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Archive for March, 2014

So, with the announcement that the Government is to allow MPs a free vote on Lord Falconer’s Bill introducing assisted suicide, legislation on this highly contentious issue moves a significant step closer.

Baroness Butler-Schloss, someone for whom I have enormous respect, feels this is a step too far. In an article in the Daily Telegraph (15/12/2013) she argues that “allowing doctors or others to give active assistance to people to end their lives would cross a vital legal boundary. Laws, like nation states, are more secure when their boundaries rest on natural frontiers,” she writes.

“The law that we have rests on just such a frontier. It rests on the principle that we do not involve ourselves in deliberately bringing about the deaths of others. Once we start making exceptions based on arbitrary criteria like terminal illness, that frontier becomes just a line in the sand, easily crossed and hard to defend. The law is there to protect us all. We tinker with it at our peril.”

However, the law as it currently stands doesn’t go far enough for certain individuals such as Jane Nicklinson, the widow of Tony Nicklinson, the “locked-in syndrome” sufferer who starved himself to death last year after a long battle for assisted suicide, Paul Lamb, a quadriplegic who describes his life as ‘unbearable’ and a man named only as Martin who also suffers from locked-in syndrome.  They are seeking to sweep aside a prohibition on assisted suicide contained in the Suicide Act, using human rights laws.

I can sympathise with arguments on both sides of this case and understand the genuine concerns of the Butler-Schloss camp. However, on balance, I think I’m more inclined to the side of those seeking the right to die. Maybe I’m just not cynical enough to believe that this will lead to an onslaught of doctors ending people’s lives for some arbitrary reason, be it their own or someone else’s.

What I find totally unhelpful in all of this is the attempt of some commentators to introduce a hysterical tone to the whole debate, such as the comments made by Wesley J Smith, a senior fellow at the Discovery Institute’s Center on Human Exceptionalism, who on hearing the news stated:  “UK MPs need just look a short distance across the English Channel to see what your “strict guidelines” will get you; doctor-facilitated killing for the mentally ill, the elderly “tired of life,” a depressed transexual unhappy with a botched sex change operation, euthanasia for children, and a psychiatric patient euthanized because she had been sexually predated by her own psychiatrist. And that’s just scratching the surface.”

Towards the end of my dad’s battle with Alzheimer’s I knew that he had very little quality of life and I also knew that, if he could have seen himself, he would have hated what had happened to him. However, he was in no pain and life was comfortable for him. I was more worried about my mother, herself in her 70s, who was coping with him at home, albeit latterly with the help of a fantastic, private carer. But there would have been no question of us opting to go down the road of assisted suicide for my father even if this had been available to us. Putting aside, for the sake of this argument, his Catholic faith, we could assume that he wouldn’t like what he had become and how he was living but we couldn’t ask him and he was totally comfortable. Fortunately for us, nature did take its course before things become any worse and he contracted a very serious chest infection which, in the end, was what ended his life.

However, I remember when my grandmother was in a nursing home in the 1990s, there was a lady in her room who had all manner of things wrong with her, including Alzheimer’s. She was very thin and her body seemed always to be contorted. I remember she was in a heavy duty canvas cot as she used to thrash around so much she couldn’t be in a normal bed as she would have hurt herself, either by falling or by knocking herself on the rigid raised sides which would have been essential to prevent her falling. When she was very distressed she used to shout out and wail. It was heartbreaking.

On the wall above her cot was a series of black and white portrait photographs of her when she was in her 20s/30s and then a variety of family photos. She had been beautiful: film-star beautiful. The family had put the photos up to remind those looking after her that within this now shell of a human being there had once been a stunning, vital woman who had loved and been loved, had raised a family and had had a life full of meaning which she’d lost in the dementia lottery that we all face. In those days there was no question of assisted suicide and I have no way of knowing whether this would have been her or her family’s wish. What I do know is that, for myself, I would not want to live like this, even with the argument that I wouldn’t know anything about it.

The thing is, Tony Nicklinson was and Paul Lamb and Martin still are in charge of their mental faculties so can tell their families, doctors and lawyers what they want. People who have become mentally incapacitated don’t have this luxury.

With the possibility that the right to assisted suicide could become legal, it’s more important than ever that people think about what their own breaking point might be in the deterioration of their quality of life before assisted suicide becomes a consideration, or if it should never be an option for them, and make sure this is recorded in a living will or in a Lasting Power of Attorney and preferably both.

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I had a great meeting this morning with Paul Fears, a professional photographer. It was an extremely uplifting experience as we chatted for an hour and a half about ……. yep ……. death and dying! The people sitting next to us in the Village Hotel foyer were certainly giving us the occasional funny look probably thinking that we were a couple of macabre lunatics.

I met Paul quite recently at a networking event and we got chatting. He was telling me about his work as a photographer and I mentioned to him that there was a still small but nonetheless increasing demand for professional photographers to be present at funerals to record the event for the family. He wasn’t aware of this. I suggested that he might like to add funeral photography to his portfolio of services, unaware at the time that Paul is especially well qualified to take on such sensitive commissions.

If you visit Paul’s web site (http://www.paulfearsphoto.co.uk) you will see the usual array of photographic services. But there’s one service that Paul doesn’t actively promote, concerned that it might be considered in poor taste: photographing people, many of them children, as they approach the end of their lives.

The very special thing about Paul is that he has lived with the underlying but daily threat of death now for 20 years – and not his own. Paul’s Down’s syndrome son, Greg, was diagnosed with pulmonary hypertension when he was just two years old and his parents were given a life expectancy for Greg of just eight years. He is now 22.

As a result of his son’s illness, Paul has had a lot of involvement over the years with Ty Hafan, a team of palliative care specialists that works with life-limited children and their families. (Go to http://www.tyhafan.org). As anyone who has ever watched a documentary about Great Ormond Street Hospital will know, even when children are seriously ill, life for them and their families isn’t all doom and gloom. There are parties, laughs and jokes set against the ever present backdrop of potential imminent loss. From his own experience, Paul recognised that families might want to capture some of these precious moments for when their child is no longer around, so that, in time, they can look back with happiness on their child’s life and remember the good times amongst the bad. So Paul has been providing this service, free of his professional charges, to families who want it. And his sensitive approach, informed by his own personal circumstances, means that the end results are something that bring the families great joy and comfort.

In addition, one of Paul’s closest friends lost his battle to cancer aged 52. Just prior to his death, Paul’s friend asked him if he would shoot a family portrait. Even though it’s evident that he was very ill when it was taken, surrounded by his wife and children and with a beaming smile, this final photograph is a wonderful memento of a husband and father and is one of the family’s most treasured possessions.

Also, this friend had asked Paul to deliver the eulogy at his funeral that would be a true reflection of the life he’d led and be more of a celebration of the good times. He said that it must be kept secret from everyone until the actual funeral service. Paul had traveled extensively with his friend in their younger days and had lots of stories to tell, most of which the family were completely unaware. There was laughter from everyone in the congregation, including the family, who expressed gratitude to Paul for such a warm, funny and very human tribute to the man they’d loved and lost. While Paul gave a copy of the ‘script’ to the family he admits that what he actually said varied as thoughts had come to him while speaking. He wishes that there had been someone there to video the speech and the congregation’s response to it, believing that this would be a wonderful thing for his friend’s family to have, especially as the children get older and memories fade.

I remember at my own father’s funeral in August 2009, the weather had been atrocious for weeks and I was fully expecting and dreading a grey, very wet, miserable day. In the event, we got lucky and the day of the funeral was beautiful. We all ended up back at my sister’s house. She has a very large back garden and a spontaneous game of cricket somehow came about among the old, not so old and very young in attendance. Cricket had been my dad’s game in the summer. I can remember him sitting for hours with the cricket on the TV in the living room, apparently oblivious to what was going on as he appeared to be totally absorbed in the Daily Telegraph, that is, until one of us dared to approach the TV to switch channels. This was in the early 70s before remote controls. Then he would emerge from behind the paper with a look that warned us not to take another step. I sat watching the cricket and could imagine my dad watching from wherever he now was and thoroughly enjoying the antics out of everyone. It was such a lovely day and I thought afterwards how it would have been great to have some nice photos or even a recording of the cricket game.

Of course, funeral photography is always going to be a very sensitive service and I’m sure that it won’t be for everyone, professional photographers and the bereaved alike. But I believe that, as people increasingly come to view funerals as more of a celebration of a loved one’s life, recording the event, far from being seen as morbid, will be seen as just another way to create and keep yet more precious memories.

In my humble opinion, if anyone is qualified to deliver such a service it would be Paul Fears.

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