Sasha McAllum Pilkington on Grace and Storytelling at the End of Life

Sasha McAllum Pilkington: (SP): Kia ora, Lawrence. Thank you very much for having me. Tēna koutou katoa. Hello, everybody. My name is Sasha, and I work as a counselor for Harbour Hospice. We provide specialist palliative care for people in the community and have an inpatient unit. I work mainly as a counselor in the community. I just wanted to say that sometimes when I’m talking about practice, I use stories to illustrate what I mean, and I wanted people reading this to know that I do that with the consent of the people that I’m speaking about and with respect to their confidentiality. So, thank you. 

SM: I think being alongside people who are dying, and their loved ones, is very important. When I speak of being “alongside,” I am referring to supporting a person to reflect on their experience and what matters to them in ways where they experience themselves as worthy of respect and holding knowledge about their own life. I think recognizing our shared humanity is significant in working with people who are seriously ill and approaching death. We are all mortal beings with bodies that can become unwell, and we can all suffer. I am no different in this regard from the people whom I meet in my work and keeping that idea forefront in my mind allows me to see the person beyond the illness and whatever changes that imposes. Change is a shared endeavor and, in my view, takes place in the relational space. So, the stories I have co-created with the people I have met show, I hope, a spirit of collaboration and the importance of the therapeutic relationship in generating change. It can be very hard living with a life-ending illness so I hope the writing acknowledges that while showing what might be possible for both the person who is unwell and the therapist.

You might notice that I use some unusual language constructions as we talk. My use of language reflects some particular understandings that I think are important therapeutically. For example, I speak of “the person who is dying” rather than “the dying person” to acknowledge that people are more than the illness they live with. They are more than the problems they live with. As a narrative therapist, I think identity descriptions are important as they influence how we think of ourselves, what we think might be possible for us, and then how we might respond. The identity of “dying person” can limit how the person sees themselves and then influence how they might respond and act.   

SM: Relationships endure beyond death, don't they? One of the opportunities I get is to talk to people about the kinds of stories that they might like to endure and to meet with families and ask them what kinds of stories they might tell about that person after they have died. This puts me in mind of a family meeting I was part of that took place on a rural property with a farming family. The men were sitting around in their gumboots — big blokes who probably had never spoken to a counselor in their life, let alone been anywhere near one. I was asking the person who was dying how they would like to be remembered, and then the family what stories they'd be telling about their loved one.

At first, the family were shy and hesitant to talk. But as they warmed up, they started to tell some really funny farming stories, which were brilliant. One was about how the man fell out of the tractor and just lay there because he couldn't stand up but had insisted that he go on working. And these men started to laugh as they were sharing these stories from their lives, and then one of them said to me, “Oh, I thought you counselors were meant to make us cry, not laugh.” It was quite delightful. Talking about such stories not only can nurture the relationship with someone after they have died, but they can also make it grow. The written stories we co-create therefore often reflect not just how a person has died but what might endure from the relationship family members have had with them. For example, the published story called “A Small Hope,” which illustrated how a therapeutic conversation brought forward some beautiful memories two young children had of their father, and then how they were developed into legacy stories they could carry with them throughout their lives.   

SM: I think the work really reflects the richness of life and what people have to lose. There are stories of both great sadness and also the savouring of life, and what has been most precious. There is a lot of crying, but there is also a lot of laughter. People walking past my room sometimes wonder what on earth’s going on when they hear all the laughing coming out, and it can change from moment to moment. So, yes, the conversation can reflect what and who has mattered most to a person, the real richness in their life, and ways of living, as well as losses they may be experiencing. 

SM: Yes, writing collaboratively has changed my questioning. I've been writing therapeutic letters and collaborative notes for decades now and writing stories that illustrate practice over the last 10 years. It has changed both my way of questioning and what I’m listening for, as well.

If I'm looking back on conversations, say, in a transcript, it gives me the chance to really look closely at my questions and to think, “How could I have asked them better? What work is that question doing? Has it been helpful?” That constant examination and thinking about questions has really allowed me to be a lot more intentional and be more skillful in my questioning. At the same time, I think my listening has changed. I'm always listening for the beauty in people's lives, the stories, the nested stories within whatever we're talking about. Just the other night, someone was talking to me about accompanying a family member who was dying and said, “You know, the job of the family is to deeply love,” and it just really struck me. I heard that clearly and in a way, perhaps, that I wouldn't have prior to doing all this writing.  

SM: Yes, sometimes. I’m very much listening for expressions of Aristotelian goodness such as love and kindness, compassion, courage, determination, and because I'm listening for it and inquiring into those spaces, it very much comes forth. I was just thinking of your use of love. I mean, it is a form of love, doing this work, I think, isn't it?

SM: I really hope that the stories I’ve published will encourage those who are interested in this work, and support them in gaining some confidence and feeling prepared for what they might encounter. I think, as we were saying previously, there is an idea that the work is all sad, and what I would say is that it can be both sad and uplifting and enormously meaningful. This work does require me to be present for suffering and to be able to enter some of the taboo areas of life. But having said that, when people are approaching death, there are also stories of what's been important and what's been good about living, and they can be incredibly rich. For me, I think there's something also about working with problems that can't be solved, that can't be fixed, and being alongside a person and making sense of what's happening... Conversations that generate helpful meaning making, that are transformative perhaps, or reveal the extraordinary in the taken-for-granted. For me, anyway, that's enormously rewarding. 

SM: Yes, indeed. Meaning making is a significant part of the conversation I have with people. Making sense with people about what is currently happening to them as they live with the illness and also reflecting back on their lives. Having a sense of living meaningfully is very important to most people at the end of their lives. Every person's life is different and people bring different things to their dying. However, while our conversations talk about dying and perhaps what they might be afraid of, or what dying means to them, we also talk about living. We may spend time speaking about how they might like to spend the last phase of their life and what is precious to them, for example. 

SM: When I first started working in palliative care, I noticed that there were many cultural messages about a “right” way to die and a “right” way to live with an illness that were highly influential in shaping people’s experience of the end of their lives. I learnt that dominant cultural discourses could be helpful for some people whereas for others they positioned them as not getting it right in some way.

One cultural idea that springs to mind is the idea that death is a bad thing to be fought. If you have a curable illness or apply this idea to your experience in particular ways it can be very useful. However, for many people living with an incurable illness, the idea of a fight can start to become unhelpful. It might lead to them fighting the illness at any cost, for example, forgoing quality of life in pursuit of more and more treatments to avoid dying. Or it may position them as either winning or losing a battle, which can be a very unhelpful and limited description for someone who is dying.

Part of my role is to create a space for people to reflect on how they are going about living with the illness and approaching death so they can examine whether they are doing it in ways that fit with their values and what matters to them.

I've illustrated therapeutic conversation with people who have taken up a fighting stance against an illness with different consequences in some of my papers. For example, in the first story that I ever wrote, I met with a man who refused to acknowledge he was dying and was fighting by continuing to work rather than spending time with his family, and that didn't fit with his values. For him, the meaning of fighting his incurable cancer was not abandoning his wife, and he decided to have some enormous experimental surgeries. It was a really important thing for him to do. A fighting stance can work for someone. I can think of another person who had a really traumatic childhood, as did his wife. They had found each other at a young age, and it had been a very happy relationship. And for him, the meaning of fighting his incurable cancer by having some enormous experimental surgery was not abandoning her. It was a really important thing for him to do. The cultural idea of fighting can be both unhelpful and helpful. Dominant ideas aren’t usually good or bad in themselves. However, if they are guiding a person’s life, are unexamined, and don’t fit with their values, they can be problematic. It's more important how particular cultural ideas are applied, the way that they affect people’s relationships with themselves and their experiences, and the meaning they hold as a way of approaching death.   

Another dominant Western idea that can have unintended consequences is the message that we should be positive. In fact, Carla Willig describes the pressure to be positive as a cultural imperative in Western societies. At the end of life, the idea that we must be positive can shut down talk of our mortality and of suffering leaving people alone in their experience. Part of what I do is to listen and be present for stories that are often silenced. They may be experiences of suffering or fears about dying for example. There are few relationships where people can speak of such things. The idea we “must be positive” affects health professionals, family, and friends as well. It may have family members and visitors trying to cheer people up rather than acknowledging what a person is going through. So, at times, it can be a very persuasive and unhelpful idea.  

There are many cultural discourses that can cause people distress when they are approaching death. The idea that relationships end with death, and we have to “move on” rather than that relationships continue beyond death. And then there are some of the individualistic discourses; Western discourses such as “the reason that I've got cancer is because I didn't eat right, exercise enough,” and so on, right? People are often made to feel they are to blame and individually responsible for the bad things that have happened in their lives even when they are societal issues. Those are just a few examples. I find Narrative Therapy helpful in untangling ideas so that the people I meet with can examine them more closely.  

SM: Narrative Therapy has encouraged me to be curious about another person’s world and to use questioning practices to inquire about ideas that a person raises in conversation. This allows the ideas to be brought forward so the person can examine them and reflect on their influence on their life. The dominance of certain discourses or ideas can mean they are taken for granted as “truth” and unexamined. Narrative Therapy has trained me to pull apart the threads of an idea in collaboration with the people I meet with and to look for how that idea impacts on different groups of people with the workings of power in mind.

Hope is an experience that I commonly examine with the people I meet with. Hope can mean many things to many different people, and I can't assume that I know the meaning of it in a particular person’s life. I might ask, “What does hope mean for you?” There’s an example of such a conversation about hope and the questioning I might use in the story “A Small Hope.”

I think Narrative Therapy really lends itself to assisting people at the end of life to reflect on the cultural ideas that are shaping their experience and then choose and think about how they want to go about the end of their lives.   

SM: We're more than the problems that we live with, aren't we? We're more than an illness that we have, but when we're unwell with a serious illness that's perhaps kept us from doing what we normally do over a period of time, the idea of being a sick person, the sick identity, if you will, can really take over. And identities matter. They don't just speak to our past and to who we think of ourselves being, they really influence our decision-making and what we think is possible for us. So, the idea of being a sick person, if it takes over, can be quite limiting in what a person thinks is possible for them, and it can lead to ideas such as a person thinking that they're a burden or that they've got no way of responding to what's going on with them.

I, for instance, can think of a person I saw who didn't feel that his life was worth living because he thought he was a burden to others. When I met him, one of the things I noticed was that despite this man being unused to living with other people and describing himself as a bit of a hermit, the carers kept coming into the room. I asked him about this and the relationships with the carers and discovered he actually learned all about their families and the countries that they'd come from.

I discovered that he was someone who was deeply respectful of others and who was able to get on and make the people around him feel really good about themselves. And through exploring this, we were able to expand his possibilities by bringing forth identities of him as a person whom others liked, as someone who cared about other people and so on. I guess we were able to bring forth a sense of living meaningfully for him. The identity we brought forward of him as someone who could give to others and make them feel valued was really helpful in starting to push the idea that he was a burden out the back door.   

SM: Exactly, it was very helpful. In fact, people would be knocking on the door when I'd be seeing him. It was really quite something, and he was very surprised. He hadn't actually noticed how many people liked and cared about him until I began to ask him about all the visitors and what might lead them to want to spend time with him. 

SM: Yes. The idea of a person being just sick or dying is a thin story of who a person is. Bringing forth the depth and richness of who they are can be enormously therapeutic. As I get to know people, I am listening for who and what matters and has mattered to them in their life and how they have gone about their life. As they share these details, I particularly listen for Aristotelian virtues that are expressed in how they have lived. The themes of virtues give rise to the possibility of rich identity descriptions for the person — them being a compassionate or kind person for example. Such identity descriptions are very helpful for someone who is unwell, as it is possible to enact them with a sick body. If someone’s been a great sportsman, that’s not going to be such a useful identity going forward even if it is something pleasurable to remember. Let me share an example of how these rich descriptions of a person can give rise to sometimes transformative responses.

I was once asked to see a man who was living with a number of very serious conditions. He was refusing to speak about his dying even though he was in the last few weeks of his life, and was insisting on having resuscitation even though it would be hopeless and at the same time very traumatic for his family. He was self-medicating to the point where there was real concern that he might accidentally kill himself and wouldn’t discuss his future care needs. It had come to a critical point, especially for his family. When any of our staff tried to speak with them about any of these matters, he became angry. After an incident where he shouted at one of our doctors, I was asked to go out and see him.

I went out and met him and his wife, and as is common practice for me, I began by asking him about himself and his life aside from the illness. As we discussed who and what was important to him, I was listening for Aristotelian virtues that he had expressed in the way he went about his life. I learned that he dearly loved his family. They were incredibly important to him, and he was very concerned about their well-being. I learned that he was a really considerate employer who knew all about the families of his employees. He personally bought them Christmas presents. He was a very kind man. And I also learned, in his early life, that he was a courageous person. He was an adventurer. He had been involved as a bystander in a very violent and frightening incident and had behaved with incredible compassion and courage. So, these are identities that I sought to bring forward through inquiry as I hoped that they might be helpful to him.

After nearly an hour, he said to me suddenly, “Sasha, you've got it.” And I said, “Oh, may I ask what is it that you think I've got?” And he said, “You get why I want to live. You get why I don't want to die. You will be my death philosopher, and I will talk about dying with you.” We were then able to talk about his dying and how resuscitation would be hopeless and traumatic for his family to witness. Remember, family really mattered to him, and that value was very present in the conversation. We were able to talk about his hopes in taking the medication, that it was harmful, and also about what he might want for the end of his life. I don't think it was just that he felt seen and heard, which was so important, but also that he was able to access parts of himself that he needed to have those conversations. The conversation and the two we had following this one allowed us to plan for him to have a dignified peaceful death with his family nurtured as well.  

SM: I meant that I think it needs to be revered, that we need to give every respect to the people we're talking to, that I need to give every respect to the person I'm talking to. I'm entering the most tender areas of a person's life. They may not have been able to share their fears, their experience, with anyone prior to that moment, sometimes because they want to protect those they love most, sometimes because it is taboo to go into these territories, and no one has been able to ask or even wonder.

I might be talking with a person about what their fears are about dying. What part of dying are they most frightened of? Just recently, I was talking with someone about her deep shame at the thought of other people seeing her naked body. Another was frightened about incontinence, and how would she maintain her dignity? These people are worthy of my every respect, and when they're able to share some of those fears or losses, it's the gift, and it's a gift to be honored, I think.  

SM: No, I'm using it just in the sense of to be revered but perhaps a bit more than that. The hospice has a Māori name called karohirohi, which means where the light hits the water, the liminal space, the space between living and death, and perhaps there is something about that space that's sacred, something that’s out of the ordinary. It's something to take great care of.

SM: I think you raise an important point. I adjust what I do according to the person or family I am meeting with and what it is that they want and works for them. I don't write stories with everybody as it’s not right for everyone for lots of reasons. I think that there is almost always the possibility for assistance, and supporting people to have a sense of living meaningfully if they are willing to have a conversation. Some people have more to grapple with than others and I may not be the best person for them to talk to. Someone else might be a better fit. I think it is for me to adjust and try and discover what works for each family. People have different ways of approaching death and living with illness. Talking may not be their preferred option or what is best for them. I respect their knowledge of themselves and what they want.  

SM: Many. I read Michael White's paper, “Saying Hello,” and learned about the idea of relationships continuing beyond death, but Māori, who are the indigenous people of Aotearoa New Zealand, have held that idea for 1,000 years or more. Māori incorporate their tipuna, their ancestors, into daily rituals. The idea that those who have died are part of our lives is a taken-for-granted idea within their culture and is a powerful example for me.

When I was learning all of this in the ‘80s, family therapy, thinking systemically, wasn't necessarily the usual way of thinking. Whereas, again, for Māori, thinking systemically, meeting as a group and working things out, was, again, a practice that they had done for 1,000 years. And I think the other thing is that the way that they mourn is, in my mind, very enlightened. For example, a tangi or tangihanga, which is a funeral, takes place over days rather than in an hour, giving meaningful time for connecting and expressions of grief. Such a practice has influenced the time my family and many others give to mourning. And I believe that New Zealanders touch their dead more than any other culture in the world, and perhaps this is part of the legacy and influence of Māori. I feel I’ve benefited from the influence of Māori processes.   

SM: Well, I’m very lucky to have my mother still alive and in my life, and so I asked her this question. She said to me that I was very sensitive to other people's needs, and she recognized my fascination with people, and that's why she gave it to me. 

SM: No, we have both been fortunate in that regard. My first experience of death was when my grandfather died when I was 12 years old. I think Elizabeth Kubler-Ross’ book was what got my attention because I was very interested in meaning-making and deep conversations from an early age. When I read the book, I thought, wow, how incredible that people could speak about something important. While personal losses didn’t lead me to this work, I think that those experiences have informed some of my listening. I first learnt what I call “companioning” from my grandmother. By companioning I mean being present alongside someone without trying to fix something that is unsolvable.

When my grandfather died, I was about 12, and my grandmother came to stay with us for quite a period of time. Not long after, we went away on holiday and stayed in an old farmhouse in the rural countryside. Every evening, my grandmother would say to us all that she was going to sit in the car because the furniture was hard. By this, we understood that she was going to out to cry and grieve for my grandfather. After about 10 minutes or so, my mother would say to me, "Sashie, dear, will you go and sit with Granny?” or, “Sashie, dear, will you go and keep Granny company?” I would pick up my tapestry, or patchwork, or whatever I was doing with her and take it out to the car and sit with her. She would tell me stories about my grandfather and sometimes cry, or we would just sit there quietly and do our handy work together. Now, when I reflect on that time, I think about the generosity of my grandmother in sharing her grief with me and the wisdom of my mother in saying to me, “Go and sit with her or go and keep her company,” rather than, “Go and cheer her up.” They taught me how to companion and the value of it especially with grief.  

SM: Loss is something that we live with, and perhaps our relationship to it does change over time. But it isn’t something to be gotten rid of. It's an expression of love very often, isn't it? Or appreciation of something. Losses aren't all the same, and relationships aren't all the same, but, yeah, I would be very loathe to pathologize grief. 

SM: No, it has not. I feel like I've barely gotten started. I don't want to give a simple answer to this because I think it's important. Why is it not too much to bear? I think there are lots of reasons for that, and I often find Kaethe Weingarten's 2000 paper, “Witnessing Wonder and Hope” to be helpful in thinking about some of this. One of the things I'll just start with is that I'm not the person dying, and I'm not the family member. I think that it’s really important to remember my own insignificance in this.

And just going back to setting the context for answering, I think, very often when people find the work too much, they're blamed, and they're seen as not doing enough self-care. Individualistic ideas are applied to them. There are many reasons why I am sustained in this work, and it's not through just self-care. Certainly, I do like to laugh a lot and have some balance in my life, but it isn’t because I'm doing a good job of that, that I can do this work.

I think it's very important that I have a steady relationship with my mortality and with suffering and the body. Otherwise, I'm going to end up in some distress. I do think that it is helpful that I feel steady about my own dying. I think also it's very important to acknowledge our experience and skills as therapists. When a person raises a difficult experience or feels deeply troubled, I’m not worrying about what I’m going to say or do next. If someone was beginning practice, some of the unfamiliar topics I encounter in my work, or the degree of suffering, could be incredibly stressful for them because they haven’t come across them before or haven’t had practice or mentoring about how to respond. I work very hard at the skills that I bring to these conversations, and I think that is empowering for me and being steady.

I also think the relationships I have with my colleagues are very important — I work in a team. I saw a young person recently in a crisis situation. I knew her very, very well, and she'd just been told that she was actively dying. I went and saw her and her parents, and then I went and saw her on her own within a few days. I could then ask my colleague, who's a palliative care specialist, to go out and to speak with her about the physical matters that were troubling her and to give her some reassurance. So, I'm working with colleagues who are very supportive and an organization that values this work, and I think that makes a difference, too.

I also really think that the meaning that we give to work is important. And for me, to be of use, that's enough. I don't need to fix it. I'm really comfortable with being alongside and not needing to solve things. Death isn't a failure for me. But if I can just make a difference to the way that a person meets their death, if we can enhance the relationships in their life in some way, or give them a sense of living meaningfully, or maybe help them to go about it in ways that would be of value, for me, that's more than enough, and I’ve been of use.    

SM: Thank you so much, Lawrence. I’ve really enjoyed speaking with you and corresponding with you, and it's really got me thinking in some different ways about what I do on a day-to-day basis. I thank you for that. 

SM: Oh, yes, I'm very curious. I'm hoping not for a sudden death but for one where I can kind of experience what it's like. I know that sounds quite peculiar.

SM: Thank you, Lawrence. I'd like to share what a woman once said to me. She said to me, “Sasha, I never thought, ‘Why me?’ I thought, ‘Why not me?’” And it reminds me that at any moment, I could be in the other chair, and I think that is something that's particular about this work, I go on learning from the people I meet. 

SM: Oh, yes, there's huge reciprocity in the relationship.