Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

[Citation: Busch, CJ. On creating a healing story: One chaplain's reflections on bereavement, loss and grief. Innovations in End-of-Life Care, 2001;3(3), www.edc.org/lastacts]

On Creating a Healing Story:

One Chaplain's Reflections on Bereavement, Loss and Grief ¹

Christian Juul Busch

When you tell a story, you mend things that are broken
— Karen Blixen (Isak Dinesen)

Danish novelist Karen Blixen is describing a key existential and spiritual truth that lies at the heart of the practice of palliative care. Story—language provides a means of healing something or of creating something new. I will paraphrase Gregory Bateson whom I credit with formulating the following idea that has informed my work: Until you have said what you are thinking, you cannot think about what you have said!²

This essay derives in part from experience as a hospital chaplain at Rigshospitalet in Copenhagen, Denmark where I have worked for 15 years with patients who are gravely ill and with bereaved family members. I would like to reflect on how we can support people in saying the things they are thinking and, subsequently, how we can help and challenge them into thinking about what they have said.

First, I will review certain theoretical concepts that inform the ongoing discussion about loss, grief and bereavement and our attitudes towards patients and relatives in palliative care. In this review I am very much inspired by the work of the British sociologist Tony Walter. Next I will proceed to look at some of the ways patients and relatives often speak about loss toward the end of life, and grief after the loss of a loved one. My intention here is to demonstrate how an existential attitude toward loss can enable us to help people express their thoughts – i.e., say what they are thinking. Finally I will provide an example from my own practice, working with a group of bereaved family members of deceased children, of how to guide and support patients and relatives in creating a story frame. Given a starting point grounded in an existential understanding of loss, I will illustrate how telling a particular story helped one mother to reflect on the meaning of her child's life and her own grief – i.e., to construct a healing story.

Ongoing Discussion of Loss, Grief and Bereavement

One of the most influential theories in loss, grief and bereavement over the past decade is that of William Worden, which identifies four tasks that the bereaved must accomplish:³

1. Accept the reality of the loss
2. Experience the pain of the grief
3. Adjust to an environment without the deceased
4. Relocate the deceased and move on with your life

Worden's theory emphasizes breaking the emotional bonds with the dead person and letting go of the deceased as the necessary route to adjustment.⁴ The translation of this theory into practice has focused largely on helping the bereaved open up to and articulate their emotions.

Practitioners working in the field of bereavement have taken it for granted that the task of working through and experiencing the pain of loss is necessary if the bereaved person is to let go and move on. But is this right? Do all bereaved people let go and move on?

I find this model is too narrow to accommodate the wide range of human experience as I've observed it. Others have also critiqued this theoretical framework for understanding grief and bereavement. Margaret Stroebe notes that there is very little scientific evidence on the grief work hypothesis, and that the studies that bear on this issue yield contradictory results.⁵

The British sociologist Tony Walter expands this critique as he describes a shift from a modernist era, in which counselors expertly manage a predictable grief process, to a more postmodern individualizing of loss and grief and a rejection of grand theory.⁶ The current discussion among researchers indicates that clinical praxis needs a more nuanced framework than earlier.

Research increasingly indicates that a person's path through grief owes more to personality and habitual strategies for coping with stress than with any universal "grief process."⁷ My experience working with the bereaved confirms this close connection between a person's outlook and personality and the way that the person expresses grief. For some people, the proper or appropriate expression of their grief is expressing endless grief. For others, repression of feelings is what feels most appropriate. The important message here is that each person's way of expressing grief is possibly the best way for that person to express his or her grief.

To my mind, no one fundamental theory pertains to the experience of all bereaved persons. Rather, it is a question of drawing out different grief patterns.⁸ This can be accomplished in a number of ways. Wortmann and Silver discerned three fundamental patterns based on their review of the literature. All three are equally valid approaches:

1. Moving over time from high to low distress.
2. Never showing intense distress
3. Staying in high distress for years.⁹

Although we as professional caregivers generally assume that it is better to release emotions (moving over time from high to low distress or staying in high distress for years) than to repress painful experiences (never showing intense distress), there is little evidence to confirm this conclusion. Walter notes that it can be fruitful to repress painful experiences.¹⁰ Wortman and Silver point to the fact that the bereaved who do not feel struck by a crisis and consequently do not release their emotions, seem to be doing no worse in the long run.

This discussion of patterns of grief leads to the related and pertinent discussion of whether bereaved people should "let go" or "keep hold" of the deceased. The current debate focuses on the possibility of a middle course, an oscillation between "letting go" and "keeping hold." "Oscillation" or "the swing of the pendulum" are very important concepts in describing the tendency in bereavement research.

Shapiro notes that children generally oscillate between forgetting and remembering:

For children, the unremitting pace of adult grief is too intense, too much an interference with the necessary work of growing up. Children are more likely to put their grief down and pick it up again.¹¹

In a recently published book on children's grief, Stine, a 14-year-old Danish girl, who lost her mother and her best friend to cancer, expresses this rapid oscillation in and out of grief. Stine wrote:

I began to think that I was bad luck. Everybody around me was going to die... At [one] time I considered taking my own life because the pain was too great, but I soon changed my mind. The following weekend there was a (horse) rally, and I didn't want to miss that.¹²

Her grief is intense, and so is her ability to forget. She swings like a pendulum between remembering and forgetting. It is not a question of one or the other. The bereaved have to move back and forth between emotionally founded grief work and a task-focused learning of new roles and skills. These two important tasks cannot take place at the same time. I have noticed a growing awareness of the need to find a language that accommodates this kind of individualization of the experience of grief. This attention to language and the pattern of oscillating between holding onto and letting go of grief is also important in my work with patients who are gravely ill or dying.

How do we transfer this principle of oscillation and the swing of the pendulum to the way patients speak of their losses? Listening to patients, I have found many converging points.

How do we express, from an existential point of view, what a person loses when he or she becomes incurably ill? The Danish philosopher and bishop Kjeld Holm has described such a loss in the following way:

The understanding of who you are, and consequently, the fundamental principles of your life, are destroyed or cannot be maintained.¹³

The purpose of the existential/spiritual conversation is to generate, via this conversation, a renewed understanding of the dying person's changing meanings of life.

Let me ask you: Have you ever heard a patient say, "The way I understand myself has been destroyed"? I have not head that sentence, not even when I have had conversations with ministers or philosophers, who were incurably ill. Then how do people speak of their understanding of themselves?

Here are some examples from patients and relatives I have worked with:

I have always been well, I have never been ill before.

Always and never can be used in many different situations but in conversations with seriously ill people always and never frequently signal a key point in a person's fundamental understanding of life and of the self. As such, it is worth listening for them, as they may presage an utterance that illustrates how that person understands herself. That moment can then also become a moment for a potential question about that understanding. Let me illustrate with the following example:

A 19-year-old professional athlete, one month before his death from leukemia, said:

I have always said: 'As long as you go out there and fight, you will win!'

If I ask him: "And how is it right now with that saying of yours?" I invite him to reflect on his actual situation, and he may start talking about his feeling of powerlessness and anxiety. "I have always said: As long as you go out there and fight, you will win!" describes his normal feelings of being in control. The question invites him to think about what he has said.

Realizing that life generally moves and exists within two opposing poles can inspire hope – the hope of not being trapped in either false control or in powerlessness. The young athlete did swing like a pendulum between control and powerlessness. A life focused solely on positive aspects is equally as amputated as a life that only sees negative ones. A lived life is in constant motion between joy and sorrow, hope and hopelessness, control and powerlessness, gratitude and bitterness, humour and gravity. These swings of the pendulum are manifestations of movement and life.¹⁴

In almost every conversation with patients and relatives you will find examples of the way patients swing between onerous, heavy thoughts and lightness, between resignation and hope, or between despair and gratitude. The Swedish oncologist and psychiatrist Loma Feigenberg listed the following opposing categories or dimensions that patients move between like a pendulum:¹⁵

One moment the patient concentrates on the changes happening inside him and is preparing for his death; in the next moment he concentrates on the feeling that something happens to him. Noticing these swings and seeing them as part of the process can perhaps help patients. We acknowledge and confirm the patients' conflicting experience. We can note that we did see how the patient made the movement from resignation to hope or from despair to gratitude.

Tony Walter argues in an article entitled "A new model of grief" that bereavement is a part of a never-ending and reflexive conversation with self and others through which the late-modern person makes sense of their existence. In other words, bereavement is part of the process of (auto) biography. The biographical imperative – the need to make sense of self and others in a continuing narrative – is the motor that drives bereavement behaviour.¹⁶

The language of spirituality and of existential aspects of palliative care is very much based on narratives, on metaphors and stories. When Aristotle talks about "The Gift of the Metaphor" he is speaking about how metaphor can open a passage to a sudden recognition and understanding of a previously hidden truth.

Meaning exists, not as something given, but as something that comes into existence when you take the things that happen in your life seriously. Active reflection on one's experience creates meanings. Meanings can be ambiguous and should, in some instances, be approached ambiguously.

How can we help patients and relatives to tell a story with which they can mend things that are broken? What can we, as professionals, do to help them to say what they think, so that they can think about what they have said? I will now describe a process that offers one way of helping patients tell/find healing stories. This process can lead to the creation of an individual story about loss, grief and bereavement.

I was working with a group of parents who had all lost a child to cancer. These parents all felt that this loss, death following a painful disease, was senseless and unjust. During one of our sessions I told the following story, "The Roads of Life" from Out of Africa by Karen Blixen to the group:

The Roads of Life

When I was a child I was shown a picture - a kind of moving picture as it was created before your eyes and while the artist was telling the story of it. This story was told, every time, in the same words.

In a little round house with a round window and a little triangular garden in front there lived a man.

Not far from the house there was a pond with a lot of fish in it.

One night the man was woken up by a terrible noise, and set out in the dark to find the cause of it. He took the road to the pond.

Here the storyteller began to draw, as upon a map of the movements of an army, a plan of the roads taken by the man.

He first ran to the South. Here he stumbled over a big stone in the middle of the road and a little farther he fell into a ditch, got up, fell into a ditch, got up, fell into a third ditch, and got out of that.

Then he saw that he had been mistaken, and ran back to the North. But here again the noise seemed to him to come from the South, and he again ran back there. He first stumbled over a big stone in the middle of the road and a little farther he fell into a ditch, got up, fell into another ditch, got up, fell into a third ditch, and got out of that.

He now distinctly heard that the noise came from the end of the pond. He rushed to the place, and saw a big leakage had been made in the dam, and the water was running out with all the fishes in it. He set to work and stopped the hole, and only when this had been done did he go back to bed.

When now the next morning the man looked out of his little round window, - thus the tale was finished, as dramatically as possible, - what did he see? - A stork!¹⁷

[It is critical to 'see' the emerging picture for this story to make sense, and EDC is pursuing copyright permission to use the images. For now, please click on the hotlink to a private website, which displays both the story and images. Click on your "Back" button to return to this essay].
http://www.whiterabbit.net/@port03/Dinesen/Stork/roads_of_life.htm

Karen Blixen, reflecting on the meaning of this story, then wrote:

I am glad that I have been told this story and I will remember it in the hour of need. The man in the story was cruelly deceived, and had obstacles put in his way. He must have thought: 'What ups and downs! What a run of bad luck!' He must have wondered what was the idea of all his trials, he could not know that it was a stork. But through them all he kept his purpose in view; nothing made him turn around and go home, he finished his course, he kept his faith. That man had his reward. In the morning, he saw the stork. He must have laughed out loud then.

The tight place, the dark pit in which I am now lying, of what bird is it the talon? When the design of my life is completed, shall I, shall other people see a stork?¹⁸

At first glance, this is an absurd story. It seems completely senseless and ironic that a stork should represent the meaning of life! However, the fact that the story is absurd is actually an advantage – because it means that the reader or listener can construct and tell his or her personal story and meaning within that story.

Not long after I told this story during a group support meeting for these bereaved parents, I received the following letter from one of the parents, a mother, who expressed the significance of her son's life in the light of Karen Blixen's story. She wrote:

I do not care much if I never see the stork myself; but I hope that my son saw his stork before he died. I have seen my boy's stork and it is incredibly beautiful. He fought for his life for five years, and while he fought he gave so many people so much love that we will always carry it with us. His life was more intense than it was short, and his soul was stronger than his body was weak. I cannot possibly find meaning in my son's death, but the meaning of his life turned out to be the abundance of love he gave and the love of life he expressed, and this has influenced everybody he knew. And they will always be influenced by this. I think that is a very beautiful stork….

Yes, I would like to thank him for the time we had. And then I would write a little about the world's greatest kid, who I miss and mourn and love. But when I die the void and the mourning will vanish – as opposed to the love that will always be here!

The story about the stork obviously provided this mother with a frame to talk about the meaning of her son's life. It created a language in which she could talk about him in a new way. That is one of the important aspects of existential and spiritual care—to create an "open frame" in order to enable the patient or the bereaved to tell their individual story. I have used this example to demonstrate one way narratives can provide such an open frame.

If one succeeds in defining an open frame, it will be possible to help the bereaved to express how they "let go" and "keep hold" at the same time. Rather than experiencing the memory of the dead as painful and as a burden, bereaved people can experience warmth and pleasure from the "keeping hold" of the memory, in the same way that this mother talked about the love and pain.

Tony Walter confirms that these relationships can continue to be crucial in the lives of the bereaved. He notes that people who have lost a close relative or a friend, retain a rather distinct image of the importance of the dead person in their lives for an extended period. The deceased can play one of the following roles in the life story of the bereaved:

1. The deceased is a role model for the bereaved.
2. The deceased is someone who gives advice in particular situations.
3. The deceased is someone who outlines the basic values in life (this role is in particular granted dead children).
4. The deceased is a treasured part of the biography of the bereaved.¹⁹

One of Karen Blixen's most important mottos was, "Je réponderai" literally meaning, "I will give an answer." In other words, whatever challenges or troubles she met, she would respond to them. I find that this motto fits my own approach to palliative care. Patients and their families have widely different life experiences, hopes and fears. Whenever we meet people, we need to strive to cope with their situation, and never ever give up trying to find a way to help them. And it is patients and families who should define what is helpful, rather than rigid theory that prescribes one right way to grieve the loss of a loved one.

Post a Comment