Dying Matters

This week, it’s Dying Matters awareness week and for the first time, prompted by the amazing Kate Granger via the wonderful tool of Twitter, I have joined the blogosphere. I want to reflect on death and dying and be, in some small way, part of the changing tide that aims to sweep some of the taboo away from the difficult yet inevitable conversations around death and dying.

I think about death a lot. Not because I myself am dying, or ill, or morbid, but because I am a general physician. I spend a lot of my working life looking after patients and their families at times of real difficulty. I have been training or working as a doctor for over twenty years, and the resilience and humanity of patients, families and staff never ceases to amaze me. It becomes particularly apparent during times of real crisis, and to witness it is one of the unsung benefits of the job I do and reaffirms my faith in human nature on a daily basis.

Throughout my working life, I have been involved with death in many different guises and in many different ways. In the last few weeks, I have sat in the outpatient clinic and given the diagnosis of terminal cancer to patients and their families, and watched the light of hope flicker and die behind a patients’ eyes whilst their spouses weep silently out of their line of vision. I have waited in the door of the clinic room for the inevitable return of a grown up child who needs to ask, out of earshot, how long their parent has left, as if knowing and planning and sorting will somehow hold things at bay. I have sat at the bedside of patients who, only days before, were planning holidays or weddings or birthdays, and I have waited in silence as they accept that those plans would not be realised. I have looked into the eyes of patients who have asked me to help them die, who have told me how frightened they are, who are in pain, who are not ready, who are raging against the dying of the light. And I have looked into the eyes of those at peace, who tell me they fear nothing, who have already lived each day as if it were their last and have no regrets, no unfinished business, no unspoken words.

I have stood in the resuscitation room of the emergency department looking at scans which show unsurvivable events, moving between patient and relatives room and back again, piecing together not just a diagnosis but an idea of a life almost gone. I have huddled with relatives of dying patients in corridors, in stairwells, in car parks and explained in simple terms the most complex of ideas – that the person they love is leaving forever. I have dragged myself wearily up the stairs to the ward after a long clinic to talk to the families of patients who are too unwell or confused to know who their children are. I have sat with patients I have known since my first days as a consultant and watched them breathe their last breaths. I have stood in a side room in the twilight and exchanged quiet memories of patients with their still-present relatives after certifying them dead. I have sat in the ward staff room, surrounded by staff jumpers and health and safety notices and leftover pizza whilst the just-bereaved tell me about the loved one who was everything to them and a stranger to me. I have been to the hospital mortuary to fill in death certificates and cremation forms and watched as the cold bodies of patients I first met in clinic when they were full of warmth and optimism are pulled from the freezer. I have sat in my office and heard raw grief pouring out from relatives of patients who the system – us, me – has let down in some way. These are families whose grief is overlaid with regret and anger and guilt, and for whom the path to resolution will be tortuous. And I have sat in my office and wept for the times when I know in my heart of hearts that we haven’t done the best we could. We haven’t been as open or as honest as we should have been. We have let our desire for a ‘good outcome’ cloud our acceptance of a poor one. We have failed to diagnose dying until it’s too late. We haven’t had the difficult conversations that needed to be had because we were too busy or too scared or too uncertain. Those are the times that stick in my mind, and from which I learn the most, although as I learn I am acutely aware that this learning does not benefit those who I learn from, or make their grief any easier to bear.

At the end of each day, I come home and try and distil into meaningful, appropriate language the things I have done and the things I have seen. ‘Did you make the poorly people better, Mummy?’ the children ask. Some of them, I say. Some of them. Often my children are in bed when I get back to the sanctuary of home. I watch them sleeping and marvel at their youth, the smoothness of their skin, the absence of drips and bruises and oxygen and disease. Sometimes I creep into the baby’s room and lift her from her cot and sit in the dark with her asleep in my arms, heavy and sighing. I let her head rest on my shoulder and the weight of her seems to press out some of the sadness that I have absorbed through the day.

But the thing that runs through all of my days, particularly the ones which hold a lot of suffering, the thing they never mentioned at medical school, is not death but love. Who we love and how we love them is brought into sharp relief when the moment comes for us to be parted by death. Love is indeed a many-splendoured thing, and how we die is, I believe, a reflection of how we have loved and were loved in life. So yes, Dying Matters. And for me, a hospital physician, death and dying is a fundamental part of what I do. The Francis Report, with it’s (and the ensuing media) scrutiny of avoidable deaths, has brought into new focus that more often than not, it’s not just the dying that matters but it’s how it happens. And we need to be better, more open, more honest. So perhaps when my children ask me if I made the poorly people better, I should tell them the truth. I can’t make them all better, but for the ones who are dying, making sure that their dying happens well is one of the most important jobs I can do and something that we as medics and as humans should value more highly.

May 2013.