When I started work as a hospice counsellor, I had limited experience of working with death and dying. My psychodynamic counselling diploma included modules on endings and loss, but always from the perspective of surviving the ending. I looked for some relevant training on the subject – and found a plethora of bereavement trainings. But, again, from the perspective of the person who is bereaved, not the person who is dying.
In her book, With the End in Mind,1 Kathryn Mannix describes how the experience of ‘ordinary dying’ has been lost to us over the past few decades, to the point where the inevitability and language of dying is no longer understood.
As a society, we have become remarkably inept at talking about dying – and it seems we mirror this in the counselling profession. Perhaps, as Sigmund Freud said: ‘We cannot, indeed, imagine our own death; whenever we try to do so we find that we survive ourselves as spectators. The school of psychoanalysis could thus assert… in the unconscious every one of us is convinced of his immortality.12
After nine years of working in a hospice, I am less convinced of my immortality. Hearing clients’ life stories makes you imagine your own end-of-life tale. And working alongside the sights, sounds and smells of severe illness forces a stark confrontation of the body’s limitations. If you work therapeutically with those at the end of life, the ability to think about your own death is crucial.
The readiness to think about your own death forms part of Gamino and Ritter’s3 concept of ‘death competence’, which they define as a ‘... specialised skill in tolerating and managing clients’ problems related to dying, death, and bereavement’. They describe how there needs to be both a cognitive competence, based on academic understanding, as well as an emotional competence that relies on the counsellor’s ability to manage their own death-related feelings, while maintaining therapeutic perspective.
My death competence has come through the experience of working in a hospice with a variety of clients, from a young person in their 20s to a brilliantly engaged man in his 90s. I have also encountered a range of illnesses and symptoms and, of course, the different spiritual and cultural expectations around death.
I have combined my client work with an unflinching exploration in personal therapy of my own feelings around death and dying. I also have a robust, but supportive, supervision relationship.
The learning from therapy and supervision is available to all, but the lessons of working with end-of-life clients are still not widely taught. Maybe, as Kathryn Mannix says: ‘It’s time to talk about dying.’ In the following sections, the examples are all real people, but names and details have been changed to preserve anonymity.
Find the hope
When a person comes to counselling, it is usually with the hope of making life better – a hope that is shared by both client and counsellor. With a client who is dying, the counselling begins with the knowledge that they are not going to get better, at least not physically. What then is the hope?
Alice, a 72-year-old woman with motor neurone disease, was referred for counselling because she had become increasingly depressed and withdrawn. Alice’s husband had died five years earlier. They had never had children and she had no other family. Alice had previously been socially active, helping run lunch clubs for the elderly and volunteering in a soup kitchen.
When I first met Alice, her speech was already quite affected by her illness. I therefore had to concentrate hard to tune in to what she was saying. She told me how she and her husband had enjoyed a contented life together, and that cooking had always been her passion. She was an only child, whose parents were loving but always working. Alice had learnt from a young age to enjoy her own company and make her own amusement.
We explored the cruelty of her illness and how Alice felt about becoming increasingly disabled, with the possibility of needing to go into a nursing home. Alice was devastated by the thought of her future, but she was able to engage with it – and I did not feel it was the cause of her depression. Alice was also not scared of dying, as she had faith that she would be reunited with her beloved husband, who she missed very much.
As the sessions progressed, Alice’s speech became increasingly difficult. Her fine motor skills were now such that typing was not possible, so she would point to letters on a board. In one session, where communication was particularly slow, Alice wondered why I still persevered with her counselling, given how much effort it took to understand her. Her comment gave us an opening to explore our relationship. Why did I persevere? It was my job, of course, but perhaps I also cared about her, and perhaps I would miss her when she died.
Alice had friends who cared and would miss her, but they were all her age or older. Our work together introduced a new possibility: that someone would remember Alice and the story of her life for at least another generation. Our remaining sessions were spent acknowledging Alice’s grief at her perceived lack of legacy and creating a new idea of meaning for her life. In Alice’s case, the hope came from the relationship we had formed together and the confirmation that she had made an impact on the world.
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Finding the hope in the work is equally important for the counsellor. Our training teaches us to empathise and forge a relationship with our clients, often at the worst time in their lives. To form a meaningful connection with clients at the end of life exposes us not only to the client’s pain but also to the tremendous loss that we inevitably feel when our clients die. To find the hope in the work enables the counsellor to keep living while accompanying the client, and to stay alive when the client inevitably dies.
Dying to survive
Nothing stirs our survival instinct so forcefully as the threat of death. So, when you are working with clients at the end of life, you inevitably encounter the fight or flight response, combined with the powerful emotions designed to keep us alive, most notably fear and anger.
There can be a strong urge to react to or be overwhelmed by these emotions, especially when working within a multidisciplinary team that might have less psychological training. And that’s one of many reasons why good supervision is essential to keep you grounded and able to see the person behind the emotions.
Jim was a client whose referral came with a warning that he was an angry man, who could be verbally abusive; staff would only see him in pairs. Initially, the sessions with Jim were volatile, with rants about medical staff for a delayed diagnosis, or me for ‘not having a clue’. Each time, I would acknowledge Jim’s rage and express sympathy for how monumentally unfair it felt that his cancer wasn’t diagnosed earlier, which could have given him a greater chance of survival.
I wondered whether being angry – in fight mode – was in some way helping Jim stay alive. So I gently started to ask him whether his anger was a way of showing he hadn’t given up on his life. As Jim recognised that I was able to stay present with him in his anger, without cowering or retaliating, he was able to articulate more and shout less.
With Jim’s rage more manageable, there was space for other feelings to become conscious, namely Jim’s fears around being terminally ill and dying. Would he be in pain? Would he become incapable of looking after himself and have to be fed and toileted like a baby? Would he recognise when the end was near? What would the moment of death feel like?
No wonder Jim had been so angry; the anger had served as a defence to keep this overwhelming terror at bay. In the sessions, the fear filled the room and was visceral. Indeed, there were times when I had to remind myself to keep breathing and not be frightened of Jim’s fear, but to bear it and hold it for him. In turn, this allowed the fear to be thought about and not just felt.
Jim’s fear was too big to be thought about all at once, so we picked at the corners of the more practical elements, such as being washed and fed. I asked Jim to consider whether his body had been tenderly cared for when he was a baby and unable to physically manage it himself. I wondered whether Jim could imagine his body being tenderly cared for now, and who he would want to do it.
Some of Jim’s fears were less tangible, such as the fear of the moment of death and how it would feel. Again, we picked at the edges, by imagining where Jim might be at that moment and who else might be with him. Gradually, Jim got bolder in his imaginings and was able to think about how he would want his final moments to be, while recognising the probability that he would be unconscious long before then.
Jim was one of my early clients at the hospice and I learned a lot through our work together. He was still relatively well and engaged with his medical team with more ease when we ended our counselling. I saw him again, briefly, two years later, when he was admitted into the hospice inpatient unit for his last days. He died peacefully with his partner by his bedside.
The therapeutic frame is important, as it keeps the counselling safe and ethical. Gray4 describes how a good therapeutic frame should provide a consistent structure for the counselling work, and this is often achieved by establishing physical and symbolic boundaries.
When working with severe illness, however, the boundaries are often subject to real and necessary change. It is not uncommon for me to visit clients at their home or on a ward, to change session times to accommodate medical appointments or fit around chemotherapy schedules, or to vary the length of sessions, depending on the fatigue level of the client. But even if it might be necessary to renegotiate boundaries, it is still possible to maintain a therapeutic frame, enabling a safe therapeutic process.
Alan and I had been meeting at the hospice for his counselling sessions until his cancer made him too unwell to travel. I visited him at home for his next session and found him in bed, in what used to be his study. It was a small room containing a large desk and bookshelves, with the addition of a single bed, plus other patient-related equipment.
Alan was surprised I would visit him at home. He didn’t think the counselling could continue, as he was in bed and the only chair available was his commode chair. I noted that, although our environment had changed, he was still Alan and I was still his counsellor – and we could maintain our therapeutic relationship.
I also wondered with him whether my seat was somehow symbolic of the idea that the counselling would go down the toilet. He replied that his life had gone down the toilet. I gently probed as to why he was existing in this tiny, overfull room, when his house was obviously large. Alan said he didn’t see the point in adapting his house, when he had no idea how well he was going to be from one day to the next. I suggested to Alan that we continue his counselling at home, booking only one session at a time.
In the next few sessions, we explored what life was left for Alan now – and how much of it was in his control: his death was closer and very much out of his hands, but living in a cramped room that was not conducive to visitors was perhaps something he could make a choice about. We had some painful conversations around how much Alan’s wish to avoid the upheaval of adapting the house was also a wish to avoid adapting to the reality of his illness. By our last session, the desk and bookshelves in Alan’s room had been replaced with two chairs. Alan also had a special chair in the lounge where he could sit for a few hours during the day.
Changing the boundaries of the counselling to accommodate Alan’s change in circumstances helped him come to terms with the progressive change of his illness, and so enabled him to keep living until the end.
Attention to endings
Endings in counselling always require careful thought and preparation, but endings when working with death and dying require particular attention.
Elsie had outlived her original prognosis, which had sent her into a state of deep anxiety. After some challenging counselling conversations around control and feeling powerless against the unknown, Elsie was much calmer and had even started some palliative medical treatment.
Elsie described her counselling as a ‘lifesaver’, laughing at the irony of such a statement, and was upset that it had to end. I acknowledged how important the counselling had been to Elsie and how much it had helped her feel able to engage in life again. I wondered whether Elsie was worried that, if she stopped counselling, she would feel anxious again, and so in some way felt that the counselling was enabling her to live. Elsie agreed this was part of her worry, but she had also come to value the counselling relationship and was sad to let it go.
We were then able to consider whether the end of counselling was also a symbolic mirror, as Elsie was also facing the most final ending of all, namely death. We looked at the importance of experiencing a good ending, even if it wasn’t entirely her decision. We also discussed what constituted a good ending. We acknowledged it was sad and also daunting, and recognised there was a mourning in it for both of us.
A planned and defined ending isn’t always possible with end-of-life clients, as disease progression is not always predictable. Some clients want to continue until the very end, while others prefer to say goodbye when they know they are approaching death.
The ending can be difficult for the counsellor when a client dies; you might be left holding some of the unresolved sentiments and you will need to process your own feelings of loss. I still remember clearly my first client who died. Good supervision is essential. I also found it helpful to develop a simple ritual (a suggestion from my supervisor), which allows a symbolic ending and goodbye.
Society is increasingly inclined to place death in a medical context, limiting any common knowledge of the dying process. In the counselling profession, we also seem to shy away from the topic of death and dying.
I have accompanied many clients on their journeys towards the end of life, which has given me a comfortable familiarity with death and dying that is perhaps uncommon. There are complexities to hold in mind when working with clients who are dying. But working with clients at the end of their lives can offer great freedom – and enable some powerful changes to be achieved in a short time. On a personal level, it has also given me a humbling appreciation of my own life.
1 Mannix K. With the end in mind. London: William Collins; 2018.
2 Freud S. Reflections on war and death. New York: Moffat, Yard and Company; 1918.
3 Gamino LA, Ritter Jr RH. Death competence: an ethical imperative. Death Studies 2012; 36 (1): 23–40.
4 Gray A. An introduction to the therapeutic frame. London: Routledge; 1994.