatment, transplant and palliative care. Journal of Palliative Care, 17 (3), 114-120.

Daveson, B., & Kennelly, J. (2000). Music therapy in palliative care for hospitalized
children and adolescents. Journal of Palliative Care, 16 (1, 35-38.

Davies B., Breener P., Orloff S., Sumner L., & Worden W. (2002). Addressing spirituality in pediatric hospice and palliative care. Journal of Palliative Care, 18(1), 59-67.

Fagen, T. (1982). Music therapy in the treatment of anxiety and fear in terminal pediatric
patients. Music Therapy, 2(1), 13-23.

Froehlich, M. (Ed.). (1996). Music therapy with hospitalized children: A creative arts child
life approach. Cherry Hill, NJ: Jeffrey Books.

Gallicchio, D. (1999). Peter and the Wolf: Music therapy and children undergoing
chemotherapy. Audiotaped proceedings of the 49th AMTA Annual Conference,
Washingon. Walkersville, MA: Satellite Video Production.

Lane, D. (1996). Music therapy interventions with pediatric oncology patients
In M. Froehlich, (Ed.), Music therapy with hospitalized children: A creative arts child life approach (pp. 109 – 116). Cherry Hill, NJ : Jeffrey Books.

Lee, C. (Ed.) (1995). Lonely waters: Proceedings of the international conference
music therapy in palliative care Oxford 1994. Oxford, UK: Sobell.

Liben S., & Goldman, A. (1998). Home care for children with life-threatening illness. Journal
of Palliative Care, 14(3), 33-38.

Loewy, J. (Ed.). (1997). Music therapy and pediatric pain. Cherry Hill, NJ: Jeffrey Books.

Marley, L. (1984). The use of music with hospitalized infants and toddlers: A descriptive study. Journal of Music Therapy, 21(3), 126-132.

Martin, M. (2001, April). Pediatric palliative care. Video presentation at Humber College Palliative care conference.Toronto, ON.

Munro, S. (1983). Music therapy in palliative /hospice care. St. Louis, MO: MMB Music.

O’Callaghan, C., & Colegrove, V. (1998). Effect of the music therapy introduction when engaging hospitalized cancer patients. Music Therapy Perspectives, 16, 67-74.

Pfaff, V., Smith K., & Gowan D. (1989). The effects of music-assisted relaxation on the distress of pediatric cancer patients undergoing bone marrow aspirations. Child Health Care 18 (4), 232-236.

Robb, S. (1999). Piaget, Erikson and coping styles: Implications for music therapy and the hospitalized preschool child. Music Therapy Perspectives, 17, 14-19.

Robb, S. (2000). The effect of therapeutic music interventions on the behaviour of hospitalized children in isolation: Developing a contextual support model of music
therapy. Journal of Music Therapy, 37 (2), 118-146.

Roberts, R. (2003, Sept). Voices of Authenticity and Integrity: A music therapist’s self-inquiry in working with children facing a life-threatening illness. Unpublished Masters Paper, Wilfrid Laurier University, Waterloo, ON.

Salmon, D. (1993). Music and emotion in palliative care. Journal of Palliative Care, 9 (4),
48-52.

Sourkes, B. (1995). Armfuls of time: The psychological experience of the child with a life-threatening illness. Pittsburgh, PA: University of Pittsburgh Press.

Standley, J., & Hanser, S. (1995). Music therapy research and applications in pediatric
oncology treatment. Journal of Pediatric Oncology Nursing, 12(1), 3-8.

Turry, A. (1996, May). A song of life. Proceedings of the 24th National Conference of the Canadian Association for Music Therapy. Windsor, ON.

Turry, A. (1997). The use of clinical improvisation to alleviate procedural distress in young
children In J. Loewy, (Ed.), Music therapy and pediatric pain (pp. 89 – 96). Cherry Hill,
NJ: Jeffrey Books.

Wolfe, J., Grier, H., & Klar N. (2000). Understanding of prognosis among parents
of children who died of cancer: Impact on treatment goals and integrations of palliative care. Journal of American Medical Association, 284, 2469-2475.

Wolfe J., Grier H., & Klar N.(2000). Symptoms and suffering at the end of life in
children with cancer. New England Journal of Medicine, 342, 326 -333.