Oncology Conference

20 February 2009

1.  Migration of identity journey

For many the introduction to the idea that Cancer has been diagnosed in their bodies means a separation from life as they had known it before into a life in a very foreign and for most, hostile territory. Michael White, one of the two “fathers” of narrative therapy used the metaphor of social anthropologist, Victor Turner, to think about what he (White) referred to as a “migration of Identity” when a person separates from a known and familiar place in their thinking about themselves and their own lives to a very different and as yet unknown place. He identified the stage of separation to a state of renewed integration as the liminal space – the space “betwixt and between”. This liminal space marks a stage of knowing life will never be the same again and trying to figure out what it will be like in the future. This is a very uncomfortable stage, a gray time where things do not make sense, the person wants to move forward, but all they can do is moving backwards because everything is measured against what they used to believe life would be like according to the story they were living in their life before the diagnoses. When they allow themselves glimpses of that other life – the one with cancer as part of the landscape or even with cancer dominating the landscape – despair and fear might threaten to over-whelm them.

What I would like to reflect on with you today is: How do we have conversations with people that will assist them in negotiating this migration of identity from a person who was healthy to a person living with cancer?

2.  Story and meaning

Why a Narrative Therapy? Narrative therapist is based on the premise that story has a meaning-making function. When something happens to us that we can’t quite figure out, something that took us by surprise or clashes with the ideas that we had about our lives – we work hard at making sense of this event. We engage in story-telling, we talk to people in an effort to makes some sense of it. Looking at literary theory Michael White noticed that stories develop in two landscapes. The landscape of action refers to events that happen in a sequence, over time according to a theme or plot. The other landscape of a story is the landscape of identity which refers to the meaning-making process involved in the story.

For example a person might tell the following story: “This happened in May last year. I was feeling perfectly fine, but went along to see a doctor for a check-up for insurance purposes. Right there the doctor started asking all sorts of questions saying that she needs to run some more tests. I am such a fit guy you know, I work-out and have good eating habits, never smoked and don’t drink excessively. I was not suspecting anything; I thought this was just routine. The next thing I see her walk out and staying away a long time. Now I am getting a bit worried. When the doctor came back she told me that I had to come back for scans the next day. I had to fly to JHB that evening for 4 days so I told her that I would only be able to come in for the scans the following week. She looked very serious and said that she cannot postpone these scans for a week. I would have to cancel my trip. She would give me a letter for my employer. By now I could feel my heart beating and the sweat coming out all over my body. I am really starting to feel seriously ill! What the hell is happening here? What is wrong with me? Thinking back on that day I can feel myself get heated up again. Why did that doctor treat me like an idiot? Why keep me in suspense like that? She could have told me what they found, but no, I had to sit with the terrible worry for 24 hours without any information….”

In this example you can see how the landscape of action and landscape of identity are inter-woven. Events are described around a theme – my health/the day of my medical examination – we are given the sequence of the events in time and also some of the meaning making. I am a healthy guy, then what is wrong here? This doesn’t sound good. Then looking back – I was unfairly treated, I was treated like an idiot, this was not right….

The meaning that people make or the conclusions that they come to about the events in their lives determines the actions that they take. If a person believes that they had been treated unfairly, they might treat the doctor with suspicion or even aggression the next time. They might also suspect that doctors are not telling them the truth or the whole story when next they encounter a doctor, etc.

So, if we accept that people tell stories to make meaning of the events of their lives, how do we honor and support this meaning-making in the conversations with the people that we engage with in the context of illness and medical care?

3.  Giving and receiving bad/difficult news

“Cancer” is a word filled with meaning within our culture, but we can never know exactly what kind of images this word evokes for different people. Their understanding and meaning-making will depend a lot on their previous experience of cancer within their own personal lives, the lives of others close to them and their exposure to stories told within the society in which they find themselves. If we can join the person who has been recently diagnosed with cancer in a way that will assist them in making sense of their experience it could be very helpful to them.

Mostly people who enter into living with serious physical illness need information that might help them make sense of their experience. They need information about the extent, the location, and the nature of the illness. They would need to know about the possible treatment regime involved, the possible effects of the treatment, the outcome of the treatment, the practical steps involved in the treatment regime and how that might affect their lives in terms of their families, their work and other areas of their lives.

If we flood them with information at a time when they are in shock it would be very, very difficult to hear the information. If the illness is completely unknown to them it might feel like they are addressed in a foreign language and have to make sense of directions on a map that they just cannot figure out even where north is let alone what the road looks like. Like with map reading it is always a good idea in these conversations that take people into unknown territory to find out where you are on the map. We do this by asking questions:

• What are your thoughts on this?
• Do you have any ideas about the things that I am trying to explain to you?
• What kind of sense do you make of this?
• Do you have any questions?
• Do you want me to stop so we can re-cap a bit?
• Do you want to fill me in on where you stand on what I have been saying?

Matching the information with where the person is in the listening and processing of the information assists greatly in their process of hearing and integrating what they are hearing. People select and filter what makes sense to them and what fits with their previous knowledge and understanding when they listen. They are not empty vessels that can be filled up with knowledge. Communication does not only rely on how well things are being explained – it also relies heavily on how what is explained is matched with what the person is able to fit the information with in terms of their previous knowledge and in terms of what they have expected to hear. This takes time, it also means that we have to repeat it many times to check understanding and give time for integration. With serious illness it is helpful when information is given in the presence of a supportive partner, friend or family member who can assist in this hearing and understanding process as the person goes home to process and make sense of it.

The kind of conversations that I will discuss now are the ones that we engage in when we continue to support people in their meaning-making of living with the illness that had been diagnosed. Meaning changes over time as new things happen and as new understandings develop – it is a dynamic process and the “betwixt and between” phase might re-appear as a new migration is undertaken. Eg from living with a treatable condition to an untreatable condition, from being able to work full-time to having to work part-time or stop working, from being independent and self-sufficient in everyday living to being in need of care, from believing that physical appearance is of central importance to a place where being alive is of central importance etc etc.

4.  Externalizing conversations

Externalizing conversations refer to a way of speaking about problems and ideas that situates those problems and ideas as separate from the person and their identity. Externalization requires a shift in the use of language, but also a shift in how we view people and the problems or dilemmas that they are struggling with. People often speak about problems or dilemmas as if it is part of them.

Example:

“I have cancer.”

When was the cancer diagnosed? Where in your body has the cancer been diagnosed? Which areas of your life have been affected since the cancer became part of your life? What is the cancer trying to rob you of?

I am worried. What is the worry trying to convince you of? When is the worry most prevalent? Does the worry sometimes fade away into the background? What would I see you doing at such times? Who will be enjoying the worry-free times with you?

I am angry. When did this anger first show itself in your life? What does the anger do to your relationships with other people? Do you think the anger is trying to assist you in your life or do you experience it to be robbing you of some of the things that you value in life?

I am so afraid. What does the fear try and convince you of? When did you first notice the fear? What times of the day is it more present in your life? Is the fear more about yourself or about your family or something else?

I have lost hope. What was the hope that you have lost? What did it mean to you to have that hope in your life? Do you have glimpses of the hope sometimes? At what times are these glimpses showing itself?

What are the benefits of using externalizing language?

• We are able to see the problem more clearly, examine it from different angles, be curious about its operations and effects in our lives. We can deconstruct the problem and its influences.
• People feel less blamed, judged and pathologized when problems are not speaking of their identity and worth as people.
• It is not totalizing – there are more to us than these problems/struggles.
• Putting the problem out there enables us to see our strength and those parts of us that work for us. Our own knowledges, skills, preferences and achievements in life can celebrated and acknowledged. In this way we have more agency in our own lives.
• We do not have to take up a position against ourselves when we take a stand against the influence of a problem.
• It opens up space so that others (like the therapist) can join us in our struggle with the problem.

5. Dominant and subordinate story-lines

Often the people living with serious illness like cancer speak about their lives as being dominated by uncertainty and a loss of control over their lives and life-decisions. Where previously they were able to plan their careers, their holidays and other activities they now live a life that is dominated by medical treatment and tests, waiting for results and these events and its outcomes determine what choices they have in life. As we listen to the dominant story – the story of loss of control, which is told as events linked in a sequence over time according to this plot of loss of control – we also listen for the subordinate story.

That is the story that has been lost because of the focus on the dominant story. Anything that the person speaks about that stands outside of the dominant plot or theme – loss of control – the person might say that they were hoping to visit their grandchildren in East London. This plan/dream/desire does sound like the cancer-treatment has not stolen their dreams, that they still have control over their dreams. I would ask about that. I might ask about what this wanting to visit the grandchildren stands for in their lives? Does it mean that they value their connection with their children and grandchildren? What is the history of their relationships as a family? When do they feel this connection the strongest? In terms of staying connected – what else do they do to keep connections alive? In terms of planning a visit – would they be able to come up with a Plan A, Plan B, Plan C etc might be ways of planning in the face of uncertainty. The subordinate stories are the stories that stand outside of the dominant problem-story and by talking about it and thickening it other possibilities become available to the person.

Another theme that is often associated with serious illness is the one of loss – loss of energy, loss of independence, loss of faith, loss of hope, loss of choice/control etc. These can lead to conversations about what would more energy make possible – and questions about what that would mean and then about what they might have energy for that would move them in the direction that they hope to move. Example – a grandmother said that she missed being able to play with the grandchildren, we spoke about what they loved playing, whey the playing was important, what it represented for her and for her grandchildren and then we started wondering what she had the energy for that might also bring joy into her relationship with the children – card games, having one read to her, teaching them songs from her childhood, making a book of memories together etc, etc.

Agency is an idea that features strongly in narrative therapy. Definition of agency – to exert influence in your own life – we always seek to expand on or strengthen people’s sense of agency, to assist people in becoming stronger agents in their own lives.

6.  Re-membering conversations

The idea of re-membering is based on a metaphor which describes our lives as a social club to which people have membership. We are in charge of the membership and type of membership of membership to our clubs of life – we may evoke membership, re-grade membership up and down, remind ourselves of the membership by telling someone about the contributions of various members of our club of life. Membership can be given to people alive or deceased, to animals, pets, hero’s or people that we admire even though we have never met them.

We might also want to re-member ourselves or parts of ourselves that we have forgotten e.g. the self as young parent, as successful athlete, as passionate participant in an organization etc. This will assist us to know that our lives are more than just this time of illness… That which we were long ago is also part of our identities…

Who stands with you? Who would acknowledge this in you?

The re-membering questions stands against isolation, but also thickens the person’s sense of identity. I am more than a sick body. I am a beloved wife, a favorite aunt, person who achieved in my career, a loyal friend etc.

7.  Relationships of optimism, respect and collaboration

We are optimistic about way in which people can enter into difficult life circumstances, optimistic about the meaning that they can find and make, respectful of their knowledges, skills, hopes and dreams and how these inform their lives. We are willing to join them, stand next to them and work with them, at their pace, with their understandings, their struggles and their limitations. We allow our own lives to be touched by theirs, we acknowledge their contributions to our lives, we are always willing to be surprised and always on the look-out for hopeful possibilities.

1. Ending
2. Read the letter to Elizabeth after the visit to Paarl.