I have heard it said that are just two certainties in life; that we have been born and that we will die. We hope that the distance between the two will be great and that the process where by we die will be relatively short and painless and that it will take place in our own beds. The trouble is, that with people living longer, with technology and medicine allowing people to live longer with ill health and disability the chances are that the process that we now call end of life is likely to be more prolonged, it might be less pleasant than we might hope and it might involve the emotional suffering of not only ourselves but those around us. When people develop a condition such as Motor Neurone Disease, Multiple Sclerosis or other long term neurological conditions they are faced with the prospect of a life managing increasing disability, they are forced to face uncertainty and of the possibility if not certainty of an earlier death than they might have expected. Often they will be in the prime of their life, managing careers, family and all of the stuff that comes with that. The process of living with a disability or of being the nearest and dearest of those living with that disability is tough, but when that condition worsens and life feels to that person not worth living then all they are faced with is the process of dying.

Dying is something we are not allowed to speak of. It is something that we are not allowed to show on TV. Well that is not quite true. We are allowed to be shown pictures of war, of terrorism. We can see blood on the streets and we can see bodies covered in sheets. What we must not see is a man with a life limiting condition who has taken the decision to die. I am not an advocate of euthanasia myself. I am a nurse and generally prefer to be involved in the life promoting end of things and if involved in death then in making a person as comfortable and at ease with that process as possible. But I do think this is a topic we need to discuss and I do think that people have the right to manage their own death (within reason). As a nurse most of my learning around death has taken place in the context of cancer care. My experiences of supporting the dying and their families have come through the terminal stages of cancer. Symptom management within this sphere of nursing and medicine is well understood and well researched. But I don’t believe this to be the case when managing other conditions. A person dying from heart disease will not necessarily die the same death as a person with cancer or indeed MND. The end result might be the same, and some of the symptoms might be similar, but the management, processes and often time scales involved can be very different.

I didn’t watch the documentary on this topic last night. My own brother in law has the same condition and is deteriorating and probably entering the terminal stages of his disease. My husbands family can barely discuss his care needs let alone his death, but actually it shouldn’t be like that. If a person’s death is shown on TV and that person and his relatives supported that it should be shown, then we should watch if we want to and we should be allowed if not encouraged to discuss the subject. When people campaign for various drugs and treatments aimed at prolonging life, this is an aspect of that life that needs discussing. It is unpalatable, it makes us feel uncomfortable, but it needs to be spoken of.

The sun article about the story can be found here