Kathryn Mannix is a 59-year-old palliative care doctor with thirty years of experience in her field. Her first book, With the End in Mind, traces the stories of people in all walks of life who are preparing to die. She believes there to be a modern-day conspiracy of silence around mortality that has turned dying from an everyday experience to a medicalised procedure, to be feared and culturally denied. She argues for reclaiming an understanding of death and regarding it ‘not just as an unspeakable taboo but as a natural, peaceful thing’. On publication, her book became a Sunday Times bestseller and has been longlisted for the Wellcome Book Prize 2018.
Arifa Akbar: You begin this book with the experience of witnessing your first death, as a medical student at the age of eighteen in the back of an ambulance (you check the dead man’s heartbeat because he looks as if he is just sleeping). What took you from that moment to specialising in palliative care?
Kathryn Mannix: That moment was revelatory because of the lack of ceremony around a busy A&E doctor certifying a death; I had somehow expected that there would be a sense of profundity, and yet it was simply mundane.
As I progressed through training, I noticed that doctors were mainly focused on the physiology of their patients, whereas nurses attached more value to ‘whole person’ care. For a while I wondered whether I had chosen the wrong profession. But it was while working as a student, and later as a very junior doctor, alongside nurses who were offering comfort and companionship to seriously ill patients that I learned how to ‘be present’ at the bedside of a dying person. The move to palliative care came several years later.
AA: You have said that you began writing about your encounters and conversations with people at the end of their lives decades ago, before you knew you would write this book. Did you write as a form of therapy, or a way to gain insight, or clarify your own thoughts/feelings around death?
KM: I wrote about situations that moved me, sometimes feeling joyful and excited by medicine and sometimes to ponder situations that were troubling or sad. The writing helped me to reflect, to notice patterns in people’s behaviours and responses, and to find clarity amongst the many layers of medical, emotional and interpersonal complexity of a very busy job and a seemingly endless learning curve. Some of the reflections are about patients sick enough to die, but births, lives transformed by treatment, family dynamics and staff relationships also figure.
The notes are brief (I limited myself to a single A4 sheet) but they instantly rekindle the time of writing. In retrospect, perhaps this was my apprenticeship for writing as well as for medicine.
AA: There is a moving story of a woman called Sabine who is dying of bowel cancer and asks to speak to the leader of the palliative care team. She tells him she is afraid to die badly; he responds by describing the process of dying. It is his response to her fear, and unexpected – by Sabine and by you. He explains its aspects, from sleepiness and dips into unconsciousness to changes in breathing, and it helps Sabine feel less fearful and more equipped for the experience. Why don’t more doctors do this? You talk about the conspiracy of silence and the cultural taboo in speaking about death; are some doctors part of this conspiracy?
KM: Unless and until a doctor sees this conversation modelled, I suspect that the possibility of describing dying simply doesn’t enter many medics’ minds. Also, few doctors get to see enough ‘normal’ deaths: their role in hospital is generally to prevent death by escalating medical and/or surgical interventions. Nurses, more than doctors, attend the bedsides of the irremediably dying.
It’s hard to speak with conviction about normal dying until you have seen it enough times to appreciate the pattern of events. I’d like to invite medical schools to be more forthright about death as something all doctors should understand and be able to recognise, describe and manage.
AA: Do you think we are seeing a gradual opening up of discussions on death? You mention Atul Gawande’s book on mortality as one example, and the growth of death cafes. Are we getting better at talking about it, and if so, why?
KM: When twentieth-century medical advances first made it possible to postpone dying, those saved and their families were still familiar with dying. As these treatments became taken for granted, the seriously ill sent for an ambulance instead of anticipating death at home. Thus, people lost familiarity with death and, indeed, came to expect and even demand that death be ‘defeated’. This has led to the situations described by Gawande, where escalating, intrusive and sometimes inappropriate treatment complicates and distorts the dying process.
As people become alarmed at ‘medicalised dying’, many wish to record their preferences for less intervention and more choice about their options. However, people largely remain unaware of the usual pattern and progression of normal, uncomplicated dying. That was why I wrote With the End in Mind.
So often, at a deathbed, once the final breath has been exhaled, someone will ask, ‘Where does all that love go? Surely the power of all their love can’t just stop?’
AA: How have you prepared for your own death?
KM: Like most people, I’m hoping to live to see my children grow up and flourish and to live healthily into old age. Despite this, I have discussed aspects of my dying with my family. I carry an organ donor card, and I have told our children that I would wish their dad to remarry if he chooses. My funeral should help my survivors rather than be a specific format. My husband and I made our wills years ago, and nominated guardians for our children.
Beyond that, it’s hard to plan until an illness that may kill us declares itself. When people want to plan ahead, I’d counsel making general plans early (and discussing them with the people who matter to you) and refining the plans as your health deteriorates, advised by someone who understands the way your condition is likely to progress. Some solicitors offer to draw up Advance Decisions, but the nuances of medical deterioration really require medical expertise to draft decisions in a meaningful way.
The same applies to appointing someone to act on your behalf if difficult decisions about your care need to be made and you are not well enough to state your view. Your appointee needs a detailed understanding of your values and attitudes to, for example, use of blood products, drugs of animal origin, resuscitation, escalation of treatment: when would you draw the line? You can’t tell them every answer to all possible scenarios, but you can give them enough understanding of your views that they will be able to answer doctors’ questions using your values as the basis of their answers.
The dying demonstrate a disinterest in conflict, and a compassion for those around them
AA: The people whose stories you tell in the book do not ever talk about God or an afterlife. Did you edit out these discussions? (You have said that you didn’t want to discuss religion in the context of end-of-life as it can be polarising and unhelpful.) Could you say if some patients do talk about this aspect and if it is helpful to them?
KM: People’s spirituality manifests in different ways. Where this is a religious faith, then people do discuss God and their hopes, anxieties and desires for an afterlife, as well as measuring their personal worth against the constructs of their faith. I’ve met people hopeful for heaven, fearful of hell, anticipating reincarnation, angry with God, or leaving their fate entirely in Divine hands; I’ve met people with no belief and at peace with the idea of oblivion, and others feeling sad at the ending of self-awareness; I’ve met people who have lost their longstanding faith in the face of the perceived injustice of illness; I’ve met people who discover a faith amidst the emotional storms of terminal decline.
AA: What is your own view of life/consciousness beyond death? Has this view been formed, or changed, by talking to people at the ‘edge of life’?
KM: I remain perplexed and wondering. I keep an open mind. So often, at a deathbed, once the final breath has been exhaled, someone will ask, ‘Where does all that love go? Surely the power of all their love can’t just stop?’ And I sit with them, in awe and without answers.
Whatever the professional’s personal beliefs, we are there to support patient and family, not to proselytise or promote a personal view.
AA: What can we learn about how to live from the dying? (You talk of a changed attitude in some who know they have limited time – a sense of enjoying the present moment and feelings of compassion.)
KM: Mindfulness is in vogue: resting entirely in the moment and relishing its presence. The dying seem to come to this spontaneously: to relish tiny moments, like a good cup of coffee or a special piece of music; the smell of cut grass or the sound of the rain; rubbing hand cream into their fingers; stroking a pet. We can learn to appreciate these simple things, to encounter them as though for the last (or even the first) time and truly explore them for that brief moment.
The dying also demonstrate a disinterest in conflict, and a compassion for those around them. Lying below the emotional storms of life seems to give them a safe harbour – another lesson we can learn.
I think having a sense both of our physical fragility and of our astonishing emotional resilience has made me appreciate the daily wonder of being
AA: You have used cognitive behavioural therapy with end-of-life patients and you explain how it can be incredibly powerful – for breaking cycles of panic, for lessening depression, etc. How can the terminally ill access this service? Is it available to everyone in a hospital or hospice?
KM: I have loved CBT as a palliative care practitioner. It’s a model that teaches the patient to become their own therapist; I am a fan of patient empowerment, so CBT suits my therapeutic style.
There are not enough CBT therapists in palliative care, and this was why I developed ‘CBT First Aid’ for palliative care staff to fill some of the gap by using CBT techniques within their usual practice. Training is still being run in some areas, and many First Aiders go on to full CBT Masters-level training.
AA: What are the emotional and psychological effects of working in palliative care for so long? Do you think you value the life you have more as a result, or feel its fragility more keenly?
KM: I get asked this a lot, and I still don’t have a good answer! Palliative care has been the most rewarding combination of clinical detective-work, therapeutic challenge, emotional fulfilment and occasional heartbreak. It has suited me, and hasn’t felt over-demanding – although it has certainly eaten into my family and personal time down the years.
I think having a sense both of our physical fragility and of our astonishing emotional resilience has made me appreciate the daily wonder of being. It makes the special things more resonant, and it (mainly) gets the irritating things in perspective. I laugh a lot. I think palliative care has taught me the value of joy in the tiny things, all around us, every day. What a gift.
Kathryn Mannix’s book, ‘With the End in Mind: Dying, Death and Wisdom in an Age of Denial’ is published by William Collins