Dignity in Life, Dignity in Death
I seem to have stopped posting as suddenly as I’d restarted. I went on holiday to Budapest for a long weekend which was amazing and much needed., and life’s been taking up my time in between. But I’m back, for now, and I want to talk about something that’s political but also personal to each and every one of us.
Be aware, I’m talking about death and dying.
Those of you who know me personally will know that death has not been a stranger. I lost my dad when I was 12, my paternal grandmother when I was 19, my maternal grandparents in my early 20s. My paternal uncle, who had become more important to me than I ever realised, died when I was 28. In addition I’ve lost extended family, friends and neighbours. The one good thing that has come from this is that death doesn’t frighten me. I’ve seen dead bodies, been to more funerals than I can count, and dealt many times with the grief, the pain, the loss, and the inevitable attempts to move on.
The other good thing that has come of all this is that my family can speak of these matters openly. We’ve discussed wills and the practicalities of probate like the old hands we are. Last year I finally wrote my will and at the same time I decided to write an Advance Decision. I wanted to do this because I value quality of life over quantity. I don’t want to be stuck on a respirator with no hope of recovery should something awful happen to me. I also don’t want people making difficult decisions on my behalf without any understanding of my wishes. Advance Decisions are now legally binding, in that doctors who do not follow them can face legal ramifications, though this requires that the doctor and those making decisions on your behalf are aware of it.
A lot of the template forms online are written from the perspective of someone already ill, such as someone suffering from Alzheimer’s or cancer. These didn’t suit my needs but eventually I found a template for currently healthy people at a site called “Compassion in Dying”. Before I filled it out I spoke to my family and my doctor. I also asked her to check my form prior to my getting it signed and witnessed to ensure that it reflected what I wanted and didn’t prevent me from getting treatments I did want. With that done I got it formalised and sent a copy to my doctor to put on my notes. It felt a little scary at first but now it’s a great comfort.
The form I used had a section called “Value Statement and Additional Directions” and in it I wrote,
I believe that assisted suicide and voluntary euthanasia should be legal, and knowing that they are not I would rather treatment be withdrawn and end things than have to fight through the courts to be able to make decisions about my own life and body.
I believe this wholeheartedly. I’ve had relatives who have dropped dead suddenly and I’ve had relatives who have suffered before finally getting release. While the former is much harder to accept for those left behind, it’s most definitely the way I would want to go. No pain, no fear. Just here one minute, gone the next. The idea of suffering, of losing control of my body or my mind, of having to have other people do the most basic and intimate of tasks for me because I’m unable to do them myself, fills me with much greater fear than the death that will inevitably follow.
The problem, as I see it, is that we have made great strides in medicine in recent decades and we are able to keep people alive far longer than ever possible before. The unfortunate side effect is that we are keeping people alive past the point where that life is worth living.
I’ve grown up with dogs and the hardest thing we’ve had to do is decide to end their lives. It’s always been a painful decision, filled with doubt and questions as to whether it’s the right thing to do or not. But at some point in each of the dog’s lives there came a point where the spark went out of their eyes and they looked at us with pain and fear and it was clear that they were done. At that point the decision was made and while still awful we always knew we were doing the right thing for them. I’ve never understood how people can be considered cruel for letting their pets live beyond the point at which their lives have worth and yet to give humans the same ability, even for themselves, is seen as murder.
The reason I’m writing this is not because I’m feeling particularly morbid tonight (I’m not) but because in writing my Advanced Decision I became aware of Dignity in Dying, an organisation dedicated to legalise assisted dying for terminally ill people, and I have been following their campaigns ever since. Today I received an email saying that Lord Falconer’s Assisted Dying Bill has passed its first reading in the House of Lords and will receive its second reading on the 18th July. I don’t know how likely it is to get beyond this stage but I sincerely hope it will progress.
Personally I don’t think the bill goes far enough but it’s a start. The reason I don’t think it goes far enough is because the bill, like the charity that supports it, is only to allow those who are terminally ill, mentally competent and physically able to chose to end their lives. I can understand why these limitations have been put in place and I believe that any bill that tried to go further would get roundly rejected, though I have hopes that this will change once society realises that giving people autonomy over their deaths does not lead to rampant suicides of otherwise healthy people.
A few years ago Terry Pratchett, my absolute favourite author, participated in a documentary called “Choosing to Die”. I remember watching it with tears rolling down my face at times, and it illustrated why I have reservations about limiting the ability to choose when life is no longer worth living to those who are mentally competent, terminally ill, and capable of taking the life-ending medication themselves. I can already hear the cries of “you want mentally incompetent people to be able to kill themselves? What kind of monster are you?” but let me explain, using Terry Pratchett as an example. In 2007 he was diagnosed with early onset dementia and since then has become an active campaigner for Alzheimer’s research and for Dignity in Dying. In the documentary he travels with a couple where the husband is terminally ill to Dignitas in Switzerland. They, like the Bill, require people to be mentally competent and able to take the drugs themselves. These requirements sound perfectly acceptable but they can mean that people are forced to take their lives earlier than they might otherwise want. Terry Pratchett’s Alzheimer’s affects his mind meaning that one day he will not be mentally competent. In order to be able to chose when to die he will have to die before the disease has robbed him of all his faculties; before he is ready. For people with physically degenerative diseases they have to take their lives before the disease has taken their motor functions which would otherwise prevent them from putting the drugs in their mouth and, in some severe cases, even swallow.
What I’m trying to say is that I don’t want the law to go further so that more people are able to end their lives but because I don’t want people being forced to end their lives before they are ready for fear that when they are ready they are unable to do so because they no longer meet the physical or mental requirements of the legislation.
We live in a strange culture. While death is a mainstay of fiction we shy away from its real-life counterpart. We talk in euphemisms and avoid any mention of it with our families, somehow thinking that if we don’t talk about it, it won’t happen. But it will. Every one of us will die. One day, hopefully in the distant future and hopefully peacefully. But medical advances mean that instead of a quick death we are more and more frequently resigned to a slow, lingering death, where pain relief is temporary and the inevitable becomes more and more inviting.
There are those who are scared to die and want to cling on to every moment of life, however painful. There are those who believe that life is sacred and only higher powers have the ability to end it (though they seem perfectly happy to let doctors prolong it). And there are those who have watched loved ones suffer unnecessarily and think to themselves that no-one should have to suffer like that. More selfishly they think that they don’t want to suffer like that.
No one should be forced to exist when all they have is pain and their only hope is that they die soon. No loved on should be forced to chose between helping their loved ones get the release that death offers and staying within the confines of a clearly unjust law. As more of us gain first hand experience of the limitations of the law as it stands and the inability of medicine to provide comfort when diseases overwhelm fragile bodies I believe that the desire to change that law will become too forceful to ignore. I have a faint hope that Lord Falconer’s bill is the first successful bill to allow for assisted suicide but even if it isn’t I’m damn sure there will be successful ones in its place.
Links
Terry Pratchett: Choosing to Die (have the tissues handy)
Comments