Category: Healthcare / Medical

Terminally Ill Pediatric Patients and the Grieving Therapist

Posted on by Psychotherapy.net Team

When asked about the favorite aspect of my (dream) job, I could talk for hours. I feel passionate about working in a pediatric hospital setting with chronically ill children and their families. Each day brings new challenges. I enjoy inpatient and outpatient sessions, parent consultations, family work, collaboration, and advocating for this population any chance I get.

On the contrary, when asked about the least favorite aspect of my job, my response is far less glowing and enthusiastic. I work with children from various departments within the medical center, including oncology, cardiology, trauma, and solid organ transplant. It is inevitable that I encounter children who are terminally ill. I will never understand why children die. Experiencing the death of a child is the most painful part of my job, and it will never make sense to me although logically, I know this happens. On the other hand, I feel honored to be a small part of the most vulnerable time in a family’s life, and to walk alongside them in their journey of grief and loss. Helping a family and their child during end-of-life care is arduous work. It has been impossible for me to not be deeply impacted working in this arena.

I will never forget the first patient with whom I worked that received a terminal diagnosis. I was an intern completing my graduate work. Because I speak Spanish, I was privileged” to work with more challenging cases. I remember sobbing to my mentor at the time, not understanding how a child could die. In response, my mentor neither chastised nor criticized me. She agreed with me and mourned with me. She supported me through that experience and reminds me even to this day that we are human. That support has stuck with me as I continue to mourn the deaths of children with whom I work.

When I was first asked to write a post related to working with terminally ill children and their families, I hesitated, perhaps not wanting to open old wounds and visit the pain that comes with this kind of work. But as I’ve experienced more child deaths over the years, I wanted to share my thoughts and feelings and am humbled to share my stories.

The Dying Child

The dying child has a variety of emotional, physical, and spiritual needs. They have questions and often want information about what is happening to them. The child who is terminal often feels unsafe and understandably anxious. One word I’ve frequently heard, particularly from the parent, is “brave.” In my experience, many parents of terminally ill children find inner strength in the strength of their own children. I remember one child who was aware of her prognosis comforting her parents, reassuring them that she would be “okay.” She arose each morning and worked hard to remain connected with her parents, family, and friends. I also try to remember, even in the face of their strength, that these children are scared. As I have discussed with many families, fear and bravery can, and often do co-exist. For me, bravery is moving forward even in the face of fear.

To Tell or Not to Tell

A glaring ethical question is whether a child should be told they are terminally ill and that they will die. In my experience, many medical providers and members of the psychosocial team believe a child should be informed of the severity of the diagnosis; whereas parents often do not wish for their child to know. Many parents believe children will “give up” if they are aware of the prognosis. To the one, children often know something is very different or not right. They may be confused and desire open communication to understand what is happening within their own bodies. It is my job to provide caregivers with this information and connect them to the Child Life department if they would like guidance regarding how to tell their child. It is not my job, however, to advise them on what to do or impose my own beliefs. The decision is ultimately up to the parents.

The Dying Child’s Family

The families with whom I’ve worked represent a wide range of cultures, faiths, religions, abilities, and beliefs. It has been imperative for me to work with them through a very focused lens of acceptance and understanding of end-of-life issues so that I can be as useful as possible. When learning about a family’s culture, it has been important to know and appreciate the family’s beliefs about the afterlife as this has guided me when discussing their child. Faith can be an important coping skill and protective factor when a family receives news of a terminal diagnosis for their child. However, challenges may arise because of a family’s faith. I have met with Christian caregivers who struggle with the balance of faith and science. Many worry that preparing for end-of-life care, such as transitioning to hospice, considering a DNR, or planning the funeral indicates they are not “good Christians.” Connecting families to spiritual care has been crucial when the family’s faith is important to them.

Families are often faced with challenging decisions regarding end-of-life care. Many parents process these decisions with the child’s therapist. Some parents worry that focusing on the child’s quality of life and reducing seemingly futile treatments will be perceived as “giving up.” I have often worked with caregivers who struggle with the continuation of treatments that are painful, and sometimes even agonizing, for their child. While they want what is best for their child, the decision to extend that child’s life can be tortuous.

Complex and anticipatory grief can make the adjustment to a terminal diagnosis that much more difficult. It is challenging for caregivers to be fully present while still grieving the impending loss of their child. In addition, siblings are often overlooked as a necessity for the dying child’s care. I recall the family of a dying child with whom I facilitated sibling play therapy. My goals during sessions were to connect with each child and help them connect to each other. During those sessions, the child with the terminal illness often felt ill and lethargic. The sibling first requested that the patient play with her in many ways. However, as sessions progressed, the sibling learned to allow her sister to lead. For example, instead of two chefs working at a restaurant, the sibling was the chef who served the tired patron a meal. The ability for families and siblings to find strength to cope always amazes me.

Hope vs. Denial

It is not uncommon for me to receive proclamations from the child’s medical teams that the family is in denial about their child’s diagnosis. I will never forget sitting down with a particular mother to discuss her child and family. She said, “I know what the team thinks. They think I don’t understand what is happening. I understand. I am just choosing to have hope. Hope in a higher power. I know my child’s doctors do not have the last say. I have hope that God will heal my child.” Hope is not denial. Hope is an adaptive and positive coping skill that bolsters a child and family during outstanding hardship.

The Challenges of Working with Dying Children

I was fortunate to be surrounded by deeply empathetic people during my internship, when I first experienced the death of a child patient. Since that time, I have met many medical providers who have been able to build an emotional tolerance for this kind of work out of necessity to care for their patients. I have always been thankful for their skill at addressing the physical and medical needs of these children and their families.

As a therapist, however, my role is to attend to the emotional needs of the family — their strengths and fears along with, of course, their presenting concerns. I have learned the importance of allowing space for all feelings, including my own, when a child’s death is imminent or has occurred. I used to believe I was not able to grieve the loss of a patient. My grief meant nothing compared to the limitless grief of the family, friends, community, and bedside staff. However, I quickly and poignantly came to see the disingenuousness of this belief. I have learned that the only way I can be fully present for the child and their family is by remaining firmly anchored in my own humanity and vulnerability.

I have certainly heard words like compassion fatigue, secondary trauma, contagious emotions, and empathy trauma bandied about, and how any of these experiences can lead to burnout. One extreme challenge I’ve experienced when meeting with a terminally ill child and/or their parents has been the pressure of meeting with a healthier patient immediately afterward. I will never forget receiving news a patient with whom I had worked for years died two minutes before a session with another patient. I still question whether I was able to offer unconditionally positive regard to that second patient as I struggled under the weight of what had happened moments before. Shifting those emotional gears was a challenge.

Over this and related experiences, I have had to learn ways of grieving to avoid burnout. Showing my own humanity and vulnerability within the boundaries of safe relationships and work friendships has made me a better therapist and afforded me an outlet for my own emotions. I remember working with a chronically ill child for over a year who received a terminal diagnosis. As her illness progressed, I transitioned to working with her parents. I learned to never schedule a session with another family or patient directly following these interventions. After these emotionally dense and intense sessions, I would schedule five minutes to cry. I would shut my office door and have a few minutes to allow myself to experience these heavy feelings and an emotional release. I have learned that by allowing myself to grieve, experience, and understand my own humanity, I have become a more empathic person. This has, in turn, allowed me to continue to work with this population and alongside grieving families.

Guilt and Perspective

There are several challenges and, not surprisingly for me, blessings when working with this population. One glaring emotion I often experience is guilt. When leaving the hospital for a vacation or holiday, I must inform the families of newly admitted patients that I will be gone for a few days. Many families say, “Have fun!” or “Merry Christmas!” The typical “you too” does not suffice in this scenario. The extreme guilt I felt as a young therapist was overwhelming. Then, with two healthy pregnancies and subsequent maternity leaves, and now, with two healthy children, I am often surprised by waves of guilt. Over the years, these waves have decreased in size and duration. I know I have a role to fill to support these patients and families, which will be impossible if I continue to focus on the guilt I feel.

On the other hand, I feel deeply grateful to work with these patients and families. Their strength and steadfastness are astounding. In addition, this job fills me with immense amounts of perspective. I recall a mother saying to me, “I don’t know how you do this — choose to come to work with these sick kids every day.” I replied, “I don’t know how you do this — show up for your family every day with vulnerability, strength, and support.”? Small arguments at home or my childrens’ typical tantrums seem so manageable when compared to the hardships families I work with endure. This often leads me back to guilt. It has taken me years to focus on the perspective and honor I feel instead of allowing guilt to overcome me. I realize this helps me be a better therapist for the children and families with whom I work.

Countertransference

Another challenge I’ve encountered when working with this population is countertransference. Loss prompts memories of past losses, with each new one potentially amplifying the pain of those that have come before. This has been extremely challenging for me when working with dying children, especially when I think of my own children. I recall working with a family whose child was nearing the end of her life. The parents and family wanted to make new memories by visiting Disney World, Six Flags, Disney on Ice, and birthday parties. I found myself planning with the parents during parent consultations ways to motivate their child to want to attend these events.

The child wanted none of these outings, instead choosing to remain home and stay close to her parents and siblings. In looking back on that episode, embarrassingly, I wondered if the child was exhibiting depressive symptoms. I naively believed that it would be to everyone’s benefit if she did those things with her family. During a subsequent parent consultation, I suddenly realized I was pushing my own agenda. I mentioned this to parents and that this was not what their dying child wanted. In that moment, I realized the potential power and influence of countertransference when working with dying children and their families. Therapy and supervision are key in instances such as that one.

Boundaries and Self-Care

I’ve always valued the importance and recognized the challenges of maintaining boundaries when working with this population. Our mission at Children’s Health is “making life better for children,” and I genuinely strive for this every day. However, I have encountered specific ethical dilemmas necessitating clear boundary setting. These have included coming in on a weekend or evening when a child is not doing well or nearing the end of their life, wanting to buy gifts or necessities for families who are struggling, attending funerals, crying in front of families, or sharing information with others outside of work. While buying gifts and sharing information outside of work lie within strict ethical parameters, attending funerals, coming to work when not scheduled, and crying with families lie more in the ethics shadows. Attending patient funerals is a particularly challenging ethical domain. Many providers simply do not attend funerals, while just as many others do. It has been important for me to determine if harm might befall the family if I attended their child’s funeral.

Showing emotions to family members is also a sticky issue. Many therapists have been told “don’t cry in front of families!” I have openly teared up with several families.

Therapist as Advocate

Over the years, I have discovered the importance of advocacy. If the patient expresses certain wishes, such as knowing details of their medical/health status or having friends nearby, I share these with the family and medical team when appropriate and after discussing this with the child. My role as advocate has also included helping the caregivers understand their child’s desires. As with the example of the client and her family mentioned above, I helped parents see their child’s perspective and, in turn, meet her needs during the end of her life. We were able to focus on the goal of togetherness and provide her with feelings of safety and connection the way she wanted. This was a difficult shift to focus not only on what the family wants but want the child desired. Legacy building through memory making is yet another form of advocacy, which can be built into the (play) therapy.

Postscript

Working with children who are dying has been emotionally strenuous yet deeply gratifying work for me. Staying present in my feelings while being fully present for the child and family has been particularly challenging. Utilizing rituals to remember and honor a child has been a helpful tool. Our hospital hosts a memorial service each year for employees to grieve patients who have died. Others plant a seed or add a bead to a bracelet for each child who passes. I choose to keep mementos given to me by patients and consider how each child impacted my life and changed me as a clinician. Moving forward is one of the hardest challenges for me as both a clinician and person. I have learned the absolute importance of surrounding myself with others who understand my experiences working with this population.

A Small Hope: Co-creating a Narrative of Grief – Part II

Posted on by Psychotherapy.net Team

Bringing Memories to Life

“I want to remember the precious times we had together in those last weeks but already they are fading and I am forgetting,” Claudia said with resignation. It was now a month after Tom had died and the conversation had just shifted from the challenges of getting through each day.

“Is gathering up memories of the precious times something that you might like to do in this conversation?” I checked.

“Yes, those last four weeks,” Claudia said through tears. “From when we were told in the hospital Tom was dying and decided to come home. In the hospital, I asked one of the nurses, ‘How long does he have?’ and she replied, ‘Maybe a week.’ As you know, however, he lived for four weeks… Tom didn’t ask how long he had to live but I wanted to know.”

“Would it be OK to ask… what was important to you that you asked for the nurse’s guess as to how long he had to live?” I added the word “guess” as no one ever definitely knows and that uncertainty is often unfamiliar to people.

Claudia’s voice broke, “I just wanted to know how long I had with him. I think I was just trying to get a clear view of the future.”

“Did you have any hopes for what a clear view might provide you and Tom?”

“I was thinking this is valuable time. It clarified that we wanted him to come home,” Claudia affirmed.

“In this decision to go home, what kind of valuable time were you and Tom hoping for?” (22)

“It meant he could see the changes in the girls. They are so young they change rapidly, especially Libby who develops in small ways every week. I knew that visiting in hospital is just not the same. Everything is different, distorted and not in their natural state,” she explained. Visions of hospital rooms with their lack of privacy and noisy nights floated through my mind. I tried to imagine visiting such an unfamiliar environment frequently with a baby and young child.

“What does it say about Tom’s relationship with Imogen and Libby that he prioritised noticing small changes in them even when he was dying?”

Claudia smiled. “He treasured and valued every little thing about them. He’s been quite good at appreciating small things for a very long time,” she answered, speaking of Tom in the present.

“Could you tell me a story of Tom appreciating Libby and the small changes in her perhaps? And then Imogen and what he enjoyed about her?” I was aware that I was collecting memories, not only for Claudia, but for her girls as well. Together we would build a document of memories she could keep. (23)

After Claudia had shared some stories, I became aware we had diverged from what she had originally said she wanted to discuss. “I notice we have moved away from speaking about the four weeks you said you wanted to focus on. Would you like to continue on this track or would you like to spend some time talking about the last weeks of Tom’s life? What would you like to do at this point?” (24)

“The last four weeks. It’s fading so fast. I’ve even forgotten subtleties that were routine to me, like giving him his morning wash, and that was something I treasured doing,” Claudia stated. I was glad I had checked. I didn’t want the conversation to end without it having been what she wished.

“Would asking you about treasuring his wash be a good place to begin?” Claudia nodded and sat back on the sofa. “Would you like to walk me through how you went about giving him his wash?”

Claudia began to recall previously unspoken details of the daily routine with me, inquiring into their meaning. Towards the end of collecting as many details as I could I asked, “When you were washing him, was there a particular way you touched him?”

“Yes. When he was moving less, I would give him a little massage, or I’d move his legs around. I could tell he liked it. After his massage, we’d put frankincense on his palms and the soles of his feet and he’d go, ‘Oh, Frank!’ and wiggle his fingers making a joke!” Claudia laughed.

“Did he keep his sense of humour even…”

Claudia’s words tumbled out in her enthusiasm. “Always, right up until that last night. A carer came for the night to help. When she saw Tom she said, ‘Still unresponsive,’ so he wriggled his eyebrows at me. It was our little joke! Frequently through the day I would wash his face and I’d say, ‘Would you like a cool flannel or a hot flannel to wash your face?”

“When you were giving him that choice… what was your intention?”

“He had very little control over his life. He deserved respect,” Claudia explained.

“What did you want him to know by giving him that choice and respect…and control?” In tender tones Claudia answered, “He was still just as valuable. Even though he couldn’t move or see much, he was still my Tom, he was still the same to me.” Moved by her love and respect I responded, “May I ask, what would have Tom noticed that would have told him it was you washing him rather than someone else and that he was still the same to you?”

“He would have felt my love in the way I washed him. I was given a choice of washing him or having a carer do it. There was no way I was going to let someone else do such a personal, private thing for him,” Claudia stated, flicking her hair behind her. (25)

“What were you valuing, do you think, when you prioritised this loving moment with him and protecting his privacy even as you were parenting two small children and doing everything else that was required of you?” I reflected on the exhaustion that comes with parenting very young children. Such a choice was not right for everyone. Claudia lowered her voice, leaning towards me as she spoke, “I wanted to protect his dignity and have that intimate time with him.”

“May I ask, what did you experience as meaningful in the relationship when you managed to get that time together and share love and intimacy?”

“It felt like this was why we had him at home. It meant I was the one changing his nappy… And I did feel proud and honoured that I could do that for him. It’s not something a wife normally does for a partner, but I guess it was a new intimate thing we could do where there were precious few of those new things.”

Struck by her ability to generate such a deeply loving experience in something so far from what couples ordinarily do together, I responded, “What does it say about you that you felt proud and honoured to do that care for Tom … that you could find intimacy in changing his nappy for him rather than seeing it as a chore?” (26)

Thoughtfully Claudia answered, “I think I understood what he needed. I understood the best way to do that for him.”

“What was it that you understood about Tom in those last weeks that was important to you both?” Claudia pondered. “We were able to slow things down a bit.”

“How did you do this slowing?” I wondered. Claudia spoke slowly as she considered, “Just focusing on little things. I’d go and get him milkshakes and I’d say, ‘So what flavour milkshake do you want today and where do you want me to get it from?’ It was treasuring very small decisions. I got great pleasure from him eating or drinking something and he got to make decisions and think about that milkshake and what he wanted. Life zoomed in and focused on those nice moments.”

“What did you know, Claudia, perhaps about living with such a serious illness, or about Tom, that had you recognising that making a decision about the flavour of a milkshake was worth treasuring?” I couldn’t help but notice her extraordinary sensitivity to Tom’s experience and I hoped that my questions might draw Claudia’s attention to her wise and gentle care.    

Claudia laughed. “Tom knew his own mind. I would never make that decision for him, particularly around food,” she said, reminding me that Tom was a skillful and passionate cook. “Choices in his life were dwindling. He didn’t have a lot of control.” She dropped her head for a moment, reflecting. Tears glistened in Claudia’s eyes as another thought occurred to her. “Tom knew how much it would hurt me when he went.” The tears gathered and a sob escaped but she went on speaking. “He didn’t want to go but most of all he was worried about me…” Claudia started to cry unreservedly. Her face reddened as more of her body joined the experience of grief. Rather than a break in the conversation, it was as if these tears spoke what words couldn’t as we reflected on Tom’s love for her even as he was dying. (27)

Quietly, I eventually asked her, “What were these worries Tom held for you?”

Claudia was barely able to speak yet she persevered, wanting to express what the emotion meant in words. “He just knew how hard it was going to be… he cared enormously about me being alone.”

We were quiet for a time as Claudia continued to weep.

“He was sad for himself and the girls, but he was really sad for me,” she eventually explained.

I thought about Tom worrying about Claudia even as he lay in bed so sick. “What does Tom’s compassion mean to you? …. that he couldn’t bear to think of you being on your own…that he cared so much about what might happen to you…?”

“It was a demonstration of how much he loved me,” Claudia choked out. “I usually cried,” she explained, smiling at herself through the tears. “I felt guilty every time I cried and got comfort from him but he’s the person I turned to when things were wrong. He said comforting me was something he could do.” She stared at me with her eyes wide waiting for my response.

“Do you have a sense of what it was to Tom that you chose him to seek support from?”

Claudia exhaled, “I think he was thinking about the time when he wouldn’t be able to support me, and he was doing what he could.”

“How would Tom have understood the way you saw him when you sought comfort from him?”

Claudia considered, speaking what seemed like newly formed thoughts. “He was my best friend, and we were there for each other. It didn’t change when he was sick. I think it was hard but very important for him. It allowed him to show support for me, I guess. He saw it as something he could do for me when he could do so little, when I was doing so much for him. I didn’t feel the need to protect him.”

“What do you know about Tom that you knew you didn’t need to protect him?”

“He was strong. He said he wasn’t scared of dying.” Claudia let out a big, long sigh collapsing in on herself in seeming resignation.

“Would it be OK to ask you one more question about the way you shared your grief together?” Claudia nodded.

“What did you know about the relationship that told you that talking would be best for it?” I wanted to bring forward Claudia’s knowledge of their particular relationship because I knew that this kind of talking wasn’t best for everyone.

“It’s what we’ve always done,” she readily replied.

Our time was coming to an end. After I summarised what we had been discussing, I checked with Claudia, “How has our conversation gone today? Has the experience of reflecting on the last four weeks connected you with anything that is helpful or important to you?” (28)

“I think it’s highlighted how we did it according to our values. That’s incredibly important to me. It eases the pain just a little to know that,” Claudia responded.

“How might you carry that knowledge do you think? That you did it according to your values?”

“I guess by carrying on doing that with the girls,” she replied thoughtfully.

“Perhaps we might come back to that next time if it interests you…. but could I ask you something else? As you reflect on the last weeks of Tom’s life, was there anything that happened that moved you a little closer to being the person you want to be?”

With some energy and perhaps surprise in her voice, Claudia answered, “Now that I talk about it, lots of things. Doing it our way and speaking up to make that happen. The way I was able to show him how much I love him through what I did. It was so hard, but I was there to support him die the way he wanted to do it. I hadn’t really thought about it before.”

Turning Towards Pain

Claudia and I met each week until I was scheduled to be away on leave. (29) Before I left, we planned who Claudia might turn to in difficult times for support and what she might do. Not long after I returned, we were once again sitting in her home. After greeting each other warmly, Claudia brought her cup of tea into the living room, and we sat down.

“We had a fortnight gap this time, how did that go?” I inquired.

Claudia let a rush of air out. “My sister said, ‘Have you seen your counsellor this week?’ And I said, ‘No we couldn’t make it. Sasha was away.” And she said, “I always know when you haven’t seen her.” I thought I’d be fine, but I’ve had a really awful fortnight.”

“What is it that you do differently in the week when you’ve had a chance to talk?” I inquired, but I was off track. (30)

“I was thinking about what it was that changed. You know how I was feeling numb? Well, I’m raw now. I can’t seem to stop crying…” Claudia’s voice broke, and she could no longer speak. The pain gathered and eventually she sobbed, “It’s all the time… just crying all the time. I’m right back to raw and where is he? And how can this be happening?”

I listened, feeling the echoes of her pain. (31)

Claudia bowed her head and tightly wound her arms around her body. It was as if she was holding herself together. “I’m right back there… and that lovely numbness… that I was feeling has just gone,” she stuttered through the sobs. “It’s horrible… just that relentlessness… And I went to see a clairvoyant and she was just ghastly. I think that tipped me over the edge a bit. I realised I had a lot of hope riding on it.” She looked up at me with wet eyes.

My voice was soft. “May I ask …what were your hopes in seeing the clairvoyant?” I wasn’t surprised Claudia had visited a clairvoyant. Many people search for connection with someone who has died through spiritual understandings they hold.

“I didn’t realise until afterwards that I was hoping that it would be for real. I would have got a feeling of peace knowing that he is somewhere and can be with us. I didn’t get that at all. I just felt duped. I was already feeling quite low but hopeful, I realised afterwards.”

“Would it be okay if I ask a bit more about these hopes?” Claudia nodded as she blew her nose. “Would you mind speaking a little about what you were hoping for?”

“That he’s somewhere…And he’s not just puff gone. That he is somewhere and sometimes, somehow, he is around…that’s what I really want to believe…I need a message to say, ‘I’m OK, I can never see you again but I’m OK…and I know you are OK.” It is one of the hardest things I think, the not knowing.” I reflected on how much not knowing there could be surrounding illness and death.

Claudia’s anguish layered her words as she again tightly encased herself with her arms. “I’m stuck in this awful hole…I don’t know how to go on. I just don’t know how to hold on. I feel like I’m clinging on to a ledge. I have to but I don’t know how to keep going and going and going…” (32) I tried to imagine the relentlessness of continuing on. Her words created a vivid picture of the ledge. I made sounds of empathy as I listened, a witness to her pain and sorrow. “How important was knowing where Tom is in this holding on?” (33)

“Very important,” she cried.

“Yeah… yeah…,” I replied, almost crooning in my compassion for her. “What would it have given you in the holding on?”

Claudia cried, hiccupping as she answered, “Some sort of peace that he’s OK…that he’s with us…and that I might see him again…It’s so hard. It’s not like breaking up with someone and you know they’re OK. Somewhere they’re alive…”

“Completely different,” I affirmed.

Claudia voice was husky, “I just can’t get my head around it. It’s the absolute worst that could happen to me…I’m really struggling…” Her tears took over and we paused, neither of us hurrying or censoring her expressions of grief. “…and I’m sure having less help this week is making a difference. The family have been away. I’ve actually been feeling OK with my parenting.”

My ears pricked up. “Yeah…?” We had talked a lot about the impact of grief on her parenting as Imogen and Libby were Claudia’s top priority. However, I didn’t want to move Claudia away from her talk of the struggle sooner than she wanted so I resisted asking a question and kept my query very small.

“We’ve found a routine and I’m not shouting. I’m not feeling desperate about those times,” Claudia told me with an energy that conveyed to me she might have a possible interest in speaking further about her parenting.

“Is this something you would be interested in talking about?” When Claudia indicated, she would like to follow this direction I continued, “What’s allowed you to be OK with your parenting especially when there is so much struggle?”

“I think routine has helped. It’s soothing. And I’ve got really, really good at filling in the time now. Those girls are bloody tired by the end of the day because I’ve worn them out. Like last Sunday, we went to the markets and met a friend for breakfast, then we went to a school children’s art exhibition which was a couple of hours and then we went out west to see another friend. We got home at 6 P.M.” Claudia sighed, sounding exhausted even by the thought of what she had just relayed to me.

While being so busy was not Claudia’s preferred way of parenting prior to Tom’s death, this was a survival strategy she was using. “I’m really tired but that’s how I cope. Just fill in every hour possible. It’s not because I don’t want to think because I like to think about him. It’s just the only way I can cope with the kids. It’s helped.”

I returned to the aspect of parenting Claudia was feeling good about and, remembering Tom’s belief in Claudia’s parenting, decided to bring him into the conversation. (34) “And what would Tom make of you doing your parenting in a way that you felt good about? Finding a routine and being more how you want to be with the girls. What would he be thinking about that?”

“He’d be saying, ‘I knew you could. I’m proud of you.’”

We both smiled. With a lighter voice I asked, “What might Tom have known about you that allowed him to know you could do it?”

“That I put them first…,” she replied as tears trickled down her face. “…That I’ll always look after them…” Intensity and what sounded like determination entered her tones of sadness “…and I’ll hold onto that ledge for them…hard as it is…”

“Is Tom under your feet helping to hold you up a bit too?” I asked, wanting to add his support if it was there.

“I don’t know…I hope so…He would if he could…if he can he will…I forgot about the rawness. It’s so horrible.” I nodded.

“It’s only three months since he died,” Claudia told me with emphasis.

“No time at all and yet perhaps a long time too. How would you describe it?” I reflected, slowly waiting for what else she might be about to share. Claudia replied, crying as if her heart would break, “No time and yet forever. It’s part of why I hurt so much. How’s three years going to feel since I saw him? And thirty years? I feel like I’m only living for my girls…to give them a good life…and not enjoying any of it myself. The hole just keeps getting bigger.”

“Is it hard to imagine that the hole might stop expanding and steady a bit? That it might be less gaping one day?” I said, offering a future possibility.

“I can’t…”

I nodded.

“Is your wanting to parent the girls so they have good lives…” I began to ask as I looked to connect Claudia to parts of her life that might help support her keep holding on. Her virtuous desire to care for her children in spite of the pain of living stood out to me.

Claudia interrupted me, staunch as always in her love of her girls. “I want them to have good happy lives, absolutely.”

“How would you describe a good, happy life for your girls?” I invited, seeking to connect her with a future for them that might be possible to envisage.

“Doing things that stimulate them and interest them with me…positive times with me and …being strong in themselves…able to weather some storms… and get enjoyment out of things…and finding passions. I want that for them but not for myself. I don’t believe in having that for myself. I can’t see it again. It feels like it’s all gone…”

We paused together for a time and Claudia wept. (35) “I feel like something in my soul has gone… an intrinsic part of me.” Her description touched me as I murmured a quiet acknowledgment. After a pause I added, “May I ask what part of your soul would that be?”

“All of my adult self…is connected to Tom. Everything I do and think is influenced by him and our relationship. All my memories of being an adult…are with him. The way I view things is because of him. It is lovely and I’m very glad. But it’s such a wrench.”

“Was your soul entwined with his?” I wondered. Claudia nodded. “And was his entwined with yours?”

She nodded vehemently. “I don’t know where he is! It’s just so hard.” Claudia’s body shook and she put her head in her hands. It was my turn to nod as we both acknowledged the hardness. It was so hard (36). As we sat there for a time, I considered Claudia’s disappointment with the clairvoyant and how it had made the pain worse.

“I wonder if we can think about that a little bit…if we could figure something out, away from the experience you had with that particular clairvoyant…”

Claudia laughed heartily through her tears, “…Who believes in herself even if she is a complete fraud. I can’t accept that he’s not somewhere or not existing.”

“What are your understandings of possible places or ways that Tom could be existing?” I asked. People I meet with often have very different ways of understanding death even if they identify as belonging to a well-known faith tradition. They also often re-evaluate beliefs they’ve held for a lifetime in moments of illness and loss. I can never assume I know what someone believes.

“That he is part of the energy, the finite energy of the universe… that’s scientific,” Claudia explained to me. I listened attentively as she continued, “Or he could be in a different realm or a different world which is potentially scientific as well.”

“… like a parallel universe?” I inquired, noting her tears had stopped. “Yes. Or in some heavenly place, someplace souls go where there’s peace. I’m sure there are other frontiers but those are the ones I think of…I want him to be conscious somewhere and aware of us. If I think about another world or a heavenly place, he would be conscious of us.” She stared at the sky out the window. “What would a sense of Tom’s presence give you?” Claudia returned her gaze to me. “I would know he’s with us, present in our lives”.

“Do you think you have any impact on that sense of presence or how that presence could be felt?” I inquired. Claudia looked at me quizzically. “Clairvoyant people say we do, don’t they? If we can be open to it or not open to it.”

“I don’t know…Can you influence the way you feel Tom?” I wondered curious.

“I don’t know. I’d like to,” she affirmed. I cast my mind back to a previous conversation. “When we met last time, you mentioned you had felt him.”

Claudia confirmed, “I felt him really strongly.”

“May I ask what you were doing at the time?”

“I wasn’t doing anything out of the ordinary. I was probably having a laugh which was unusual as it was maybe two or three weeks after he died. The girls were playing around so a bit of a lighter moment and I was laughing with Libby playing peek-a-boo.”

“Would it be possible for you to have faith in yourself even if you can’t have faith in the clairvoyant you met?” (37)

“I’ve tried very hard to separate those two. It’s where I came to on Saturday. I didn’t have a very good experience with her but that doesn’t mean it’s all out. I didn’t pin my hopes on just one person. I booked two clairvoyants. I’ve booked the other one for August and I’ve heard she is authentic and very good. I’ll keep that booking. I’m not giving up on it altogether.” Claudia sounded calm.

Laughing, she added, “I can spare another $120! If she’s good!” I laughed in response before inquiring, “What about your own experience of feeling Tom was with you?”

“It was very strong. But it’s very easy to doubt myself. That’s what’s hard I think,” Claudia explained. “I had another experience where I was looking for a necklace and I felt Tom very strongly. I was looking and looking and then I found it one day and I had a very strong feeling that Tom had helped me find it. I know that sounds strange. But it was such a strong feeling that I said, ‘Thank you Tom! That’s for Imogen.’ It just came out. I need more! Greedy, greedy!”

“When you feel Tom with you, what does that feel like?” I asked curiously.

“Normal! The old normal,” she explained with energy.

“How do you know he’s there? When he helped you find the necklace, what happened that told you that?” I wondered, keen to learn more.

“It just felt like everything’s OK again.”

“Ah.” I sat back in my chair.

“And I don’t have to have this new normal. Both times I just felt lighter and happier. This nightmare is over or maybe not what it seems.”

“If you met with another clairvoyant whom you did or didn’t find authentic, could anyone take away those experiences that you’ve had?”

“No. They’re authentic to me,” Claudia stated.

“You said you want more of them…”

In a sing-song voice Claudia interrupted, “I do!” She was grinning.

I returned her grin. “On demand!” I echoed in the same sing-song tones. Claudia laughed. (38)

“They felt authentic to me and I’m a big believer in going with your gut instinct. I’m quite in tune with those things. They felt real.” Claudia sat back looking steady.

"I drove back to the hospice some time later reflecting on the many understandings people hold about what happens to a person after they die." (39)

New Understandings

Claudia returned to work and, as the routine settled and time passed, the pain of Tom’s death intensified. As Claudia explained to me, “It is now not just days or weeks since I last saw Tom, but six months. The longer it is since I last saw my Tom, the more I miss him.” I wasn’t surprised as many other people have described a similar experience to me.

It was a rainy day. Claudia had finished breastfeeding Libby and had returned from laying her down to sleep. She walked up the stairs with a heavy tread and sat down. “It feels like we are now in a new normal. The new normal makes me so sad. I don’t want a new normal. I want the old normal. I’m feeling guilty; sad and guilty.”

I made a few acknowledging sounds as she talked, “It is so tough. Who would want this normal when comparing it to having a partner they loved alive?” I paused a moment as I looked at Claudia’s drawn face. “Would it be helpful to share with me some more about this sadness and guilt?” I continued, wondering if it might be useful to get to know th

A Small Hope: Co-creating a Narrative of Grief – Part I *

Posted on by Psychotherapy.net Team

This story is dedicated by “Claudia” to “Tom” in memory of his loving ways.

I would like to thank “Claudia” for her generosity in joining me in adventuring into new territories. There would be no story without her.

I would like to thank Aileen Cheshire, Catherine Cook, William Cooke, and Peggy Sax for their insights and helpful suggestions, and David Epston for his editorial support.

Introduction

Grief can be excruciating. The pain of loss may be overwhelming at times and its duration and intensity can be a shock to many. However, it is not always so. Relationships are shaped differently and there are many possible stories that can be told of such an experience.

The following illustration of Narrative Therapy (2) was originally written as a therapeutic document for a woman who had been forced to contend with the death of her partner while she parented their young children. “Claudia” (3), as she chose to call herself for this article, was experiencing significant loss. At the same time, she was struggling to find compassion for herself. I hoped that if Claudia viewed herself in a story of our conversations, the narrative might lend strength to the new understandings we were co-constructing. Claudia was enthusiastic about the idea of co-creating such a document and after going through a careful consent process, we agreed that we would record our conversations and write a story from the transcriptions.

Our purposes for writing a story evolved. As time passed, Claudia wanted to share her knowledge of grieving with others. When we discussed the possibility of sharing the story with a wider audience, I hoped the story might show the unfolding of therapy, and in particular, narrative practices that companion a person (4) and invite them to explore new meanings of their experience.

I have therefore added footnotes to the story [Ed. Note: Please see the original article for these notes]. The footnotes explain more of what I was thinking as Claudia and I spoke, and why I asked particular questions. They also include some thoughts on narrative practice with people who are suffering as they live with loss. You may choose to read the story and the footnotes together or separately.

For those of you who are interested in experimenting with writing a story, in contrast to other forms of therapeutic documents, please see an earlier paper I have written on writing narrative therapeutic letters. I have described the process of story writing and some of the possible benefits within that paper.   

A Cupful of Time Folded in with Love

“It’s urgent,” the community nurse told me solemnly. “Yesterday, Tom was told he was bleeding internally by the doctor at the hospital. When he heard nothing could be done to stop it, he asked his wife Claudia to take him home. Understandably, they are reeling; this has all happened so fast. We’ve offered counselling support and Claudia has agreed. She’s asked if you could ring after 10 o’clock so you don’t wake the baby from her morning nap.”

I walked back down the hallway towards my office reflecting on what it might be like to receive such news. Just after 10 o’clock I telephoned. Claudia answered. “Hello, it’s Sasha speaking. I’m one of the counsellors from the hospice. I understand you might be interested in meeting up with me. Have I got that right?” Quite often people have another understanding from a referrer, so I was tentative to give Claudia space to say what she wanted. (5)

“Yes, that would be great,” she replied.

“How would tomorrow suit you?” I asked, thinking of the urgency of the situation.

“Look, it’s very kind of you. I know it’s Friday tomorrow but it’s going to have to be next week. I’m sorry. I promised our five-year-old, Imogen, I would bake a cake with her tomorrow. It’s her birthday and I promised,” Claudia apologised in a rush.

“Are you the kind of mother who honours promises?” I asked with a smile in my voice. (6)

I heard Claudia let out a long breath. “She’s been looking forward to it all week.”  

Warmly, we now began to make a time to meet up. In the back of my mind, I was thinking about Claudia prioritising a promise to her daughter when she was possibly having the worst time of her life. Images of baking with my own young daughter many years ago floated through my mind. I wondered, “What might Imogen remember of this time when her Daddy was dying and when promises were kept to her five-year-old self? What might she say about the way she was cared for by her Mum at such a terrible time?” I also appreciated Claudia’s ability to put me off and say what she wanted. I was well aware it wasn’t easy to delay health professionals, especially to honour the wishes of a child.

I looked forward to meeting Claudia and Tom, and learning more about them.

A Surprising Renewal

I parked the hospice car down the road from the house, worried that the signage on it might communicate to the neighbours something Claudia and Tom wished to keep private. It wasn’t the anonymous unadorned car I usually drove. A young woman opened the front door of Tom and Claudia’s home and, as I looked at her animated face, I realised I knew her.

“Do you remember me?” she asked, wide-eyed, as if she could hardly believe who she was seeing.

“Yes!” I replied, flooded with memories. It was nearly 20years since Claudia and I had last seen each other. Her father had been dying at the time and Claudia was caring for him. I was working as a counsellor in a university counselling service and we had met together across the last 18 months of her father’s life. I easily recalled Claudia’s devotion to his care at a time when her contemporaries were more focused on parties and the opportunities study could provide them.

I walked further into a room that had ushered in many unfamiliar health professionals over the prior week, full of gratitude for this chance reunion and hopeful that it might make some difference for Claudia and Tom.

Claudia invited me to come into a bedroom for some privacy and together we sat on the bed. She was dressed comfortably in shorts and a T-shirt with her long, fair hair tied back off her face. Clothes that would be practical for parenting work and caring for Tom, I thought. There were dark circles under Claudia’s red, lidded eyes, easily visible because of her fair skin, and her face had a hollowed appearance in spite of her warm smile.

Claudia explained she had been up all night with their baby who was sick, and on top of that she herself had toothache. “Somehow, I am going to have to fit in an appointment with a dentist, but I don’t know how I’m going to find the time,” she exclaimed, throwing up her hands in dismay. After talking further, Claudia led me into a small, darkened room to meet Tom. He lay on a single bed unmoving and silent. Claudia touched Tom gently and he turned his head towards us. “This is Sasha,” she said. Tom looked up at me and we exchanged a greeting.

I sat down on a chair facing Tom while Claudia ignored the other chair which was placed near his pillow. Instead, she sat on the floor with her arm resting on Tom’s shoulder. Tom’s skin was a faded tan colour, suggesting to me he had once spent considerable time out of doors. In response to my greeting, he slowly shifted in the bed with jerky movements. Once he had settled, I leaned forward looking at him. “Tom, it’s lovely to meet you.”

He was a tall man I guessed, with fair hair and a kind face, softly lined around his eyes and mouth. “I’m aware talking can take a lot of precious energy. Is this an OK time for the three of us to talk together, or would you rather we spoke another time? I want to do whatever best suits you and Claudia. I can easily fit in either way,” I offered, smiling warmly at him.

“I’d like to talk for a bit. I won’t last long. We’ve been looking forward to it,” he responded, glancing at Claudia.

“When you find yourself beginning to tire, will you notice and be able to let me know?” I inquired, thinking I would need to be alert for any signs I was extending the conversation longer than he could comfortably manage.

“Claudia will know. She’ll tell us both.” Claudia nodded, her face soft and relaxed.

“Thank you.” Sitting back in my chair, I made myself comfortable while I looked from Claudia to Tom. “Illnesses have a way of taking over people’s lives and yet people are so much more than the illness they are living with. Would it be OK if I asked you a bit about yourselves and your lives before all this happened?” (7)

“Gosh it’s so nice to be asked that,” Claudia exclaimed. “It makes me feel like I matter, we matter. Tom’s a teacher and you probably noticed the garden. He grows plants from seed and often ones that are good to cook with.”

In a faltering voice Tom contributed, “Yeah… I’ve taught younger age groups and I love to garden and cook.”

“Food is very important in this house!” Claudia laughed.

Tom quietly added, “In the last year I’ve worked tutoring from home … it’s been ideal with me having cancer.” I considered asking Tom about how he lived with cancer but decided to pursue getting to know them more a bit more first. Claudia continued the conversation in a lively manner sharing with me stories of her work and interests.

“Tom, if I were to know Claudia as you do, what might I come to appreciate and respect about her?” (8)

Tom looked at Claudia as he answered me. “I love Claudia very deeply. She is kind. Really kind. I saw that from the first. She is honourable and dedicated to the people and things she believes in. Her loyalty is like none other and there is nothing I wouldn’t share or confide in her. Claudia is a wonderful, loving mother. Knowing that makes it easier for me to be sick because I know I will be leaving the girls in her care.”

“Could you tell me a story that illustrates some of these attributes you love and appreciate in Claudia?” (9)

Tom spoke of the care Claudia had given her father as he was dying. “She will always have your back,” he told me.

“What difference has Claudia ‘having your back’ made to you?”

“It has given me a whole new life that I wouldn’t have had without her. It’s meant I can be myself and pursue my interests. It has meant I have had the joy of becoming a father.”

Claudia responded by clasping Tom’s hand. “I love you so much,” she whispered.

After I asked Tom a few more questions, I turned to Claudia.

“Claudia if were to get to know a little of the Tom that you love so much, what might I come to respect and appreciate about him?”

“You’d appreciate his authenticity. Tom is real. He has a wicked sense of humour too! He’s always polite but he doesn’t suffer fools.”

“Would it be OK to ask you for a story of Tom’s authenticity and his wicked sense of humour?” I grinned at Tom and his eyes twinkled in return. Claudia launched into some stories with enthusiasm. Tom lay back quietly enjoying her words.

As the conversation progressed, it turned quite naturally towards the cancer and what they had been going through. I looked over to Tom and inquired, “What do you give weight to in your days as you live with this cancer?” (10)

“My family, being a father, I like to be involved with the girls,” Tom confided. A small smile emerged on his face. Tom tried to raise himself in the bed but, before Claudia could help him, slipped back down and, seeming to give up on a sitting position, rested his head on the pillow. When he looked comfortable again, I asked, “Could you help me to understand a little of what it means to you to be a father?”

“I love it! I wasn’t truly happy until I was a Dad. I took one look at Imogen, our eldest, and I fell in love.”

I was aware Tom’s words might carry meaning that could be passed on and retold down the years, perhaps providing solace for his girls.

“Could I ask you about this experience of falling in love?”

Contentment seemed to flow over his face for a moment, relaxing the lines as he contemplated my question. “Sure. I didn’t know what happiness was till Imogen came along. She made my life complete.”

“What did Imogen’s birth give you that has you experiencing this sense of completion and happiness?” I responded smiling.

Tom pondered, “I think it was a proper purpose….”

Claudia joined us. “…Being parents connected us to what’s important…I think Tom’s found a role that really fits him. He’s a good father.”

Tom’s quiet voice gained strength and the corners of his eyes turned up. “…And then Libby was born and I felt overwhelmed with wonder.”

“What had you overwhelmed with wonder when Libby was born?” I asked, collecting stories again. (11)

“Libby having her very own personality and the way she could let her feelings be known,” he responded with a chuckle. Claudia joined in, “He sent me a message when I was at work that said, “Baby does not want to sleep in the bedroom today. She was very vocal on the matter!” Claudia laughed. “Tom always appreciates her strength of character and being able to understand what she’s trying to say.”

Enjoying their delight, I responded, “What is important to you both that the experience of parenting has connected you to?”

“Our values and beliefs,” Claudia told me. Tom nodded, meeting Claudia’s eyes. “What we treasure.” I was keen to ask them more about their values and beliefs, but I didn’t know how long we might have for our conversation. Tom was likely managing fatigue and so I decided to pursue another path. I would return to the detail of what they treasured at a later date.

“Would it be OK to ask how this giving weight to what you believe in and treasure shapes your experience of living with cancer?” (12)

“It’s given us good times, wonderful times in amongst the hard stuff. The girls make each day worth living for,” Tom answered.

“We spent one morning just watching Libby learn to roll,” Claudia laughed.

Our laughter was cut off by sounds of crying from the room upstairs followed by shuffling as Tom’s mother walked quickly to attend to Libby.

Claudia tilted her head as she listened for signs Libby had been soothed. Tom stilled listening as well. “How will I do it without you?” she whispered, looking back to Tom. Tears began to flow down Claudia’s face. Stifling sobs, she rested her head on Tom’s chest and stretched her arms out as if to cradle the entire length of his body.

“I’m still here now. I’m still here now,” he crooned, patting her back.

“How will I raise the girls without you?” Claudia reiterated.

“I trust you. You will do a good job,” he said, trying to placate her. Tom continued to pat Claudia’s back in the age-old rhythm of comfort. I remained quiet, touched by her pain and his attempts to console her. (13)

After a time, I asked him, “What is it that you know about Claudia that allows you to trust her?”

Tom began to describe his faith in Claudia, gently patting her back all the while he talked.

“Could you tell me a story that illustrates this trust you hold for Claudia and her parenting?”

Tom expressed his admiration for Claudia as a mother. “She always puts the girls first.” He told me stories of her kindness and her beliefs about mothering, explaining how important their shared parenting beliefs were to them. As he spoke, Claudia listened silently, intent on his every word.

“How might you like to carry these beliefs you share forward so Imogen and Libby might know something of what is important to you as a couple and as a family?” I responded.

Claudia suggested they create a family charter that recorded their values. (14) Tom was enthusiastic about such a project and together we discussed what might be included in the document.

I checked with Tom as to how his energy levels were at regular intervals. Mindful that it is hard to send someone away, when I noticed his eyelids start to droop a little, I began to bring the conversation to an end.

“How has this conversation been going? Have we talked about what you hoped we might or have I taken us off track?” I checked.

“It’s been good,” Claudia said.

“Thanks. I liked talking,” Tom said warmly.

Claudia showed me out a few minutes later.

A Small Hope

Over the following week I heard that Tom had stopped eating and was now unable to leave his bed. The nurses told me that Claudia had insisted no one speak to her about his symptoms or deteriorating condition.

At the end of the week I went to see Tom and Claudia as we had arranged.

Claudia and I sat outside in the garden at an old wooden table. Tom was inside sleeping, too sick to talk. The garden provided a quiet private place away from the activity of the household as the extended family all worked together to care for him and the girls. Tired, harrowed faces had welcomed me and in the heavy movements of the family, I thought I could feel unspoken sadness weighing down their every step.

Claudia looked up as the leaves ruffled in the moving air. “It’s been a better week.”

“When you look back on the last two weeks, do you have some ideas about what has contributed to this week being better?” I asked, incorporating her words into my question.

“I’ve stopped looking ahead,” Claudia replied. Not wanting to presume what Claudia meant, I responded, “May I ask, where do you look when you’re not looking ahead?”

“No one can know exactly what’s going to happen, can they?” Claudia replied. “Now I only think about today and I have some hope.”

“Could you help me to understand a little of what this hope (15) is to you?”

Claudia paused, bowing her head.

“It is only a small hope,” she said in a quiet voice as if confessing something. “…To be with Tom, for another day or maybe even a few days.” Claudia looked up at me with tears gleaming in her eyes.

“May I ask what difference this small hope makes to you?” I replied, moved by the humility of her hope.

“It means I’m not crying all the time. I sat by the window and told Tom what I saw outside. We spent some time talking quietly together once Imogen was at school. I made him a little something for lunch and we sat together. He told me being together like that was ‘perfect,’ and he has never said that before.”

“As you look out the window describing the view to Tom, what does this small hope do that has Tom finding your time together perfect?”

“I can enjoy the moment and he feels that. It helps me forget what is coming,” Claudia explained.

“When you spend these moments that the small hope has given you, what has been made possible that hadn’t been there in the week before?” I knew that the week before had been distressing for them both.

“Close time together. Over the past few months, we’ve been arguing because of the stress and that isn’t us,” was Claudia’s reply.

“How did you come to find closeness in sharing the view from the window and talking and bringing Tom food?”

Claudia told me with eagerness now edging into her voice, “It’s what we’ve always done together, enjoyed the simple things. We like to enjoy those things that money can’t buy.” Claudia continued telling me stories illustrating this.

“What else do you do in the day that speaks to the closeness you share as a couple, and as parents together, and brings you closer to Tom?”

“Gardening,” Claudia readily answered. “I feel close to him when I do his garden and I will keep doing it. I just couldn’t do it before. I was too shocked. Now I have some hope and it gets me through the day.”

“How important is this hope in keeping you close to Tom and getting through the day?”

Firmness was in her voice as she stated, “Very, very important. It means I can enjoy some time with Tom and that is the most important thing to me. The time is so precious. And I don’t want to cry every minute.” We carried on talking about how Claudia and Tom were enjoying the window of time they still had together when Claudia confided, “Did you know I’ve stopped the nurses telling me about Tom’s symptoms?” She glanced up at me and paused, “Maybe that means I’m in denial, I don’t know.”

“What sort of talk are you encouraging or hoping for when you halt discussion about Tom’s condition?” I asked.

Her reply tumbled out. “I know what’s coming…I just want a little longer, just a little longer with him without thinking of that. It’s always there in the background but I don’t want to go there before I have to.”

I could easily understand why Claudia might want to protect the hope that was allowing her to savour time with Tom. To me it was not denial of his approaching death but rather embracing what was most important to her — close time with Tom before he died.

I left that day not knowing when Claudia and I would next meet. The uncertainty Tom and Claudia were living with made it difficult for Claudia to plan. We had agreed she would call me when she next wanted to meet.

The following week I heard that Tom was dying. The hospice nurses were visiting daily and every effort was being made to keep him comfortable.

One morning I arrived at work early. I sat down at my desk noting the light was blinking on my answerphone. I punched in the numbers to access my messages. There was just one. One of the hospice community nurses had called to let me know Tom had died. “Claudia would like to see you,” she said.  

“Such a lot has happened since we last met. Would you like to talk about the last fortnight or is there another place you would rather begin?” I asked, seeking to create some space for her to guide me as to how she wanted to begin our conversation. I didn’t know how talking about Tom dying would be for Claudia or what language she preferred to use. (17)

Claudia spoke slowly contemplating her words as if they were transporting her back in time. “I moved Tom back into our room after I saw you. I’m so glad I did. It was much nicer for him.” She smiled tenderly. “I lay beside him on the bed that last week as he was dying. I told him over and over, ‘You’re loved and you’re safe.’ It was just him and me when he died…” Claudia paused, her eyes staring unfocused. Returning her attention to me she resumed speaking. “The family had left for the evening to give us some time alone together, but I called them when I realised he was dying. They came straight back. In the end, he died like he’d wanted.”

I imagined Claudia reassuring Tom with her love. “May I ask… what difference did it make to Tom to feel loved by you as he was dying?”

Claudia sat back in the sofa. “I guess he could bear it. He’d had a tough childhood because he was different, and he was bullied a lot. But when he died, he had a family. He was loved. He had all the things that were really important to him.” She glanced at a photo of Tom and the girls on the wall. I too looked at the picture of Tom holding Libby while Imogen wrapped herself around his legs.

The slow pace and rhythm of my words matched Claudia’s as I returned my entire attention to her and expanded my previous question. “What did it mean to Tom to have a family and to be loved as he was dying do you think?”

“Everything. A chaplain visited Tom at the hospital just after we heard the news he was going to die. The chaplain asked Tom, ‘Has it been a good life?’ and Tom said, ‘Yes. It has been a good life.’ It comforts me to think that. He always said he’d got a life through me he’d never expected to have.”

I leant towards her as I replied, “What was it that he got from his relationship with you that made his life good?”

“He said he learnt new things. He became a father. He said because of our relationship, he got to have a life he wanted but never imagined having.” Claudia’s body stilled and her mouth turned down. I responded tentatively, “Would you mind sharing with me a little more about this good life that your relationship gave Tom?” I hesitated. “Might Tom have said it was a longed for life?"  

“It was a longed for life,” Claudia replied emphatically. She wrapped her arms around her body as if to hug herself and began to recall how she met Tom and the friendship they shared. The words came out quickly matched by the tears that fell from her eyes. After a few minutes of talking, Claudia slowed, releasing her arms from her body, and sat back on the sofa. “He said he’d always been on the outside and never felt like he belonged. It all changed for him when we were together. We both valued friendship and loyalty and it built our relationship.”  

I was spellbound by what they had given each other. “People mean many things when they talk about friendship and loyalty. What were yours and Tom’s understandings and how did they show in your relationship… that had Tom moving from feeling on the outside to stepping inside and experiencing belonging, friendship, and love…a longed for life?”

It was a long question and I said it slowly with expression. Claudia stared at me attentively. Eagerly she replied, “We had each other’s backs. Even if we didn’t agree, we always loved each other. We respected our differences and opinions. Our love was always there even in the way I cared for him. When Tom got sick, he said it changed how he dealt with having cancer.”

“How did this love you shared and the loving ways you cared for Tom influence how he lived with the cancer?” (18)

Claudia leant towards me, seeming oblivious to anything other than what she was about to express. “It meant he could go on enjoying his life. We were good at loving each other. We both changed and grew because of the relationship. I will never have another like it. It kind of gives me more to hold on to, and I keep saying to myself how grateful I am for my relationship with Tom, but it’s also so much more to lose.” Claudia lowered her voice, her passionate tones fading rapidly, and almost whispered, “I’ve been on the edge of a cliff for so long knowing there was a chasm ahead of me. I know I’m falling into it now but there’s this numbness. I hate it. It disconnects me from Tom. It’s like this isn’t real and it is.”

I reflected on the enormity of such a loss and Claudia’s ability to express gratitude at such a moment. “When you’ve had such a special relationship which both gives you more to hold on to and more to lose, how do you understand this sense of numbness?” Claudia nodded when I gave weight to the words “more to lose” and then replied hesitantly, “It’s an anesthetic. My body being kind maybe.”

“What does this sense of numbness speak to about the relationship you have with Tom and the magnitude of the loss do you think?” I wondered if the numbness was an expression of their close connection, and the magnitude of the loss Claudia was experiencing.

Claudia straightened her back and lifted her chin. “Tom dying is bigger than any loss I have been through before. Other people I have loved have died but nothing compares to this. Nothing!” She uttered the words emphatically as if arguing with an unseen audience. Then, making eye contact with me added, “Does that make sense?”

I nodded as she spoke, reflecting that she was in a much more informed position to speak of this than I was. “Losses are not the same, relationships are different, and circumstances are different. Would it be OK to ask what it is that contributes to Tom dying being an incomparable loss, the biggest loss you have ever experienced in your life?” I wanted to fully acknowledge her experience. (19)

Claudia wriggled back on the sofa unfolding her arms. Her chest rose as she took a deep breath. “He has been the most important person in my life. He is my best friend. I don’t want to forget.” I remembered h

Using A Holistic Approach to Therapy with Clients Experiencing Chronic Illness, Disability, and Mental Health Challenges

Posted on by Psychotherapy.net Team

Prevalence of Chronic Illness/Disability in the United States

The presumption that “typical” abilities and wellness encompass the norm is a viewpoint that pervades United States policies, infrastructures, and societal expectations. The reality is that the majority of the US population grapples with chronic illnesses and disabilities, challenging the conventional definition of “normalcy.” While many associate illness with isolated incidents, dramatic and prolonged interruptions in otherwise regular lives — along with the prevalence of chronic conditions — indicates that illness is, in fact, more typical of the human experience than not.

According to data from the Centers for Disease Control and the Rand Corporation, over half of Americans (51.8%) contend with at least one chronic condition, whether physical or mental. Some estimates are that 42% of the population faces multiple chronic conditions. By comparison, according to the European Council of the EU, one in four, or 25% of European adults live with a chronic illness/disability. These statistics not only reveal the widespread impact of chronic illness but also emphasize the need to shift cultural perspectives surrounding health and ability. To be absolutely clear, in the United States, chronic conditions are the norm, not the exception. In his recent book “The Myth of the Normal,” Gabor Maté challenges prevailing notions of normalcy and underscores the ubiquity of trauma and illness within the diversity of human experiences. Exploring biopsychosocial aspects of chronic illness and disability, Maté exposes fundamentally unhealthy cultural constructs that shape our understanding of what it means to be “normal.” Moreover, in response to an unhealthy environment, Maté asserts that illness is a valid response. His work resonates deeply with my practice, as it highlights the importance of acknowledging the sequelae of trauma in the vast spectrum of human existence.  

As a Clinical Rehabilitation Counselor, my training encompasses both the medical and psychosocial aspects of chronic illness and disability. Moreover, my own personal journey as a cancer survivor and someone diagnosed with Crohn's disease enables me to meet clients from a perspective of lived experience. This experience underscores the importance I place on applying a comprehensive holistic approach to mental health in the context of chronic conditions many of my clients experience. My work in a small group practice specializing in supporting clients with trauma, chronic illness, and disability is a testament to the prevalence of such experiences.

Within my caseload, 95% of clients navigate the challenges of multiple chronic physical and mental conditions, often relying on state-subsidized insurance for healthcare. Among these individuals, approximately 60% identify as female, 25% as gender fluid or transgender, and 15% as male. Their narratives underscore the multifaceted nature of dependence and autonomy across various dimensions of life. From physical and financial to emotional and sexual realms, the complexities of living with chronic conditions influence every aspect of their existence.

For individuals grappling with chronic illness, the connection between past trauma and present health challenges cannot be overlooked. More often than not, these clients report elevated Adverse Childhood Experiences (ACEs) scores, revealing a complex interplay between past trauma and present health challenges. My integrative approach encompassing trauma-informed care, empathy, empowerment, and holistic healing includes attention to my client’s experience of their body. Attention to physical sensations including interoception and proprioception, breath, movement, and reflex patterns, allows me to guide them towards a path of resilience, self-acceptance, and well-being. Recognizing the intricate threads that weave together past experiences, present struggles, and future aspirations creates a space where my clients feel heard and equipped to navigate the complexities of their health journey with resilience and clarity. 

Relationships and Chronic Illness/Disability

One of the prevailing challenges faced by individuals with whom I work who have chronic illness and disability shows up in power dynamics within close relationships. Dependence on a partner for various types of support including financial and logistical, coupled with chronic pain and the struggle to balance gratitude and self-worth, can erode an individual's sense of agency. For those grappling with conditions such as Crohn's disease, fibromyalgia, multiple sclerosis, or rheumatoid arthritis, the unpredictability of their conditions makes planning for the future a daunting task. As a result, vacations, celebrations, and even daily routines are frequently disrupted. The demands of work often deplete their energy, leaving their partners to shoulder the responsibilities of managing a household and caring for children. The strain on intimacy and sexual relationships adds another layer of complexity.  

Partners of those with chronic illness and disability experience their own set of challenges, leading to feelings of frustration and helplessness. Their desire to provide support can transform into a sense of powerlessness as they navigate the complexities of medical interventions, lifestyle changes, and emotional well-being. The dynamic between partners can quickly shift from a place of caring support to caregiver exhaustion and burnout, a source of resentment that creates a cycle of mutual dissatisfaction.

In my therapeutic practice, it is not uncommon for clients to request involving their partners in sessions. Drawing from my unique perspective as someone who navigates a chronic illness while also being a partner to someone with health challenges, I provide insight that resonates with their experiences. This shared understanding fosters open dialogues that explore the intricacies of relationships within the context of chronic conditions.

One poignant example underscores the profound impact of childhood experiences on an individual's journey. A client shared a harrowing memory of their father monitoring their food intake during meals — threatening punishment if they exceeded a prescribed number of bites. This history of food-related trauma has woven itself into their present struggles with Small Intestinal Bacterial Overgrowth (SIBO), a condition marked by pain, diarrhea, gas, and bloating due to bacterial overgrowth in the small intestine. While the impulse to connect trauma to illness is compelling, the client's journey also involves a series of infections necessitating antibiotic treatment over time.

This client’s partner, in their well-intentioned efforts to support, inadvertently triggers their traumatic memories when attempting to manage the client’s food choices. The need for a restrictive diet as part of SIBO treatment further compounds their emotional turmoil, fostering feelings of deprivation and punishment as they strive to heal. Addressing this intricate interplay of trauma and health within the therapeutic space requires a delicate balance.

In a joint session involving both the client and their partner, I employed empathetic communication to navigate their complex dynamic. While acknowledging the partner’s genuine desire to provide assistance, I simultaneously asserted the client’s agency and authority over their own body and treatment. Employing the metaphor of the client as the “captain of their ship,” I emphasized that their body is their vessel, and they remain firmly in control. This approach is of paramount importance, particularly for individuals who already feel a sense of bodily discord and lack of control.

Additionally, it is helpful to recognize the partner’s role in the client’s healing journey. Acknowledging the partner’s commitment to honoring the client’s autonomy becomes an act of spiritual significance, aligning with their broader values. This dual recognition — empowering the client’s autonomy while honoring the partner’s supportive stance — fosters a therapeutic environment that not only addresses the physical aspects of chronic illness but also attends to the emotional, psychological, and relational dimensions.

In another case, my client grappled with chronic Lyme Disease within a relationship plagued with communication challenges, describing their partner as “unresponsive.” When they came for a family session whose purpose was to help them talk about the ramifications of her disease, I realized her partner was very likely on the spectrum. Though not his counselor, I was able to introduce both of them to this possibility, explain how this might be contributing to their difficulties, and help him connect with a counselor of his own.

Finances, Work, and Future Self in Chronic illness/Disability

For those clients navigating a chronic condition on their own, their lives are often precariously situated on what feels like the brink of financial ruin and collapse. With chronic pain or with an unpredictable condition exacerbated by stress, work is a double-edged sword. On the one hand, it may confer some security, sense of accomplishment, and self worth. On the other hand, it may aggravate certain illnesses by contributing to stress and may prevent people from qualifying for federal or state aid.

Most of my clients with chronic illness have applied for disability and are on their second or third appeals. They hang in a limbo where making money can compromise what little chance they have. Barring paralysis or a progressive condition, their chances of receiving disability are slim to none. These clients often seek work they can do from home. They are unwilling to take on student loans because of the precarity of their health. Some earn a living from piecemealing several jobs.

Whenever possible, I try to coordinate care with vocational rehabilitation (VR) services offered by the state which helps people find and obtain work suitable to their strengths and limitations.  

In one case of a client with chronic depression and difficulties which led to him losing his job, I advocated for him to receive a neuropsychological evaluation. Both the client and I felt he was on the spectrum. This enabled him to receive help from VR for job placement and support. By helping him find work that made use of his strengths while limiting his interactions with people, his depression improved along with his self-esteem. Whether living with a chronic physical or mental condition, it is important to remember everyone has strengths as well as limitations.  

Moreover, chronic illness, disability, chronic pain, and trauma can profoundly alter one’s sense of self. As mentioned earlier, the challenges posed by unpredictable and intermittent conditions make it challenging for individuals to plan for their future. This absence of foresight can have far-reaching consequences, undermining clients’ ability to envision a future version of themselves — a capacity often taken for granted. This lack of future-oriented thinking leaves clients susceptible to a multitude of setbacks, affecting their physical, mental, reproductive, financial, and educational well-being.

The ability to manage finances is a skill, yet those who lack both financial resources and a sense of their future self tend to make choices that perpetuate their financial struggles, leading to increased poverty. I’ve come to understand that these clients find it difficult to delay immediate rewards for a future date. Without a clear vision of their existence in the next 5-10 years, they prioritize immediate gains, which is understandable.

A client who was in the foster care system and spent a period of time houseless in their teens worked in the food service industry. Though experienced, their lack of formal education meant they often worked under managers with a degree but less actual experience than they had. Frustration with poor management led to frequent job dissatisfaction. Chronic but unpredictable illness limited their ability to work more than 25 hours per week. This kept them stuck in tip-dependent but ultimately unsatisfying work. Their dissatisfaction influenced their feelings about work in general.

During a period of unemployment, I encouraged them to explore alternative options. It became clear that they had only the barest sense of how much money they actually needed to cover expenses. A critical therapeutic intervention involved helping them create a budget in order to more accurately assess the benefits of a job that offered no tips, but more hourly pay. Even at 25 hours/week, they stood to cover their costs better than with sporadic food service work.  

To arouse clients’ sense of possibility, I lean on existential humanistic and Buddhist psychological teachings. None of us knows when we are going to die. People with long-standing conditions, both physical and psychological, live long and productive lives. To come to terms with having a finite amount of time with no sense of how much time is left is an essential human challenge. My clients experience grief over unlived possibilities. These feelings must be acknowledged and included. One client whose career was interrupted by an ependymoma (a spinal tumor that recurred twice) has grappled not only with ensuing disability from the spinal tumor, but ways she never took her career seriously even before the onset of the disease. Often disease itself becomes a catalyst for deeper exploration and participation.

Wellness Culture, Community, and Chronic Illness/Disability

Our culture’s pervasive and inescapable preoccupation with fitness, appearance, and social status is another hurdle facing people with chronic illness or disability. Research has demonstrated the undeniable mental and physical benefits of engaging in exercise and community. But for those who struggle with chronic illness and disability, these arenas are often outside their reach. These clients find themselves frequently isolated by the exigencies of their illness.

Socializing requires energy, and in the face of household or work demands, friendships fall by the wayside. The COVID pandemic resulted in yet another barrier for people with chronic illness and disability who are at risk of more serious infections. For those with mobility issues, opportunities to exercise are limited. One client with Cerebral Palsy receives only 6-10 sessions of physical therapy per calendar year.

Part of providing holistic therapy is helping clients discover ways to include movement and connection in their daily routines. As an example I work with severa,l clients affected by Ehlers Danlos Syndrome (EDS). EDS is a genetic condition that affects collagen, our body’s connective tissue. It ranges from mild involvement that creates hypermobility in the joints, requiring avoidance of extreme movement practices, to so severe it can cause heart and other organ failures.  

I frequently incorporate QiGong movement exercises in sessions, or I provide clients with short videos to follow. QiGong, a 4,000-years-old mindfulness based movement practice used throughout Asia for health maintenance, healing, and longevity, has been shown to mitigate pain, lower cortisol levels, and improve self-efficacy perceptions. The movements are gentle enough to not strain the body, yet require focused attention. They can be performed standing, seated, or supine. 

For those clients who are housebound much of the time, the need for community is often met by online connections. One client maintains an active online presence and connects through advocacy and providing education about their condition. For a trans teen client attending online school however, face-to-face interactions with peers is missing and contributes to their feeling alone. Like many people his age, he’s reluctant to learn to drive, and though he has applied for many kinds of work, he’s not been able to find employment due to his age. These circumstances compound his isolation. Group therapy has sporadically met those needs, but isolation remains a significant issue for those with chronic illness.


***

In my personal and clinical experience, addressing the mental health needs of individuals with chronic illness and disability requires a holistic and empathetic approach. As a therapist, I have found it essential to challenge prevailing cultural norms, advocate for the acceptance of diverse abilities, and provide a safe space where clients can explore their unique journeys.

At the outset, chronic illness and trauma can feel like burdensome lead, weighing down the spirit and clouding our sense of self. The challenges posed by these experiences may appear insurmountable, the darkness can be overwhelming. Yet, it’s in the crucible of adversity that a profound alchemical process unfolds.

In essence, the alchemical journey of turning lead into gold mirrors the transformative power of the human spirit when faced with chronic illness and trauma. It reminds us that within the depths of our struggles lies the potential for profound growth, healing, and the emergence of our most radiant and precious selves. By fostering open conversations, cultivating self-advocacy, and nurturing supportive relationships, I, and hopefully fellow clinicians reading this, can empower their clients to embrace their identities and navigate the complexities of life with resilience and grace.   

The Challenges and Rewards of Therapeutic Work with Brain-Injured Clients

Posted on by Psychotherapy.net Team

Over the course of my career, I have worked with many people who sustained brain injuries. In the 1980s, I worked in a brain injury rehab program set in a nursing home, then in private practice during the 1990s. For many years since, I have been an employed psychotherapist in nursing homes.

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In my experience, those who have acquired a head injury typically display irritability and quick flashes of verbal anger — aspects of “organic personality change.” The individual may be more impulsive, acting prior to thinking about likely consequences, might show less awareness of social boundaries, and have problems with short term memory. Sharing some of their stories will offer you a glimpse into some of the challenges and opportunities I’ve experienced in working with these clients.

Case Illustrations of Clinical Work with Brain-Injured Clients

Douglas

One of the clients I met while working at an in-patient brain injury rehab program was Douglas, who was in his early twenties, and was injured riding his motorcycle while intoxicated. Anger management was a focus of therapy; he often expressed anger over being injured, and at his father for bringing him to the rehab program. One additional task of therapy was to assist him in formulating a new sense of personal identity — as he was not who he had been, and not yet who he was becoming, but was feeling lost and overwhelmed somewhere in the middle. Another goal was to strengthen his motivation to maintain sobriety in the future.

During a psychotherapy session one day he unexpectedly said, “Getting a brain injury was probably the best thing that could have happened to me.”

“Tell me why you say that, Douglas,” I asked.

“Because otherwise I don’t think there was any way I could have stopped drinking.” But that attitude and outcome are not achieved by all people.

Brandt

During the time I was working in private practice, I also provided psychotherapy and consultation with a statewide head injury program in Massachusetts. That was where I met Brandt, who had an alcohol use disorder, and, over time, had acquired three different brain injuries because he was not able to stop drinking.

Brandt had his first head injury on a construction job site when he was under the influence of alcohol. To others in his life, Brandt appeared to have a friendly and outgoing personality. Yet the overly friendly, and often tactless and joking manner he displayed represented “changes of personality” associated with frontal lobe executive dyscontrol due to his first brain injury — when a piece of work equipment struck him in the forehead.

Because of his frontal lobe dysfunctions, Brandt found it difficult to anticipate or perceive likely consequences of his actions, and he might brush off or disregard cautions and advice offered to him by me or others in his life.

His second injury occurred when he had been drinking one night with friends. They ran out of beer, and Brandt jumped into his Volkswagen Beetle and sped off to buy more. He drove too fast around a curve in the road, the car rolled over and he was ejected from the car. He landed unconscious on the ground in the dark.

Brandt awakened and lifted his head, and immediately in front of his face was a gravestone. He had landed in a graveyard! How could there have been a more pointed and dramatic message about where his drinking would lead him? Nonetheless, he continued drinking until he had a third brain injury that resulted in significant disability, and he was moved into a group home for daily care.

Mrs. Kelly

During the period when I worked in private practice and was offering head-injury-related consultations, I went to Chicago for a co-presentation at a brain injury conference. I spoke about brain injury from a professional point of view, and the co-presenter, Mrs. Kelly, talked about the personal experience of living with a brain injury. Driving home one day, Mrs. Kelly had been struck and injured by a drunk driver.

During our presentation, Mrs. Kelly spoke of the life losses and challenges that had resulted from her injury including relearning to walk, talk, conduct daily tasks, the gains that resulted from her rehab, and from the continuing support of her husband, who had accompanied her to Chicago who was always in her company.

I spoke of the common goals and aims of brain injury rehab, and about the work of individual therapy, group therapy, and family or marital therapy following a brain injury. During our talk, we also shared a particularly poignant background to our shared experiences, because Mrs. Kelly had earlier been one of my teachers in high school. Using her characteristic humor, Mrs. Kelly once said to me, “I used to get mad that I keep forgetting things; but then I realized, why get mad, in a few minutes I’ll forget what I was mad about.”

Rose

My mother-in-law, Rose, became ill with dementia and spent the last months of her life in a nursing home close to where we live. She and I sat in a small dining room during a visit one day a few years ago. A nurse’s aide across the room spoke irritably to a female resident in a wheelchair.

Rose watched, and when the aide left the room, she shook her head and said, “I hate it when they talk that way. She spoke to her like she was a has-been. She’s not a has-been, she’s a have-been.”

“That’s such a wise and beautiful thing to say, Rose,” I remarked.

Ronald

Around that time, I had long been working as an employed psychotherapist in nursing homes, and I was then seeing Ronald for psychotherapy in a different nursing home from where Rose resided. Ronald had been a scientist working at a prominent institute in California, and he drove a red convertible sports car — but sometimes too fast, and he sustained a brain injury in a collision.

What remaining family he had was in the Boston area, and so he found himself at a nursing home outside of Boston. Ronald was depressed and angry. He mostly stayed in his room, reading and listening to classical music. He would make derogatory comments about the other residents and the staff.

I told Ronald the story of the wise comment by my mother-in-law, and I challenged him to conduct a scientific experiment over the coming week: to go about the unit and research who the other residents have been in their lives.

The next week as I walked onto the unit, Ronald approached me holding a small notepad. Referring to notes he’d written, and pointing to different residents, he excitedly recounted things he had learned about them.   

***
 

Conducting psychotherapy with brain-injured clients has typically involved some modifications to my typical approach. It has been important for me to remain alert to the psychological consequences of organic brain dysfunction. My approach with these particular clients has been more educational and directive as opposed to my typical non-directive one; teaching about the effects of the injury and providing behavioral guidance and specific suggestions for social functioning. The information I provide in treatment is more concrete, and offered in smaller bits, with frequent repetitions to aid retention and recall.

I have found it to be enormously gratifying to work with these clients and encourage my colleagues to welcome rather than avoid these opportunities. It allowed me the chance to work with clinicians who taught me to appreciate the psychiatric effects of medical conditions. The work also allowed me opportunities to make a positive difference in the lives of persons who had been severely injured, and in the lives of some family members who had been devastated by the injury to their loved one. 

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

Posted on by rezendevknowfully.com

Acknowledgements

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

“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

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.

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. 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

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”.

“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.

“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?”

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

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?”

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’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

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 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.

“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.

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…”

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

“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?”

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?”

“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

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 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?”

“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.”

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. 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.  

A Shared Diagnosis: Managing Breast Cancer Together

Posted on by Psychotherapy.net Team

Over the course of my treatment for breast cancer, I found myself feeling professionally challenged in many ways. But the most significant source of my growth as a therapist during this time came from the fact that I was following in the path of one of my own patients, Jessica Chin (a pseudonym). She was diagnosed with breast cancer in 2019, and three years later I would receive the same diagnosis while she was still in treatment with me. At my request, and with homage to Irv Yalom’s Every Day Gets a Little Closer, Jessica shared her thoughts (in italics) throughout this essay. Working together was a privilege and it is my hope that our combined voices will serve to deepen the conversation about the potential impact of a therapy relationship for both patient and therapist.

In our profession, we rely on our ability to treat people who differ from us in a variety of ways. Our training and our capacity for empathy allow us to develop deep connections with patients despite differences in such things as age, gender, and ethnicity.

In contrast, my experience with Jessica highlighted for me the complexity and power of having a shared experience with a patient.

Working Therapeutically in Uncharted Territory

Jessica first came to my office in 2012 to discuss generational issues in her Asian family. Through our work, her self-esteem improved. She found her own voice and was able to extricate herself from the family business, marry, and move to another state. We ended our work together after four years, and both felt encouraged by her progress and the prospects for her future.

Unexpectedly, three years later, she was diagnosed with breast cancer at the age of 35 and reached out to me seeking to resume therapy. Her prognosis was good, but the road ahead was scary and fraught. She had chemotherapy, followed by surgery, and then radiation. Although she and her husband had decided that they did not want to have children, the fact that her treatment would lead to early menopause and the consequent side effects was a harsh reality to absorb.

When I was diagnosed, I immediately thought of reaching out to Maggie. I thankfully had family and friends to lean on, but I needed support from someone that understood the nuances of my family and personal history and how it could impact my treatment and wellbeing. I also needed an outside perspective to help navigate my treatment. Genetic testing revealed I have a positive gene mutation which meant I could choose a bilateral or double mastectomy rather than a lumpectomy and radiation. There was also data suggesting those who carry this genetic mutation might have a higher chance of breast cancer recurrence if exposed to radiation. I spent most of my sessions with Maggie weighing pros and cons and what if's. She regularly advised me to make the decision that was backed by data and to lean into what felt right to me. There would be what if's no matter what — only I knew what I could manage during this time and to hold onto that. This advice grounded me in my personal and medical decisions throughout treatment and to this day.

I had been in practice for over 30 years at the time of Jessica’s diagnosis, but I had almost no experience working with patients who were actively undergoing cancer treatment. Even more surprising, despite the prevalence of breast cancer (1 in 8 women in the United States receive a diagnosis of breast cancer over the course of their lifetimes) I had never had a patient undergoing treatment for breast cancer while in my practice. My instinct was to help Jessica hear her own voice through the cacophony of advice she was receiving and support her while she had a multitude of difficult decisions to make.

My knowledge of Jessica’s background and complex family dynamics from our prior work together gave me a benchmark against which to assess the changes in her mood and outlook. As is common for people with a life-altering diagnosis, she became more intolerant of “wasting time” and pushed back against familial and cultural expectations for her to be compliant in her role as a daughter, woman, and patient. I supported her through all the phases of her treatment and then shortly thereafter found myself facing a similar diagnosis.

A Therapist's Cancer Experience Shapes Treatment

  From a routine mammogram screening in December of 2022, I was diagnosed with breast cancer. This was terra unfamiliar for me, but fortunately my prognosis was excellent. I scheduled my surgery during the week between Christmas and New Year’s, a period I had already arranged to be off.

My original plan was not to tell my patients of my diagnosis,  but after surgery it was determined I would need chemotherapy. Being immunocompromised, I would have to end in-person sessions, and anticipating a radical change in my own appearance, I decided to tell my patients about my cancer.

As I thought through my caseload, each patient brought different concerns to mind about how they would handle this news. Their concerns ranged from fear of losing me to death or retirement, or to the worry that their issues felt insignificant in comparison to my situation. I felt confident that I could work through the ups and downs with each patient.

Jessica was the patient I most dreaded telling. She would know from personal experience what I was facing, and I was concerned that my diagnosis would overwhelm her. 

At the time of my diagnosis, she had just entered the maintenance part of her treatment. I wasn’t sure what would happen to the boundaries between us as my treatment began to replicate hers.

When Maggie told me about her diagnosis, I was shocked and sad. My heart sank thinking of her going through the gamut of appointments, ultimately robbing a year of her life. From what she shared, I understood from a high level what this meant logistically and what it could possibly mean physically, mentally, and emotionally as each cancer experience is so unique. I wasn't surprised Maggie would keep seeing patients during her treatment from what I knew of her, plus, it would help to keep life “normal.”

I was wrong to worry about sharing my diagnosis and treatment with Jessica. Our boundaries did shift, and the sessions changed but I believe in ways that were beneficial to both of us. Being open to receiving from her was the beginning of my learning. She began to recount her cancer treatments with more details than she previously had shared. And I had a context to understand her references which I lacked before my own treatment. There was a clear shift in our roles as she became the teacher, sharing her experience. Despite being almost twice her age, I found Jessica’s personal understanding of cancer treatment deeply affirming of my own experience. Remarkably she was the closest person in my life at the time with a similar diagnosis.

Our sessions fell into a pattern: during the first ten minutes or so of each Zoom session, she asked me how I was feeling and together we discussed the ins and outs of whatever point in treatment I was facing.

It was initially uncomfortable for me to have so much of the focus on me but with time I came to appreciate how helpful our sessions were for both of us. In contrast, I also had to process my feelings about patients who never asked how I was feeling or showed any interest in my well-being. I didn’t want to bring any more attention to myself than I already had by sharing my diagnosis, but each patient’s response to my diagnosis revealed something about them and our relationship.

As Jessica learned about my experience, she was prompted to address how she felt during her treatment.

I didn't want to be evasive, asking how Maggie was doing during our sessions. I was genuinely concerned and didn't want her to feel like she owed me more of an explanation because of a shared diagnosis. I'd cautiously ask questions, not wanting to overstep personal boundaries. During certain points of her treatment, I'd share some of my experiences with Maggie, with the hope that it would serve as a form of support, and she wouldn't feel alone. Cancer is so lonely. If I could offer Maggie even the slightest amount of comfort, it would be an honor and a gift to do so.

Before my last chemotherapy treatment, she warned me that I would have to “ring the bell,” a customary ritual at the end of chemotherapy. She knew me well enough to know this was not something I would welcome. She had never talked about this experience before, and it led to an exploration of her feelings about how powerless she felt as a patient to say, “No.”

Our increased understanding of each other helped me personally, but it also helped me be a better therapist for Jessica. The nuances of our work deepened as we grew closer and her voice continued to get stronger, to the point that I felt comfortable enough to ask her if she would like to participate in writing this essay. I trusted she would be able to give an honest answer.

A significant way our treatment protocols diverged was that I was offered cold capping with my chemotherapy treatments to help prevent hair loss. In the end my hair loss was negligible which was a huge relief to me. Jessica, by contrast, lost all her hair during chemotherapy; this loss prompted many sessions focused on her distrust of her body and her despair over her altered appearance.

By the time of my diagnosis, Jessica’s hair had grown back, not exactly as it had been before treatment but sufficiently that the change was not obvious to a casual observer.

As she witnessed my lack of hair loss, she spoke in greater detail about her own ordeal of losing her hair, being fitted for a wig, and the physical discomfort of her hair growing back. We talked about the financial burden of a cancer diagnosis and the lack of insurance coverage for “cosmetic” concerns such as hair loss. Our shared knowledge base deepened my ability to support her unresolved anger with the medical system. Her need to fight the insurance company for access to care is an ongoing source of stress for her.

Cold capping was presented as “nice to have” and questionably effective for my treatment plan. That, coupled with it not being covered by my insurance, was disappointing. I was surprised cold capping was presented as a positive option for Maggie and was intrigued what the results would be. I hoped the cold capping would work and she'd be spared the physical and mental trauma of losing her hair. I was thrilled the cold capping worked for Maggie and equally enraged this is not a standard part of every woman's treatment and insurance plan.

The difference in our age was most pronounced in discussions about long-term management of our cancer diagnosis. As a young woman, Jessica is facing far more extensive interventions and questions about how to stay cancer-free without compromising her health in other ways. As she continues to grow professionally, she also has to contend with issues related to maintaining her health insurance coverage. As someone on Medicare and nearing the end of my professional career, I have more autonomy in making decisions about my work-life balance.

Since resuming our work together, Jessica’s father has died and there have been other major transitions in her life. Separate from our shared experiences around cancer, we have done some important work about managing grief and setting limits with her family of origin. Even when we are not directly talking about her cancer, it is a reality that colors the conversation.

In a way, our shared cancer experience has allowed me to open up more to Maggie during our sessions. I've felt comfortable and trusted her throughout the years, but something has changed. I feel strongly this has been instrumental in working through the grief of losing my father.

There was something profoundly different in my work with Jessica since my cancer diagnosis from my work with any other patient. As I gain more distance from my cancer treatment, we have shifted away from the weekly check-ins. But she will always be at the forefront of my mind, and gratefully so, when I think about what it was like to continue to practice through my cancer diagnosis and treatment.

***   

Allowing our patients to know us, let alone directly help us, is a controversial topic in the field of psychotherapy. But sometimes life intervenes, and we have to adapt. I am glad I continued to practice during my cancer treatment. As Jessica said (she also worked throughout her treatments), it helped keep a semblance of normalcy in my life while allowing me to feel like more than just a patient. And I move forward with confidence that I am a better therapist for her and other patients who might follow in our shared diagnosis.
 

Questions for Thought and Discussion

  • How did the therapist's approach to her client resonate with you?
  • What are the advantages and disadvantages of sharing such Personal, and in this case intimate, information with a client?
  • If you have had a personal circumstance that converged with those of your client(s), how did you handle it?  

Narrative Therapy in a Cross-Cultural Conversation with Someone Approaching Death

Posted on by Psychotherapy.net Team

Acknowledgements

T?na koutou, t?na koutou, t?na koutou k?toa

Ko Ben Lomond t?ku maunga

Ko Loch Lomond t?ku moana

Ko McAllum t?ku iwi

No Kotorana ?ku t?puna, engari I haere mai ?ku t?puna ki Aotearoa nei

No reira ka mihi hoki au ki te iwi M?ori

Ko James Copeland t?ku t?puna

Ko Hamish McAllum t?ku p?pa

Ko Jan Hutchison t?ku m?ma

Ko Gavin Pilkington t?ku tane purotu

E rua ?ku tamariki ko Tim r?ua ko Ella

Ko Sasha McAllum Pilkington t?ku ingoa

No reira t?na koutou, t?na koutou

Kia ora t?tou k?toa

Thank you, Huia Swann, for your encouragement and feedback through the many iterations of this story.  

An Unexpected Beginning (1)

It was a busy morning at the hospice. I made my way into the community team’s office and was greeted with a buzz of activity. One of the nurses called me and I turned to greet her. In her hand was a referral letter.  

“Sasha, I was wondering if you would see this woman for counselling? Her name is Louise, and she has advanced lung cancer. (2) Louise is refusing all treatment. It seems someone thought she was ‘in denial’ but I saw Louise yesterday and she told me she’s ‘not having any chemo’ because she doesn’t think she’s worth it. Louise is M?ori, but she’s refused cultural support. Could you see her?” she repeated, as she handed me the letter (3).

“Of course,” I replied, disturbed by the thought that Louise didn’t feel she was worth treatment, but grateful the nurse had looked beyond the judgement that Louise was “in denial.” Before I could say any more, the nurse was summoned to the phone and with a smile, I left to call Louise.

A few days later I pulled up in a beautiful driveway. Plants nourished by an attentive hand surrounded the house in front of me. As I got out of the car, I saw a slight woman emerge into the sunlight. Her dark hair gleamed as the rays of sun caught it and, as I came closer, I saw she was smiling. Louise welcomed me warmly and, after I had removed my shoes, guided me into the house. We sat down at the kitchen table. Nearby stood a large kete (4) filled with driftwood, each piece carefully placed to reveal a story. Woven mats hung on the walls and outside I could see clusters of red berries hanging below the fronds of a nikau palm. Artistry was evident in creating this home and I looked around with admiration.

After some further introductions, Louise eased herself back in her chair and looked at me expectantly. Tentatively I responded to her silent invitation with, “People are so much more than the illness they are living with and their current situation. Would it be OK to begin, maybe, with me asking you a bit about yourself…so that I might learn a little about who and what matters to you?” (5) I didn’t name the illness as I didn’t know what language she preferred to use or how she might wish to speak about her experience.

Louise responded immediately. “Sure! I’m married to Pete and we have three children. They’re all really supportive, in and out of the house every day…”

Louise continued to share stories of her day-to-day life and I listened attentively, occasionally asking her questions so that I could learn more of what was important to her. I quickly learnt Louise was a hard worker and a committed parent. She made no mention of where she was from or her t?puna (6).

After a time, Louise paused and reached across the table to pick up a piece of paper. “Well, it’s lucky you’ve come to see me on your own.

I don’t like groups because I lie in them. I’m a liar,” she stated in a forthright tone, waving what I now realised was a support-group invitation from the hospice.

Struck by her honesty and trust in me, a stranger, I replied, “Would it be OK to ask what you mean when you say you lie?” (7) In my mind was an awareness that some truths are more easily spoken than others, and for some people it was unsafe to voice or live their truth.

Louise responded, speaking in rapid buoyant tones, “Oh, I say what I think I should in groups…but then later I discover it would have been all right if I’d said what I really thought.”

With all the respect I could convey, I replied, “What is your understanding of why you say what you think you should?”

Immediately Louise explained, “Oh, I tell a story to fit in.”

I reflected that people usually have good reasons for what they do. “What is important to you about fitting in, do you think?”

Louise sat back in her chair looking thoughtful. “I like to fit in. When I’m in a community I’m proud of it. I like belonging to clubs. I wasn’t brought up to do any sport or anything, so it means I can choose. I’m not tied to one thing.”

Curious, I responded, “Would you mind me asking… how do you go about this fitting in?”

Louise paused. “I don’t know, but I’m really good at it,” she finally said.

“Are you a flexible kind of a person?” I offered.

“Sure am.” Louise nodded.

“Which kinds of communities or clubs do you like to fit in with?” I continued.

“I take the best of what’s around. People are good to me, kind,” Louise answered, as if she couldn’t quite believe her good fortune.

“Would you say you are someone who both accepts and appreciates the generosity and care of others?” I asked, noticing her gratitude. (8)

Louise began to tell me how she appreciated homemade gifts as opposed to bought ones. She elaborated on the care and effort in the presents people made and gave to her. Homemade fudge was so much better than a box of chocolates, she explained.

“Do you see the intention behind the gift, the love maybe?” I asked. Louise nodded as if this was obvious to her.

“What do you give to people in return when you accept their gifts, noticing the care and effort that has gone into making them?” I asked, highlighting the reciprocity in the way she received gifts. (9)

“They must feel the magic, because I do,” Louise answered matter-of-factly. “People are kind,” she reiterated. “I have lung cancer. It’s an ugly cancer. I was so happy when they included me in the make-up day for women with cancer. I didn’t think they would, what with me having a dirty cancer and them all having the pretty pink kind.”

Taken aback, I responded, “Would it be OK to ask what you mean when you talk about your cancer as being dirty and theirs as a pretty pink kind?”

Louise lowered her head as she answered me. “My cancer is dirty because it’s a smoker’s cancer. It’s my own fault.”

Infusing as much respect into my voice as I could, I asked her in a quieter tone, “Would you mind me asking you some questions about how you began to smoke?” I reflected on how hard it would be to be a smoker with cancer and not afforded the support that other people living with cancer are offered. I tried to imagine being shamed at one of the worst moments in life, not allowed to feel sad or angry but being repeatedly blamed both vocally and silently.

“It was the ‘in thing’ to smoke,” Louise explained. I nodded. Louise and I both came from a time when many people smoked.

“When I was 10, 11, 12 years old, I pinched my mother’s cigarettes for a naughty puff,” she told me with a mischievous glint in her eye, evoking glimpses of childhood fun away from the surveillance of adult eyes.

“When you were 10, 11, 12 years old, do you think it was possible for you to realise the full implications of the naughty puffs?” I inquired, hoping to lessen the harsh judgement she extended towards herself alone.

“No. I didn’t realise in my teens either. It wasn’t ‘till much later when I came to live around people who didn’t smoke,” she told me.

“How do 10-, 11-, 12-year-olds come to smoke, do you think? How do they come to think it’s a good thing?” I responded.

“It’s the way I was brought up. It was a hard life. It wasn’t ‘till I started playing sport that I realised there were different ways of living, that some kids had a bed each and enough to eat. (10) My parents were hard people. They smoked and drank,” Louise conveyed with a frown.

In my head I did a few calculations. Louise would have been growing up after the Second World War when many M?ori were living in poverty. I thought about her family and wondered if Louise had a grandfather who fought in World War One. I knew of P?keh? returning servicemen who had been allocated a farm in the ballot after fighting in World War One, while my friend’s t?puna (11) who fought in the M?ori Battalion returned to discover his ancestral lands had been confiscated. There were many possible reasons for why Louise’s family experienced hardship.

“What is your understanding of how they came to be like that?” I asked.

“Maybe it’s ’cos they grew up in the Depression. (12) It was a hard life, and they worked hard and partied hard. Yeah, they were hard people,” she repeated.

“Hard lives can have people turning to cigarettes and drink to ease things, especially when there is trauma and hurt that comes with it,” I commented. “What do you make of there being cigarettes for sale when we all know they kill people?”

We pursued this line of questioning for a bit longer, with me seeking to broaden the responsibility for smoking into our societal context so that Louise wasn’t left to shoulder it entirely on her own.

However, I noticed myself beginning to labour a little in the conversation and started to wonder if I might be more interested in taking such a direction than Louise was.

So, I listened harder for what was important to her.

“Yeah, well…” Louise pondered. “I left home at 13 to get away from it all. I knew I had to get out. The beatings, the life… My fault I smoked… Miracle I survived this far. The shame of it has been with me since I’ve had children.”

“What was important to you that you knew you had to get out?” I wondered.

“I wanted to get away from the cigarettes and the booze…” Louise elaborated.

“Do you know what it was that was important to you that you wanted more from life, that you didn’t just accept the cigarettes and booze?”

“I wanted a better life and to live it,” Louise explained.

“May I ask, what sort of better life did you want?” (13)

Louise told me how she wanted a home and security. “I wanted a bed of my own and to know where I was sleeping each night,” she explained.

“What steps did you take towards getting a better life?” I inquired.

“I went white.”

The words hung in the air, heightening my awareness that I, a privileged P?keh?, sat at her table. I wondered how I was selling her short.

Louise continued, “I knew I had to leave if I was to survive, so I hung around with my white friends. When I left, I got away from a lot. Not just the cigarettes. I made sure I fitted in, and it was my ticket out.”

“Would you say fitting in saved your life?” I asked her.

“Definitely, I had to get away from the other lot.”

She watched me, seeming to wait to see how I would respond. I reflected on Louise calling her own people “the other lot.” I could hear the racist discourse ringing in my ears, inviting the harshness to be because they were M?ori, rather than taking into account the devastating effects of colonisation on generations of M?ori people.

“Could you help me understand a little more of what you mean when you say ‘the other lot?’” I inquired. (14)

“M?ori,” she replied, sounding like she was repeating something rather than truly believing it.

Louise waited, her body tense and alert.

“Colonisation has been very hard on the M?ori people,” I ventured, thinking of the decades of injustices M?ori had endured. “Do you think that the drinking and smoking and what you went through was because they were M?ori, or do you think it could have been because of the hardness of life and what it did to the family?” (15)

Louise’s shoulders dropped and she was quiet for a moment. “I’ve forgotten who I am,” she rasped sadly. (16)

Before I could respond, she ploughed on, seeming to contradict herself with what could have been growing pride in her voice. “I do all the old stuff: knitting, cooking, sewing, carpet-making. I paint.”

“Are you a creative person?” I asked her, smiling. “And the garden?”

Louise enthused about her garden.

“Are there threads of who you are in the old arts?” I asked her.

Louise considered. “Yes, I think there are.” She seemed to meditate on this for a moment, then looked me in the eye. The corners of her mouth crinkled up as a smile formed briefly. “But then I forget,” she added, looking shamefaced again.  

“Colonisation can do that to people…get in the way of being connected to who you are… Not surprising when there were laws trying to do just that,” I said sadly. (17) I reflected on the children who had been beaten in school because of laws that forbade them to speak Te Reo M?ori and the efforts to suppress M?ori cultural practices. “There can be a heavy cost when you are forced to turn ‘white’ to survive. Would it be OK to ask if there has been a cost for you?” (18) I thought about what it might be like to forget who I was. Emotion stirred in my belly.

“I don’t have a belonging,” Louise confided. “I feel I’m a betrayer.”

Deep sadness leaked into the air around us. It hovered, seeming to draw us together. We sat in silence.

After a time, Louise gradually seemed to recover, and in a bright voice she said, “You know I’m Scottish. I identify as Scottish.” I looked into her beautiful brown face, with its broad nose and dark brown eyes, framed by the sweep of almost-black hair.

I responded then, not as I would to a P?keh? with a question, but in the way of M?ori who connect through the people and the land they come from, whanaungatanga (19). I adjusted my phrasing according to shades of tikanga M?ori (20) and said, “The people I come from are Scottish. They belong to the clan of Callum. They come from the highlands of Scotland.” My intention was to tell her we were connected, and in telling her this and in the way I phrased it, I wanted to say, “I also acknowledge your M?ori side and it is beautiful,” though this was implicit.

My disclosure resonated with Louise immediately. Laughing, she jumped out of her chair and rushed off to gather photos of all her grandparents who had died long ago. She introduced me to her Scottish grandmother, whom she loved dearly. “She taught me the old arts,” Louise explained.

“Were you a willing learner?” I asked her.

“Yes, I took in what I wanted and spat out what I didn’t.”

“May I ask what you value about your M?ori side?” I inquired, appreciating that the photos were of both sides of her family.

“M?ori love fully and unconditionally, no questions asked, no grudges.”

“How do you love?” (21) I asked, hoping to make visible a thread of whakapapa. (22)

Louise proudly announced, “I love like a M?ori!”

Warmly, I responded, “Can you tell me some stories of how you show that knowledge of loving?” I wanted to strengthen Louise’s description of herself as having the ability to love fully. It stood out in contrast to her sense of not being worth chemotherapy.

Louise was off, taking centre stage. I listened, grinning, delighted by her rich and lengthy stories of such loving. I then asked her questions of how she came to learn such loving and we tracked knowledge of love through the generations in some long-overlooked stories.

“Who in your life knows that you have this knowledge and way of expressing yourself?” I asked.

“All my friends!” Louise responded enthusiastically.

“Could it be that you have captured aspects you value from both worlds with your fitting-in ability?” I asked, after a moment’s reflection. Louise embraced this possibility seemingly for the first time. Her enthusiasm bubbled. We went over her mothering and loving of her children, with Louise adding details such as “…but the car is warranted.”

“Could it be you are not a betrayer if you’ve made the best of both your M?ori and P?keh? sides?” I slipped in the word P?keh?, the M?ori word for non-M?ori, to give weight to M?ori knowledge. “You’re right, I’m not,” she told me. Then, as she thought about it, her voice firmed. “No. I have been clever; I haven’t got off-side with anyone. I have danced on both sides of the fence.” Louise smiled fully at me. It was a beautiful sight.

Smiling back, I continued, “If you were to think of yourself as a person who can dance on both sides of the fence, what difference might that make to how you are living your life?”

“Well, just everything,” she exclaimed exuberantly. Idea after idea quickly followed.

“If this ability you have to dance in two worlds was one that you kept in your mind, what might it keep you in touch with that is important to you?”

“That I’m OK. Sasha, it’s going to change my life!” Louise’s joy once again spilled over. I was overwhelmed. How generous she is, I thought.

“Do you think it will make a difference to how you live with cancer?” I asked.

A little later, I started to draw the conversation to an end, mindful that we still had more to talk about.

“Sasha, I like this talking,” Louise exclaimed, with bouncing joy. “Today I discovered I’m not a liar!” (23)

I drove back to the hospice with sadness stuck to me rather than her happiness. All I could think of was Louise…a M?ori in a sea of P?keh?. I thought of the times when I have felt apart, out of step, disconnected and the only one. I tried to take myself there, but I knew it was not the same. When I arrived back at the hospice, I wondered what I might have missed, what I didn’t ask. Later, as I reflected with Niwa, my M?ori colleague and friend, I was reminded of the bridges that friendship, love, and respect can provide.

A few days later, I heard from the nurses that Louise had decided to have treatment for her cancer. Louise later explained to me, “I felt worth it after we talked.”

When Niwa and I met with Louise and her family a few weeks later, we heard the good news she was improving. A short time of respite from the cancer beckoned.

Postscript

This story illustrates one way a counsellor might go about such a conversation. It is not the only way to respond. I carry the knowledge that I have many blind spots, especially in conversations that are cross-cultural. I am also aware that I am the recipient of the kindness and generosity of the people with whom I meet. This story does not represent a “right way” to practice but rather is written in response to a question I ask myself: “What does my commitment to the principles of Te Tiriti O Waitangi (24) look like in practice?”   

Notes

(1) For those readers interested in the use of stories to learn or teach narrative therapy see Carlson et al (2018) and Heath et al (2022). For additional examples of stories illustrating narrative therapy see Epston, 1989; Heath, 2015; Ingamells, 2014, Ingamells & Epston, 2016; Pilkington, 2014; 2016; 2021; 2022.

(2) This story was written with the permission of the person in it. All identifying information has been changed.

(3) In Aotearoa New Zealand, M?ori have a higher incidence of lung cancer and poorer survival rates than P?keh? (non-M?ori. A number of barriers to early diagnosis and treatment have been identified including access to care, engagement with specialists, communication with specialist services, and lack of culturally appropriate services (Kidd et al, 2021). Even though Louise’s lung cancer was incurable, chemotherapy would offer her the chance of improved quality of life and an extended life span.

When someone responds in ways that others don’t understand, it is common for judgements to be made from a position of “knowing best” what is right for that person. I find it more helpful to be curious about another person’s world and to try and understand what is important to them. I also want to learn what they are taking into consideration that matters to them and is restraining them from taking a particular course of action. For example, what was Louise concerned about or prioritising that she had chosen not to accept chemotherapy? Often, when I have fully inquired into what matters to a person and what they are weighing up, their decision-making process and reasons becomes clear. At other times, the questions I ask can lead them to reconsider their decision and take another path. (See Chochinov, 2022)

(4) A kete is a basket usually woven from flax. M?ori words are in common usage in Aotearoa New Zealand. I have chosen to leave such words in this text out of respect for the person in the story, and to uphold the mana of Te Reo M?ori (the M?ori language).

(5) My intention in asking this question is twofold. I wanted to get to know Louise aside from the difficulties she was living with in ways that dignified her and brought forward her preferred stories of who she was. I also wanted to create space for culturally respectful ways of getting to know each other without assuming how she might wish to go about that. A broad question such as this one creates space for Louise to answer in ways that fit for her. In some instances, I may ask a person if there is a particular way they wish to begin, in order to create space for karakia (a ritual chant or prayer) or any other ritual that may be meaningful to them. Louise’s talk and refusal of cultural support led me to think such an invitation might be uncomfortable for her. I therefore held back on this occasion knowing I could raise it another time.

Building a relationship in ways that honour and create space for possible cultural identities a person may hold is important, especially if that culture has been oppressed. Such respect has effects on what kinds of conversations are made possible and can open areas that are often overlooked. For example, acknowledgement of tikanga M?ori (M?ori cultural processes) can underpin the engagement of M?ori in treatment (Kidd et al, 2021) and can be significant in generating a relationship in which stories of suffering can be told.

It was unusual for me to have this first meeting with Louise on her own. (It was Louise’s decision to do so.) I usually meet with many different constellations of families and most often see someone who is unwell with at least one other member of their family/wh?nau. Louise introduced me to her family after this conversation and later brought different members of her wider wh?nau/family in to see me when they visited from other parts of the country.

(6) The people Louise was descended from. For some M?ori, this is an important part of forming a connection and getting to know each other.

(7) This was a significant deconstructive question in our conversation. Deconstructive questions pull apart the threads of an idea so that a person can examine them. When we take up a stance of curiosity and ask a person about the particular meaning of common words and ideas to them, new therapeutic directions can open up.

(8) As I learn more about Louise’s life, I am listening for how she goes about what is important to her and whether that way of living expresses Aristotelian “virtues” that she values, such as for example; generosity, compassion, kindness, courage and love. I gather more stories of these expressions of goodness that are valued by Louise and these stories make up the backbone of the re-authoring process (White, 2007). I am mindful that ideas of what is important and considered virtuous sit inside cultural frameworks. Such themes of what people are engaged with in their life, and the virtuous ways they go about what engages them, are called “narrative values” by the philosopher Todd May (p. 73, 2015). May says it is these stories that can give a person a sense of living meaningfully. Such identity stories that describe valued qualities of a person are very helpful at the end of life. Not only do they lend meaning to a person’s life, but they offer a way of responding to illness, treatment and dying that is not reliant on a well body. They can give a person a sense of agency at a time when they may be experiencing a lack of influence over their life (see also Pilkington, 2022).

(9) Ideas that position a person who is unwell as “only receiving” can lead them to feel a burden on others. I often inquire in detail into how a person receives the care of others and the experience they generate in the carer with the intention of highlighting the reciprocity in the relationship. The way we receive can give another person an experience of themselves as generous, kind, significant, and worthy for example.

(10) Moana Jackson vividly describes the processes of how colonisation robbed M?ori of a sense of home in their own land and what was lost. “When you take away the whenua from a people who regard themselves as tangata whenua; when you take away their ability literally to touch the mountains; if you limit their ability to dream their own dreams; if you take away the earth upon which they stood with love; then you render them homeless in the most complete sense (Jackson, 2022, para 25).” (Whenua means land and tangata whenua means people of the land.)

(11) T?puna means ancestor in the M?ori language.

(12) During the depression M?ori were harder hit than P?keh?. M?ori were often the first to lose work and were paid lower unemployment benefits than P?keh?. The situation with benefits was only rectified in 1936 (Waitangi Tribunal, 2004, p. 659).

(13) I cannot assume I know what “a better life” means to another person.

(14) My intention in asking this question was to make the racist discourse visible so that we could examine it together.

(15) Note the way I scaffold my question with a statement. Louise immediately recognised how I was positioning myself and responded. Consider the harmful impact if I had let the moment pass without addressing such an idea and one that included Louise in its judgements. We could ask, what was made possible in the conversation following these moments when I sided with her and her wh?nau against racist discourses?

(16) This is an example of how meaning can be lost in translation (Mutu, 2004). When Louise referred to who she was, she was not speaking of an individual internal construct of self but a relational self. Included in who she understood herself to be were her connections to her t?puna, her wh?nau, the whenua (land), and moana (sea). In this conversation, Louise is considering the elements of whanaungatanga that she wishes to be connected to and that have been disrupted by colonisation. I, in turn, am referring to a relational self when I reflect on what has gotten in the way of her connecting to who she is. When I asked my colleague Barbara O’Loughlin of Marut??hu and Ng?ti Hau?, to describe her understanding of who she was, she answered me, “I whakapapa to the maunga (mountains), to the moana (sea), the awa (river), to my t?puna, to my whanau and to te ao M?ori (the M?oriworld), (personal communication, November 24th, 2022)”. There is no “I” or “self” t

Therapy as a Means of Balancing Loss with Acceptance

Posted on by Psychotherapy.net Team

Arlene felt dismayed by the arrival of her 71st birthday. “It’s not the same as when I was young and carefree, now that I’m getting older,” she said during a psychotherapy session at a nursing home. She has a long history of schizophrenia with mild autistic features, obsessive features, social anxiety, and a chronic yet stable blood condition. Arlene mostly stays in her room, wears hospital gowns, and dresses only on rare occasions, such as when a family member takes her for a shopping and lunch outing.

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Nurses point out to me that she sometimes refuses her meals or her medications. “I always take my medicine if I know the nurse who is giving it to me,” Arlene said. When approached by a new clinician or caregiver, she might clam up, make few or no remarks, or raise her voice and order the person to leave her room, due to paranoid thinking. Arlene clarified to me that she was not purposefully avoiding eating, and that she had no intentions of harming herself or worsening her medical condition. “I’m embarrassed to say it, Tom, but it’s my teeth. They’re broken, you see, and it can hurt if I eat something tough. I just look at the food they bring me, and right away I know if I can eat it or not,” she remarked. “Oh, no, I don’t want them to know about my problem with my teeth.”

After further discussion, though, she agreed that it might be helpful if her care providers understand the reasons for her occasional avoidance of meals. Arlene allowed me to speak with other team members at the facility, and then worked with nursing and speech therapy on the types and textures of foods she might better tolerate and enjoy, but she did not want to have dental care.

Therapy as a Road to Acceptance

In psychotherapy one day, Arlene said, “I thought I was depressed because I’m stuck in a nursing home, and that’s true. Then I thought I’d be happier if I went to a different nursing home, but then I would miss my nurse Jane and my aide Jamie, and the other people and things I like here. Even my fan on the table there, I love that fan. So, I decided to look around and notice the things I do like, and let it be good enough.” I spoke with Arlene about the wisdom of her idea, and about ways we might seek to implement that outlook in her daily life.

Arlene had touched upon a wise and simple conundrum of human life. If you substitute the words nursing home in the above quote with family, marriage, relationship, school, home, job, car, town, etc., you notice the universal applicability of the idea of letting what one has be good enough. Why is it so hard, so much of the time, for many of us to simply look at the things and people we do have in our life and let it be good enough? Is the purpose of psychotherapy always to aspire for more than one already has, or to accept more reasonably and gratefully the people and things and abilities one already has?

Many clients I work with in nursing facilities refer to the well-known Serenity Prayer, and some post it on the wall of their room, as they strive for serenity, courage, and wisdom. The ability to distinguish between what can and cannot be changed might be impacted by cognitive deficits, as well as by psychological denial, or simply the anguish of tolerating an unacceptable situation that must be borne.

Some of the clients I work with in nursing homes suffer from severe medical illnesses or major disability conditions, in addition to psychiatric and mood disorders. They might understandably wish for a return to how things once were in their lives, yet not be able to attain those wishes.

Martine, for example, asked a hundred times why she could not go home from the facility, and a hundred times staff and her husband, Mike, answered her questions with careful explanations of her current conditions and needs (dementia, incontinence, fall risks, bipolar illness, and emotional dyscontrol), yet to no avail, as she would persist in the ineffective mental loop of questions and refusals — or inability — to absorb the answers.

Psychotherapy did help Pamela come to tolerate and accept her needs for daily care at the nursing home. She initially suffered a depressive reaction to the loss of her home, her former roles, and a reduced sense of control over her life. But over time she came to recognize and reconcile to the situation as it was, rather than as she might wish it to be. “As long as I know my kids are okay, I can be okay with this place,” Pam said.

Walter, who is debilitated by the effects of Parkinson’s disease, had suffered many losses in his life and was now learning to adapt to residential care. “I’m lucky to have what I do have. It’s not as wonderful as what I did have before, but I’m still lucky,” he said.

A Requiem for All That Was Lost

Education about medical and psychiatric conditions must be balanced with emotional support to assist understanding and tolerance of the knowledge, and guidance to learn to adapt to changes and limitations.

Many clients focus intently on What This Isn’t. “Living in a nursing home, being dependent on others for daily care, isn’t what I want, what I expected at this time of life or what I can easily tolerate,” they might say. All those things, I point out in therapy, may be true, but intense and sustained attention on the disappointments might simply magnify the realistic distress associated with the situation. To help moderate some of that distress, I therapeutically suggest attending as well to What This Is. While this is not home, and the others are not family, this situation is safe, a place of shelter, with meals, medicine, nursing care, rehab, and some socializing with others.

During a recent therapy conversation with Arlene, I referred to her prior remarks about letting her situation be good enough. “Oh, I said that? I don’t remember,” she said. Progress in therapy with my clients might involve small steps towards goals, or might simply be aimed at sustaining reasonable stability, depending on the disorders and capabilities of the nursing home resident.

Therapy is sometimes provided to persons with fully intact mental and physical capabilities, yet other times psychotherapy is needed to help individuals with varied degrees of impairments and functional limitations, who still need to find ways to cope, tolerate losses and limitations, and still be themselves — even under adverse and challenging conditions.

Meaning and a sense of purpose and security are needed not only by those most self-sufficient, but by all people — even, or most particularly, those groping their way through circumstances they don’t want yet cannot overcome. Psychotherapy can provide a relationship for addressing those existential human needs.

Sometimes psychotherapy can be viewed as striving for the highest and best of human capacities. Yet it can also be a humble undertaking, joining in the depth of troubles to help someone get through a day that will be difficult for them.

Questions for Thought and Discussion

How does the author’s notion of acceptance resonate with you personally? Professionally?

What might you have said to Arlene, or the others mentioned in this essay when they expressed their losses?

How do you work with elderly clients around loss and acceptance of “what is?”   

Psychotherapy With Non-Verbal Clients: Blending Empathy and Flexibility

Posted on by Psychotherapy.net Team

Psychotherapy with Non-Verbal Clients

Hello, Jane.

My name is Tom.

Can you hear me? Blink once if yes, or blink twice if no.

One blink.

Is your name Jane?

One blink.

Is my name Tom?

One blink.

Is my name George?

Two blinks.

Is your name George?

Two blinks.

Jane is fully paralyzed, and can only communicate by use of eye blinks — one for yes, and two for no. Her yes/no responses had been tested by the speech therapist and were deemed to be reliable. By responding to a series of my comments and questions, she could indicate her answers, and gradually build up a conversation about her thoughts, feelings, and concerns.

Consequent to a brain stem stroke, Rachel became paralyzed from the neck down. Her brain functions are intact, and she makes facial expressions, but cannot speak or move her body or limbs. Rachel communicates with a clear plastic board with black alphabet letters and numerical digits. I hold it up and watch her eyes carefully and methodically scan the board, and then say aloud each letter she selects by looking at it, as she builds words and sentences. Rachel can have thoughtful and meaningful conversations in psychotherapy, or with others — if someone is willing to make the effort to use her method of communication. In our first conversation Rachel communicated, “We should do staff in-service training, Tom, because they don’t always use my letterboard.”

Roger sustained a severe brain injury, and he was only able to move his right thumb, yet he would lift his thumb once for yes, and twice for no, and with that method, Roger could generate basic communications.

Doris was deaf for most of her life and was a skilled signer and reader of lips. She came to the nursing facility after a stroke. I don’t know how to sign, and I wear a mask at the facility, so I would write my questions and comments, and Doris would read them and give verbal responses.

Mark had been in a persistent vegetative state after a brain injury. He eventually made a surprising recovery, regained his speech, and moved about in a wheelchair. Mark explained to me that during the period when he was outwardly unresponsive, he had been aware of others speaking around him, yet he could not let them know. During that period, he also experienced an exact recurring sequence of twelve dreams, which he was glad to now be able to share with me.

Combining Empathy, Creativity, and Flexibility in Psychotherapy

In psychotherapy, I commonly attend to the specific content of what a client is saying, as well as what may be left out or avoided, what might be hinted at or signaled indirectly. I listen to the tone and pace of a client’s speech, and to gestures and body postures that also communicate meanings. I follow the attention of the client, how one establishes or breaks contact, and if the client is speaking directly to me as they search for new understanding or might be repeating comments they have made to others, or even if they might be speaking to an internal audience more than to me. I pay attention to what the client inwardly attends to and ask questions or make comments to guide their attention to what they might overlook, minimize, or avoid. This approach becomes more critical when working with clients like these with medical or disabling conditions that affect their ability to communicate verbally.

While practicing psychotherapy in nursing facilities, I might work with a client with intact cognitive and language skills, or sometimes with someone with a brain injury or a neurological condition. The individual might even be a non-verbal communicator, which as I have learned, does not preclude meaningful, empathic communication.

Some of my clients use non-verbal methods of communicating such as gestures, or a letter board, or an electronic device for spelling or voicing their typed comments. I may need to extend my patience and concentration when working with a non-verbal client. If an individual can only offer yes/no responses, it is important to clarify and confirm the accuracy of their responses. When documenting the conversations, I might state that I said or asked this, and the client indicated or selected that to limit assumptions or misunderstandings about precise communication with the client.

When working with a non-verbal client it is, ironically, the non-verbal communication that is lessened, as the client and I are focused more on the concrete words or meanings being generated than on the manner of communicating.

Social communications are an essential human need. A reduced ability to communicate or the loss of speech can be profound, and when added to an acquired disability condition, communication can be that much more difficult, especially between therapist and client. When a person most needs to talk about their situation, they might be unable to speak, or quite limited in their ability to communicate — if others do not effectively assist their abilities with some augmentative type of communication method. A person might lose the ability to verbalize speech, yet they do not thereby lose their need to communicate. Psychotherapy with a non-verbal client is possible yet may require adaptation of methods, therapeutic approach, and attitude.

***

I have been especially moved by the challenges faced by people with one or another barrier to ordinary human communications. I feel proud of the courage these individuals display as they grapple with enormous communication problems — those that others might overlook.

Some clinicians and health care providers might think it is not effective to attempt psychotherapy with significantly disabled persons or clients with an absence or impairment of speech. But my clients have many times expressed their appreciation for being helped to develop and refine methods of communication through speech therapy and psychotherapy.

It has been important to help my clients think about and prepare ways they might more successfully communicate with others, and not only with their therapist. For example, Rachel could have a card posted in her room or attached to her wheelchair that explains her need for help to communicate, and brief instructions for how to help. Or I might coach a client to practice sharpening the point of their messages so they more quickly convey their needs or requests before a listener might lose patience and end an interaction.

Psychotherapy can still be a dialog even when it is not a typical verbal conversation. A client can still be helped to find and use their personal “voice” even if it is not a spoken one.