(I've written this piece for a work project but thought I'd also put it out on my blog. Hope it's not scary reading for anyone.)
When people ask me what I do for a living, I’m always tempted to just say “I’m a nurse.” It’s easier. If they go on to ask what kind of nurse I am, then that’s where the awkwardness sometimes begins. When I tell them that I’m a specialist nurse who works with dying people then they tend to react in one of three ways. Firstly they might change the subject very quickly, a glazed look in their eyes. Secondly they might offer a platitude about how special I must be to do my job, effectively ending the conversation, as well as making me feel a little bit uncomfortable. Thirdly, they may show intense interest, throwing question after question my way. I like the third group of people best of all. They seem like a sensible group. I understand the others, though. It’s their prerogative. I don’t want to make anyone uncomfortable and we all have our histories and motivations.
I was a bit like most people when I was younger. I knew death existed but it certainly wasn’t something I ever wanted to contemplate. The idea terrified me. I started my nurse training aged 21 and was very quickly exposed to the fact that people die. Strangely this shocked me and I felt ill equipped to cope. I saw sudden unexpected deaths and slow gentle deaths; deaths denied or embraced; deaths which were graceful and peaceful and deaths which were a little more turbulent. I saw mourning in all its forms and rituals from the stiff upper lipped and apologetic, who didn’t want to put anyone to any trouble, to the open outpourings of raw emotion.
It all intrigued me and my thoughts often turned to why it was all seen as so shameful and taboo. We’d bustle around people, avoiding them, blocking them from talking by being too busy with tasks to be interrupted. There seemed to be two basic rules underlying our behaviour: Firstly, death was a final failure in medicine. People had to kept alive. It was an embarrassment if we let people die. Secondly, the dying were somehow different from us and as such frightening and to be avoided. We needed to avoid talking about it. We might say the wrong thing or make it all worse. I found myself nervous around people who had life limiting illnesses, coyly avoiding the subject that I was hoping they would avoid too.
I recall meeting a young woman with recurrent untreatable cancer who made me feel very inadequate. I was a young and eager to please student nurse. We’d talked a lot and got on well and then her diagnosis came to light. Suddenly I found it harder to talk to her. I was petrified of her asking me something or talking about things which I felt unable to address or respond to. In reality, I’m sure now that she expected no revelatory answers from me, just a listening ear.
I’m older and I think differently now and so does medicine, thankfully. It took experience and ageing to make me see that we’re all dying, just at different rates or times. The hardest fact to come to terms with was that however hard we evade it, it’s an inevitable and integral part of life, not a separate add on. So why don’t we talk about it? Why does society deny its existence and does this ultimately cause us harm?
I see and support patients now who have life limiting illnesses and interact with them one to one, trying to alleviate any distress and make things better in any way I can. I invariably can make things better, even if only in the smallest ways and approaching death doesn’t have to involve suffering and trauma. If I can’t help I usually know someone who can, whether it’s a specialist financial advisor, a psychologist or even a home help or a simple piece of household equipment. One thing this job has taught me is that the scary conversations we don’t want to have with people are usually much easier to instigate than we think.
Life in modern times is complicated. We have so many choices and a higher level of freedom and choice than ever before and this applies to our manner of dying too. The diversity of human wants and needs means that we all have our individual preferences and desires. We have more complex family situations; our relationships, our beliefs, our finances and our living arrangements are all unique. This should apply to the circumstances of our deaths too. Indeed, these factors influence what will happen when we die. One size isn’t go to fit for all and unless we make our wishes plain we can’t always hope to have our needs and wants accommodated.
They’re difficult questions which we tend not to consider, especially when we’re relatively well and death is an elusive presence which we believe won’t happen to us. It’s hard to think about a world without our presence but unfortunately it will happen one day and we need to prepare. Talking about it can be surprisingly easy, much easier than you’d think in most instances.
There are lots of things we can think about. Who will care for those important to us if we can’t? Whose responsibility will it be to sort out our finances? Who will speak out for us and advocate what we want if we can’t do that anymore? Where would we want to be if we were nearing the end of our lives?
These questions became very important to me in my own life. My father died four years ago after a long illness and throughout his illness it was the unspoken rule that we didn’t acknowledge that his death was approaching. We didn’t sit down and formally discuss it. We didn’t labour the point that he was dying; he knew that all too well and was rueful of the fact, adjusting to it slowly as people often do. There were things we needed to know and things he needed to tell us and we must all have worried in our own ways about what the end point would entail. We didn’t want to think about it but unfortunately thoughts aren’t easy to suppress and when an event is coming towards you at alarming speed you can’t avoid it forever.
As it happened his wants and needs came to light in dribs and drabs. Life is often more random than we hope and formality doesn’t always facilitate the best communication. He let us know gradually, in his own time, what he wanted and we were able to respect what he said. It was so easy to talk about in the end that I wondered why we’d worried, protecting him as he tried to protect us, when in reality we were all avoiding what we needed to say. It wasn’t like in a Hollywood film. We didn’t have cathartic moments or major emotional breakthroughs. We dealt in practicality and pragmatism, a family trait.
He instigated amending his will and selling his collection of classic cars. He addressed his religious needs. He encouraged my mother to move forward, advocating outside interests and widening her circle of friends. A couple of lengthy stays in hospital lead him to state that he didn’t ever want to go back there if at all possible. This in turn lead us to ask if he wanted to be at home at the end and it lead to a healthy conversation about under what circumstances he’d want to be at home and how important this was to him. He informally set parameters for us and we were able to respect these, keeping him at home, ultimately, with community nursing care which eased him towards a peaceful and natural death in the place he loved to be, surrounded by the things and people he loved.
My mother is a realist and her experience of the respectful way we accommodated my father’s wishes surrounding his death have led her to be proactive and pragmatic. She has complex legal arrangements detailing what she needs and wants, her finances are orderly, funeral arranged. This might seem alarming and morbid to some as she’s in rude health and will most likely live a few decades longer, but to me it makes perfect sense. Although she would trust me to make the right choices it’s infinitely helpful to have some guidance while she’s able to provide it. I’ve made my own plans and wishes clear too and I also intend to be here for a lot longer too, if I can be.
Talking can be difficult. We’re all different and we all go about things in our own ways. There are ways and means of making your wishes known. There's a great group called “Dying Matters” who's campaigns inspire me with their simple approach and the availability of sensible advice which is accessible and easy to follow. I’m glad we now have more awareness and more resources.
If we do ever meet, perhaps at a dinner party or reception of some kind, then feel free to ask me about my job. I’m happy to talk or not to talk. I won’t impose on you or make you face things you’d rather not. I would however tell you that my job is a privileged one. I get to help people, am offered a chance to be a part of their lives in challenging times and meet some amazing people. I’m thankful of the opportunities I’m given.