How do you want to die? I don’t mean choosing between a fiery explosion at 25 versus a protracted illness at 88. I don’t mean when or what from, I mean how. Assuming you are lucky enough to have the time and forewarning to choose. Have you thought about it? Talked about it? For something we will all inevitably do, there is an alarming dearth of conversation around it.
Of course this is because it is an uncomfortable thought, it provokes sadness, anxiety and fear. It is potentially a dark conversation and much less appealing than discussing the minutiae of your day or what you might do if you won Powerball. Lots of people probably don’t even know where to begin in answering a question like this. But most people will be able to answer questions around the specifics if offered some parameters. For example, most people would say yes if asked whether they would like a peaceful death. People who are fortunate enough to have loved ones would usually say that they would like them close by, would like an opportunity to see them, be held by them, be in their presence and even say goodbye.
Most people would say yes to as much dignity as possible, to being clean and comfortable and attended to. Many people would say they would prefer to die at home, or somewhere else they felt was safe and private. I think that being pain free would be an almost universal request. Nobody I have met professionally or otherwise has wanted pain at the end of their life, no matter how stoic they might be day to day. People want to be peaceful, comfortable, dignified and surrounded by those they love. That is the very general prescription for a good death.
Medicine has come a long way in recent decades. We prolong life in ways we never could have before. We do amazing things. We save people who have been in horrific accidents, we take over the pumping of hearts, the work of kidneys and even the task of lungs in the right circumstance. We cure things now that used to be death sentences. It is no wonder that we don’t talk about death. We assume we shouldn’t have to. We assume there must be an alternative. There is a subtext to the discussion of dying: it’s as if to accept that inevitability is to submit, even to fail or to be failed. There isn’t an alternative though. We all die. We talk about quality of life. We also need to talk about quality of death.
In hospitals we look after a lot of elderly people and a lot of people with complex and life-limiting illness. We become practised in the nuances of life expectancy. We see patients with ever diminishing capacity and we know that the benefit of our intervention is becoming too insignificant to justify the burden on them, on the system and on their loved ones. We start to see that in some cases we are doing more harm than good. As doctors we approach families with conversations about death because the patient deserves that conversation. We talk about it before the moment is upon us because if we don’t we take too great a risk that we will deny a family an opportunity to prepare, and a patient an opportunity for a good death.
‘Sometimes we are presented with an opportunity to let our loved ones die peacefully and it is our responsibility to recognise that opportunity and not miss it.’ I was an intern when I heard those words spoken by a palliative care nurse. She was talking to the family of an elderly man who had had a protracted stay in hospital and who was deteriorating daily. That sentence reframed dying for me. I was still getting used to the whole thing; a year out of medical school, I was unused to the rhythms of life and death that now feel commonplace. That sentence, the use of the word ‘opportunity’, clarified my role in the most valuable way.
Dying peacefully was not an awful fact that we would resign ourselves to with this patient. It was an opportunity to die well, to tick all those boxes that we would all hope for. I will never forget the understanding that dawned on the face of the patient’s son in the moments after the nurse said those words. He was, until that moment, vehemently opposed to this idea of us ‘making his dad comfortable’. He shook his head vigorously while the nurse and I offered up the options as we saw them. It was like he was trying to shake something loose. He struggled to articulate it. But it was the notion that we were giving up, a sense that we were imposing a value judgement, that as health professionals we were deciding that we should stop because this particular person was not worth it.
The man before us, himself middle aged and exhausted, did not want to hear the statistics on his father’s illness, or our opinions on what we saw as the futile and unnecessary. He wanted to tell us that his dad liked crosswords, that his dog slept on the chair beside him while he watched the ABC news, and that he had a particular fondness for the Carlton football club. He wanted us to understand that the person, grey and muddled, in the corner bed on the second floor of our megalith of a tertiary hospital, was a different man to him. He wanted us to know what he knew. Or, if we couldn’t know it with the same shape and colour he could, he wanted us to glimpse it. As if it might change our perspective. Yet these glimpses of the real person are the point of these conversations. They are why these conversations aren’t about giving up, they are about ensuring we don’t deny people that last vital prescription. It is our investment in the person in the bed as a real person, with a favourite television show and a favourite ice cream flavour that makes our job of letting them die peacefully all the more crucial.
There is often an assumption that the moment we start making plans for somebody’s death we are disregarding their life. There is a tension in this dilemma that lines death up as an equal and opposite reaction to life, as something that doesn’t just mark the end of life but that defeats it somehow, beats it and all it contained into submission. It is as if in order properly to celebrate a life we have to rail against death. We get so caught up in the idea that someone doesn’t deserve to be dead that we forget all about the act of dying. Yet the dying part can be as good or as awful as circumstances allow.
Sometimes we have no impact on what happens. An awful accident, an untimely event, a person lost sooner than we can believe; these things are beyond the scope of modern medicine to prevent or predict. Often even when we know it is coming we rage until the very end, we throw all our significant scientific weight behind survival because we can see that there is quality life beyond the immediate, reversible problem.
But sometimes we see the natural course of events playing out with a certain clarity that accompanies experience. We see the irreversible at play. We see people who have lived and loved and been loved. We see their families come in and out with food and hope and exhaustion. We see that whatever efforts we make, we are unlikely to be able to return your loved one to you in the condition you recall. That at best maybe they will live a little longer if we do all we can, and at the end of our expensive and harrowing intervention they will be diminished, alive maybe but not the same, and quite possibly hardly recognisable. And at worst they will be denied the death we would all hope for if we all asked ourselves the question.
Of course we rage against death. Most of us with a survival instinct and reasonable mental health are hardwired for clinging on for dear life. And we transpose this value to the survival of our loved ones. The prospect of a loved one dying is often worse than the prospect of our own death. I remember no greater panic imaginable than the moment I thought I would lose my mum. My desperation for her life to continue was seeping from my pores. It was palpable, I could almost smell it. That fear brought me to my knees. But there comes a moment when we have to be brave enough to face life’s only inevitability. And once we accept that in all its awful truth, we need to be brave enough to turn our minds to what it takes to get there, to the dying part.
We see many private moments in medicine; patients naked and vulnerable, families fractured by fear or grief. To be honest, many of these experiences pass you by. They become non-events. They stop existing because we have a job to do and acknowl-edging the intensely personal experiences that we are privy to would stop us in our tracks. Apart from anything else more harrowing, it is just inefficient. But I always, without fail, feel caught short by the sharing of private details of a patient’s life. Their humanity comes to a screeching halt in front of me. These are the moments I remember.
Far from disregarding or failing to recognise the personal details of a life when we try to let patients go, those insights are the very reason a good death is necessary. Accepting the inevitable and trying to manage some parts of the unmanageable are not the same as giving up. They are certainly not the same as disregarding the life already lived.
The man in the story understood, after that explanation from my colleague, that his dad was going to die no matter what. The death element was not something any of us could control. But there were certain things we could control. We could choose not to do an operation on him that he probably wouldn’t survive. We could choose not to put a tube down his throat that would probably never come out. If his heart stopped we could decide not to perform rigorous chest compressions and have him die attached to monitors, unconscious and surrounded by strangers. We had control over that. His body was going to choose when to die, we could choose to make the moments leading up to that go past in peace.
Of course the caveat to all this is a person’s proximity to death, and the likelihood of meaningful recovery. The situation is clearly very different in the young or robust. In which case, we are fortunate enough to have access to a system that gives us a great opportunity to save and extend life. And that is what doctors like to do, after all. We like good outcomes, we like to watch our patients walk out in better shape than when they came in. But in the frail and the elderly we need to consider the precursor to death, the dying. There is incredible dignity to be found there, if we are brave enough to start the conversation.
