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7-9-2012

The Effects Of Original Songwriting In MusicTherapy Sessions On The Hospice Experience AndBereavement Process Of Patients And TheirFamiliesJill Christine AndersonThe Florida State University

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Recommended CitationAnderson, Jill Christine, "The Effects Of Original Songwriting In Music Therapy Sessions On The Hospice Experience AndBereavement Process Of Patients And Their Families" (2012). Electronic Theses, Treatises and Dissertations. Paper 4692.

THE FLORIDA STATE UNIVERSITY

COLLEGE OF MUSIC

THE EFFECTS OF ORIGINAL SONGWRITING IN MUSIC THERAPY

SESSIONS ON THE HOSPICE EXPERIENCE AND BEREAVEMENT

PROCESS OF PATIENTS AND THEIR FAMILIES

By

JILL C. ANDERSON

A Thesis submitted to the College of Music

in partial fulfillment of therequirements for the degree of

Master of Music

Degree Awarded:Summer Semester, 2012

Jill C. Anderson defended this thesis on June 08, 2012.

The members of the supervisory committee were:

Jayne Standley Professor Directing Thesis

Alice-Ann Darrow Committee Member

Dianne Gregory Committee Member

The Graduate School has verified and approved the above-names committee members, and certifies that the thesis has been approved in accordance with university requirements.

ii

ACKNOWLEDGEMENTS

Many thanks are due to all the professors, family, and friends who have helped and supported me throughout this undertaking. I truly appreciate the knowledge, time, advice, caring, and patience I have received from everyone along the way. Thank you.

To the hospice that helped me with this study, and the family members who contributed their insights and shared their experiences with me, I am very grateful. Your stories were touching and heartfelt, and your giving natures a blessing.

Jen, without you none of this would have been possible. Youre the bell ringer, an angel sent from God, a generous spirit, a beautiful person, and a rock star! Thank you so very much for all that you do.

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TABLE OF CONTENTS

................................................................................................................................List of Tables v

........................................................................................................................................Abstract vi

......................................................................................I. Introduction and Review of Literature 1............................................................ Music Therapy Outcomes in the Hospice Setting 1

........................................................................................ Songwriting in Music Therapy 3........................................................................................... Caregivers and Bereavement 10

.....................................................................................................................................II. Method 15....................................................................................................................... Participants 15

.............................................................................................................................. Design 16.......................................................................................................................... Procedure 16

............................................................................................................................ Measure 17

....................................................................................................................................III. Results 18................................................................................................................. Participant One 18................................................................................................................ Participant Two 19.............................................................................................................. Participant Three 21

................................................................................................................ Participant Four 23................................................................................................................ Participant Five 24

.................................................................................................................. Participant Six 26.............................................................................................................. Participant Seven 27.............................................................................................................. Participant Eight 29

......................................................................................................... Summary of Results 31

..............................................................................................................................IV. Discussion 39............................................ Limitations of Study and Implications for Future Research 40

....................................................................................................................... Conclusion 42

..............................................................................................................................APPENDICES 43A. .................................................................................................... ..Interview Questions 43B. ............................................................. ..Human Subjects Committee Approval Letter 45C. ..............................................................................................Participant Consent Form 47

.............................................................................................................................REFERENCES 50

.......................................................................................................BIOGRAPHICAL SKETCH 55

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LIST OF TABLES

.........................................................................................Table One: Participant Demographics 15

....................Table Two: Session Attendance, Use of Song at Funerals, and Recommendations 31

................................................................................Table Three: First Mention of Songwriting 32

.............................................Table Four: Time of Death Compared to Ability to Listen to Song 33

................................................................Table Five: Themes in Perceptions of Music Therapy 34

..................................................................Table Six: Themes in Perceptions about Songwriting 35

.........................................................................Table Seven: Themes in Perceptions of Hospice 36

..........................................................................................Table Eight: Themes in Bereavement 37

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ABSTRACT

The purpose of this study was to examine the effects that music therapy, and songwriting

in particular, have on the family members of hospice patients. Participants (N=8) were chosen

from an available group of families who experienced songwriting in hospice care, whether the

patient wrote all or part of a song, or the family wrote a song about the patient. Individual

interviews were conducted with each participant, and each participant answered a series of

questions regarding their hospice experience, their perception of their loved ones experience,

their bereavement, and their experience with music therapy. Results showed that families found

hospice overall to be a very positive experience, and that music therapy played a large role in all

their perceptions of hospice care. All participants initiated discussion of music therapy and their

familys song early in the interview, and all had many positive things to say about the music

therapist, the song, and the meaning the song had for them and their family. In the majority of

cases, the song written in music therapy was played at the memorial or funeral service. Other

common themes noted were that for many, the song sent a message, embodied their loved one, or

gave their loved one a sense of purpose. Many of the participants knew nothing or little of music

therapy prior to their experience in hospice, and they all found it to be rewarding, and much

more involved than they expected. Many of the participants still listen to the song, although a

few indicated that it was difficult for them or that they could not listen to it yet. However, they

all said that the song has a special meaning for them.

vi

CHAPTER ONE

INTRODUCTION AND REVIEW OF LITERATURE

Music Therapy Outcomes in the Hospice Setting

Music therapy as an element of hospice care is a growing phenomenon because so many

studies have found benefits for both patients and families. Krout reviewed a large number of

hospice-related studies and found many possible positive outcomes for patients, including

expression of feelings, relaxation, decreased anxiety and pain, improved communication,

spiritual support, decreased nausea, and life-review facilitation, among others (Krout, 2000).

Clements-Corts (2004) cited several case examples of patients who were able to find ways to

express their thoughts, fears, and emotions through music therapy in a palliative care setting.

Some of the goals for these patients included decreasing isolation and depression, increasing

communication and self expression, and increasing reminiscence and relaxation, all of which

appeared to be met during their sessions. In another series of vignettes, Sheridan and McFerran

(2004) found that in pediatric palliative care, using music therapy sessions to give children

choices and control during their care increased their quality of life. Methods used varied from

child to child, but included stories accompanying music, songwriting, and the child controlling

the therapists movements through musical motifs. Other treatment goals were reported by

Hilliard (2003), such as decreasing worry, loneliness, anger, pain, nausea, and shortness of

breath. In Hilliards study, the Hospice Quality of Life Index- Revised was implemented to have

patients self-report their quality of life at the end of music therapy visits. With 80 participants

divided into experimental and control groups, Hilliard found that those who received music

therapy reported significantly higher quality of life, and that their quality of life continued to

increase with more music therapy sessions. Conversely, those in the control group reported

lower quality of life, and their scores decreased over time. In another study by Hilliard in 2004,

it was found that nursing home patients in hospice care who received music therapy services

lived significantly longer on hospice than those who did not experience music therapy, and that

music therapists provided support for physiological, cognitive, emotional, social, case

management, and spiritual needs. Additionally, participants received significantly more visits

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from music therapists than they did social workers, and the visits were also longer. Hilliard

hypothesized that it was possible that music therapy for terminally ill nursing home residents

enhances quality of life such that people are able to sustain longer durations of life on the

hospice program with music therapy (Hilliard, 2004, p. 276). Hilliard touched on the aspect of

spirituality, but in a 2007 article, Wlodarczyk examined the link between music therapy sessions

and feelings of spirituality in ten hospice patients. By using her participants as their own control

in an ABAB design, Wlodarczyk determined that on days that patients received music therapy,

their spiritual well-being scores increased significantly. Even in a pilot study of ten Japanese

hospice patients with cancer, quality of life was increased through music therapy sessions, which

were performed in small groups according to Japanese customs and cultural preferences. Study

results showed decreased anxiety and depression, increased excitement, and decreased stress as

measured by salivary cortisol levels and a self-report Mood Inventory (Nakayama, Kikuta, &

Takeda, 2009).

Quality of life was also increased for patients in a single session through improved pain

control, physical comfort, and relaxation in a study by Krout (2001). His study used patient self-

report measures and observer measures to calculate participants state before and after a single

music therapy session and found significant improvements for all three variables using both

measures. As in Hilliards 2004 study, the interventions used by the music therapists varied from

patient to patient, but Krout reported similar goals of increasing interactions and control,

providing support and comfort, improving relaxation and life review, and providing opportunities

for spiritual discussion and expression of feelings. In a 1999 article by Starr, three case studies

are presented as anecdotal evidence of music therapys power to effect those on hospice care. In

one case, an older patient with dementia was able to communicate emotions to her family

through song, and in another, a young boy in a coma responded to a question at the end of a

music therapy session, to the delight and surprise of his family and doctors. In the third case, a

patient with end stage cancer found some relief from her pain through singing. Despite all these

findings, however, there is little mention in these studies of families reactions to this increased

quality and length of life. Hospice and palliative care music therapists have many tools at their

disposal in the treatment of their patients, but one of particular interest is that of songwriting.

2

Songwriting in Music Therapy

The use of songwriting in music therapy has been well documented. Research studies

have been completed in a variety of music therapy settings, including psychiatric, medical,

rehabilitation, substance abuse, and hospice and palliative care. Researchers have found

songwriting interventions can help clients to express emotion, vent frustrations, tell their story,

decrease anxiety, exercise choice and control, improve mood, cope with grief and trauma, and

reflect upon themselves, among others (Baker, Kennelly, & Tamplin, 2005a, 2005b; Baker,

Wigram, Stott, & McFerran, 2008; Cordobs,1997; Dalton & Krout, 2005; Jones, 2005; Kooij,

2009; Mayers, 1995; OCallaghan, 1996; Robb & Ebberts, 2003a, 2003b; Silverman, 2003,

2011; Wlodarczyk, 2009). Schmidt described several techniques for facilitating songwriting

interventions, including word substitution, song collages, rewriting existing lyrics, improvising

songs, or using 12-bar blues form as a structure (Schmidt, 1983). In a 1990 article, OCallaghan

presented another overview of songwriting, accompanied by techniques she had found helpful

for facilitating it. One of her most important tenets was that of offering clients as much control

in the process as they wanted or was possible. This included lyrics, melody, style, genre, tempo,

dynamics, and the title. Other researchers have built on her ideas and philosophies, resulting in

the much wider array of songwriting studies present in the literature today. Studies of

songwriting interventions span all ages, but children have benefitted significantly, especially in

the area of oncology.

Children in an isolated oncology setting receiving bone marrow transplants may benefit

from songwriting music therapy interventions (Hadley, 1996). Hadley found that through

songwriting methods of fill in the blank, parody, blues style, and original songs, children were

able to increase communication, improve coping skills, express their feelings, and gain a sense of

control. In other studies of children undergoing bone marrow transplantation, Robb and Ebberts

(2003a) used the State-Trait Anxiety Inventory for Children (STAIC) and the Childrens

Depression Inventory (CDI) to examine the effects of songwriting and video production.

Anxiety and depression varied depending upon what treatment phase the participants were in, but

overall, the intervention decreased anxiety. In their follow-up study, Robb and Ebberts (2003b)

concluded that lyrical themes of the childrens songs included independent coping, hope, family

3

support, positive and negative physical status, positive mental status, staff support, family

support, and appreciation. While not coded exactly as other researchers themes from palliative

care or traumatic brain injury studies (OCallaghan, 1996; Baker et. al, 2005b), the lyrics in this

study seem to express some similar ideas, suggesting that even children may have similar needs

met through their songs.

Ledger performed a case study with an adolescent with cancer and found that through

song parody, a girl who previously seemed somewhat withdrawn and expressed some denial

about her illness was able to take control, make choices about her song, acknowledge her fears

and strengths, and gain a sense of accomplishment and pride (Ledger, 2001). In another case

study with children, Mayers demonstrated that children who had experienced trauma (physical

and sexual abuse or family breakdown) were able to cope better when they wrote their own

songs to describe their feelings. They performed their songs for parents or in some cases sang

them to themselves when dealing with problems, but in all cases the songs gave them a sense of

self-expression, control over their situation, and helped to ease their anxieties (Mayers, 1995).

Robb describes similar outcomes in a series of case examples of adolescents who have been

traumatically injured. Some of the outcomes noted through songwriting were increased self-

expression and self-esteem, helping patients adjust to the hospital environment, increased

communication, and expression of repressed emotions (Robb, 1996).

Mental health patients are another prominent area in the songwriting literature. As early

as 1976, Ficken used songwriting in a psychiatric setting to benefit patients with depression,

anxieties, and substance abuse problems. He explained through case examples that using group

and individual songwriting, clients were able to express themselves and begin to work on their

various needs in therapy (Ficken, 1976). In another study, Kooij engaged three patients with

schizophrenia, major depression, bipolar disorder and anxiety, and analyzed 17 songs they had

written in addition to interviewing them. She found that all three participants saw their illness as

something like a journey on a continuum between sickness and health, encapsulating aspects of

their destinations, their identity and sense of control, their level of social engagement, and hope.

Her conclusions were similar to Fickens, in that songwriting helped patients to express

4

themselves, increase social communication, and develop insight and awareness of their emotions

(Kooij, 2009).

In other studies with psychiatric clients, Silverman found similar positive outcomes. In a

case study of a combative patient with schizophrenia, adding an intervention desired by the client

as a contingency for good behavior, combined with other therapies and medication, seemed to

result in a lessening of combativeness and difficult behavior, and an increase in appropriate

prosocial behavior. It was posited by the author that due to the music therapists ability to build a

rapport with the client, and therefore encourage good behavior and trust, the music therapist was

able to help the client transfer his behavior to other areas of the hospital, eventually resulting in

his release (Silverman, 2003). In a 2011 study, Silverman used an experimental group (n=48)

and a control group (n=41) to study coping skills and working alliance in psychiatric patients.

The music group and control group were both single-session interventions, but the music group

used songwriting to discuss coping skills. While there were not significant differences between

the groups on measures of knowledge of coping skills, consumer working alliance, or perception

of enjoyment, the music group did score slightly higher in all three areas. There was a

significant difference between groups for therapist working alliance, where the music therapy

group scored higher, indicating a higher level of involvement in the session. While Silverman

focuses on acute psychiatric inpatient settings, Cordobs did a study on adults who were

diagnosed with clinical depression and who were also HIV positive.

Cordobs investigation used a three group design incorporating songwriting, game play,

and a no contact control group at an adult day center. Each group completed a group cohesion

questionnaire at the end of their group time. It was found that there was no significant difference

among groups for scores of cohesion; however, the songwriting group appeared to more adeptly

address treatment issues and support coping strategies. The music therapist also noted there was

more emotional expression witnessed during the songwriting group and that their song expressed

their feelings as well. Addressing another aspect of mental health, some authors have explored

songwriting with chemically dependent clients.

Freed described interventions with individuals who were chemically dependent and

identified potential goals and methods for songwriting with this population. Some goals the

5

author suggested for this population are expression and validation of feelings, increasing self-

awareness, and finding productive solutions to problems. These are often facilitated through

certain songwriting techniques such as fill in the blank (Cloze) and setting new words to existing

tunes, then using lyric analysis and discussion to explore the finished songs (Freed, 1987).

In a study of clients who were chemically dependent, Jones (2005) compared the music

therapy techniques of songwriting versus lyric analysis to determine which, if either, was more

effective or desirable when working with people with addictions. Using two equally sized

groups, Jones supplied the interventions in a single session and had clients complete Visual

Analogue Mood Scales as measures. Music therapy as a whole significantly increased joy,

acceptance, happiness, and enjoyment, while decreasing guilt, regret, blame, and distrust.

Although the study did not find significant differences between the groups, it did indicate that

songwriting resulted in somewhat larger emotional changes, and that clients showed a greater

preference for songwriting interventions than for lyric analysis. Jones suggested that some

changes were due to the fact that with songwriting, The active process of identifying past,

present, and future ideas, feelings, and plans served to reduce frustration and guilt, where no

such changes were present for the lyric analysis group (Jones, 2005, p.105).

In another study relating to mental health, a group of mothers in parenting classes

participated in songwriting. These mothers had experienced abuse as children, and were having

difficulty as parents. The researchers interviewed five women three years after they had gone

through the program to ascertain the effects it had on them. It was found that the intervention

helped the women to affirm their feelings, increase their awareness of the effects the abuse had

had on them, and brought a sense of achievement that they had each written their own song. All

the women had compact disc recordings of their songs, and several of them still listened to it,

and used it at times to explain to others about their experiences since words were too difficult

(Day, Baker, & Darlington, 2009). Emotionally impaired adolescents have also benefitted from

songwriting interventions.

Edgerton (1990) presented some case examples of group songwriting interventions with

adolescents with emotional problems. The various groups had differing goals that emerged

during treatment, and therefore various outcomes, ranging from increased self-concept and group

6

cohesion, to increased respect and self-expression. The interventions allowed the participants to

openly discuss emotions, issues of racism and compromise, and discover how to work

cooperatively within a group setting. Dementia is another aspect of mental illness caused by

identifiable organic changes in the brain, and Hong and Choi investigated songwriting as an

intervention with this population as well.

During a 16-week study, fifteen residents in a nursing home served as a control group,

and fifteen participated in music therapy sessions involving songwriting-oriented activities. The

Korean version of the Mini Mental State Examination (MMSE-K) was administered to all

participants two weeks prior to the beginning of the experiment, and one week after termination

of the sessions. It was found that the music therapy group showed an overall significant

improvement in their total MMSE-K scores, and in the subsets of language functioning,

orientation, and memory their scores also proved significantly higher than the control group,

indicating that the cognitive activity of songwriting may be helpful in improving function of the

elderly with dementias (Hong & Choi, 2011).

Baker et al. (2005a) analyzed the lyrics of songs that were written using three primary

songwriting methods by patients with traumatic brain injuries. These methods were word

substitution, adding verses to existing songs, and original song compositions. Despite the

varying methodologies of composition and the fact that some songs were completed in one

session and others over the course of as many as eight, the researchers found several common

themes. These themes were: messages, memories, reflections of others, expressions of adversity,

concern for the future, and imagery or spiritual themes. Songs with messages were the most

common, and often contained messages about the patient meant for others. Memories and self-

reflection were another common subject for these patients. The authors point out, however, that

in the case of those with traumatic brain injuries, memories are not to bring closure at end of life,

as in hospice, but rather to contemplate their future life with a disability (Baker, Kennelly, &

Tamplin, 2005b, p. 34). In terms of gender differences, Baker et. al (2005a) found that men were

more concerned about the future and adversity, whereas womens songs tended to reflect

relationships. An analysis of song content based on age led Baker et. al (2005b) to the

conclusion that self reflection is common for all ages, but it is the most common for early and

7

older adolescents. Adults were likely to send messages through their songs, often describing

their lifes experiences in lieu of relational memories (Baker et. al, 2005b).

In another songwriting exploration, Baker et al. (2008) surveyed music therapists to find

out how often and why songwriting was used with their clients. They found that songwriting

was used most with patients in psychiatric settings, and that clients with developmental

disabilities and autism spectrum disorders were also frequently exposed to this intervention.

Intervention goals included increasing self-esteem, increasing opportunities for decision making,

improving the sense of self, expressing emotions, and telling personal stories. The surprising

finding was that songwriting was not used as frequently in palliative care and oncology settings.

However, it was stated that in palliative care settings, clinicians utilize songwriting to promote

the externalization/exploration of feelings, thoughts and fantasies, and promoting coping through

the validation of experiences (Baker, Wigram, Stott, and McFerran, 2008, p. 117-118). Other

goals that were used in palliative music therapy songwriting were communicating messages and

increasing quality of life (Baker et al. 2008).

In a continuation of their studies, Baker, Wigram, Stott, and McFerran completed an

investigation in 2009 examining further characteristics of the usage of songwriting across client

populations. It was found that in palliative care and oncology settings, songs were more likely to

be composed in a single session, patients were usually most responsible for the lyrics, and that

often they also had a significant impact on the music as well through decisions regarding genre,

style, or opinions about therapist-improvised harmonic progressions. Shared stories and songs

were often inspiration for their lyrics, and their songs were more likely to be recorded and given

to significant others.

Patients nearing the end of life are certainly in a different situation than those who are

recovering from brain injury, but OCallaghan (1996) found similar themes to those of Baker et

al. (2005) in her study of palliative patients songs. She studied those ranging in age from

twenty-six to their eighties and suffering from end stage neurological diseases and cancer.

Among the patients with neurological disease, there were varying degrees of cognitive

impairment witnessed, ranging from mild to severe. Songs were written in differing session

formats and over varying lengths of time. OCallaghans analysis of 64 songs by 39 different

8

patients found eight themes: messages, self-reflections, compliments, memories, reflections upon

significant others, expressions of adversity, imagery, and prayers. From this, there were seven

recurring categories in the lyrics of the songs, some of which were compliments to others,

thoughts about experiences and people, memories, thoughts of the future, and thanks for family

members. It was noted by OCallaghan that compliments to others were very important in lyrics,

stating that such lyrics would be important for patients relatives to hear to aid in their

bereavement (OCallaghan, 1996, p. 87). Hogan (2003) specifically names songwriting as a

useful music therapy intervention for patients who are dying, especially if patients are

struggling to come to terms with their prognoses (Hogan, 2003, p. 277).

In a summary of her thoughts on the benefits of songwriting in palliative care,

OCallaghan (1997) argued that there are ten benefits to patients who participate in songwriting.

Among these were the chance to express themselves in a creative way, find ways to talk about

feelings, improve physical and social well being, gain opportunities for decision making,

increase comfort, and offer opportunities for counseling. As a final thought, she stated that

songwriting should be available to all palliative care patients, offering them a chance of

continuing to creatively live a quality life (OCallaghan, 1997, p. 37).

Since songwriting may help the patient, it could in turn help the family; Hogan states that

it alleviates the suffering of their significant others (Hogan, 2003, p. 278). OCallaghan (1996)

cites other researchers (Rezenbrink, 1993; Weiss & Parks, 1983) who argue that the positive

communications that can occur through songwriting can help family members and loved ones

cope in bereavement. Wlodarczyk (2009) states poetry therapy techniques can be combined with

music therapy and may result in patient songs which provide an opportunity for personal

growth, a tangible connection to future generations, and serve as a healing tool in bereavement

for the family after the patient has died (Wlodarczyk, 2009, p.135). In another application,

Krout states that songwriting may be used by music therapists to aid in the bereavement of

others. He argues for the use of therapist-composed songs to accompany bereavement rituals,

which help families to deal with their loss and find comfort and solace in the fact that others may

be experiencing similar feelings. He states that By writing our own songs for such purposes, we

can craft them to best support and facilitate the goals of the programs, and to enable the

9

participants to work and move through their grief journeys in meaningful and healthy

ways (Krout, 2005, p. 123). Being a caregiver is a difficult role, which is well documented in

the literature.

Caregivers and Bereavement

Often times in hospice settings, patients who are close to death are minimally responsive

and unable to communicate with family members who may be present. In a 2003 study, Krout

cited five case examples of music therapys ability to support family members holding vigil at a

bedside. He described how the patients symptoms or appearance may make it difficult for

families to feel comfortable and express their own emotions; music therapy sessions helped all

the families to reminisce, express themselves, and say goodbye to their loved ones. One woman

had even written a song for her husband, which the music therapist helped her to sing at the

bedside shortly before he passed. The inclusion of family members in sessions was a key factor

in another study, which found positive benefits for families of children in palliative care.

Fourteen families participated in five music therapy sessions each, and the parents provided

interviews following the interventions. The researchers found that three prominent themes which

emerged were the feelings that music therapy improved the childs physical state, fostered

positive experiences, and gave the family opportunities for communication (Lindenfelser, Hense,

& McFerran, 2011).

In another study of caregivers, Choi (2010) found that the use of music and music

combined with progressive muscle relaxation decreased anxiety and fatigue in caregivers,

however to some extent these were lessened even in the control group. It was theorized in the

study that this was because those in the control group were free to do as they pleased for the

alloted time, and some chose relaxation exercises or even slept. The author pointed out that

caring for a dying patient creates much stress for the caregivers and can have detrimental

effects on their well-being (Choi, 2010, p. 54). This remark further elucidates the importance of

discovering what music therapy interventions have the most effect on family members, and

which techniques might help them to cope in bereavement, either because of positive experiences

they see happening for their loved ones, moments with their loved ones, or legacies left through

10

music therapy projects in hospice. This is especially important given that Masson (2002) found

that at times, patient perceptions of a good death differ from those of their relatives.

In a survey of ten hospice patients and ten relatives of patients who died in hospice care,

Masson found that some items, such as the nature of the dying act, the level of physical comfort,

and perceptions of normality and sense of control were perceived as important by both parties.

However, caregivers and relatives tended to place more importance on whether their loved one

was peaceful, as well as the concept of preparation and legacies of living. Rhodes, Mitchell,

Miller, Connor, and Teno (2008) found that families were more likely to feel satisfied with

hospice care services if they are kept informed about their loved ones condition, feel

emotionally and spiritually supported before and after the death, get accurate information from

their hospice, and feel they know which nurse is in charge of care. In another study, it was found

that families who felt out of control, stressed, and like they were not communicated with about

their loved ones condition rated the death of their loved one as not good (Workman & Mann,

2007). Obviously, in hospice care it is important to meet the needs of both the patient and the

family. Being a caregiver or family member of a dying person is difficult enough, but the

bereavement that follows can be still another challenge, one that may last through years of

adjustment to the loss of a loved one.

Magill (2009a) performed two studies on the effects of music therapy on caregivers. The

first involved interviews of seven bereaved caregivers of cancer patients. During interviews with

these bereaved caregivers, several trends emerged. The first was music as a conduit for

communication, the second illustrated how music causes physical changes in comfort, the third

emphasized that live music made a difference, and the last was simply that music is love. These

caregivers felt that music therapy was a blessing, and the author concluded that music therapy

served as an aesthetic channel, inspiring patients and family members toward cherished

moments of love and renewed communication, memories that managed to help sustain caregivers

through the difficult days and weeks following the death of their loved one (Magill, 2009, p.

37). In the second study, Magill (2009b) examined the spiritual meaning of music therapy for

bereaved caregivers, again using an interview format. Again, a number of themes emerged

which support the positive effects of music therapy on caregivers. Caregivers reported feelings

11

of joy, both in experiencing music for themselves and in seeing its effects on their loved one, as

well as feelings of empowerment that they were able to participate in an intervention that

benefitted their loved one. These feelings helped these caregivers to come to terms with their

impending loss because of their ability to see their loved one more peaceful and happy, as well as

knowing they too were somehow involved in that change. Another common feeling among the

respondents was that of connectedness brought about through the music, both internally and with

the patient or other family members. It was also thought that the music helped the patient to

connect with whatever was coming after this life for them. Other music therapy studies in

bereavement settings have shown positive outcomes for participants as well.

Hilliard (2001) provided an eight session bereavement music therapy program for school-

aged children using an experimental and control group. He examined the students scores on the

Behavior Rating Index for Children in school environments (BRIC) as well as results from

depression inventories and a Bereavement Questionnaire for Parents and Guardians (BP), and

found that the children in the experimental group who received music therapy-based

bereavement interventions significantly improved their scores on the BP measurement. They

also showed some improvement on the BRIC and in self-report depression levels, although these

were not significant. Register and Hilliard (2008) also posit that Orff-based music therapy

bereavement interventions can help children work through their feelings toward positive

outcomes. McFerran (2011) reviewed numerous studies involving children and adolescents and

concluded that music therapy interventions are valuable tools in bereavement, because they help

participants to express their emotions in controlled, safe environments and learn how to cope

positively with their losses amid a group of their peers. Another article concerning children and

teens presented several songwriting strategies and accompanying case examples. Among the

techniques used were word substitution, computer technology, original songs, and improvised

songs. The author felt that in the various cases, the participants were able to accept their loss,

memorialize loved ones, express emotions, develop coping mechanisms, and increase their self-

esteem (Roberts, 2006).

Songwriting has been used with youth in coping with the loss of a loved one. Dalton and

Krout (2005) analyzed 123 songs written by bereaved adolescents, and found that songwriting

12

was capable of addressing the topics of understanding the death, addressing feelings,

remembering their loved one, integrating loss into their lives, and growing through the loss.

They then developed the Grief Processing Scale to assess adolescent coping and tested it with a

pilot study using further songwriting with bereaved adolescents. They found that songwriting

benefitted the participants and that the scale seemed to be helpful in assessing progress.

Furthering their work in songwriting with youth, Dalton and Krout (2006) developed a Grief

Song-Writing Process protocol based on the five themes mentioned above and used it with study

participants. They concluded that these group songwriting experiences were helpful

environments in which to process grief. In another study involving teenagers, McFerran,

Roberts, and OGrady (2010) provided a music therapy- based bereavement program which

featured songwriting, and asked students to participate in focus groups after the intervention was

completed. They found that the students felt like they were given permission to grieve, and that

it helped them to move on, release their emotions, increase relaxation and communication, and

feel comfortable sharing. In another series of vignettes regarding the effectiveness of

songwriting in palliative and bereavement care, Heath and Ling (2012) elucidate how

songwriting can be used by those on hospice to clarify feelings, leave gifts for loved ones, and

communicate thoughts. They also briefly address the ways that some bereaved children and

adult clients used songwriting to express their feelings about their loss in order to find comfort

and solace.

Hospice music therapy is now a well-established profession, and as shown above many

investigations have found proof of its efficacy. Likewise, music therapy has proven useful in

bereavement, particularly in children due to their developmental needs for specialized care.

However, not many music therapy studies have focused on adult bereavement. Additionally,

songwriting as a music therapy intervention has also shown numerous positive outcomes,

particularly with regard to hospice patients. Family members and caregivers have given positive

feedback regarding music therapy, both for themselves and their loved ones. Despite the myriad

studies relating to music therapy and songwriting, however, there is little work that has been

found by this researcher which explores the perceptions of family members as it relates to the

patients songwriting and hospice experience. This study proposes to examine the effects of

13

songwriting upon the family members and loved ones of hospice patients. Although leaving a

legacy in the form of song can speak somewhat for the patients feelings, those who survive them

have a voice and the ability to share their perspective on the experience, on music therapy, and

on the hospice itself. A plethora of studies were found indicating that music therapy can increase

quality of life for hospice patients, but this current study seeks to go a step further and investigate

whether this change is noticed by family members, and whether it effects their bereavement,

particularly when their loved one wrote an original song or had a song composed for them during

music therapy. The complex occurrences at end of life and the accompanying emotions affect

everyone differently. This study will examine different perceptions of the hospice experience

and find whether or not, despite each familys unique situation, there are common themes in their

reflections of their experience of hospice music therapy and its impact upon their family.

14

CHAPTER TWO

METHOD

Participants

Participants (N=8) were chosen from a convenience sample of families whose loved one

was previously enrolled in a small midwestern hospice. All interviews were completed with one

family member who was close to the patient who passed away on hospice care (either a spouse

or child). In order to qualify for the study, the music therapist who visited the patient and their

family had to have written a song with the patient or for the patient. Family members were

contacted by the music therapist, with whom they were familiar and had a trusting relationship.

The music therapist introduced the study to the family member and asked if they were interested

in talking with the researcher and being a participant in the study. Participants were told that the

study related to music therapy, but were not told that the researcher was specifically interested in

their experience with songwriting. Upon their agreement to participate, they gave consent for

their contact information to be provided to the researcher. The researcher then contacted the

family members to arrange informed consent and interviews.

Table One: Participant Demographics

Participant Age Range Gender Ethnicity Education Religion Relationship to Deceased

1 56-70 M Caucasian Bachelors Protestant Son

2 56-70 M Caucasian High School none specified

Son

3 26-40 F Caucasian Bachelors Christian Daughter

4 56-70 F Caucasian Bachelors Catholic Spouse

5 41-55 F Caucasian Vocational/Technical

Methodist Daughter

6 41-55 M Caucasian Masters Catholic Son

7 56-70 F Caucasian Bachelors Lutheran Daughter

8 41-55 F Caucasian High School Spiritual, none

specified

Spouse

15

Design

This study used interviews with family members to construct a case study format with

gathered data. Each case study consists of their perspectives on the hospice experience.

Although the researcher had a set of questions that was asked of each participant, the course of

the interview was guided by the family members responses and the researcher probed into areas

that the family member brought up voluntarily. All interviews were completed via telephone,

recorded, and played back for examination of content. Research questions this study sought to

explore were: 1) Does the experience of songwriting in a hospice setting influence the familys

perception of the patients dying process? 2) Does having the loved ones song or knowledge of

the song affect the familys grief and bereavement process? 3) Did the songwriting change the

familys perception of music therapy? 4) Did the songwriting significantly change the familys

hospice experience? and 5) Are there any other notable trends in responses from the various

families?

Procedure

The researcher contacted participants to introduce herself and begin the process of

obtaining informed consent. After the initial conversation, either via email or phone (whichever

the participants preferred method of initial contact), the researcher sent out consent forms and a

short demographic questionnaire for participants to complete and send back. Participants were

encouraged to contact the researcher with any questions or concerns they had before signing the

form. Once the participant signed, the researcher contacted them to arrange a time for a

conversation. Interviews took place at the participants convenience via telephone calls. The

researcher reintroduced the study, again not mentioning songwriting, ensured that the

participants did not have any concerns and reminded them that the recordings would be

destroyed after the study was completed. When beginning the interview questions, the

researcher began recording the interview by placing the call on speakerphone and using

GarageBand 2008 software on Macintosh to record the conversation for review. After

completing the interview, the recording was played back and transcribed for analysis.

16

Measure

Descriptive and qualitative analysis measured trends in the responses of patients families

to a set series of interview questions about their hospice and bereavement experiences.

Prominent themes from each interview were identified and organized into categories, and the

number of participants indicating like-minded responses were tabulated. Based on the number of

participants who made like comments, descriptive analyses were applied to display percentage

rates of responses in each category. An independent music therapist examined 25% of interview

transcripts, and categories were compared to those established by the researcher. An overall

reliability of 83.7% was obtained by calculating agreements divided by agreements plus

disagreements for each interview.

17

CHAPTER THREE

RESULTS

Participant One

The first participant, Peter, was the bereaved son of a parent who had passed away less

than a year ago. When asked the initial interview question about his sense of his mothers

hospice experience, he responded very positively, indicating that the personal attention was very

meaningful to her, and that hospice was frequently there to check on his loved one. He stated

that his mother was always respected and allowed to speak for herself whenever possible, and

that she would light up when someone from hospice came to visit. Peter felt that everyone

involved in his mothers hospice care was able to provide her with comfort in some way. He also

felt very involved in her care through updates from hospice personnel and stated that hospice

was proactive and not just reactive with regard to her needs.

His experience with his mother was Peters first with hospice, and he found himself very

impressed with the level of care, which was consistent, and so intimate and so caring that they

felt almost like family. Peter felt that his mother was in good hands until the very end of her life.

When the interview began, Peter almost immediately brought up the use of music

therapy, stating that it had a big impact and that the music therapist was the bell ringer. He

stated that music therapy was something his mother looked forward to and that the therapist had

tapped into his mothers musicality and that she just loved it. According to Peter, music was

an important part of his mothers life because she was heavily involved in church music as an

adult, and as his mothers illness progressed, in the latter weeks and months of her life, that was

the brightest spot in her stay at [the nursing home], that was the one thing she looked forward

to. Peter estimated that he attended at least eight to ten music therapy sessions, and whenever

he was not there his mother told him about sessions afterward. One time, another family

member witnessed the music therapy and also had many positive comments about it. Peter

commented that he had no idea music therapy existed prior to seeing a session with his mother,

and that he was thrilled she was receiving it. He also stated that he believed someone less

musically inclined might enjoy music therapy, but wouldnt have participated in it like Mom

did. It is his belief that music therapy definitely affected his mothers quality of life for the

18

good. While he did not want to discount the impact of all the other hospice personnel, he said

that the music therapist was the key and that she really brought into Moms life something

that was so very special right up to the end.

Peter said that when he found out his mother was helping to write a song, it was way

beyond anything I could have imagined. Just the visits were wonderful and sharing the music

but when she got down to that very personal level, and I know it was because she cared so much

for my mother that she wanted to do thatand I think of all that was done from the hospice, all

the good things that were accomplished for my mother, [the music therapist] was the brightest

light of all. When asked about the song that resulted from his mothers music therapy sessions,

Peter thought it was really beyond anything I could have ever hoped forits a real treasure as

far as memories. He felt that writing the song gave his mother purpose and was very

meaningful because she was able to be a part of it. The song was played by the music therapist

at the funeral, and Peter said it was the highlight of the funeral and had a huge impact on

everyone present. Peter still listens to his mothers song, which he has a framed copy of at home.

Peter commented that the greatest source of comfort for him since his mothers passing is

knowing that she is no longer suffering and has gone to be with the Lord, because her suffering

was the hardest thing for him to witness since he felt helpless against it. Although he stated that

the hospices follow-up has been the biggest help during his bereavement, he said that his

mothers song became a visible memory, a treasure, something very meaningful to cherish

going forward, all of this happening at the close of her lifeits very, very special.

Participant Two

Several years ago, Matthew also lost his mother, whom he said he still misses each day.

Matthew had many positive things to say about hospice; he thought they were a blessing to his

mother and often it made her day when someone from hospice visited. He also felt that hospice

was respectful of his mother and allowed her to make her own decisions whenever possible.

When asked if anything specific came to mind with regard to decision making, he brought up the

music therapist coming to visit and making a recording with his mother singing a song. He

stated that his mother was just elated over it and that she was tickled to death, you could see it

in her eyes and the tone of her voice. Although that particular instance was not a recording of

19

an original song, but rather a familiar hymn that the patient knew, Matthew said it made his

mother very happy and definitely gave her a sense of control.

Matthew also felt that hospice was very effective in providing comfort to his mother.

One day, an off duty hospice employee brought lunch and came to see her; Matthew felt very

grateful that someone cared so much about his mother that she stopped by to spend time with her

on her day off. It embodied much of his experience with hospice, because everyone seemed to

truly care and want to help. He pointed out that the same girl who visited his mother with lunch

was the one who called him late one evening when she passed. He was touched at how upset she

was about it, and said that it was evident how much she cared, despite the fact she had not known

his mother for long. Matthew thought that the people who worked for hospice were the best

thing about it because of their compassion.

Since it has been several years, Matthew said he did not remember too vividly how he

felt after his mother passed away. It clearly still pained him to think about it, but he offered that

his family helped him to get through it, along with his knowledge of his mothers faith. Matthew

knew his mother believed ardently in heaven and in God, and stated that I know shes there

now. He also said he was comforted by the fact that he no longer had to watch his mother

suffer, because that was the most difficult part of the experience for him.

Matthew did not know about music therapy and did not recall knowing that his mother

was receiving it until he arrived one day to find the music therapist making a recording with her.

It was the only session he saw, but he said if it works for anybody else the way it worked for my

mother, I think its wonderful. He felt that part of the reason music therapy was so successful

with his mother was her musical background. Matthews opinion was that did a lot more for her

maybe than it might have done for somebody that had no music sense or hadnt been around it

very much. He summed up his opinion of music therapy by saying that it affected his hospice

experience because families who are going through those times and stuff, and they see

somebody in that situation, anything that makes their life better makes everybodys life that

surrounds them better. His mother would talk about her music therapy sessions with Matthew

when he came to visit her, and he could tell that she was happy on days the music therapist had

visited.

20

When asked what he thought about his mother writing a song with the music therapist, he

began to laugh and said I thought it was great! He commented that his mother mentioned to

him that she never thought once in her life that shed ever record a song or write a song or do a

song, and she did! He summed it up by saying that the experience was unique because not

many people get to do something like that. Matthew has a recording of his mothers song, but

said that he has not listened to it for quite some time, because he has to be in the right frame of

mind to do that since it makes him very sad. He said that things like that are depressing to me,

and Im trying to move on past a lot of that, but that he keeps her song as a keepsake.

Participant Three

Megans mother passed away 20 months prior to the interview. Megan was very open to

discussing her familys experience while her mother was in hospice care and had nothing but

good things to say about the care they received. She summed up what she felt her mothers

thoughts were and said she absolutely loved hospice. Her mother knew that her disease would

be terminal and initially involved herself in a transitional program, eventually enrolling in

hospice care and beginning to take advantage of the other services offered, including music

therapy, which Megan brought up early during the interview.

Megan said that her mother was musically inclined and had sung in choirs at church

over the years, so she was immediately drawn to the music therapy because of course she

enjoyed it, it brought her joy, and she probably figured it would bring her peace and just help

her. She also felt that the music therapist tapped into her mothers faith and helped her accept

the situation, so she was comfortable with hospice, but with the music therapist in particular she

had a wonderful connection, and she was so pleased, I mean it really made a difference for her.

It was at that point that Megan brought up the song, saying that her mother had supplied the

lyrics and the music therapist did the music. Megan said that the song was then played at her

mothers bedside throughout her illness up until her death. She also mentioned that the song was

played by the music therapist at her mothers memorial, stating that hospice is there for the

terminal ill, but its also support for the family, right? And so, it was [the music therapist]

definitely, and the music therapy that she provided touched my mom and our family alike...

Megan remarked that she has not listened to the song for a while, but the song has influenced her

21

after her mothers passing because it is like her speaking to us again and again that this is my

experience and Im very much at peace with it, which the family finds comforting.

Megan made copies of the CD with her mothers song on it and gave them to everyone at

the memorial service. She said that the song was like her goodbye, the lyrics of the song have

to do with kind of her life and how she wanted people to remember her. So, it was like her

message also, it was almost like her parting message to everyone who she wouldnt be able to

say goodbye to. The song defined who she was for everyone who heard it.

Another significant experience for Megan came in the last days of her mothers life when

she was on oxygen to help her breathe. With the help of hospice team members while she was

still able to communicate, Megans mother had completed a Five Wishes document, which

indicated that she did not want her life prolonged artificially. Megan said that while she was

grappling with the decision of what to do for her mother, hospice gently reminded her of the

document, which gave peace to her and comforted her in making the decision to remove the

oxygen support, which she said has helped her since her moms death. Overall, she felt that the

hospice provided much comfort to her mother and the family, stating they were encouraging,

supportive, resourceful, and available throughout the experience, which were the best things

about hospice in her mind.

With regard to her bereavement, Megan did not feel the need to attend any of the

hospices offerings, but appreciated the follow-up regardless. She felt that her mother was very

much at peace with dying, and the whole experience was I mean, dying can be beautiful, it

was as beautiful as we could have expected. Like some other respondents, she felt that her

mother had gone on to a better place, and that a lifetime of good memories, along with the

support of hospice, family, and friends, was helpful in getting her through after the loss. In

addition to her mothers song, Megan said she often reads bible verses her mother wrote out on

cards and talks to her children about their grandmother.

Megan knew a bit about music therapy before hospice, but she said she was not sure that

she would have associated it with hospice, and thought it was used more for rehabilitation

purposes. Her initial ideas were that someone would sit at the bedside and play music, and to

some extent that did happen, but with the songwriting she felt that so much more was

22

accomplished because the process evolved into something so personalized. Megan saw three or

four sessions and felt like music therapy was so much more probably than I ever could have

imagined and that music can bring you to a time or a place or a feeling. In addition to that,

they could certainly continue to use it for people to communicate their final wishes or what they

want people to remember. Megan felt it was a beautiful thing because it lived beyond my

mom, you know? It wasnt just for her but its for all of us, and its also for her to communicate

to all of us something that she cant because shes not here anymore.

Participant Four

Elizabeth lost her husband to cancer three years prior to the interview. She said that he

had initially looked into hospice, decided he was not ready for it, and eventually signed up for

services five to six weeks prior to his death. She stated that it was a good experience for him

and that he was very alert until the very end and enjoyed interacting with hospice personnel,

whom she felt gave him control and allowed him to express himself. She expressed that the

availability of care at all times was the best thing about hospice. Elizabeth brought up music

therapy right away and said her husband really enjoyed it, and that the whole family were music

lovers. Her summation of their experience in music therapy was Oh wow! When asked why

she said that, she replied, writing the songshe wrote a song for our family after coming

several times. She followed this by saying that the song was the best gift of the entire

experience with his illness. Its just a wonderful, wonderful keepsake for us. Elizabeth

emphasized, I play that song so much, I cant tell youits just the best thing ever.

When she described the songwriting experience of the family, Elizabeth said that they all

sat around and reminisced about family memories together, and the music therapist suggested

writing a song, which surprised the whole family. She worked with the family to turn their

thoughts into lyrics. The music therapist had completed a chorus for the family and was

planning to bring it to let Elizabeths husband hear it; however, he died suddenly before getting

to hear the song. When Elizabeth and her family heard the completed portion, they asked the

music therapist to complete the rest of the song, which was eventually put onto a CD recording.

The music therapist also sang at the funeral, although the familys song was not performed.

23

Elizabeth had some previous contact with music therapy when her husband was in a

hospital for treatment earlier in his illness. Still, with hospice, she said that the music therapy

was more than what I expected because she thought it would be more like in the hospital, with

just some music at the bedside while the patient relaxed. She felt like the music took a very

depressing, dark time and made it enjoyable since her husband looked forward to visits. Her

husbands quality of life was improved, and Elizabeth said that when she thinks about hospice,

music therapy is the first thing to come to her mind. She stated that their family song had many

memories incorporated into it. Little did I realize how wonderful that gift is, when we were

doing it. I really had no idea what it would mean to me. Elizabeth grew tearful and said she

listens to the song whenever she drives to the cemetery to visit her husbands grave. As far as

memorializing her husband, the song is very important to her because she really captures the

essence of him in the chorus, in what a giving person he was, and in the endshes done a

wonderful job of capturing who he was. So thats why I think that besides all the memories,

thats why the song is so special to me. Because it just makes me feel him. Elizabeth said that

in addition to the song, a bereavement group, her faith, family, and friends helped her to work

through her grief. She now finds comfort in the word hospice because it brings to mind an

organization that was there for her in her time of need.

Participant Five

Alices mother passed almost two years ago, but she had many positive things to share

about the whole familys experience in hospice. Her mother came from a medical background,

and knew that her neurological disease would progressively worsen, so she signed up for

hospice. Alice and her siblings originally thought that hospice only came in when someone was

about to die, so at first they were frightened that their mother was worse than they thought. They

soon came to understand that hospice helps not just to die, but to live, and saw their mother

forge bonds with all the hospice personnel over the next two years, during which time she wrote

numerous songs in music therapy.

Alice felt that hospice allowed her mother to live with dignity and die the same way

because they gave her mother control over her care, kept her informed, and allowed her to

express her feelings to counselors, pastoral care, the music therapist, and nursing staff. She said

24

that her mother was always kept comfortable, both physically and emotionally, because of the

services offered. Additionally, the family was allowed to express their emotions to the

counseling staff too, so that everyone felt as though they were heard and empathized with. Alice

felt that since her mother lived for two years on hospice care, she was able to really take

advantage of the services and build relationships with everyone, which made the whole

experience even more comforting and meaningful to them. Music therapy in particular helped

give Alices mother an outlet for her creativity as she began to lose her ability to do things she

loved.

During her two years on hospice, Alices mother wrote several songs. She was a writer,

and the music therapist suggested setting some of her words to music, after which songwriting

became a regular activity during their sessions. Her mother had a lot of input on the melodies,

style, and tempo. Alice saw about six or seven sessions, and said that her mother just loved it.

She even lived long enough to attend the debut of the CD on which several of her songs were

featured, which Alice said was huge for her. On days when her mother was tired or not feeling

well, Alice described relaxing sessions of bedside music, but overall the songwriting was her

Moms whole life. Alice felt as though music therapy affected her moms whole experience,

because it was a time when we saw Mom wanting to be so engaged. She did not realize how

comprehensive and involved music therapy could be; she knew it was used with other

populations, but imagined it mostly for older people in nursing homes. She said that her mother

had no idea she would actually be writing music.

Since her mother passed, Alice has not gone to any bereavement groups. Instead, she

relied on her church, her family, and her friends, where she felt she had ample support. She said

the use of the hospice counselors while her mother was alive helped to keep their relationship

good, and therefore helped her after her mothers death. Alice was not able to listen to her

mothers music for some time after she died because it was too emotional for her. However, now

she says she listens to the songs occasionally, and feels like none of them are really about dying,

its about their lives or situations, which changed the songs from something sad to helping her

remember positive things. Alice finds comfort in thinking about how much her mother loved

writing songs.

25

Participant Six

Bruce and his family have suffered two great losses in recent years. Bruce lost his son,

and then two years ago, his mother passed away as well. Her illness was difficult for Bruce, in

part because he did not live nearby and was unable to visit his mother in the nursing home very

often. He did not have much involvement with hospice, but said having them to look after her

made him feel better, because at least he knew there was someone there to spend time with her.

For Bruce, the care and personal attention he felt his mother was given were the best things about

involving hospice, and he said he would recommend them to others.

When asked what he thought his mothers perception of hospice was, Bruce immediately

brought up that his mother had been a singer for many years and that she also enjoyed writing

poems and had even written for a newspaper for some time. Therefore, it was a high point in

her life working with [the music therapist]. He thought since his mother had lost the ability to

participate in music as she got older and could no longer perform, working on a song with the

music therapist was a great comfort to her because it allowed her to be immortalized in some

small way and gave her purpose because she was writing something other people would hear.

Bruce went to music school and was acquainted with some music therapy students,

however, he still did not realize exactly what it was used for until now. He felt that the music

therapist may have gone above and beyond what somebody else would do, but you know,

obviously it did change my perception of the field. He also thought that his mother got more

out of music therapy than most people would because of her musical background. It was his

opinion that music therapy did increase his mothers quality of life because it allowed her to be

productive, and that helped him to feel a bit better about her being in the nursing home.

The song that Bruces mother wrote began with a poem that she penned about her

grandson who had passed away. She asked the music therapist to set it to music. Having not

seen any music therapy sessions, Bruce was not aware of exactly what his mothers role in

writing the melody was, but he felt that she probably had some input, and that it made her feel in

control of something. He said that his mother often talked of the time she spent in music therapy

and he could tell it made her happy. After his mother passed, her song was played for the family

for the first time at her funeral. Bruce said we kind of knew it was coming but we didnt know

26

to what extent and that it was important for us for our son to not be forgotten, and its

important for us for our mother to not be forgotten.

After Bruces son died, he said his mother was never quite the same, and he still feels

some anger toward her because she did not take care of herself and died too young. Despite this

though, Bruce commented that he still keeps the CD with his mothers song on it in his car, and

listens to it occasionally when thinking about them both. The song helps him to remember his

mother in a good way, without feeling anger, because it was something nice that she did, and to

have that one piece that was written for him by her is a nice remembrance.

Participant Seven

Stephanies father passed approximately nine months prior to the interview, and was only

on hospice for a short period of time. In that amount of time, though, much was accomplished

for her dad and her family because of the caring people of hospice. Stephanie felt her father had

a good experience with hospice, because he was kept comfortable and the pastoral care, nurses,

and other people they interacted with seemed truly concerned and thoughtful. When asked if her

dad was able to express himself while on hospice, Stephanie brought up music therapy and said

that her dad was able to sing along with the family and the music therapist during the first visit,

which she said was very meaningful to him because of his strong faith background and the fact

that his wife and family surrounded him for the experience. Additionally, she said the use of live

music really enhanced the experience. Next to the music, it seemed as though the spiritual care

was the other important aspect of her fathers experience.

Music therapy was brought up again when Stephanie talked about her own experience

with hospice. She is a musician, and said that music really touches my soul because its so

important to me, so when she came it really fed that part of me, you knowit ministered to my

soul. However, Stephanie did not know too much about music therapy before experiencing it in

hospice and explained that she associated it with children with special needs and older adults and

was unaware that it was used in hospice. She also expressed surprise that the therapist was

willing to provide spiritual music, as she thought it might be limited to secular songs only.

Despite not knowing these things though, her family still accepted music therapy services when

the hospice offered them.

27

Stephanie said that her father and the family had picked out some verses for the funeral

that they planned to set to music, but when the music therapist came back later in the week, her

father was no longer able to interact or respond. Instead, the music therapist engaged the family

in reminiscing about and describing their loved one, and in a single session, the family had

helped to write lyrics and a melody about their father. The whole family was surprised and

somewhat taken aback at what they were able to accomplish. Stephanie and the music therapist

then sang the completed song at the end of the session, after which she said everyone was crying

and told them they wanted the song to be sung at the funeral as well.

Stephanie had already planned to sing one song for the funeral at her fathers request, but

when this other song happened, you know, it just felt like the right thing to add to his service

and to share with the people that were there, and I think it meant a lot to our family to go through

that experience as well. She found the experience comforting and not as difficult as she

anticipated. Her faith helped carry her through the experience, and she felt that other families

might not be able to write a song like hers did since they were musically inclined. She felt that

God wanted them to have the experience that they did, and that for other families who might not

have a musical background, it would be a good experience if they would give it a try. Unlike

some other bereaved family members that participated in this study, Stephanie said she listened

to the song immediately after her fathers passing and found it comforting. She still listens to it

on occasion when she thinks of him.

After her father died, Stephanie found several ways to memorialize him and work through

her grief. She said that talking with friends and loved ones and telling them about their familys

experience with songwriting was very helpful, and that they had commissioned a memorial for

him in their church as well. She summed it up by saying the music added so much for us that it

really helped, I think, that grieving process, to be able to think back on that week, that I wasnt

sad. I was glad that we could do this song for my dad to honor him, and so it just kind of

changed the perspective on how you look at the last week. You know, it wasnt a dreadful week,

it was a peaceful week.

28

Participant Eight

Sandra lost her husband eleven months prior to the interview, and it was still difficult for

her to talk about it at times. She felt that he had a good experience, in part because he had

volunteered for hospice and knew the people within the organization, so he had a pre-established

relationship with them. She also said that he felt wonderful about it because for the first time

in ten years, he was able to live without pain. The fact that he was physically comfortable at last

was something in which they both took solace.

Sandra also knew that the music therapy was another prominent feature which made her

husbands experience a good one. While talking with the music therapist one day, he showed her

some letters he had received from his children which detailed how important he was to them, and

they decided to write a song using the letters for lyrics. Sandra said it was just amazing to see,

because [he] was able to be a part of it, a part of how he wanted it, and he got to have input

about how it should sound. When the music therapist brought the song back completed for her

husband to hear, he was here but not really here, but Sandra knew that he could hear it,

because when another person sang to him later on he squeezed her hand. Sandras husband was

able to plan his funeral while on hospice, which she thought was beautiful, and he had

requested that the music therapist play his song at the service. Sandra felt that writing his song

increased her husbands quality of life because it gave him something to think about. I dont

want to say a mission, but, it gave him joy in knowing that she was going to bring it all together

for him.

Music therapy was something that neither Sandra nor her husband had heard of prior to

hospice, but being music lovers, they decided to give it a try when it was offered to them.

Sandra said that she didnt know there was anything like that as part of hospice, I thought it was

awesome. It gave them both a time where they could just relax and enjoy being together along

with the music. Another reason they chose to engage in music therapy was that it was another

level of support from hospice they could utilize. At first, Sandra thought that music therapy

might just be something like a singalong, but after hearing it explained to her and seeing it

firsthand in three or four sessions during the final weeks of her husbands life, she now sees it as

something that can help her go to a peaceful place.

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Sandra thought that during her husbands time on hospice, he was certainly allowed to

make his own decisions, but he often deferred to her, except when it came to his songwriting.

She loved that the hospice involved the whole family and not just the patient, because she felt

that the staff took care of her as much as they took care of her husband. Sandras husband was

very expressive during his final days, and one instance that still brings Sandra comfort is

something he told her late one night. He described to her that he could see multiple family

members who had already passed, including Sandras mother, his daughter, a friend, and his own

parents. He told Sandra that they wanted him to come meet some other people and that they

were all standing behind a curtain of sorts, waiting for him to be with them. Sandra said you

hear all the time that there is something out there after we leavebut for someone to experience

it and be able to tell you what theyre seeing, it was very powerful for me. It was also

something that she felt brought peace to her husband.

Sandra said that she has had a very difficult time since losing her husband because of

changes in her own health and shifts within the family structure. She created a memorial for her

husband in her living room which displays his ashes, photos, and other mementos of his life. She

has read the lyrics to his song, but has not been able to listen to it yet. Sandra tries to look at all

the good and think of all the good times we had, such as vacations together and other good

memories. She feels as though she has been holding back her grief and is just now beginning to

work through it, but she said I cant speak higher of hospice. The whole experience was

absolutely wonderful, and I think the way that they pull in the whole family, not just the patient,

is wonderful.

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Summary of Results

Table Two: Session Attendance, Use of Song at Funerals, and Recommendations

Participant Number of Sessions Witnessed Song Played at Memorial or Funeral

Would Recommend This Hospice to

Others

1 8 - 10 Yes Yes

2 1 No Yes

3 3 - 4 Yes Yes

4 5 - 6 No Yes

5 6 - 7 Yes Yes

6 0 Yes Yes

7 2 Yes Yes

8 3 - 4 Yes Yes

There was a fairly wide variety in the number of sessions witnessed by the family

member who was interviewed, ranging from none up to ten. Also, the amount of time that their

loved one was on hospice varied greatly, ranging from one week to two years. Therefore, one

participant saw all the sessions that occurred with their family in one week, whereas another saw

only six or seven sessions over the course of two years. Despite these differences, every person

interviewed had positive comments about the hospice, the music therapy, the songwriting

experience, and the music therapist. In 75% of the cases, the song that was written by or for the

patient was performed as part of the funeral or a memorial service. Of the remaining two cases,

the music therapist played at the funeral (but did not perform the song) in one, leaving only one

instance in which neither the music therapist nor the song was involved in memorial services.

Every participant indicated that their experience was positive enough they would recommend

this hospice to others.

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Table Three: First Mention of Songwriting

Time in the Interview at which Songwriting was Mentioned Number of Participants

Percentage of

Participants

First spoke about songwriting during initial question of interview:Do you have any sense of your loved ones perception of their hospice experience?

5 62.50%

First spoke about songwriting during second question of interview:Do you feel like your loved one was given opportunities to make their own decisions while on hospice care if that was possible?

1 12.50%

First spoke about songwriting during third question of interview:Do you think your loved one was able to express him/herself while on hospice?

1 12.50%

First spoke about songwriting during fifth question of interview:Tell me about your experience with hospice.

1 12.50%

The data in the above table show that 62.5% of participants initially mentioned

songwriting when asked the first interview question regarding what they thought of their loved

ones hospice experience. One person mentioned it during the second question, one during the

third question, and one brought