Choosing to Die (2009)
My first meeting with Terry Pratchett was through Discworld. Through his writings I have come to love the author, Terry Pratchett. During one visit to his website I discovered that Pratchett had developed Alzheimer. My parents have friends with Alzheimer, and they have told me about the terrible progression of the illness. To their, and their friend’s, great sorrow, that friend is slowly but surely disappearing.
Due to his own illness, Terry Pratchett has become quite involved in the spreading of information about this terrible disease. His status has enabled him to help fund various research. In 2009 BBC’s documentary Choosing to Die came out. When I discovered it, Choosing to Die was on YouTube. Sadly, KEO films has chosen to remove all copies of Choosing to Die. I am still going to review it with the hope that Choosing to Die might reappear at a later date.
I cried as the documentary came to an end. Choosing to Die was deeply moving and I remained thoughtful a long time after watching it. Terry Pratchett’s handling of the issue of self-involvement and individual choice at life’s end was beautiful.
Alzheimer’s is very definitely not the only disease that has a terrible progression. In Choosing to Die we get to meet two people who are choosing to die before their body gives in on its own to MS (Andrew) and ALS (Peter). In addition we meet Mich (ALS), who has chosen to continue his life until it ends in hospice. The story of Hugo’s (Alzheimer) own Dignitas’ journey is told by Hugo’s widow.
Throughout the documentary Terry Pratchett clearly tries to respect the wishes of the patients. He displays a bedside manner that I have much to learn from.
After Choosing to Die, came out controversy reared its head. I do not understand the comments. Both sides of the issues were shown, and both types of patients were treated gently. Dignitas came across as an institution that took patients seriously. The procedure from first phone conversation to the very end was explained both by Dignitas and the patients themselves. Once at Dignitas for their dying hours, the patient was repeatedly asked if he was certain he wanted to go through with his death. He was assured that the choice was his. When the time for death came around, the patient was again asked and then had to take the medication himself.
Perhaps some of the controversy comes from that part, the dying par. Or from whether Dignitas could be certain they administered the right dose. Maybe they were completely against any thought of individual choice in the matter of death. I have no idea. In the minutes before Peter was to take his medication, he was again asked if he was certain death was what he wanted at this time. If problems arose with the medication, at least he would be in a safe place where a doctor could be called in immediately. I would rather die like that than by my own hand all by myself.
I personally consider individual choice, made of my own free will, with an understanding of what is going on my right. This is not the case in Norway. Even though I have a “Living Testament”, there are no guarantees that it will be respected if it becomes necessary to use it. My husband and my children are aware of my thoughts on the matter. Even if they are there to answer any question, there are no guarantees. I am completely at the mercy of health personnel present at such a time.
Terry Pratchett himself speaks of hoping to be able to die, at a time of his choosing, outside his own home. In the United Kingdom this is not possible at this time. If his Alzheimer advances too much, he will not be able to use the services of Dignitas. They are not legally permitted to admit patients who cannot, at the time dying, answer Dignitas’ questions.
The issue of an individual’s right to choose is an important discussion.
Since Choosing to Die is at this time not available, I have included some comments from Terry Pratchett on the issue of an individual’s personal right to choose at a time the individual is in full control of their faculties.
- 2011 June 14: Sir Terry Pratchett defends ‘Choosing to Die’
- 2014 May 13: Those of us with dementia need a little help from our friends
- 2014 July 2: The embuggerance is catching up with me
- 2011 winner for Best Single Documentary at the British Academy Scottish Awards
- 2011 winner for Best Single Documentary at the Royal Television Society awards
- 2011 winner for General Education Broadcast Award
- International Emmy awards for Britain in the Documentary category