Deciding How to Die: Narrative Therapy in Palliative Care with Someone Considering Stopping Dialysis

Deciding How to Die: Narrative Therapy in Palliative Care with Someone Considering Stopping Dialysis

by Sasha McAllum Pilkington
Working with dying clients demands that clinicians honor their choices and desires in end-of-life care.


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Thank you Larry Zucker, Aileen Cheshire, Timothy Pilkington, and Catherine Cook for your valuable comments and questions when reading earlier drafts of this story, and David Epston for your encouragement and insights throughout the many iterations.

An Introduction

Living with a life-ending illness can raise questions where there is no clear “right” answer. The following illustration of Narrative Therapy focuses on conversations with a man who was tortured by indecision as he considered whether to stop dialysis. Stopping dialysis would lead to his death. This story of our work together illustrates narrative therapy practices that can help to restore dignity, witness suffering, enhance meaning-making, and offer a person a sense of agency as they approach death. Accompanying the illustration of therapy are footnotes. The footnotes [Ed. Note: To be found in the original article] explain more about my thinking and the ideas behind some of the questions that I asked. They also describe how I have applied ideas drawn from philosophy and Narrative Therapy to practice in palliative care. You can choose to read the story of the therapeutic conversations and the footnotes either together or separately.

Deciding How to Die

The referral in front of me had “urgent” written across it in large letters. It was from one of the community nurses at the hospice where I worked.

“Please would you see Mr. Fionn Williams as soon as possible? He has end-stage kidney disease and is having dialysis three times a week. Fionn is being cared for at home by his son Liam, and Liam’s partner Pete. Every week, Fionn decides to stop dialysis only to change his mind at the last minute. This has been going on for months and he and his family are very distressed. Fionn describes himself as “tortured” by his indecision. Dr. White has discussed stopping dialysis with Fionn and his family a number of times. Fionn knows he doesn’t have long to live, and his quality of life is very poor, however, his indecision continues. Fionn has refused counselling support every time it has been offered, but yesterday, he changed his mind. His family are relieved he has accepted counselling and are waiting for your call.”

I rang Fionn immediately.

Reviving Dignity and Meaning

The following afternoon I parked my car in the shadows of some large trees overhanging the road from Fionn’s property. The path to the house gave me an uplifting view of native plants and trees surrounding a soothing lawn. I walked up to the front door intent on assisting Fionn to search for what might be right for him in his decision making. I had no idea what that might be.

Fionn’s son Liam greeted me at the front door. Liam was a tall, lean man, in his thirties I guessed, with a welcoming manner. He invited me into a tidy living room to sit down and then excused himself to let Fionn know I had arrived.

the grey hue of his skin and the care with which he nursed his body through each step made him look older than his 74 years
Fionn hobbled into the room leaning on Liam. I stood up to greet him and, as he caught my eye, we exchanged a brief acknowledgement. As Fionn came closer, I could hear him breathing heavily. He was dressed in winter pyjamas and a heavy cardigan despite the warmth of the day. The grey hue of his skin and the care with which he nursed his body through each step made him look older than his 74 years. Unlike Liam, who had a deep red beard, Fionn was clean-shaven, but it was easy to see that they were father and son due to their similar statures and light blue eyes.

Liam supported his father into the comfortable looking chair beside me that I had carefully avoided sitting in. Fionn gingerly settled back into the chair and looked at me.

“Are you the one who’s come to analyse me? I’m quite curious to hear what you make of me,” he rasped crisply.

I smiled warmly as I leant forward to shake his hand, choosing to respond to the possibility of humour in his comment and to my hopes for the relationship rather than the crispness of his tone. “My name’s Sasha, I’m one of the counsellors from the hospice. I’m looking forward to talking with you, though I’m more interested to hear what you make of you and your experience.” I was aware that being a 58-year-old woman with a soft voice and a big smile might have added to this introduction some of the care I wished to convey. I was generally just what people expected when they agreed to see a counsellor working for hospice and that could ease our first moments of getting to know each other.

Fionn chuckled. Liam turned to his Dad with his eyebrows raised and a slight smile on his face. In a tone of pleasant surprise he said, “I’ll leave you to it Dad, so you can have some privacy.”

Fionn immediately replied, his voice wobbling as it betrayed the toll even speaking had on him, “No, no, you stay. I haven’t got any secrets from you.”

Liam responded by pulling up a chair so that the three of us sat around the coffee table. “Alright then but I’ll have to leave shortly Dad. I’ve got a few things to do.”

They both then turned and looked at me.

“Would it be OK to begin maybe, with me asking you a bit about yourselves?” I offered tentatively. Liam nodded and, looking at Fionn, I explained further, “… so that I might know a little of who and what matters to you. I find people are so much more than their current situation.”

Fionn’s tone was abrupt. “Sure,” he croaked. Before I could respond, Fionn heaved his body forwards gasping at the air as if unable to get enough of its vital oxygen.

I waited, watching until his breathing eased.

Once Fionn could speak again, he explained, “It’s like this a lot... very hard to breathe... If I start to cough, it’s going to interrupt us. Did they tell you it takes a while to settle it down?”

I wondered if the struggle to breathe was behind the severity with which Fionn expressed himself and reflected that he might be anxious or even afraid
I wondered if the struggle to breathe was behind the severity with which Fionn expressed himself and reflected that he might be anxious or even afraid. Feeling so sick could be overwhelming and here he was risking meeting a stranger on top of everything else.

I spoke with sincerity looking into Fionn’s faded blue eyes, “I’m sorry I didn’t know that. Thank you for seeing me. If you start to cough, is it OK if I sit with you or is there something else you’d like me to do? I’d like to do whatever is most comfortable for you.”

Fionn’s voice softened. “Just wait for me to stop. I do eventually.”

“I’m happy to wait. I’m in no hurry. Please take all the time you need to be comfortable without worrying about me,” I said warmly, trying to reassure Fionn that he didn’t need to consider me.

I reflected that people often have to cope with the responses of others on top of the symptoms they are managing, and briefly wondered what Fionn’s experience had been.

Liam chipped in with, “Dad has some medication for it but basically nothing can be done. He puts up with a lot.”

Nodding at Fionn in acknowledgement, I considered pursuing what he was putting up with but then thought it might be more useful to come back to it later in the conversation. We didn’t know each other, and I wanted to create with Fionn an entryway into a space where his experience of illness and treatment could be spoken about without compromising his dignity.

Fionn helped me out by indicating where his interest lay.

“Yeah…so we were doing some introductions. What do you want to know?”

Guided by Fionn’s question, I reiterated, “Would you mind telling me a little about yourself to start with perhaps?”

Speaking to the floor, he answered, “Not much to tell... haven’t thought about anything much other than trying to get through each day for ages. Let’s see now…well, for a start you can call me Finn. It’s what my friends call me”.

I smiled appreciatively, thinking of his generosity in extending me his friendship. “Thank you, Finn. Is that Irish?”

“Yeah. My grandparents came out from Ireland.” He lifted his eyes from the floor and focused on a nearby corner.

The Sustaining Power of Music

“…See that cello over there?” Finn directed.

I turned my head to look with interest.

Finn leant forward, and in spite of his weakness, managed to convey a flicker of enthusiasm. “Played it for years. It had a beautiful mellow sound until last year when I went downhill and couldn’t play it anymore.” Finn hung his head with his body seeming to follow as he collapsed back in his chair.

“What a beautiful instrument. How did you come to learn the cello?”

What could have been a hint of pride entered Finn’s voice as he raised his eyes to meet mine. “My Dad taught me and then I’ve practiced over the years.”

“How old were you when your father began to teach you?” I asked.

“Just a young nipper. Must have been about seven I s’pose”.

what did your father see in you that made him think he could teach you the cello when you were only seven years old?” I exclaimed
“Gee, that’s young. What did your father see in you that made him think he could teach you the cello when you were only seven years old?” I exclaimed.

Finn furrowed his brow thoughtfully. “I s’pose he knew I’d work at it. I’m not one to take something lightly, if you know what I mean. You have to start out young with strings ideally.”

I leant forward to better hear Finn as I asked, “When you say he knew you’d work at it and not take it lightly, would you mind explaining a little more of what you mean?”

“Well….”, Finn hesitated, “Dad knew I’d practice, and you’ve got to do that if you want to learn to play… especially with a stringed instrument. You have to make the notes you see. Even when I was a boy if I set my mind to something, I’d keep going with it.” Again, I noted a glimmer of what could have been pride in Finn’s demeanour. My keen interest must have been evident on my face. When Finn caught my eye, he explained further.

“When I was 4 years old, I decided I wanted to ride an old two-wheeler bike and there was just no way anyone was going to stop me trying. Did it too in the end. Just kept going till I did it.” Finn glanced at me again with a small smile transforming his lined face for an instant.

I responded immediately caught up in the picture he had drawn of himself. “What do you call this ability to keep going with something you want to do?”

“Grit, I guess. I’m a hell of a determined kind of fellow.”

“You sure are, Dad,” Liam echoed.

“What have you come to respect about your Dad’s grit and determination, Liam?” Finn peered at Liam while Liam told a story of Finn never leaving a job unfinished even if it became frustrating and difficult. Liam glanced at Finn as he spoke, seeming to check he was listening.

“Finn, has this ability to apply grit and determination shown up in other areas of your life?”

“Yeah, pretty much everywhere. I would have been dead by now if I hadn’t had it. It’s important to do your best at things and not cop out.” Finn’s certainty suggested to me that this was a quality he valued.

“Would it be too much to ask for another story of you giving of your best with grit and determination?” I enquired, aware Finn had little energy and might want to save it for other matters.

Finn began to give me other examples with Liam chiming in and sharing with me his father’s persistence in living with his disease. When we had gathered a collection of stories of Finn’s grit and determination, I returned to another piece of information he had shared.

“You also mentioned your father taught you the cello as he thought you would enjoy music. Do you think your father had some hopes for you in teaching and encouraging you further into a musical world?”

For a moment, light danced in Finn’s eyes softening the lines of weariness that marked his face. “Music always gave my Dad joy. He loved it and he wanted to pass that on to me. He did too.”

“Like your father, do you get joy from music?” I asked. Finn nodded in agreement. “Is this something you are still able to experience even now when you have so much to contend with?”

“Well, yeah,” Finn said, sounding surprised by himself. “…Especially if I’m listening to the Bach cello suites… beautiful.”

“What does this ability to appreciate music and to feel joy from listening to it give you day to day, especially at this time when you are living with some serious health issues?” I chose to narrow our focus to day-today living to reduce the size of my question.

every month there’s another thing I can’t do. Listening to music is something that keeps me going I guess
“There isn’t much that I can do anymore. I used to be a landscape gardener. That’s gone! Liam and Pete keep my garden up for me now. I do appreciate what they do. But every month there’s another thing I can’t do. Listening to music is something that keeps me going I guess.” Resignation was thick in Finn’s tone.

I tried to imagine Finn’s world. “What is it about the experience of listening to music that keeps you going?”

Finn hesitated as he considered. “It takes me to another place.”

I was fascinated. “Would it be OK to ask where it takes you?”

Finn dropped his shoulders and his face relaxed. “Ah…it takes me back to happier times.”

I asked Finn about these happy times, and he responded readily, sharing some treasured memories. I then returned to an earlier thread of the conversation.

“When did you first notice that you could take yourself to another place while listening to music, even when you were unwell and perhaps had the pain and sickness to draw you back?” I framed my question in such a way that Finn might notice this as an ability and something he was doing. I was aware that a person’s experience of illness could rob them of a sense of having influence over their life.

“In the last year or two at dialysis… I couldn’t read… or concentrate… so I listened to music and it made the time better. I got sicker but it was a habit by then and, well, I’d done it every time. I was kind of used to it.”

“Used to it?” I queried, half to myself as I reflected, searching for a link to Finn’s increasing skill as he got less well.

“I’d kind of practiced it I s’pose…,” Finn explained.

My ears pricked up. “You practiced it? How did you go about that?”

“It’s just what I’ve always done. I started doing it more and more. Certain pieces are better than others. The 1812 Overture doesn’t help pain but if I’m feeling like I need a boost, it’s just the trick,” he shared with a small smile.

I furrowed my eyebrows as I reflected on what Finn had just explained. It seemed like he might have developed a number of skills to manage the symptoms he was experiencing and, hoping to draw these possible skills to Finn’s attention, I offered a brief summary for him to consider. “Can I just check that I’ve understood you right?”

I waited for Finn to indicate if it was alright with him for me to proceed. When he nodded with attention, I continued, “Have you worked out which music helps you live with this and have even discovered particular pieces of music are helpful to you at different times depending on how the illness is affecting you?”

“Well, yeah,” Finn exclaimed, looking pleased and surprised at the same time. He glanced at Liam who gave a firm nod and smiled with encouragement.

“And you said you’d practiced. Could you help me understand a bit more about this practice you’ve been doing?”

Liam and I both turned to Finn who looked as if he was enjoying himself. “I found if I knew the piece… well, I was more relaxed, I guess. It was easier to forget the bad stuff and relax… So… I listened to music I liked till I knew every note. It used to help. Not so much now. I’m too far gone now. Listening to music is one thing I can do though. That counts for something. There isn’t much… Liam and Pete sometimes come and sit with me, and we listen together.”

“It’s a nice time together, Dad. We enjoy spending it with you,” Liam added, as if trying to convince his father. Finn raised his eyebrows and gave Liam a tired smile as if he didn’t quite believe what Liam was saying.

I turned to Liam. “What is it that you enjoy about spending time with your Dad?”

“It’s nice to be together as a family…” he replied with a sidelong glance at Finn.

“Liam have you learnt anything from your Dad’s grit and determination or his ability to appreciate music and be taken to another place that has been useful to you in your life?”

you taught me how to survive, Dad
Liam let out a big breath as if gathering some resolve. “It’s been enormously important to me. I had a tough time at school. I was bullied a lot. Mum was always supportive, which meant the world to me, but it was Dad who taught me how to keep going and not give in to it.” Finn looked down and shook his head slightly. Liam turned to his father trying to catch his eye and said, “You taught me how to survive, Dad.”

Finn muttered, “Wish I could have done more...I didn’t realise how tough it was for you.”

“Attitudes were different then. You’ve been wonderful since Mum died, having me and Pete here and all. Dad, I survived because of you and Mum. Both of you.”

Finn’s eyes glinted with tears as he reached out to Liam. They clasped hands for a moment. A small smile emerged on Finn’s face and his forehead relaxed. Liam lowered his shoulders and released a breath as he looked again at his father.

“Finn, what is it that you wish you could have done for Liam?”

Finn looked steadily at me but his words were for Liam. “Been there for him… understood more…protected him, I guess. Beth was better at it than me.” He turned awkwardly towards his son, moving his chest carefully around until his eyes eventually found Liam’s.

Liam choked up. He managed to croak, “Oh, Dad. That means a lot,” before emotion silenced him.

We sat together not speaking as we quietly honoured what had passed between Finn and Liam.

After a few minutes Finn began to cough. Liam touched his back lightly waiting patiently for Finn to settle. When they both looked at me indicating their readiness to continue, I asked Finn, “Is there anything in particular you would have liked to have understood, or maybe protected Liam from, that you would like to speak about today?” I was aware that Finn might die at any time and such a question could lead to further acknowledgement and connection that might be helpful for both Finn and Liam.

We continued talking together in this manner. Bit by bit I researched, listening out for what was important to them in their lives, their good intentions, skills, beliefs, and hopes. When we encountered acts of kindness, loyalty, love, and any virtue they might value, I asked more questions. Finn talked about his wife Beth, fatherhood, the important relationships in his life, and his work.

Twenty minutes later, Finn signaled a wish to change the direction of our conversation. “It’s all been taken away, Sasha. Bit by bit. I was an active person with a full life. Now all I’m left with is this terrible sickness.”

Exploring the Impact of Finn’s Illness

“Would it be OK to ask you a bit more about this sickness you’re living with Finn? Or is it something you prefer not to talk about too much?” I asked, opening up the space for Finn to describe what it was like for him to be so unwell. In spite of undergoing many assessments in health services, I knew that Finn may have had few opportunities to talk about his experience.

nothing tastes good. I can’t even sleep and I’m not nice to be with. Irritable. I want to die. I’ve had enough. I want to die
Finn seemed to welcome the opportunity to talk. “I’m fainting every day, and this pain…” Without seeming to know what he did, Finn held his ribs. He was clearly uncomfortable but carried on speaking though hopelessness seemed to hover nearby as he spoke. “I never have any energy and I feel so sick I don’t feel like doing anything anyway. I’m so nauseated I can’t eat, or not much. Nothing tastes good. I can’t even sleep and I’m not nice to be with. Irritable. I want to die. I’ve had enough. I want to die.”

He sighed but the reflective pause was denied him as the next moment he coughed and choked, gasping as his face became greyer with every minute. Liam immediately bustled away to get some medication while I stayed providing companionship as Finn struggled to breathe. It took 10 minutes for the medication to settle Finn’s breathing, and longer for him to relax.

Once Finn was comfortable again and his breathing had eased, Liam reluctantly explained that he needed to go. There was medication to pick up and other jobs to do. I thought about the extra work and expense that often came along when someone is very sick.

The front door shut noisily a few minutes later. Finn and I were alone in the quietness of the house.

“You were speaking of how each part of your life is being taken away bit by bit from you and you said you’d had enough and want to die. Would you mind if I asked you a few questions about that?”

“Go ahead,” Finn replied, and I noted the warmth that had become increasingly present in his voice.

“Is there anything in particular that has been taken away that leads to this sense of having enough and wanting to die?”

Finn spoke with energy as he confided, “It’s all of it but mainly that I feel so awful. I wish I’d hurry up and die but I keep waking up every morning and another day starts.”

I tried to convey care in my tone as I responded, “Would you mind explaining a bit more of what you mean when you speak of wishing you would ‘hurry up and die?’”

Finn sighed. “I want to go to bed and not wake up in the morning. Tonight preferably. Every day is a struggle.”

“Could you help me understand what your day-to-day life is like, Finn? Would you be kind enough to walk me through a typical day for you perhaps… so that I can better understand a little of what this struggle is like for you to live with?” I tried to shrink my question about the struggle Finn was experiencing into a more manageable size by offering a time frame, so it wasn’t overwhelming.

Finn shared with me his daily routines. As I listened, I could easily empathise with why he might be feeling like he’d had enough. The effects of being unwell sounded exhausting. Hearing about Finn’s day-to-day life allowed me to gather some detail, and as he talked, I asked him how he responded to each difficulty or symptom he encountered. I noted how eagerly he spoke to me in spite of the fatigue he was managing and the topic of conversation and wondered if he’d had the chance to speak of his efforts in response to the difficulties.

When a pause occurred in the conversation, I checked with him, “How are we going with this conversation, Finn? Are we talking about what you hoped we might, or have I taken us off track?”

people I meet often want to protect those they love from the worst of their experience
Finn relaxed back in his chair. “It’s actually a relief to talk about it, Sasha. I don’t want to worry Liam and it’s different saying it out loud somehow.” I wasn’t surprised by Finn saying that he didn’t want to worry Liam. People I meet often want to protect those they love from the worst of their experience.

“Finn, how would you describe the changes you’ve had to make to your life as a result of this sickness?”

Finn picked at his cardigan meditatively as he considered my question. “It happened gradually. When I first got sick, the dialysis really helped. I felt good and I could enjoy being outside and in the garden. I was able to keep working for quite a few years. But now, I feel terrible all the time. It’s been all downhill. I can’t work of course. I can’t do anything. Liam cooks for me and I have help showering. Last week I started falling. That’s on top of the fainting. And of course, I have to go out to dialysis three times a week. That’s always a huge effort.”

“Could you teach me about your experience of dialysis?” I asked, wondering what it was like for him.

“A taxi comes and picks me up ‘cause Liam and Pete are at work. It takes me to the hospital. All the people having dialysis are in a special room hooked up.” Finn sighed.

A picture formed in my mind. “Do you get to know the other people there?”

“We don’t talk to each other. We just all stay on our beds there. There was one man who would talk to everyone in the room and got people chatting a little but then one day he didn’t come back. I don’t know what happened to him. People do gradually stop coming back but I don’t know exactly why. I wonder about them you know…. have they died or did they decide to stop?

“In the end it’s a bit of the same thing I suppose...” Finn sighed and his shoulders sagged. I had imagined the people all sharing their experience and learning about each other’s lives, maybe finding some support in being together. Finn’s description was a surprise and it contrasted with the stories I had heard from other people. I briefly considered what Finn had told me and thought of asking about the effects of not connecting to the other people receiving dialysis. However, I decided to take another tack which I hoped would be more useful to him.

“May I ask, what were your hopes and intentions when you decided on this routine of attending dialysis three times a week?

I wanted to live! And I wanted to have a good quality of life...I was pretty sick then
“I wanted to live! And I wanted to have a good quality of life...I was pretty sick then. I’d been in and out of hospital, had three operations and endless tests. Beth was alive and we wanted to be able to do things together that we’d planned….and support Liam. It seemed a really good solution at the time. I didn’t hesitate. I wanted to feel well again. The dialysis saved my life… and if I stop, I’ll die.”

I nodded solemnly to acknowledge the magnitude of what he was facing and we both paused for a moment. “…Were your hopes met by the dialysis treatment?”

Finn explained, “Yes, they were at first. I was able to do things with Beth and I felt good”.

“As the years went by, did these hopes and intentions you held for the dialysis shift or change in any way?”

Finn answered me thoughtfully. “They changed without me knowing, if you know what I mean. I got sicker as my disease progressed. I s’pose I’ve just kept on going to dialysis as I don’t want to feel so sick. But then there are side effects as well, not as bad as the disease of course, but bad enough, and the visits to the clinic take a lot of time.” He paused a moment and frowned. “It’s different now. I don’t know what to think. I want to die. Every morning I wake up and I think I’ve had enough. I can’t live like this anymore. I’d rather just not wake up one morning.”

Exploring Finn’s Wish to Die

“You’ve spoken of wanting to die and wishing you wouldn’t wake up in the morning. Do you want to die by not waking up rather than, say, by deciding not to go to dialysis?” I asked, noting Finn had not said he wanted to stop dialysis.

Finn hung his head. “Well…yeah…that’s right. I know I should stop dialysis, but I can’t seem to make the decision. Yesterday I thought I was going to stop but then I couldn’t go through with it again. I’ve been doing it for months. It’s awful, not just for me. I’m putting Liam and Pete through it too. I’m letting everyone down. I’m such a coward.”

Tears filled his eyes.

I reached out, moved that he would judge himself a coward when such a decision would try most of us deeply. “Would you like to try and figure this out together?”

Finn took out a large handkerchief from a pocket in his cardigan. He dabbed his eyes with the folded hanky before slipping it back into his cardigan. “Yes, yes, that would be good,” he responded looking at me with what might have been a glimmer of hope.

I considered what might be a helpful direction to go in. I was tempted to inquire about Finn’s idea that he was a coward but reflected we might first need to carefully research his experience of decision-making. Perhaps we could unravel some of the ideas that were leading Finn to feel he was letting people down and “should stop dialysis.” He might then be able to arrive at some different ideas about himself. “Would it be OK if I asked you about your thoughts about dialysis and what you want?”

Finn nodded.

“I notice that you said you were thinking that you should stop dialysis. Could you help me understand how you came to think stopping dialysis was something you were supposed to do?”

“Lots of ways. Dr. White said he couldn’t do any more for me than what he’s doing. He said there comes a time when dialysis just doesn’t work so well anymore, and the disease has progressed too far. I know he’s worried about me.

“Last time that I was in hospital some of the ward staff talked to Liam and Pete and said I was so bad that they should try and help me stop. It’s expensive too, and I could be taking someone else’s spot. I feel so terrible, but I just can’t seem to do it.” Finn’s voice tailed off into a whisper. At the same time a pink flush appeared on his neck and began spreading up towards his face.

“It sounds like people are worried about what you are putting up with and there is quite a tide of thought towards thinking it would be a good idea to stop…May I ask you though, Finn, do you have any thoughts about how you would like to go about this last part of your life?”

I want to be enjoying my life
“I don’t want to be like this, worrying all the time and feeling such a chicken… I don’t know…” Finn rested his head in his hands and looked down at the floor. I waited as he considered what he might want. Eventually he murmured, “I want to be enjoying my life… spend time with Liam and Pete… Quality of life I suppose. The dialysis gave me that for so long. I wanted it then, but it started to change.”

“Can you remember how it began to change?”

“Yeah. It was a few years back and I was admitted to hospital. I started to have a few doubts about it then.”

“Do you remember any experiences or thoughts that led you to having these doubts and perhaps consider that dialysis might not be completely what you wanted?” I asked, wanting to acknowledge the mixture of possibly conflicting feelings as we researched the movement in Finn’s thoughts.

“I guess as I started to have some problems and was less well. After Beth died, I had a few doubts. I started to think I might not want to prolong my life but then I had some projects on, and time kept passing. As the dialysis worked less well, I thought about it more. When I started to feel awful, even though I was having it, I wondered, ‘what was the point?’ Then I got more side effects after each dialysis session. I had to have another operation too and that made me think I might want to stop. But there was stuff to do, and it just stayed in the back of my mind.”

“Would it be OK to ask what happened to the idea that it wasn’t completely what you wanted? Did it stay with you unchanged or did it begin to change over time?”

“As I got sicker, I thought about it more and more, I suppose…now that I think about it. I didn’t know if I could keep going. I got really irritable with everyone…wasn’t nice to live with. I guess I started to think about how bad I was feeling and whether I should keep going all the time.” Mournfully he added, “I want to be able to decide to stop and I can’t.”

I didn’t make any attempt to hide my compassion for Finn from my face or my voice
I didn’t make any attempt to hide my compassion for Finn from my face or my voice.

“What a terrible position to be in. If you were to describe to someone else this weighing up you have been doing of whether to continue with your life, how big of a decision would they think this was?”

“Huge. It’s the only one I’ve got!” Finn smiled wryly in spite of himself. I nodded in acknowledgement.

“As you both want to die, and at the same time, consider whether you can go on with your life, what do you take into account?”

“I guess it depends how I’m feeling. Most of the time I feel like I can’t even make it through another day I feel so bad…I decide I can’t take it anymore and won’t go to dialysis but then I change my mind again like I did yesterday.”

As I listened to Finn, I noticed that the thought of stopping dialysis seemed to be specifically linked to the feeling he couldn’t bear the symptoms he was experiencing. I decided it might be helpful to gather more information. I also wondered if introducing the idea of possible agency in Finn both “deciding” and “not deciding” to go to dialysis might be useful to him. His description of himself as a coward loomed large in my mind.

“Hmmm…Finn, would you mind walking me through how you came to decide yesterday to stop dialysis and then re-considered and decided to continue?”

“Well…I couldn’t eat yesterday the nausea was so bad. I’d been awake a lot in the night, and I was feeling so terrible. All I could do was sit in my chair. I’d had enough… It felt like I couldn’t go on. So, I decided I wouldn’t go. But then I changed my mind at the last minute again. Made me late…”

Concentrating hard I asked him, “Could you walk me through sitting in your chair to you deciding to go to dialysis?”

“I was sitting in my chair feeling so terrible I wanted to die… and then Sue, the wife of an old friend, came to the house with a cake. I couldn’t eat any of course. Then I sat in my chair. And…half an hour later I thought maybe I’d go.”

“What sort of cake did Sue bring?”

Finn raised his eyebrows. “It was a chocolate cake she’d made.”

I reflected on Sue’s kindness. “Did she make it especially for you?”

The pace of Finn’s speech quickened, “Yeah, she did. Nice person. She often pops in with my mate or sometimes on her own with some cooking and we have a chat. She’s a sympathetic woman.”

“May I ask what difference it made to you to have Sue pop in with a cake she had baked especially for you and have her stay for a bit of a chat?”

“I dunno. I guess it felt like life wasn’t so bad maybe.” Finn sat up a little straighter in his chair.

“What was it about your life in that moment that made it seem ‘not so bad?’” I asked, collecting more details.

there are good people around. Kind people who are interested in me I s’pose. Makes me think life isn’t so bad after all
Finn spoke with gratitude, “There are good people around. Kind people who are interested in me I s’pose. Makes me think life isn’t so bad after all.”

“How would you say feeling ‘life wasn’t so bad after all’ influenced the way you felt about going to dialysis?”

“Well…I do wish I didn’t wake up this morning but yesterday, well, I felt I could go on, that things weren’t so bad…and… so I went to dialysis,” Finn replied meditatively.

“Do you both want to die and value some of what your life gives you?”, I persisted.

Energy penetrated Finn’s voice, “Well…yeah! I never thought about it like that.”

“Would it be OK if you gave me another example of you re-deciding to continue on with your life?” I asked, intending to examine this idea further.

Finn began to give me examples of him deciding to stop dialysis and die because he felt he could no longer go on, and then finding some reason to continue on with his life. Sometimes it was a gift from someone, a kind act, a moment of respite from the symptoms he was living with, or even a phone call. I discovered that he was skilled at finding things to appreciate and reasons to continue with his life.

“Finn, do you both want to die and value some of your life?” I repeated with a smile.

He responded, “Well, yeah. It doesn’t sound like it makes sense but yeah!”

“When you start to feel overwhelmed by the symptoms of the illness or the side effects of dialysis, what happens to this valuing of your life?”

“I don’t know. I lose it... I feel overwhelmed. Then someone does something nice and I remember it again.” Finn looked up with a small smile on his face. I noticed with admiration his gratitude for the people in his life.

I was tempted to research more about this value Finn held for his life, but time was running out and he was starting to look fatigued. I made a mental note to return to it if we met again and instead decided to pursue the way he described himself.

“Finn, you described yourself earlier as a coward. Would it be OK to ask you what your understanding of a coward is?”

“Someone who runs away…is chicken and doesn’t face things,” he muttered, a bit shamefaced.

Slowly, I summarised a little of our conversation. Finn nodded as I recapped, “You’ve talked about wanting to die and deciding to stop dialysis…but then being reminded of the value you hold for your life by appreciating someone or something, and then re-deciding to continue with your life by going to dialysis. Would you describe this as running away from death — as cowardly — or is it perhaps closer to moving towards living, appreciating it, and being connected to what you hold dear?”

Finn stared at me wide eyed. He managed to stutter, “Well…yeah, my life…yeah, I’m doing that…not running away…no, not running…”

are you valuing and respecting your life even as you wish to die
I repeated my question, offering a little more for him to consider. “Are you valuing and respecting your life even as you wish to die?” Finn nodded. “Does that valuing perhaps connect you to living and make ‘having a hand’ in the timing of your own death more difficult to contemplate than most of us could possibly imagine?”

Finn nodded again. Tears flowed down his face as he stared at me unblinking. He reached into his pocket for his handkerchief.

“I’m not a coward,” he croaked.

We sat together with Finn mopping his face with his handkerchief. He sat, no longer hunched or downcast, but upright, making eye contact with me from time to time as he continued to pat his skin dry. Every now and then his face lightened, and a small smile emerged.

In a whisper he repeated to himself as he patted the tears away, “No…I’m not a coward…”

We were coming to the end of our time together and I noticed Finn was beginning to look weary. After a few more minutes of conversation I finally checked, “Is this a good place to stop?”

“Yeah. It probably is.”

Tentatively I asked, “Would you like to meet again?”

“Oh, yes. Can you come back soon? In a few days?”

I was aware that Finn could die at any time or in the next few weeks. Time has a different meaning when someone is approaching death and that meaning has a role in shaping the gap between counselling meetings as well as the length of them. I looked up from my diary and smiled at Finn, “I’ll be back at work on Wednesday. That’s five days. How does that suit you?”

“Yeah, yeah. Come back then,” he answered hastily returning my smile.

Getting Curious About Fear

Five days later I arrived at the house, grateful for another chance to talk with Finn. We had greeted each other warmly and were now deep in conversation as we sat together, comfortable in each other’s company. Finn had greeted me with descriptions of his struggle to live with symptoms of his disease. As I listened, I noticed he looked significantly less well than he had just five days before. The lines etched into his face had deepened, adding shadows to the transparency of his skin, and as he pulled his heavy woollen cardigan about him, I thought he was perhaps even thinner.

“I’m still here,” Finn stated ruefully. His voice scratched over the words as he explained, “I knew I’d go for treatment this week. I nearly couldn’t get out the door. I was vomiting and it was almost too much, but somehow I managed…your hospice doctor visited afterwards and it’s better now…”

My speech slowed to match his. “How did you know you’d go for treatment?”

Finn’s eyes twinkled. “I pretty much decided after you left last time. I figured I needed a bit more time to work things out.”

I gave a small smile in return. “What made you think that it might be helpful to give yourself a bit more time to work things out?”

I’m kind of wondering about what it might be like…you know, dying
Finn immediately looked serious. “I’ve been wondering…You must have seen people like me. I feel so bad now…how much worse is it going to get? I’m kind of wondering about what it might be like…you know, dying…” Finn’s voice trailed off. His face was drawn and tense. I could see a pulse at his temple moving his papery skin rapidly in and out.

I wondered if fear could be playing a role in making it difficult for Finn to know what he wanted. “Would it be helpful to talk about your wonderings about dying?”

Finn raised his chin though his voice had a tremor, “Yeah…might be.”

“Is it OK to ask which part of dying you have been wondering about?” Some people I meet with are more worried about the process of dying while for others their biggest concern may be about how family will cope or what it might mean to be no longer alive. I didn’t know where Finn’s attention was focused.

Finn drew his eyebrows together and shifted in his chair. “The dying part. It’ll all be over when I’m dead. I guess I’m wondering what it’s going to be like…might not be too good…might be painful.” He looked up at me with wide eyes.

I was aware from the hospice doctors that Finn might feel very sick when he stopped dialysis but the medical staff had also spoken of what could be done to help Finn. Dr. MacDonald had also told me that this information had been explained to Finn many times. With this in mind, I wondered if it might be helpful to draw out the narrative of what could be done to support Finn.

“What did the doctor say they could do to help you should you start to feel sick coming off dialysis?”

“She talked about one of those pumps…that make you relaxed and give you pain relief all the time…” He glanced at me as if checking this was true. I nodded in response.

Finn and I continued to talk. As we spoke, it became apparent that he was now voicing fears and considering the end of his life in a way that until now he had not been able to. Finn repeated to me the information he had been given by the doctor. As we revisited what Finn remembered it seemed to reassure him. It was as if Finn had been unable to consider and absorb the information until that moment, he uttered the information himself.

Finn rounded our discussion off with, “I’ve just got to decide and follow through with it… whichever way.”

“Would it be OK if I asked you about this desire of yours to make a decision and to follow through with it? Have I got that right?”

Finn nodded. “Yeah, that’s right. Sure.”

“What makes it important to you to decide and then follow through?” We both knew he didn’t have long to live regardless of whether he stopped dialysis or not.

I looked over at Finn who was shifting stiffly in his chair. Noticing he had more to manage than just my question, I elaborated a little, conveying in my tone as much care as possible. “If you were to die, say in your sleep having decided not to decide one way or another about going to dialysis, how would that sit with you for example?”

Mournfully, Finn intoned, “My soul would know. I’d die feeling like I’d copped out and I hadn’t looked after Liam and Pete. It’s hurting them. I have to decide one way or the other. I feel like I can’t live properly while I can’t decide. It’s with me all the time.”

“Mmm…” I empathised, my complete attention on every word. “What do you imagine it might feel like to have made a decision about what you want to do?”

Finn sighed. “Peaceful…”

“If you were to decide, how would you know if it was a decision that you would want to follow through on? That it was a decision to be acted on?”

“I guess I would know if it was my decision and I thought it was the right thing to do. Not what someone else thought was right but what I thought. I’ve been thinking about what I told you last time.”

“How would you recognise a decision that was yours and right for you?”

“I would feel it in here,” he replied, putting his hand over his heart, “…not in my head. I wouldn’t worry all the time.”

I considered asking Finn if he could envisage any steps that might take him in the direction of deciding but wondered if it might be too hard of a question, which would not be helpful. As I was pondering, Finn repositioned himself again in his chair groaning quietly with each movement. “I just feel so bad, Sasha. I’m so tired from all this. It’s gone on and on. Everything’s a struggle.” He sighed heavily.

“Which parts of the struggle are you noticing as we talk, Finn?”

“It’s the pain. I can’t seem to get away from it today,” he groaned. Rather than ask him about the pain which had already been canvased in depth by the two of us earlier, I enquired, “Finn, what keeps you going day to day when you are living with pain that you can’t get away from as well as many other challenges caused by this illness?”

see those buds there?” he said, pointing to some bulbs outside the window. “I’m waiting for them to flower"
“It doesn’t feel like I’ve got a choice, Sasha. I just keep on keeping on like I’ve always done.” I waited as he seemed to contemplate. A small smile crept onto Finn’s face. “There’s one thing though. See those buds there?” he said, pointing to some bulbs outside the window. “I’m waiting for them to flower.”

“What is it about waiting for the buds to flower that has you keeping on with your life?” I wondered, curious.

“You just never know exactly how they are going to flower and that moment when the petals unfold…so beautiful.” Light crept into Finn’s eyes and his brow relaxed as he talked about the plants he had delighted in nurturing most of his life. I was fascinated by his ability to appreciate beauty and asked him about it. When he had concluded I decided to research further.

“What else supports you to keep going as you manage this disease?”

Apologetically, Finn explained, “I’ve never watched much TV, but Pete and I have been watching Downton Abbey together. We both like it. I keep wondering if Edith’s going to be alright.”

I grinned. I wanted to know too!

As we talked, I reflected that there were many aspects of Finn’s life he had found a way to enjoy. As the list grew longer, I marvelled at his ability to adapt to his circumstances. If I had guessed at that moment, I would have imagined Finn would decide to continue with dialysis for as long as possible.

I finally asked him, “You have spoken of finding ways of enjoying parts of your life in spite of all that you are managing, of things you are looking forward to and times of companionship. Is there anything you’d like to add that’s important to you in the keeping on going?”

Finn screwed up his face concentrating. After a pause he said with generosity, “Well…Liam is important… and Pete his partner. I want them to be happy.”

I could see Finn was tiring. He had begun to cough, and his speech had slowed. I carefully summarised what we had covered, checking with him as I spoke. We then arranged another time to meet the following week.

As I picked up my bag and got ready to leave, I turned at the door to say a final goodbye. Finn smiled at me. In what could have been a mischievous tone, he sent me on my way with, “You know, Sasha....I have hope for my life!” His smile became a grin and I left, uplifted by the manner of his goodbye.

Deciding To Die

Finn was in the hospice inpatient unit. He had decided to stop dialysis. Finn was dying
Five days later I sat in the morning meeting unable to focus. I heard conversations around me but they passed me by. All I could think of was the news that had greeted me when I walked in the door. Finn was in the hospice inpatient unit. He had decided to stop dialysis. Finn was dying. As the news reverberated through me, some of the staff offered their praise. They understood Finn’s decision as the right one given his poor quality of life.

“That’s good work you’ve done, Sasha. That poor man was suffering so much,” a colleague said.

The kind words didn’t ease my mind though. Dominating my thoughts was the question, “Was this what Finn truly wanted? Was it right for him?” My internal agitation made its way to the surface, and I moved restlessly in my chair. I could hardly believe Finn’s swift change of heart. “What had happened? How had he come to decide?”

I often created spaces in which a person could discuss how they wanted to approach the end of their life
I had met with many people who were considering treatment options they had been offered by their doctors. I often created spaces in which a person could discuss how they wanted to approach the end of their life. What was it that had me quite so unsure this time? Was it the rapid time over which this had all occurred? I thought about Finn saying to me, “I have hope for my life” as I had left his house only the week before. I knew I had held no preference as to what Finn should do, but what effect, if any, had our conversations had on his decision-making? I resolved to make sure Finn was doing what he truly wanted.

I almost ran downstairs to my office, checking my diary as I went. As I made my way through the hospice inpatient unit, I asked one of the nurses to enquire if Finn would like to see me. When I arrived in my office the answer was already waiting for me on the answerphone. Finn and Liam were keen to meet with me.

I knocked on the door to Finn’s room in the late morning. Finn was lying in bed in his pyjamas. His head peeped out of the bedclothes, the white of the sheets drawing my attention to his pallor.

“Hi, Finn.”

“You found me alright, then. Thought you might go to the house…” he rasped. Finn’s mouth turned up as he attempted a smile. He seemed to have forgotten that I had arranged this meeting with them only hours ago.

Liam’s eyes shone with tears as he explained, “We arrived yesterday morning. Dad’s been getting worse every day. He’s a bit confused at times. They say he’s only got a day or two maybe…”

Tentatively I asked, “Finn, do you have the energy to catch me up on events since we last met? Or would it be easier if Liam helped me out here? It seems like a lot has happened…”

Each word was an effort as Finn explained, “After I saw you, I went to dialysis and decided I’d had enough.”

My speaking seemed to slow to the pace of his. “How did you know you’d had enough?”

“It was just too difficult.” The gaps between each exchange lengthened as we responded to the limits of illness.

“May I ask what it was that became too difficult?”

when I decided to stop treatment it was like a great relief… as though a weight had been lifted off my shoulders
“Living…when I decided to stop treatment it was like a great relief… as though a weight had been lifted off my shoulders…I was in pain all the time. I’m in the final stages…and I’d had enough. I wanted some peace.”

“What were you hoping for that some peace could give you?”

“For the last few months, I was always in pain, tired, and felt sick. I was falling over and I couldn’t breathe properly. I never got a day’s relief…” Finn paused gathering his breath. I remained silent, allowing him the time he needed to go on.

“The doctor told me it was harder to stop than to start dialysis…and I started to think about that. It’s easy to start because you think it’ll do you some good. And it does to start with. Then it gets harder and harder…to get some peace you have to feel worse first.” Finn began to cough. I waited quietly, conveying in my stillness and relaxation that I was in no hurry for him to resume the conversation. When Finn had settled, I picked up the thread again, “You’ve spoken to me of the struggle to decide. How did you move towards thinking that some peace might be more important to you than continuing on with your life?”

“I realised I couldn’t do what I wanted, I don’t have quality of life and I thought a lot about what I wanted...what was important to me…you asked me that…and I thought, ‘I want some peace.’” Finn shut his eyes underlining what he had said.

“You had some worries about this time and what it might be like. Are those worries still there, or have they changed in some way?”

“They’re different now, not so bad. The staff are helping me.” Finn looked out the door in the direction of the nurse's station. “I’ve been thinking about it for a long time, and I just thought, ‘this is enough’”

Finn tried to move up the bed but couldn’t. Indicating with his hands to Liam he didn’t want help, he settled for moving his body onto his side.

Liam answered as he watched Finn struggle but respected Finn’s request to be independent. “It was a shock. It took me a while but I understand. And it was a relief especially when we found out Dad could come into the hospice for care. Suddenly he was the person he used to be. Laughing and joking and poking fun. He was himself.”

Turning to Finn I asked, “Do you feel more yourself?”

Finn answered as if each word was weighted down by the effort it took to utter. “Yes. I was using all my energy in the fight…with the illness. It was a struggle every day. There was nothing left…Just to go to dialysis was so exhausting. It’s a relief… A total relief and now I want peace. I won’t go back to dialysis again…”

I turned to Liam to give Finn some respite from speaking. “Liam, what do you think your Dad is prioritising when he chooses peace?”

“Control over himself again. He wanted to take it back. He’s spent so long being sick, going to dialysis, taking so many pills, trying to sleep and dealing with the pain. It’s a relief for him now. And drugs have side effects. He’s more himself now.”

Finn added, “Yeah…it kind of enslaves you….” His eyes closed.

“Liam, you said that your Dad stopping dialysis was taking back control and being the person he is. Could you tell me about this person you understand your Dad to be?”

“Organised. He always liked to be in the driving seat. He is a bright, active man who always managed everything on his own. He got himself to treatment every week through all these years, did things on his own terms.”

yeah, and I'm going out on my terms now
Finn opened his eyes again and echoed, “Yeah, and I’m going out on my terms now.”

“Finn, you mentioned that ‘it kind of enslaves you,’ earlier. Could you help me to understand more of what you mean by that?”

Finn sighed. “My catheter leaked last night…everywhere. The nurses had to come and we did a big clean up. It’s not just the dialysis. It’s everything. All the problems, the treatment, the side effects. It’s all the time.”

“So much to deal with….” I murmured.

Finn responded with a long speech for someone so unwell. “I feel free now…A man came to the dialysis unit for his first treatment when I was having my dialysis the day after I saw you — what ended up being the last one. I watched him come in and I thought, ‘if it was me doing it again, I would never start.’ I was kind of shocked by myself thinking that, but I realised it’s true. I wanted to go over and tell him not to do it… but I didn’t of course. And then I thought, “What am I doing here?” and suddenly I knew I didn’t want to be. I thought it would feel like giving up, but it doesn’t…it feels right in here…” Finn moved his hand to his heart. “I am me again…and soon I will have some peace”.

as Finn spoke, I reflected that I might not ever fully understand what had allowed him to decide
As Finn spoke, I reflected that I might not ever fully understand what had allowed him to decide. I wondered if reconnecting him to a sense of his own worth or to some of his knowledge and abilities had had a role, but I would never know for sure. A slight smile emerged on Finn’s relaxed face. In that moment I could see what looked like the peace he had been describing.

I left the room after thanking Finn for sharing so much of himself and his life with me and teaching me about decision-making.

It wasn’t the last time I saw Finn though.

Two days later, I walked past Finn’s room knowing he was now close to death. Finn was alone, lying in his bed and I thought I could hear Liam’s voice in the hallway talking to a nurse. Finn invited me in with a look. Speech seemed beyond him. When I sat down by his bedside, Finn reached over to hold my hand. Willingly, I offered it to him, and he clutched it tightly. We remained silent, although I could feel what I thought of as companionship and warmth between us.

Finn lay sprawled on his back with his eyes closed. His breathing was moist, and I thought he was possibly close to death. After a time, I felt a slight pressure on my hand. “Is this it?” he whispered, seeking my confirmation he was dying.

Steadily, gently, and with all the kindness I could fold in, I slowly confirmed, “Yes…This is it.” He seemed to relax then, sinking back into his bed as if soothed. Though his hand still held mine, it had lost its tight grip.

* This article, with full references and the author’s notes, first appeared in the Journal of Contemporary Narrative Therapy, 2022, Release 2, 27-61, and is reprinted with permission of the author.  

© 2023,
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Sasha  McAllum Pilkington Sasha McAllum Pilkington is a narrative therapist working for Harbour Hospice in Tamaki Makaurau Auckland. She has contributed articles to various publications on counselling practice in palliative care. Sasha has an interest in illustrating as well as discussing narrative therapy practice. Her work seeks to show the rich stories that can come forth at the end of life as people seek to find ways of approaching death and storying loss in ways that matter to them. Sasha has presented workshops in Aotearoa New Zealand, Norway, USA and Canada, and online through “Re-Authoring Teaching” on therapeutic conversations in palliative care. 

CE credits: 1

Learning Objectives:

  • describe the Narrative Therapy technique of curious questioning
  • develop case conceptualization for working with dying clients
  • formulate treatment plans for clients who wish to end life-sustaining treatment

Articles are not approved by Association of Social Work Boards (ASWB) for CE. See complete list of CE approvals here