What is society’s last taboo? What is the one thing left that we are all uncomfortable discussing, that is so upsetting and hidden that there is almost an unwritten rule that we are not allowed to ever talk about it? Is it abortion? Is it racism? No, it’s something far more pervasive, something which happens to everyone, everywhere, no matter of age, class, or creed.
It’s something so simple, yet we are all unwilling to talk about it. It’s an elephant in the room which is only growing bigger and bigger and bigger until it gets really unruly and tries to eat Grandma. Recently, euthanasia and the Liverpool Care Pathway have been big stories in the news, with a frank and moving discussion being held on this week’s Newsnight abut the LCP and its impact on the medical profession and families at large. Watching it was certainly painful for me; not only did it have Terry Pratchett, a man I admire, talking at length about his desire to die with dignity, but it brought extremely traumatic memories of my great-grandma’s death up in a cathartic big wet wad of sadness. Although I found it difficult to watch, I commend this type of discussion. I commend Terry Pratchett’s bravery for making Choosing to Die, a programme that was deeply moving and discussed the ideas of dying with dignity and the right to choose when and how we die.
The programme was criticised as many as being biased propaganda trying to shoo us all down the path of assisted suicide and four British peers described it as ‘repugnant’ and ‘disgraceful’. But why? Why is it so appalling to discuss death, the ideas surrounding death and how people want to die?
As a society, we do not like to think about death in a serious manner. Death is all around us, but in places and states where it is kept safely far away. Death happens to bad people on TV, it happens to unfortunate people in the third world, and it is all kept very tidy by the media. Thinking about dying is morbid and distasteful, and it’s something children are kept at a great distance from; animals, often a child’s first experience of loss, are simply removed and leave. After working extensively with small children, this leads to some extremely bizarre beliefs in small children when they are finally, tentatively told about death – ‘Nana’s gone where the gerbils went. She’s been out under the old fishtank in the back garden.’
This reluctance to think about the end is the natural result of a culture where death is not as prevalent as it once was. We take for granted the fact that we are unlikely to die of malnutrition, disease or exposure in the western world. We forget the revolutionary change that the NHS and frozen food culture have made in the living conditions of people. We forget that it wasn’t until the mid-1960s that clean running water was available to everyone in the British Isles, or that it was quite common in the first few decades of the twentieth century to see people who had died of disease or starvation lying in the streets. Our world is safe. Like a fantasy land for children, we have cast death out. It only exists when we allow it to exist. It has become something that only comes for the very old or the very unfortunate. Medical care reflects this, I feel; rather than doctors pushing the LCP on people, in my experience doctors are obsessed with keeping patients alive, even causing physical pain and trauma in their efforts. Medicine is about healing people, and that is the only thing that matters. Admitting that a patient is dying seems to be a professional failure, and they try for every second to keep the fight for life going. But is this the right attitude to have? Why is it a bad thing to make someone feel better and let them die in comfort?
I this discussion with a relative who works in healthcare and she told me that it was her duty to keep a patient alive for every second that she could. She thought it was dreadful that I disagreed with her and categorically said that if I were dying slowly, I would rather be euthanized than carry on living. She asked me whether I had considered what it would do to my family. And that is another key part of the debate – when people are actually willing to talk about death, it is always in regards to your relatives. What is it going to do to them, how are they going to feel? It is remarkable in these debates how little the thoughts and feelings of patients who want to die or who are dying are considered. If I were dying of terminal cancer, why am I not allowed to choose what happens to me? Why must it be left to doctors and my family? I would never want my family to have to make a decision whether they should let me be placed on the Liverpool Care Pathway, or be forced into one my doctors. If it ever gets to a point where I am dying, I would rather die than let my family see me deteriorate until the bitter end. I would want to die when I am not in pain, when I am still conscious, and at home. I saw women dying slowly in hospital beds, kept artificially alive, and I have never seen and will never see something so awful again. I never want anyone I love to see me like that, and this is why death must be allowed back into the public consciousness again.
I am not trying to make an argument for assisted suicide. I am not trying to lambast the medical profession for working so tirelessly in the care of others. I am criticising those who don’t think that death is an appropriate topic for conversation. We all need to start being more open and honest about how we want to die. It’s something we don’t want to think about, something we’ve been trained to be afraid, and it is something horrible and painful – but it’s the only certainty we have in life. People throughout history have been open about death. It didn’t mean that they didn’t care about people or didn’t experience grief like their modern counterparts, but that they were willing to accept that fact that you are going to die one day, and you have to think about that eventuality. You have to think about what will happen to people around you. You have to make a will, think about your funeral, and think about how you are going to die. These are personal decisions that you should make before you can’t make them. Let’s make death socially acceptable. Let’s make a social revolution where we talk about the end and what we want. It’ll be painful, but will make the end easier. And at the end, ease and comfort is what we all really want.