Presentation to the Royal Society of Medicine Palliative Care section.
My first death was at the age of 17. I was working at Winchester hospital as a nursing assistant in 1988 and the ward sister asked me to spend my night shift with an elderly woman who was expected to die. She had advanced dementia and had suffered a stroke so that she was paralysed down her left side. She slept peacefully, occasionally moaning when she moved. As the night went on the ward sister bought me cups of tea so I wouldn’t have to leave my patient. At about 4.30 her breathing began to change, it slowed and became irregular. I called the sister who came over and drew the curtains around. I held the old lady’s hand and watched her silently and intently. She had no family, no friends left alive with whom to share her last night on earth. Her breaths were so quiet, I hardly dared breathe myself. At about 6am she stopped breathing. With the ward sister’s help we washed her and wrapped her in a sheet before the porters came to take her to the morgue. It was one of the most formative experiences of my life.
Sociologist Arthur Frank described 3 narratives that we tell about the practice of medicine.
The first is Restitution,
Restitution is the story we are familiar with from medical dramas – it’s the one we tell each-other in medical school. In the restitution narrative the doctor as hero rescues the patient from the disease and health is restored. Note that the patient is merely the field on which the doctor and the disease do battle. The restorative narrative of palliative care is one in which the heroic doctor relieves the patient’s suffering and death is dignified. In Winchester hospital that night I was part of a restitution narrative, I was simply sitting up all night with someone who was dying, but it felt heroic. It’s worth reflecting on our attachment to and desire for the restitution narrative, especially when things don’t work out this way.
When things don’t work out we have Frank’s second narrative, which he calls Chaos.
This was my grandmother in 1956. When she died I was 21 and half-way through medical school. I remember her vividly from very early in my childhood. I adored her. In the ‘30s she modelled for Vogue magazine and was always beautifully dressed. For the last 5 or 6 years of her life I barely saw her. The woman I knew and loved had Alzheimer’s disease, she was violent and psychotic. Physically she was incredibly strong, but her mind was completely gone and she needed specialist care. The last time I saw her she was sedated and couldn’t speak. It was extraordinarily upsetting, I completely withdrew from her for the last few years of her life and felt – and continue to feel guilty – for abandoning her, and my parents at that time.
Her son, my father, Peter pictured here at his 80th birthday party, saw the same thing happen to his father and his youngest brother, and has lived his life in fear that the same thing would happen to him. He has staved it off for as long as possible, but for the last 2 or 3 years the signs have become increasingly clear. He had enough insight to develop a deep depression which has been impossible to shift, but it’s now reaching the point where his insight along with his balance and his continence are failing. I’m not entirely sure I’m going to manage this any better than I did with my grandmother.
According to Frank,
“To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism.”
The chaos narrative presents the greatest difficulties for those of us whose job it is to listen. We are left with a sense of unbearable helplessness and if we cannot cope, we respond by withdrawing or running away. Some of us become doctors to deal with this helplessness, as one consultant psychiatrist writing about her own experience of mental illness says,
… some of us self select medicine in order to deal with our worst fears by helping those who present with what would be to us, intolerable illnesses, but by working on them in our patients we master some hidden angst.
Writer Jonathan Mann expresses clearly our attachment to restitution,
Yet most people who decide to become doctors respond to a deep intuition about life and their own lives. To become a doctor implicitly places us on the side of those who believe that the world can change – that the chains of pain and suffering in the world can be broken. For every medical act challenges the apparent inevitability of the world as it is, and the natural history of illness, disability, and death. Every antibiotic, every surgical intervention, every consultation and diagnosis becomes part of an effort to interfere with the “natural” course of events. Thus, at a profound, even instinctual level – because it precedes rational analysis – people become physicians to find a way to say “no” to disease and pain, and to hopelessness and despair – in short, to place themselves squarely on the side of those who intervene in the present to change the future.
But if a story can be told then it is not entirely chaos and in that there may be a therapeutic opening. The challenge is not to push toward this opening prematurely with our own restitution narrative. ‘The chaos narrative is already populated with others telling the suffering person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”, “it’ll be OK”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something”.’
How then can we honour suffering without imposing our own desire for a restitution narrative?
The final narrative Frank describes is ‘Quest’
“Quest stories carry the unavoidable message that the restitution narrative will, one day, prove inadequate. Quest stories are about being forced to accept life unconditionally; finding a grateful life in conditions that the previously healthy self would have considered unacceptable.”
“I couldn’t possibly ask Dr Brown, it would break her heart”
This wasn’t the first time I’d been put in this situation, but it doesn’t happen often.
“She’s known me for such a long time, I’d feel like I was letting her down”
I began to wonder if my own patients were having similar conversations with other doctors.
“She’s such a lovely doctor, and I’m sure you are too …”
She smiled a little to sweetly for comfort.
“You will help me won’t you doctor?”
“Tell me” I ventured, “why do you think you would be letting Dr Brown down?”
“Oh, she’s done so much for me, I couldn’t have asked for a better doctor. She’s literally saved my life. But now I’ve had enough, I’ve had a good life, don’t get me wrong, but I don’t want to go on forever, the ones I loved are all gone, and I don’t want to wait for another stroke.”
“Have you tried discussing it with Dr Brown?” I asked.
“I don’t think it would be fair to ask Dr Brown, I know her very well you see. She spent years looking after me and my husband and it was very hard on her when he died.”
“Do you have time doctor? I don’t want to keep you.”
I knew from the outset that this wasn’t a consultation that could be rapidly resolved.
“Jim was a lovely man – and he was very fond of Dr Brown as well. She was his doctor for years too. I remember when he was diagnosed how upset Dr Brown was, I don’t blame her, but I still think she blames herself for not spotting it sooner. You see, Jim didn’t like to bother the doctor. He and Dr Brown used to joke that he was just coming in for his check-ups so that Dr Brown could tick all the boxes so she could get paid. He used to tell her, ‘you can tell them I’m taking whatever pills you want – I’ll take ‘em if you tell me, except mostly when I feel like, but you just tick your boxes and make sure you get paid. You deserve it and we need you. And while you’re at it my colly-esterol is none of their business, but it’s whatever you need it to be and I’m giving up smoking and taking up cycling and you can put that down too. And if you need to check my prostate, well that’s ok an’ all, but if you don’t mind not right now, but just make sure you tick that box and say I’ve agreed to it. There’s much sicker than me that need you Dr Brown and I don’t want to be wasting your time’”.
There were tears at the corners of her eyes while she reminisced.
“It was funny really, he’d say that, about not wasting her time, and they they’d talk about cricket or politics for another ten minutes. It’s sad really, there are people who are really struggling who have to wait to see their doctor”.
I agreed with her, but was conscious of time and tried to steer the conversation,
“What happened with Jim’s diagnosis?”
“Oh well, he was feeling tired and weak for a few weeks and had been dropping things quite a bit, which wasn’t like him at all and I eventually made him go and see Dr Brown. But I didn’t go with him and I don’t think he really told her what was going on, but she did some tests and they came back all normal. He told her that he was OK and he didn’t want to make a fuss and so she didn’t do anything else for a while. Thing was they trusted each-other, if he told her he was OK and didn’t want any bother she respected that. I don’t think she could have done anything different. But he wasn’t himself. Then he had a nasty fall when he was out walking the dog. He broke his shoulder and when he was in hospital they did some more tests because there was something wrong with his muscles and they said that he had motor-neurone disease and he had probably had it for at least a year. I think that’s when Dr Brown felt guilty because it was about that long that he had been feeling weak. To be honest, she was fantastic after that, he hated for her to come around because he didn’t like the idea of wasting the doctor’s time, but when it was too difficult for him to come to the surgery she would come in the evenings or in her lunch-breaks.
They never really talked about death, I think they wanted to but were too afraid. I remembered once she asked him if he’d thought about it or made any plans, and he told her not to worry about it, ‘I’m much more interested in living,’ he would say and then ask her what she thought about the cricket.
And then one day he got all confused and we tried to call Dr Brown, but she had gone away on holiday, I remember because she called us back from Italy but by then he was in hospital and they were giving him all sorts and he didn’t last long, but it’s not what he would have wanted.
Thing is doctor, I don’t want any of that to happen to me, I don’t want to be any bother to anyone, blocking up a hospital bed, surrounded by strangers. I was just hoping you might be able to give me something, so that when I’m ready I can go into a nice deep sleep.”
Doctors often avoid difficult discussions about death to protect themselves. And patients – especially when they care about their doctor, avoid these conversations to protect their doctors too.To talk about death requires doctors to confront their own attitudes to death and be attentive to their own emotional needs including the need to be protected from conversations about death.
The experience of suffering is often one in which old friends disappear, in which others may be lost for words or uncomfortable hearing about sickness. Many patients become isolated and alone because their illnesses have become so overwhelming that they feel they have nothing left to talk about and they don’t want to burden their friends, or even their doctors, ‘who have troubles enough of their own’. We may be poor listeners because we ‘want to steer the person back to being the person they were before’ rather than the new person they have become.
In her essay, The Art of Doing Nothing, Iona Heath explains that in medicine, “the art of doing nothing is active, considered, and deliberate. It is an antidote to the pressure to do and it takes many forms.” She quotes Arthur Kleinman, the American anthropologist and psychiatrist, who says:
… empathic witnessing … is the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and give value to the experience. … This I take to be the moral core of doctoring and of the experience of illness.
Bearing witness by empathic listening is emotional labour. Any doctor who has felt tired or forlorn after spending time with a patient in chronic pain, understands the burden that we feel when our patients share their suffering. We know that this is hard work, indeed, compassion means ‘to suffer together’.
Emotional labour is of a very different quality to technical labour. The ways we teach the technical labour of surgery or pharmacology are not suited to teaching ’empathic witnessing’. Anyone who doubts the importance of these human skills should read the accounts of doctors who have experienced serious illnesses. Iona Heath again says what we know to be true,
‘I know I can see you through this’ is the commitment doctors can make to the dying when doing has become futile and even cruel. Simply being there and bearing witness is never futile.
Empathic witnessing is a practice that needs lifelong nurturing. Professionals need not only enough time to spend with patients but also regular opportunities to reflect and discuss the emotional and ethical issues that comprise this work. Narrative supervision is one way we can help with this.
I hope that by reflecting on and sharing my own experiences I will have more courage to bear witness and accompany my patients and my family up until the end of their lives.
Narrative Palliative Care: A Method For Building Empathy
The Inner Life of Physicians and Care of the Seriously Ill
Arthur Frank, The Wounded Storyteller
Arthur Kleinman: The Illness Narratives, Suffering, Healing and the Human Condition.
David Zigmund, Physician Health Thyself, The Paradox of the Wounded Healer
How to respond to the recently bereaved. DocMum blog.
Iona Heath, Matters of Life and Death