The Assisted Suicide 'Debate' - Expoilted Families, The Media and The Medical Model.

I have considered this blog entry carefully as I’m about to talk about a family who have recently suffered a bereavement.  So when writing this I will do my best to tread with tact and sensitivity, qualities I’m not renowned for.  However a half an hour feature on Victoria Derbyshire’s BBC Radio 5Live programme really disturbed me last week. 

The objective of the feature was to talk to various members of Tony Nicklinson’s family about his death and the wider issues surrounding assisted suicide.  Mr Nicklinson died of pneumonia in late August only days after losing his case at the High Court to challenge the murder laws to make it easier for a doctor to help him to die.  The majority of time was taken up by a recorded conversation between Jane Nicklinson, Tony’s widow, and a wife of a man with locked-in syndrome (her comments voiced by an actress and was referred to as ‘Felicity’). They repeatedly asserted the idea that starving to death was the only option left open to their loved ones and casually talked about changing the law. The conversation meandered back and forth between two women who had never met before. Both women commented that their husband’s interests before their strokes were similar as both men were very active and into rugby.  Jane, a widow for only a month, sounded in shock as she asserted:

“I think knowing what they were like beforehand makes a big difference. If they were the sort of person that used to sit in front of the TV twenty four hours a day and never got off their bums to do anything, okay, but because they were so larger than life and active erm...this life locked in for them is a living nightmare.”  

This comment is very strange, and at best slightly offensive, but is from a woman who has only lost her husband a month ago so can maybe be excused.  However it does seem to be a concept that is in line with a general media schema that sudden disability is impossible to handle if you’ve been sporty before the incident that disabled you. This was evident in the shocking case of Daniel James, who assisted by his family, ended his life at Dignitas only eighteen short months after the initial injury that left him paralysed from the neck down.  His condition although extremely severe was not degenerative and, he could have gone on to live a very fulfilling life, despite his extremely severe physical impairment. The fact that Daniel was a very promising rugby player, and that his life revolved around him playing the sport, before his accident was repeated again and again in the media coverage surrounding his death. This was used as some kind of explicit justification, overriding all other factors, as to why the family acted with such urgency in helping Daniel carry out his wishes.  I strongly suggest that eighteen months is a ridiculously short amount of time to come to terms with a life severely altered by the traumatic experience of sudden impairment.  I also strongly believe that it is within the amazing capabilities of humans to adjust to extreme impairment given time however sporty they may have been before their injury.  

As the conversation between Jane and Felicity continued, Felicity reported that Martin refused to get out of bed all year apart from when they were going on their annual two week holiday.  Jane also reported that she had an adapted car that made it possible for her and Tony to go out but that he would consistently refuse to leave his bedroom.  This behaviour seems to me to be a symptom of severe depression that is no doubt brought on by sudden and severe impairment, but nonetheless could be challenged. I have to wonder if a non Disabled person didn’t leave their bed for months on end would society condone suicide as a valid solution to the situation.  You get the impression that caring for their husbands had taken a physical and emotional toll on the two women and no doubt the two men and their families would have benefited from a lot more professional support.  I do wonder if the energy they expended in going to the High Court could have been better spent investigating and fighting for more support and investigating more imaginative ways to engage the two men’s minds and get them inter-acting with life despite their undisputed severe physical impairment. 

It is extremely telling that depression, as a treatable illness is never mentioned in the media coverage of severely disabled people campaigning for assisted suicide to be made legal.  This is despite very clear evidence that these people are under a huge amount of stress having encountered a dramatic shift in lifestyle and social status, as a result of sudden severe Disability. The omission of possible clinical depression, by the media from coverage of these people repeatedly saying they wish to end their lives is blatantly a symptom of a disablist society.  This very omission implies that the suicide of a severely disabled person is more understandable, and therefore less tragic, than the suicide of a non-disabled person.           

The conversation between Jane and Felicity carried on for some time and was the platform for some very ill-advised quotes by both women. I am not comfortable with  giving a blow by blow account of the rest of the conversation, but it was evident in my opinion that Jane hadn’t even begun to process the events of the last few months and should have been nowhere near a 5Live microphone.

The feature ended with Victoria Derbyshire interviewing Jane and her three daughters in the studio. This seemed even more inappropriate than the free flowing conversation between Jane and Felicity. The interview seemed incredibly intrusive as Derbyshire went from daughter to daughter asking how they were coping. There seemed an asserted effort by the daughters to deny that they were even mourning Tony because he didn’t want them to do that. The daughters seemed to be focusing on continuing the “right to die” campaign and honouring their father in this way. However, the daughters said some horrifically insensitive things about the issue of assisted suicide which gave the impression to me that they weren’t dealing with their father’s death as well as they maintained they were.  5Live in having them on so quickly after Tony’s death seemed to dehumanise them and Tony, making it all about what they portray as the latest liberal crusade of ordinary people against an unsympathetic establishment. The issues around assisted suicide are of course much more complex than Victoria Derbyshire has ever seemed to consider, why else would she let such emotive, ill-informed content onto her show.

One of the assertions the daughters made was that people who campaigned against any change in the law pertaining to assisted suicide were emotive and illogical. In my opinion the idea that the anti-assisted suicide lobby has ill-thought through emotional arguments is preposterous, especially considering the way people campaigning for a change in the law behave. The way the media colludes with people arguing for assisted suicide is evident in the 5Live piece. It is the worst and most sinister application of the medical model of Disability that says a life is over when a person dramatically loses physical functionality. In its worst instance euthanasia is romanticised as Terry Pratchett does in the extract from his 2010 Richard Dimbleby lecture below:

These days, non-traumatic death – deaths that don't, for example, involve several cars, a tanker and a patch of ice on the M4 – largely take place in hospitals and ­hospices. Not so long ago, they took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London were awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual. (Terry Pratchett’s Richard Dimbleby lecture Shaking Hands With Death, which was broadcast on BBC1 on 1 February 2010)

 

And it’s in this framework that we are lead by the media to understand this issue, there is minute mention of the social effects of relaxing the law on assisted suicide. In many ways the media treat it as a cause celebre that an imagined liberal caring society, free from disablism, could handle and police.  However, the media seems unable even to resist the temptation of holding this debate on the most emotive and sensationalist terms possible. How can we even consider a possibility of changing the law when we are unable to debate sensibly the issues that involve the safety of thousands of disabled and ill people?  The answer is, that it is impossible to, when the BBC even fails to recognise that a grieving family only a month on from a tragic bereavement is not in any fit state to talk about a complex issue that affects many.                

Near the end of the interview there came a shocking question from Derbyshire, she said “Is it alright to ask what you said to him in those final moments with him?” It’s like the access Tony gave in allowing himself to be filmed being cared for was presumed to have been carried over to this interview by the 5Live team. To Jane’s credit she answered in very general terms and in doing so virtually side-stepped the question.  However, there has developed a disturbing kind of voyeurism around the media treatment of families of extremely impaired or ill people campaigning for the right to die which is fundamentally de-humanising.  I can’t help but feel that the media are exploiting confused, stressed, and, in this case, recently bereaved families  with the proviso that they are campaigning on behalf of these very families that they exploit. 

If the media is so fixated by this debate, why are experts in palliative care very rarely asked on these programmes to debate the issue?  Academics, medical professionals and disabled activists should be heard equally as loud as disabled people who want to end their own lives.  I don’t really know why this is not the case but I can guess.  It’s about the story that both feeds off the medical model of Disability but owes a lot to romanticising ideas of euthanasia.  The concept that over time people can adjust to severe impairment is still very unfashionable because, despite us all enjoying the Paralympics, society still gives credence to the idea that some severe levels of impairment are worse than death. 

One of Tony Nicklinson’s daughters is right when they say that many people who are against assisted suicide being made legal are less impaired than many who are fighting for it.  However, this is not a reality across the board as many extremely Disabled people in the later stages of degenerative conditions remain firmly opposed to any way of making it easier for Disabled people to be helped to die.  There are arguments about extreme pain suffered at the very end of life but experts in palliative care maintain that no-one has to endure unbearable pain any more if the right treatment is found for the particular individual.  Indeed, there is already legal room for unlimited pain relief to be administered to limit the final days of suffering. 

What the real crux of the issue is for me, is that people who campaign for assisted suicide don’t focus their argument at all on the relief of severe pain but instead concentrate intensely on the concept of the ‘indignity of Disability’.  This was demonstrated when Victoria Derbyshire asked Jane Nicklinson what she thought Tony’s legacy would be and she replied:

“He’s left behind a huge legacy, the fact that he was happy to be filmed laughing, crying, dribbling, being fed, being hoisted – I think he showed the world how awful someone’s life can be”.          

As a severely Disabled man myself, who gets fed his meals, hoisted in and out of bed and, indeed, dribbles - I find this last quote offensive but more than that I find it highly concerning.  The Social Model teaches us that it is not the impaired body that disables people but rather society’s disabling attitude to that individual. I do not seek to overly criticise Jane Nicklinson personally for what she said, but do whole-heartedly condemn the British media who repeatedly collude with the viewpoint that impairment is tragic.  My life is not awful, and that is not ‘despite me having a severe impairment’ but is because all Disabled people with the right circumstances can lead just as fulfilling a life as their non-disabled counterparts. However the sad fact is that the media misrepresents Disability and makes it a lot harder for people who suddenly find themselves severely impaired to cope with their new situation.  It’s time society grows up and accepts Disabled people.  This is the only way forward for the families who are shocked, confused and traumatised by sudden impairment.  Only when Disabled rights are vastly improved can we even consider starting a sensible debate about assisted suicide but as the BBC Radio 5Live feature, I have discussed, shows we are decades away from that point in time.