Moxley

THE INTERNATIONAL JOURNAL OF NARRATIVE THERAPY AND COMMUNITY WORK | 2015 | No.2 www.dulwichcentre.com.au 58

Leaving a legacy’ and ‘Letting the legacy live’: Using narrative practices while working with children and their families in a child palliative care program

Linda Moxley-Haegert

Linda Moxley-Haegert has working using narrative practice ideas and in child palliative care both in Newfoundland and Montreal since 1991. She currently works as a clinical psychologist in a hospital, school and college setting. She can be contacted at [email protected].

AbstractThis article provides an overview of narrative practices used with children who are dying and their families in a hospital palliative care setting. Narrative practices of subordinate storyline development, remembering conversations and definitional ceremony, living documents, and collective narrative practice, are used to allow children to ‘leave a legacy’, and for parents to ‘let the legacy live’. This piece also includes reflections on working in bilingual contexts, as well as some ethical considerations of working with children in oncology settings.

Key words: narrative therapy, palliative care, cancer, paediatric health care, re-membering conversations, double stories, subordinate storyline development, definitional ceremony, living documents


This paper presents an innovation of practice regarding how narrative therapy and community practice ideas could be used in a hospital setting with families who have received the news that their children will likely die. I wondered how I could work with the families while listening respectfully and honouring their sorrow and despair, yet not hearing only the problem story. Hedtke (2000, 2012, 2014) and White (1989, 2007) taught me the narrative practice of re-membering conversations and I saw how they could be helpful before and after the death of a child. I wondered how, in my role as a psychologist in children’s palliative care, I could assist families to also find stories of skills, competencies, beliefs, values, commitments, and abilities in a manner that would help them find ways to voice their special knowledges. How could one find a way that their children’s presences might remain? I have also often wondered if children would be interested in using narrative collective ideas (for example, Denborough, 2010; Ncube, 2006) to make legacies. In this paper, I outline how I answered these questions by using narrative practices to help the children with their identity life projects, which would leave a legacy and assist the parents so as to let that legacy live.

Narrative practices to generate and share knowledges so children could ‘Leave a legacy’

‘Never in their wildest dreams could a parent think they would have a child diagnosed with a life-threatening condition. Then, when it happens, it seems like their greatest nightmare. But when that nightmare turns into knowing a child will die, the reality of this wild dream seems like a living hell. Yet these parents must live on, and the children too, for some time. While working with these families, my aim is to have conversations that can be healing. I often wondered how to have such conversations and not end up only with stories of suffering. I asked myself, ‘How can I respect their very difficult story, and yet find stories of mastery and coping? How could we together find ways that achievements, knowledges, and resources can be voiced?’

I wrote these words in Little steps (Petits pas in French), the book developed with Marie-Claude Proulx, nurse specialist for palliative care, and nine families in our bereavement community. In contemporary North American society, experiencing the death of a child is relatively rare, but the impact of this loss can affect families for a lifetime (Field & Behrman, 2003) and often has a greater psychosocial impact on the bereaved than other types of loss (Hunt & Greef, 2011; Pudrovska, 2009; Rosenberg, Baker, Syrjala & Wolfe, 2012; Rubin & Malkinson, 2001; Rubin, Nadav, Malkinson, Koren, Goffer-Schnartz & Michaili, 2009;

Wortman & Boener, 2007). The death of a child is reported as leading to one of the most devastating and intense forms of grief (Davies, 2004; Rando, 1986) and has a greater negative impact on the mortality and psychosocial outcomes of the bereaved than other types of loss (Li, Laursen, Precht, Olsen & Mortensen, 2005; Li, Precht, Mortensen & Olsen, 2003; Pudrovska, 2009; Rosenberg, Baker, Syrjala & Wolfe, 2012; Rubin et al., 2009).

Narrative practices have been shown to help people acknowledge problem stories while still being able to become aware of alternative non-problem stories (White, 2007; White & Epston, 1990). While these alternative stories are not always readily available when times are very difficult, the outcome of narrative practices can be the ‘thickening’ of the alternative storylines of people’s lives, and having them more deeply rooted in history. (White, 2005). Furthermore, as Michael White wrote, ‘If psychological pain can be considered to be a testimony to … purposes, values, beliefs, aspirations, hopes, dreams, moral visions, and commitments, then the experienced intensity of this pain can be considered to be a reflection of the degree to which these intentional states were held precious by persons’ (2005, p. 19). White (2001) also stated that life is an identity project and that identity is a public and social achievement, not an individual achievement. The ‘Leaving a legacy’ work documented in this paper follows the practice of searching for double stories, and regarding pain as testimony to what people hold precious, in a broadened social context of meaning-making and identity formation.

The work of searching for double stories honours the struggles families face after medical treatments have failed, while also trying respectfully to discover and voice alternate stories of their skills, abilities, and special knowledges, and rich stories about the identity of the child who is dying (White, 2004, 2006). The problem story is everywhere in the hospital setting because the knowledge that a child is dying is known by parents and all professionals working with them (although it is sometimes not stated to the child). Hedtke (2014) stated that narrative approaches help the psychosocial team in cancer services engender hope, and my experience has shown the same for families of dying children. One great challenge in this work is handling the experience of devastation felt after hearing that treatments have not worked. Understandably, families can find it difficult to think that there is any other account than the very negative story in this situation. There is a delicacy of timing, because if one talks too soon about the idea of leaving a legacy, then people could feel that their story of difficulty is not being heard. Sometimes the word ‘legacy’ is never used. The work is called a ‘project which lets others learn about us’, or ‘messages for family and friends’, or ‘a way of helping others who might have similar experiences’. This is part of the ethics of this work, which I deal with later in this paper.


Spreading the news

Many narrative practices are used in this work, including re-authoring and re-membering (White, 2007). However, since I believe that identity is a public and social achievement, what I have called spreading the news or sharing courage is also a major part of the ‘Leaving a legacy’ program that I co-developed with the children and their families. That is, identity, based on narrative ideas and using special knowledges, is strengthened by sharing (Denborough, 2006, 2010; Lunn, 2008). Definitional ceremonies play a large part in this (Moore, Talwar & Moxley-Haegert, 2015). White stated that ‘definitional ceremonies provide a context for rich story development’ which can ‘re-grade people’s lives in contrast to many rituals of contemporary culture that judge and degrade people’s lives. Definitional ceremonies provide people with the option of telling or performing the stories of their lives before an audience of carefully chosen outsider-witnesses’ who ‘respond to these stories with retellings that are shaped by a specific tradition of acknowledgment’ (White, 2007, p. 165).

In this ‘Leaving a legacy’ work, we celebrated new knowledges, relationships that are precious, and the special hopes and dreams we have and can share with others. We held ceremonies accompanied by recitations, special songs, art shows, and music. We created an audience. We gave out individual certificates. The children put these on Facebook, sent DVDs to friends and family, and put films and art work on display. In this way, children became even more connected with their skills, hopes, and dreams. Sharing the legacies enable them to feel the value of what they had and found precious.

Meaning-making

Narrative assumptions are related to meaning and meaning-making frames in building identity. In a workshop in Montreal, Quebec, in 2007, Michael White stated that we are very selective in what we take in as meaningful. Narrative therapists are able to help people live less in the problem story because of a belief that life is multi-storied. Therefore, the reaction to the potential death of a child depends on past experiences and the meaning-making frames given to this life experience – and even very young children have the potential to develop meaning-making frames.

Bluebond-Langner’s (1978) observations support White’s ideas regarding young children’s ability to develop meaning-making frames and are helpful in my work. Her research suggested that, whether named or not, a child always knows when they have a terminal illness. Bluebond-Langner’s proposed that either we maintain ‘open awareness’ for those

who can talk openly about death, or ‘mutual pretense’ during the moments when people have difficulty, or when parents have not given permission to talk of death with the child. I find in both situations that we know that we are talking of death: in ‘open awareness’, the subject is explicit, and in ‘mutual pretence’, it is implicit. In both contexts, I seek to respectfully use narrative practices and follow the lead of the family and child. Boyd Webb (2009) states that people want their life to have made a difference. She suggests that the legacy of children is measured by their relationships and impact on others. So finding ways to show this impact can help children feel that they have a legacy to leave.

Subordinate storylines and legacies

Listening for subordinate stories helps in leaving a legacy. Even when a child is terminally ill and has stories of pain and hardship, I also hear stories of the celebration of life, such as

• life as an adventure

• stories of appreciating loved ones

• stories of courage

• stories of living for each moment

• stories that make art and music, and

• stories written, filmed, drawn, and painted.

White (2007, pp. 165–218) used re-telling in his work with outsider witnesses and reflecting teams, with written narratives, and other written documents. The telling and re-telling of these stories are what make legacies (Myerhoff, 1982, 1986). In the ‘Leaving a legacy’ program, we take every opportunity possible to organise a re-telling of what is heard from the children (about their skills, hopes, and dreams for life). In the re-telling, children, family, or team members listen and respond back under careful guidance (Moore, Talwar & Moxley-Haegert, 2015).

Since I was told of prognoses but never did know which child will die, I worked very hard to create a bond with all families. Sometimes, deaths are not expected, so we made legacies all the time. The COURAGE (Cancer as an Opportunity to Unite and share Resources in an Amicable Group setting that provides Encouragement) community that I developed in oncology was constantly providing possibilities for legacy (Moxley-Haegert, 2012). This community was created after families asked for a support group. The group later became a program with a yearly plan and, finally, a complete community including many of the oncology team members and most families. Courage is the same word in English and in French, which is necessary in our bilingual hospital. The need for


bilingualism is a challenge, but it also provided a wonderful creative possibility in the work. We tried to name all our projects and have them make sense in both languages.1

Children’s responses to hardship

White (2006) suggested that it is not adequate just to explore problems without exploring how children respond to the problems; children always respond to troubles. Establishing stories of mastery and coping can be like creating islands of safety or a different territory of identity (Yuen, 2007). This helps the child to stand in a different space in relationship to the problem, and we can look at the problem story without re-traumatising the child in our effort to help.

Community-based narrative practices also create islands of safety. I hear how children pray and play, and talk to team members, friends, and family. They present so many ideas about overcoming the storms of life, and I have created several different collective documents with them and the parents to share with others. We collected them in a book placed on the ward and clinic; this is called a living document because it always grows and changes (Moxley-Haegert, 2012; idea from Newman, 2008).

The COURAGE program and collective practice

In our COURAGE community yearly program, we had ten ‘Tree of Life’ family group workshops (Ncube, 2006); monthly ‘Journey of a Lifetime’ groups (based on McPhie & Chaffey, 1998), one for children and one for the parents; and weekly COURAGE ‘questions of hope’. I then introduced definitional ceremonies with outsider-witnesses (Moore, Talwar & Moxley-Haegert, 2015). Throughout the program, capturing children’s words, forming these into documents, and providing for means of expression, was crucial. With narrative practices, it is possible for any child to create in such a way that words become written narratives, or documents, or poems. Poems can then become songs to be recorded; metaphors become works of art, stories become slideshows, ‘hero books’, DVDs, films; and all of these become legacies. For example, we filmed stories that children wanted their family to remember. We had one special bilingual film that an adolescent and his mother created to help other families in palliative care. Several of the children worked together to make another bilingual film in which the children try to give others courage. Along the way, we used narrative questions to lead the discussion and plan the films.

More on bilingualism

The COURAGE day program included bilingual questions to find special knowledges, abilities, values, and beliefs. We worked for community, compassion, co-operation, and hope. Some example questions are:

• What will help you live better with change?

• What are your strengths?

• What are your special abilities?

• How do we help others?

• How do others help us?

• What helps you during difficult times?

Children’s and parents’ responses to these questions show such wisdom! Responses were translated so their bilingual wisdoms could be sent each week to all members of our ‘virtual group’ (each of the 200 families who give their email address so that wisdoms can be shared). The ethics of language are considered, so that a Francophone examined the French translations before they were sent out, since I am an Anglophone (first language English speaker).

Ideas for living

When a child is told that medical treatments failed, it may be necessary to participate in a lot of work, which will not just involve preparing for death, but preparing for life (Albom, 1997; Eaton Heegard, 2003). The use of narrative ideas can make this ‘a daring adventure rather than no life at all’ (Keller, 1957).

Angy, who told me she did not want to talk about dying, had lots of ideas for living. Even as she was dying, she told me of helping a friend who felt suicidal, saying; ‘How can you think of taking your life when I am fighting to keep my own?’ Before her diagnosis, Angy had planned to be an interior designer. After her diagnosis, she decorated her bedroom and she willed it to her sister. I told her that I often write a letter to families about my experiences with a child and family, and wondered if she might like to co-write one with me. She agreed, and in our letter, she wanted her family to know that cancer had taught her many things, that she lived every moment to the fullest, that she was not afraid, and that she was strong.

Megan tried to survive her third cancer but had to stop chemotherapy. She did not talk of dying, but when we did a family Tree of Life exercise in her home (Ncube, 2006), she could not suggest anything to put in her branches (hopes,


dreams, and aspirations). She asked me once if it was harmful not to talk about what was happening. I asked her whether she thought it was helpful or harmful, and she said that for her it was better to just enjoy life. Megan had left many legacies. She had years of responses to COURAGE questions of hope and was an artist as well (see Figure 1). Her voice can be heard reading the collective children’s document in my Dulwich Centre Friday afternoons presentation (Moxley-Haegert, 2012).

Raphael’s story and poem

Raphael had such special knowledges and a special story to tell. The team and his parents knew that he was dying from his brain tumour, but his parents were not in agreement about talking openly with him about his death at that moment. He told me of a dream that he had in which he was dying in a fire and his mother wouldn’t save him. We had a de-constructing conversation about this dream and decided that if it should happen that he was in such a situation and his mother didn’t save him, it was that his mother couldn’t save him (this discussion could be taken at both ‘face value’, but also seen as a metaphor, and therefore an example of Bluebond-Wagner’s ‘mutual pretense’). Later, he and his family went to Florida to see Disneyworld for his special wish. He managed one day at Disneyworld before he became so sick that they called emergency services. When the emergency responders, who

were firefighters, arrived, Raphael, using his dream of a fire perhaps, said to his mother, ‘I am dying, maman (mother), and you can’t save me’. His mother told me that she was so happy that we had had the dream conversation, so they could speak about death that last night (with ‘open awareness’). Raphael loved music (see Figure 2), and wrote a poem that he recorded to music played by the music therapist, Pascal Comeau. His poem demonstrates such wisdom (translated):

Growing the love story

I am nothing but love.

To love is not a quality,

but it is so wonderful to experience.

Everyone can feel love gently each in his turn.

It is one of the only sentiments that is free and that

we can experience day and night.

It enters our hearts without warning.

It takes on life and goes on forever.

You need never doubt love

because I will love Forever.

Figure 1: An example of special words from one of our COURAGE questions of hope.

Figure 2. Raphael with Christelle (music therapist): ‘The simple pleasures of every day. Lasting memories. Music is my passion.’


My name is Laurence

Laurence adapted a poem written by her mother, and music therapist, Christelle Jacquet, helped her with the music. Laurence sang it and played the guitar, and made a beautiful slide story to go along with it. Her mother has given me permission to use her work in teaching about ‘Leaving a legacy’. I have translated this lovely and moving song from French. Laurence had cancer three times, and could not survive the third.

Laurence’s song

It is many years since I have known, that science has failed and the cancer has grown. There are some of you, who have come to see,

what will happen, what will be?

Refrain: Oh the suffering, when I think, and you know, at what price,

and how important it is, THAT I AM ALIVE!

And I imagine that there might be a day, when I can live the same way as I lived before,

for every moment I live, I say to myself, I have a chance. Oh yes, but how?

[Refrain] For every moment I live, I would live another.

My name is Laurence. I am determined. My strength, my energy, the serenity – diminished.

I think every morning I wake, how important it is to remember,

for every moment I live, this is not the end.

[Refrain] I take my path. I get up each morning,

I continue to live without thinking, without forewarning. I continue to live my life the most beautiful possible.

My next years will be or not. Whatever!

[Refrain] Nothing will stop me. I am Laurence.

I am determined to live my life in the best way possible. In the years to come,

JUST WATCH ME DANCE. I LOVE YOU ALL.

Charles-Eric’s f ilm

Charles-Eric was told that his chemotherapy treatment didn’t work. He agreed to film his story with his mother so others could hear his special knowledges. Charles-Eric had challenges all his life with multiple operations and did not speak often of his experiences. I felt privileged that he agreed to make this film. I had organised with him what questions would be asked. Charles-Eric said, ‘I am happy that I did all I could to live as long as possible. I can now have a better life for the moment, at home with my brother and sisters, instead of sick in a hospital bed. My mom is taking this harder than I am. I have always been sick; this is no different. I know it means I will die soon, but I will live better for now.’

Parents’ knowledges: ‘Letting the legacy live’

‘Our pain is forever present, but so are our children.’ – Anthy Tsatoumas2

I wish to credit Pierluc and his mother for co-creating with me the idea of ‘Letting the legacy live’. I met Pierluc five months before he died. He loved dolphins. Pierluc was seven years old and his mother felt unsure about discussing death with him. However, she found a dolphin book about death and dying which she read to Pierluc during his last night of life, and she felt he was at peace. However, she was not at peace. I had worked with Pierluc for some time and, a while after his death, I dreamt of him. He told me to call his mother. The next morning, I called his mother and yes, she was having a very hard time. She was an extremely social person who had been one of the parents who asked for the COURAGE oncology program parent groups. She lost her community of support when Pierluc died. I decided to form a bereavement support group and the project of ‘Letting the legacy live’ was developed.

Questions to say hello again

Michael White used the metaphor of life as a ‘club’ which has members (White, 2005). When someone dies, the membership is not cancelled, and re-membering conversations can keep membership alive and helps us re-story grief (Myerhoff, 1982; White, 1989, 1997). Through her writings and in personal conversations, Lorraine Hedtke has helped me use re-membering conversations in bereavement counselling (see Hedtke 2000, 2012 2014). In some written narrative letters I send to parents after a child has died, I add questions adapted


from Lorraine Hedtke’s work. These questions are included so parents might be able to say ‘Hullo’ again (White, 1989). The following questions use ‘her’ as the pronoun, but this is changed if the child is male.

Contribution and appreciation

• What things about knowing her make you realise what is important to you?

• What contributions did she make to your life?

• What have you appreciated in your relationship with her?

• What did she say that was important to you?

• What did she teach you?

Identity

• If you could feel her presence now, how would it show itself?

• What possibilities would feeling her presence bring to your life?

• What might you say to her?

• What memory is most significant?

Re-membering

• If she could hear your responses to these questions now, what would she say to you?

Conventional western practices some parents found unhelpful

Certain assumptions of grief psychology have been questioned recently. These include disengaging from relationship with the person who has died; accepting the ‘reality’ of death and death as a finality of your relationship; promoting deathbed conversations to say goodbye; completing ‘unfinished business’ and planning to ‘move on’ (such as in Kubler-Ross, 1969). I have had parents tell me that they found such ideas unhelpful and, in some cases, harmful. Narrative approaches encourage re-engagement, keeping the loved one close, keeping stories alive, bringing the best of the past into the future, (Raphael’s song) and inviting other stories besides grief and a tragic version of death (White, 1989).

Research about what parents want in bereavement care

Stevenson (2014) wrote in her doctoral thesis that parents of children with life-limiting and life-threatening illnesses often want support from the paediatric hospital, both during their child’s illness and following the child’s death (see also Contro, Larson, Scofield, Sourkes & Cohen, 2002; D’Agostino, Berlin-Romalis, Jovcevska & Barrera, 2008; Decinque, Monterosso, Dadd, Sidhu, Macpherson & Aoun, 2006). The importance of providing quality paediatric palliative care (PPC) has also been emphasised in a Canadian study that surveyed practitioners’ views on research priorities (Steele, Bosma, Johnston, Cadell, Davies, Siden & Straatman, 2008). These reports and others highlight that care for children with life-threatening and life-limiting illnesses must take into account and respect their physical and psychological situations as well as the psychological wellbeing of their families (Field & Behrman, 2003; Nelson, Botkin, Kodish, Levetown, Truman & Wilfond, 2000). Bereavement care is not only considered an important component of PPC, but it is also considered a crucial component of a continuum of care for parents of all children who die, no matter what the cause of death (Groupe de travail sur les norms en matière de soins palliatifs pédiatriques, 2006).

The Little steps project

Pierluc and his mother helped me to think of collective ways of practice. Prior to this, my bereavement work had not been using ideas of community. This was in part because other parents had told me of grief support groups that they felt were harmful. I did not want to replicate this harm. I invited Pierluc’s mother and several other parents to participate in a project that aimed at determining knowledges and understandings after the death of a child and letting the legacy of their children live. This project has turned into a book named Little steps (Petits pas)2.

I initiated the Little steps project and put it into action with the help of Marie-Claude Proulx, a nurse specialist in the palliative care team. I wanted to unite parents living the death of a child with the aim of sharing their experiences and creating tools to help other parents. The Little steps project follows the narrative practice of searching for double stories, which in this case acknowledges not only the struggles faced after a death of a child, but also the skills, abilities, and special knowledges that can be discovered (White, 2007, pp. 219–261). My hope with the Little steps project was that identity knowledges could become social and public.


In the prologue in Little steps, I wrote: ‘Identity can get confusing when there is a loss of a child. Am I still a mother when my only child has died? Am I still a parent of two children when only one of my children still lives? Identity is built through stories. We contain multiple identity stories. Many people contribute to one’s identity. Through re-membering, we can incorporate stories of a child who has died into our identity.’ To help with this identity project created through the Little Steps book, we planned a telling of the parents’ stories in written and artistic form. These stories of survival show how parents are in the process of managing their lives after the death of a child. Re-telling stories of survival can ‘thicken’ the stories, making a

re-grading of earlier conclusions about identity of life which can be weakened by the loss of a child.

Each chapter of Little steps contains different elements: text, scrapbooking, drawings, lists, thoughts, poems, witnessing, and so on. We wanted the project to be flexible and thus permit parents to express themselves and share with other parents in any manner they wished. I include a picture of the introduction to demonstrate their work (see Figure 3). Individual stories are in French for the Francophones and English for the Anglophones.

Figure 3: Introduction to Little steps.


Below are the English explanations of each chapter by Anthy Tsatoumas2.

Chapter 1. Portraits

This chapter allows you to get to know us, the parents, and our children. You will read about our journeys and learn about our struggles. We share our stories with you.

Chapter 2. The how-tos

Hope is what helped us to find our way through the stormy times of our grief. Our grief surrounded us with many struggles before and after the death of our child. We hoped for less pain and more happiness to come our way. We did not know how to find that happiness. Here we tell you how we found our way out of the storm and began to live again, albeit in a different light.

Chapter 3. Pastimes

The grief a parent faces when a child is sick or when a child dies is all-consuming. It disables you and everyday life becomes difficult and overwhelming. An escape from the emotions, anxieties, and pain faced each day was a necessity. The ways we chose to escape from our daily turmoil are shared in this chapter. These moments of escape were priceless for our wellbeing. Some of these activities still play a prominent part in our lives.

Chapter 4. Creations

Creativity seemed to be an activity many of us chose as a means of escape. Many creative avenues were chosen. Scrapbooking, card making, crafting, drawing, writing, reading, music, and poetry are a few examples. Why did so many of us reach out to our artistic side? I once read that ‘art requires the ability to surrender to the unanticipated possibilities of the work as it unfolds’. Our hope for a brighter tomorrow provided us with the ability and willingness to surrender to our ‘art’. In doing so, creativity provided us with a great peace and a means to release our pain. It was a therapeutic escape.

Chapter 5. Words and writings

Understanding a parent’s grief is very difficult if you have not travelled the same road. However, acknowledgement of the grief a parent is enduring is priceless. Kind words, simple acts, listening, and a hug are all simple gestures that provide enormous comfort to a grieving parent. Comfort can also be found in books, poems, support groups, or music. This chapter lets you know some of these that brought us comfort.

Chapter 6. Family and those around us

The illness and death of a child does not only affect the parents. They say ‘it takes a village to raise a child’. That same village

is there when a child is ill and the parents are left with empty arms. The people in this village help us to live day to day, they support and comfort us, and they grieve with us. Brothers, sisters, parents, aunts and uncles, friends and colleagues also suffer the loss of this child. How they helped us and how they grieved for the loss of our child is found here.

Chapter 7. What we did not find helpful

The death of a child is difficult. No-one wants to think of such tragedy. Many people are not comfortable talking to a grieving parent and often speak and act inappropriately. Their words and actions are hurtful, although with good intentions, and do not help us. This chapter shares some of the words and actions that have not been helpful to us.

Chapter 8. Rituals, symbols and souvenirs

‘Our pain is forever present, but so are our children.’

I invite you to think about what it might mean to children and families who have suffered this trauma to know that their legacies are shared with you. What would it mean to them to acknowledge that they can leave a legacy rather than a loss? What would it mean to the parents and siblings to know that they are ‘Letting the legacies live’? What new ideas for legacy do you have?

External research to support the use of narrative practices in child palliative care

Many of Stevenson’s (2014) research findings support the idea of using narrative practices in bereavement counselling. Her study included 5 of 21 families who had participated in narrative practices with me. Stevenson stated that ‘it was clear that the death of their child changed their lives in fundamental ways, to the degree that the parents narrated their lives as occurring before and after the turning point of their child’s death’ and they ‘reorganised self-identity’ (2014, p. 129). However, she also stated that parents regulated their intense feelings of grief by finding ‘meaning through making sense of the loss, finding benefits or positive aspects from the experience’ (p. 129).

Meaning-making is a concept currently explored in the bereavement literature, a term for describing processes that contribute to adaptation to bereavement (Park, 2010), also used in narrative therapy. In Stevenson’s (2014) analysis, aspects related to meaning emerged in parents’ descriptions of how they coped. Her findings support other studies of bereaved parents (Alam, Barrera, D’Agostino, Nicholas & Schneiderman, 2012; Barrera, D’Agostino, Schneiderman, Tallett, Spencer & Jovcevska, 2007; Wheeler, 2001). According to Stevenson, a key aspect of the parents’ individual experience of grief related


to ‘maintaining a bond with their child who was no longer physically present in the world … They often spoke about their continuing connection to their deceased child and their attempt to maintain the child’s memory’, and ‘Parents also mentioned how it was important to continue the memory of their child, that their child not be forgotten’ (p. 130). Bereavement follow-up and support services were considered helpful because they ‘assisted parents with these various aspects of coping, such as helping parents maintain a connection to their deceased child’ (p. 139).

‘One finding was that parents often reported helping others as a way of coping’ (Stevenson, 2014, p. 130). My practice of ‘Letting the legacy live’ used ideas of parents helping others, and encouraging community. Quoted in Stevenson’s research is one parent’s comment: ‘We made a special booklet … that really helped me a lot to live with the grief … that I had … it was an extraordinary therapy’ (p. 131). This research encourages me to think that narrative practices could be particularly useful with families who have had a child die.

Appraising the ethics of this practice

There is a need for delicacy in this work. Sometimes parents do not want the child to know the medical prognosis. The concepts of ‘open awareness’ and ‘mutual pretense’ were discussed previously (Bluebond-Langner, 1978). When the parents and child are able to discuss the likelihood of death, then I openly discuss this with them. There is then more possibility to plan the legacy they want to leave. For example, Angy and I could co-contribute to a written narrative for her family. When a family does not want to discuss death openly, it is possible for the legacy to not be stated clearly as such, but it is still possible to create a project to show others’ knowledges about who the family are and their values, beliefs, and special knowledges.

I also try to help people understand the children’s high awareness and ability to understand prognosis (Bluebond-Langner, 1978). However, there are sometimes concerns about talking openly of death to children generally; there are also concerns about talking openly of death specifically to children who are dying; and there are particular concerns about talking openly about death to children who are dying who do not know their prognosis. I respond to these triple concerns by explaining to families about the ethics of narrative practice, which is to follow the lead of the child and/or families. In this context, this project has involved many different strands and activities, such as Tree of Life workshops and Journey groups, so that families could choose which ones they wanted to be involved in, and how explicitly they wanted to discuss topics of death within these.

As narrative therapists, we engage in practices of accountability and transparency: the openness of our work to parents and children, and the constant questioning of this work, is more likely to provide them with what they want to receive. My experience with narrative practitioners is that we lead with questions, and we ask often if the questions are the ones the people consulting us want to respond to. We watch for discomfort, and pull back when the person consulting us seems uncomfortable. I have learned from children and parents that they appreciate when I follow their lead. The child can go back and forth from ‘open awareness’ to ‘mutual pretense’ over the time of our work together, as can family members. The practices of accountability I put in place in relation to this dilemma involve continually asking, ‘Am I asking the questions that you want me to ask?’

Conclusion

In summary, with the children, I used narrative and community practices to create songs, poems, films, art, letters and music which recorded values, beliefs, and knowledges, often as archives to be sent to friends and relatives. I named this Leaving a legacy. I did this using narrative therapy practiced with families, such as Tree of Life workshops and Journey workshops; questions of hope with wisdoms to be shared with our virtual group; and individual narrative therapy projects. I used re-membering conversations to help the parents keep the child close to their hearts. Collective community work included archiving stories in a living document called Little steps, and developing community by pairing parents who had insider-knowledges with newly-bereaved parents and sharing with them letters of stories and support. I named this Letting the legacy live.

I have shared pictures, stories, documents and names within this paper under the full permission of the families and individuals involved. The families and I have worked out how to share these ideas of resources and special knowledges. This work could not have been done without a community. I wish to honour all the many families and wonderful children I have worked with who have been able to share their very difficult stories of loss, pain, and fears, while also finding their own hopes and dreams, values and beliefs, and the special knowledges which they held precious. I want also to thank the wonderful oncology and palliative care team members who assisted in this work. I wish, in particular, to credit Angy for the co-creation of the Leaving a legacy idea. When I visited Angy after she was told the treatments weren’t working for her cancer, she said, ‘I don’t want to talk about dying’. I responded, ‘Well then, would you like to talk about living and how you plan to live the rest of your life?’ She, thus, gave me the idea of Leaving a legacy.


Notes1 Recently, I carefully considered polanco’s (2011, 2013) ideas

in terms of considering ‘foreignising’ narrative therapy for the Francophones (French first language speakers) even if they are European/American. polanco & Epston (2009) proposed that studies of translation and bilingualism offer interesting contributions to the development of narrative therapy. They state that, as

narrative ideas migrate cultures, these crossings can enrich and diversify narrative practices. I considered this view in the past and their statement certainly has correlated with my experiences (Moxley-Haegert, 2009).

2 To view this Little Steps publication see: www.hopitalpourenfants.com/patients-et-familles/information-pour-les-parents/petits-pas (French) and www.thechildren.com/patients-families/information-parents/little-steps (English)

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