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Sir Terry Pratchett Defends his Controversial BBC Programme on Assisted Suicide 'Choosing to Die'

Posted: 7/07/2011 08:50

In mid June the BBC aired what has subsequently been hailed in the press as one of it's "most controversial ever programmes" - The Huffington Post USA, 'Choosing To Die' presented by science fiction writer Sir Terry Pratchett who suffers from Alzheimers disease.

After two weeks the reverberations continue as the debate progresses and gathers strength.
The documentary followed two English men, Peter Smedley and Andrew Colgan, to the Swiss clinic Dignitas where they took lethal doses of barbiturates - in order to end their lives and their suffering with degenerative terminal illness.
Currently in the UK Assisting a person to die is illegal and can result in up to 14 years imprisonment. In Europe the Netherlands, Belgium and Luxemburg permit Assisted Suicide. In Switzerland the law goes further, the nation's highest court recently ruled that deciding on one's own death is a human right, regardless of whether a person is terminally ill.

In the USA, Oregon, Washington state and Montana permit physician assisted suicide. In March 2010 - USA's PBS Frontline also aired a TV programme on the subject 'The Suicide Tourist' in which Englishman Professor Craig Ewert and his family travelled to Dignitas for his suicide.
What was the extent and cause of complaint in the British press about this programme and why?
The backlash against 'Choosing to Die' included 898 complaints to the BBC overnight. Four senior peers came out against the documentary, calling it "repugnant" and "disgraceful".

Objections varied in nature - firstly, some against the decision to show the moment of death on television: "I rather thought that we had moved on from the days when people gathered in crowds to watch other people die." Nola Leach, chief executive of CARE, told The Telegraph.

However, as AA Gill for The Sunday Times commented: "Choosing to Die was billed, hyperbolically, as the first time the moment of death has been shown on television. It isn't. Not by many, many deaths. What they meant was the first death of a white western man in a sitting room."

Another objection came from charities and religious groups who have accused the The BBC of abandoning it's usual neutral standpoint by airing a film pro Assisted Suicide, labelling it propaganda.

From the outset, it was made evident that Pratchett believes that mode of death is a personal choice. At the documentary's heart was the novelist's own dilemma: diagnosed with Alzheimer's three years ago, he now suffers failing short-term memory, he says: "I know the time will come when words will fail me. When I can no longer write books, I'm not sure that I will want to go on living." - The Independent

Pratchett concluded: "I believe it should be possible for someone with a serious and ultimately fatal illness to choose to die peacefully with medical help, rather than suffer." - BBC Newsnight

The programme was highly emotive, featuring long shots of bleak alpine landscapes and swelling Elgar music. Some critics disapproved:

"What Choosing to Die suffered from was empathy - which is very popular in documentaries these days. What it should have had was a buttoned-up sober detachment." - AA Gill, Sunday Times

Oddly however, the most emotional scene by far was in a depressing bare Swiss hotel breakfast room, where Terry and his pained assistant bade a last farewell to Andrew and his mother and parted with the words - "once again, on the other side." It felt like a scene from a Shakespeare tragedy plonked on the set of an Alan Ayckbourne play. Robbed of gravitas, and softly sad.
Pratchett is persistent in his defense of his film. Asked why he wanted to make it, Pratchett told BBC Breakfast: "Because I was appalled at the current situation. The government here has always turned its back on it and I was ashamed that British people had to drag themselves to Switzerland, at considerable cost, in order to get the services that they were hoping for."

So, after complaints and controversy from all sides we might ask what was gained from airing 'Choosing to Die' and airing it now?

I would argue, much.

1. To open the debate to a wide audience in an ageing population

Whilst it is reasonable to complain about Pratchett as choice of narrator (he is not over skilled as such on an objective level) - as well as his popularity as a writer his personal connection to the subject matter gives him key validity. How can we ever prescribe for others? Pratchett was looking for himself. Many sufferers of terminal conditions are at the forefront of the right to die movements. Ms Debbie Purdy, who won a landmark court case in 2009 to have the law on assisted suicide clarified and has pledged to take her own life if her life with multiple sclerosis becomes unbearable, said: "It is such a brave thing the BBC are doing. You need the discussion, the debate. To show someone taking the final decision, this really helps." - The Evening Standard

Ms Purdy is right, the exposure from the BBC will draw many into the debate and this is an issue of which the young and healthy will increasingly need to take notice.

It is not good enough to leave discussion of death and suffering to those closest to them, whilst the rest watch I'm A Celebrity Get Me Out Of Here over on ITV.
The population of the UK is ageing. The fastest population increase has been in the number of those aged 85 and over, the "oldest old". In 1985, there were around 690,000 people in the UK aged 85 and over. By 2035 this number will be 3.6 million, 5% of the total population. - Office for National Statistics

Large percentages of older people will put increasing pressure on healthcare budgets and social services. Our society is challenged currently to provide adequate palliative care, this challenge will only increase. This is a factor that can be used to support the slippery slope argument that if assisted suicide were legal in the UK the vulnerable may be pushed towards it for economic reasons. It can also be used more open mindedly to suggest - as old age is going to become a longer part of our lives, and the older a greater part of our population, the subjects of vulnerability, illness and death need to become much more mainstream in their consideration. In terms of to how to raise the healthcare funds, and to find inventive ways to improve care for elder patients and to keep them in their own homes for longer. Also, if the majority of the population support AS, as statistics suggest, who is to overule this as a legal option? Here in our own country, and not hidden on Swiss Industrial estates. (Swiss law prevents Dignitas settling in residential areas of Zurich).

2. To get real about death in the media

Death is everywhere in the media. Yet almost always in it's most fictional, sensationalised, violent form, what was shocking about 'Choosing to Die' was to see a quiet, simple death of an ill man. Yet this is what people need to acknowledge and discuss if we are to reach a change in law than genuinely meets the needs and wishes of our population.
This needs to be discussed right now for the sake of those suffering now
This issue is important to be in the forefront of our country's ethical debate now. It is not good enough to just wait and see, as already some people are heavily compromised by the law at is stands:

As discussed - In current UK law someone who assists another to die can face up to fourteen years imprisonment, leaving many people fearful about asking a spouse or friend to help them end their lives and endangering them in this way. People such as Debbie Purdy fight in court for their spouses to help them without risk of legal action.

3. This programme addresses the odd situation of this happening in Switzerland, and our citizens travelling there to die, and the problems of this

In the past many families in the UK have relied on doctors they knew to act 'off the record' and help relatives to 'slip away' by overprescribing morphine etc, but as medicine becomes a bigger more regulated business this becomes more difficult. So, travelling to Switzerland seeking a compassionate death becomes an increasingly popular option.

'Choosing to Die' highlighted that this means Brits must still to be well enough to get themselves to Switzerland and to make complicated legal and physical arrangements - the current laws mean people may have to die earlier than they might otherwise in order to be able to travel.

"There was a genuine fear of the practicalities of it. If I don't do it soon, I won't be able to do it at all." - Andrew Colgan on an early death in Zurich.

Dignitas operates under Swiss law so showing it's operation on the BBC is not prescribing how Assisted Suicide might work if set up in the UK. Another reason it is important this programme was made and shown in the UK and debated here.
For example - a difference, in Swiss law deciding on one's own death is a human right, regardless of whether a person is terminally ill.

A repeated Dignitas phenomenon are couples' deaths. Sir Edward Downes, the conductor emeritus of the BBC Philharmonic, and his wife Lady Joan Downes travelled from England to die together at Dignitas because they wanted to die together. Lady Downes, 74, is understood to have been suffering with cancer while Sir Edward, 85, had become virtually blind and suffered loss of hearing.

There has been debate about the ethics of allowing people who are not strictly terminally ill to end their lives. Yet, who could argue the Downes' case seems understandable and which of us would not like to die like this, painlessly, in the arms of our greatest love?

Daniel James, 23, played for England schoolboys and was paralysed from the chest down after his spine was dislocated when a scrum collapsed during training with Nuneaton Rugby Club in March 2007.

After two failed suicide attempts of his own and claiming he was living "a second-class existence" he travelled to Dignitas with his parents, Mark and Julie and ended his life. Again, a very contentious case which was settled by Swiss law, a strange place of refuge for Daniel.

4. It needs to come into the public arena as this issue pertains to the public, are we primarily part of a community or autonomous in our own lives? - Who has the right to decide when we should die, 'them' or 'me'?

Not all uphold the idea of personal choice. Another argument in response to Pratchett's film was raised by Michael Wenham (a vicar) writing in The Guardian:

"The tragedy of the film and of the campaign that lies behind it the refrain "It's my choice". There was a sort of pre-suicide litany: "Is this your choice?." The resigned wife, and mother, both present, in the end could only say: "It's his choice". How etiolated is that view of existence. My world, when all is said and done, is ME. The individual is the ace, trumping all else.. Pratchett's line: 'My life, my death, my choice' - falsely premised though it is, for who chooses their life, who chooses to be born?"

Wenham argues interdependence is the secret of society and that we might consider living just for others. He also gives an example of two friend of his, Jill a paraplegic and Dan a leukemia sufferer once given six months to live - as prospective candidates for assisted suicide were it to be legal, who overcame lows in their lives, who manage illness and who prosper and have three healthy children.

Seneca wrote 'Disaster is virtue's opportunity' and argued that if someone only had good luck in life they could never be virtuous; bad fortune makes the good Stoic. Wenham argues we are better citizens through the process of suffering and caring for one another.

'Choosing to Die' prompted further debate again as an anonymous blogger wrote in vehement response Wenham:

"My mother had MS for thirty years!! The last five years were like a horror movie. When we thought it could not get any worse, it got a lot worse. Confined to bed, moved every hour to stop bed sores, she had lost her swallowing muscles so she was unable to drink or eat, she couldn't speak and we had to suction the phlegm from her throat. That was up to a year before she died".

He asks, what could be worse than seeing the person who you love suffering? Another blogger with a terminal illness responded by revealing that to him the fact that this controlled death exists, even only in Switzerland, provides comfort and perhaps courage to face life for longer. It could be argued against the idea of God's plan, or stoical suffering, that because we did not choose to be born is the very reason we have every right to choose die. Many find the concept of suicide, for themselves and loved ones, a deeply soothing one. Isn't the worst punishment in a prison being put in solitary confinement with no sharp objects or ways to escape by choosing death? Being kept alive can be a legal punishment too. Some hospital patients in the UK at present die from starvation and dehydration as a way of choosing to end their lives. Wenham argues that there are lessons to be learnt through a painful death. This rather assumes there is somewhere else for lessons to have been worthwhile learning.

5. This programme showed the story of the carers too, we need to talk about their roles and hear more of their stories:

AA Gill makes another key point: "The story was the women - the mother and the wife who had to help the men they had devoted their lives to, to the edge of the Styx. They had to acquiesce, be strong and then go on. Bereft. If this drama had been written as a Greek tragedy, Aeschylus would have know that the central character was a woman".

What of the people left behind? How would we feel taking a relative to Dignitas? What happens, as in both Smedley and Colgan's cases, if the wishes of one person to die are allowed to outweigh all others for them to live? Doesn't everyone deserve compassion? How is that best achieved?

I do not believe that sovereignty lying with an individual should be described as "repugnant" and "disgraceful". There ought to be as much widespread support for the dying and their carers to leave a life with as much grace, and any antonym you can name for repugnance, as when babies are welcomed into it. We spend so much time and attention on the young, on health and beauty - it simply fuels our fear and neurosis as a nation to deny the reality of suffering and choices in our death.

No wife should sit quietly on a random Swiss sofa as her beloved dies but instead be at home, sanctioned and supported by the UK government - who should enable its citizens to die with the choice, rationality and individuality they are blessed to live by. Values upheld by the BBC in airing 'Choosing to Die'.

 
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12:43 PM on 07/08/2011
Assisted dying and end-of-life care are not either/or options (over 90% of dying Oregonians choosing an assisted death are in receipt of palliative care). Dignity in Dying campaigns for assisted dying for terminally ill mentally competent adults, at their request, within strict safeguards. We also advocate universal access to good quality end-of-life care. We advocate both because we acknowledge that whilst for the majority good quality end of life care can alleviate most of the suffering the dying process can cause, for a significant minority it can’t - and such people, if they wish to end their suffering, should not have to travel abroad to die or take matters into their own hands domestically. Surely it is preferable to have a safeguarded law which would allow for an upfront consideration of someone’s request to die when they are still alive and alterative options can be fully explored with healthcare professionals.

Our only reason for campaigning to change the law is that some terminally ill people are suffering unbearably at the end of their lives against their wishes. As a society we already accept that sometimes at life’s end death should be hastened through sedation and the withdrawal of treatment, with little to no safeguards. Why do we not then allow dying patients direct control over their death, within upfront safeguards?

Mylinh Cao, Dignity in Dying
please see www.dignityindying.org.uk
08:47 AM on 07/08/2011
Tuigim there are at least two issues here, death as part of the natural ageing process and death following a long horrendous illness.

Neelu Bird your comments say it so much better than I could.

What I should have pointed out in my own illness is that doctors are being told that if the blood tests are negative for Lyme Disease the patient can't have Lyme Disease. According to Trinity Biotech the makers of the test kits used by our NHS a negative test result does not mean you can't have Lyme. Research shows that tests can miss up to 50% of cases. It needs to be a clinical diagnosis but there are very few doctors in the UK knowledgeable about chronic Lyme Disease. For more information visit UK charity www.lymediseaseaction.org.uk
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Tuigim
The perils of benefactors...
11:22 PM on 07/07/2011
Ignoring the issue does not make it go away.
Thank you to the brilliant Terry Pratchett for opening the debate to a wider audience.
The most stupid reaction is Nola Leach's who declares sactimoniously, "I rather thought that we had moved on from the days when people gathered in crowds to watch other people die."
The problem is, even though death will touch every single person, our modern culture hides death and aging away as something ugly. That is unnatural and disrespectful.
We should not close our eyes and be ignorant; we should witness and learn that this is part of life's process. Let us have a death with dignity, not hidden away.
10:29 PM on 07/07/2011
Your response was really good Joanne. This debate is always condensed into a "life is unbearable- let's end it" story and completely detached from the wider context of improving; medical treatments, patient's quality of life, respite and care support for the patient and carers. I'm sure far fewer would choose suicide if this wider context was adequately taken care of.

To prove a point, notice how even the Lynn Gilderdale case was reduced to an assisted suicide story. The suicide took less than a day but got all the coverage. No one in the mainstream media discussed the issue of vaccine damage or how she was mistreated by the medical profession and how they contributed to making her health so much worse for several YEARS before she reached the point of deciding enough was enough. That goes to show that at least some of her suffering was preventable if she had adequate support early on. I bet her Drs wont even get a reprimand.

Also notice how much emphasis there is about "the ageing population"? I'm not as disturbed by the assisted suicides as I am by the slippery slope this can lead to in terms of a cull of the elderly as well as vulnerable ill and disabled people. Of course the govt can't just say that; they'd have to first start a propaganda campaign about how 'good' that would be for everyone. Propaganda worked when they used it to depict those of us on disability benefits as scroungers.
08:37 PM on 07/07/2011
I have learnt there is a huge medical controversy, some doctors insist that a couple of weeks antibiotics will clear any infection of Borrelia no matter how long the patient has been sick, of the 19000+ research articles available on Lyme Disease there is abundent evidence that shows that a couple of weeks does not clear all infection.

I learnt that Lyme can mimic so many other conditions and yet doctors dismiss without properly assessing patients.

Alzheimer's, MS, RA, ME/CFS, Stroke Heart Block. Depression, Psychiatric illness, Polymyagia Rheumatica this list goes on, some patients diagnosed with these are found to be suffering Lyme Disease.

Judith Miklossy found DNA for Lyme Disease borreliosis in the brains of patients who had died of Alzheimer's she is not alone in that finding her website is a must read http://www.miklossy.ch/401/index.html
She says 'Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention of Alzheimer disease as adequate anti-bacterial drugs are available. Treatment of a bacterial infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial.

As it was the case for paretic dementia in syphilis, one may prevent and eradicate dementia in Alzheimer disease.'

What is the matter with the media that they let this huge medical controversy go without proper investagative journalism as to what is going on?
08:34 PM on 07/07/2011
I feel great sadness that so much emphasis in the media is placed on helping patients die, I wish as much effort was placed on efforts to finding the cause of illnesses.

Of the top 20 illnesses only two have a known cause HIV retrovirus causing AIDS and H. Plyori bacterial infection causing stomach cancer.

There are very many micro organisms that have been found to cause chronic illnesses but doctors and scientist argue constantly and patients are left ignored allowed to deteriorate or if lucky given medications that at best are palliative.

Some years ago my chronic arthritis and muscle weakness was such that I did not want my life to continue I could no longer endure the pain, quite by chance my GP gave me antibiotics for a chest infection and magically all my symptoms improved by far more than they had done on the steroids I was given for months. This led GP to suspect Lyme Disease and there on my records were the times I'd visited the surgery with bites, bulls eye rashes summer flu and migrating arthralgias.

It has taken many many months of antibiotics to regain my health but now life is a joy, I can garden and cycle again.
lastpost
see biography
10:35 AM on 07/07/2011
"Choosing"
If we are afraid or prevented from saying what needs to be said, then we might just as well already be slaves.

"What was the extent and cause of complaint in the British press about this programme and why?"
We each have a unique personal rendition of reality, which we may well perceive to be reality. What else would we do, when we have and never could experience anything except via that medium. Anything that causes us to confront a contradiction between reality and rendition jars. Some, at this point, acknowledge the existence of that duality. Others become blindly determined, to bend reality to fit their rendition.

""I rather thought that we had moved on from the days when people gathered in crowds to watch other people die." Nola Leach"
We have. Its called televised war and/or famine.

"Pratchett believes that mode of death is a personal choice."
Whose life is it anyway?

"Pratchett concluded: "I believe it should be possible for someone with a serious and ultimately fatal illness to choose to die peacefully with medical help, rather than suffer.""
They shoot horses don’t they?

"what was gained from airing 'Choosing to Die' ?"
We’re communicating, aren’t we. If its death that we fear, is what we experienced pre-birth to blame?
Don’t those who choose to be freed, also free up resources for those who prefer to remain?