This building may look remarkably like a great cathedral, but there is no God inside, just a High Court Judge.

Today, a couple known only as Mr and Mrs T, are planning to spend their final hours enjoying the company of their baby son. Last night they lost a final legal bid to overturn the ruling of the High Court giving Doctors the power to cease the medical intervention which is keeping him alive.

The parents who are, not surprisingly, ‘deeply distressed’ by this ruling, will have the sympathy of everyone today.

“We are and always will be convinced that despite his desperate problems his life is worthwhile and is worth preserving as long as it is possible to do so without causing him undue pain,” their statement said.

“That was the real argument between us and the doctors — they think his life is intolerable and that his disability is such that his life has little purpose.

John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University has argued “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?” Often people don’t realise how late abortion is carried out in the UK. Over the last four years, there have been repeated calls to restrict the abortion limit, on the grounds that aborting babies at six months (24 weeks) is appalling as babies can survive if born at that stage. But how many people are aware that the 1967 Abortion Act also permits babies to be aborted right up to the moment of birth if the baby has a ’serious’ disability?

The saying ‘two wrongs don’t make a right’ springs to mind.

The ‘Right to life’ argument is intrinsically bound up with the ‘right to death’ argument, a subject which will receive another, long overdue, airing on Monday as a result of Patricia Hewitt’s amendment to the Coroners and Justice Bill.

There will be many who will argue that we have a ‘duty to live’ – and that neither assisted suicide nor euthanasia should be available for those who are not capable either by reduced mental capacity or physical impairment to chose when they die, as permissible under the Suicide Act.

There will be others who will assert that the ‘right to death’ will lead inexorably to a ‘duty to die’ – as exercised by the notorious laws passed in Germany, and expanded upon by the Nazi government, which saw many hundreds of thousands of mentally incapacitated people exterminated.

So it is a timely point to reflect on the fact that The Mental Capacity Act 2005 contains provisions which allow the Court of Protection to decide on the ‘right to life’ for any of us, not just the ‘hard’ cases which we see emotively reported in the mainstream media, whether we should continue to receive the medical treatment which is keeping us alive.

This is not just an issue of free choice in the matter of your own suicide, but a reminder that it is now the law which can exercised your supposed ‘autonomy’ in these matters.

You do not have the right to demand medical treatment – which includes food and water if supplied under medical supervision – you only have the right to refuse it. If you are not considered to have the mental capacity, either because you are a child, or because you have impaired or non existent capacity, then the court can, and will, exercise that choice on your behalf. It is for that same court to decide whether you are able to make a competent choice. Not you.

It is equally a reminder that you, as parents, can only make those choices on your child’s behalf that a court considers to be in the child’s ‘best interests’. You are but guardians, under the control of the judiciary.

We have truly sleepwalked towards allowing the legislature to contain and curtail our lives in ways in which we scarcely understand.

1
janes March 21, 2009 at 15:59

Two cases spring to mind – First, the lack of humanity shown by some ‘medical experts’, in the case of the treatment of a baby born live after an abortion: http://tinyurl.com/dlc3ob

Second, the assisted suicide of a young man left paralysed after a rugby accident: http://tinyurl.com/c7b8ww

I find it hard to condone either of these events. In the first, the baby might well have been saved. In the second, he was only 23 yrs old. Medical research may have come up with a cure in time for him to live a long and productive life.

2
Coco March 21, 2009 at 17:00

Always a tricky one this. Having had the privilege of knowing several MS sufferers and two people with the most dreadful cases of motor-neuron disease, I know for definite what I would want if I was placed in their situations.

However, if I had to help or assist them in any way ………….. I would quite simply not have the courage – because I am big enough to admit that I would not want the threat of a criminal record hanging over me – and I definitely couldn’t do a prison sentence. This leaves me with the dilemma of feeling extremely selfish.

I would always be hoping – as Janes says – that something, somehow would pop into a scientist’s consciousness and save the day.

Of course a law should be passed to allow every individual – over the age of 21years – to decide for themselves. A panel of medics, religious leaders and family should be set up for every individual case ……… and the choice left with the person who has chosen to pass over into the next life ……………..

I fully accept that some individuals do not believe in any kind of after-life …………… and accept their right to pass into Oblivion or dust……….. or wherever else it is that they they think they are going!

But in the name of Christ ………….. allow the sufferer to choose! If they are too young or completely incapacitated …………. refer to the panel.

We wouldn’t allow this to happen to a bird with a broken neck or a horse with three broken legs so why do we continue this debate.

The law needs changing. Today.

3
Gloria Smudd March 21, 2009 at 17:44

Coco says: However, if I had to help or assist them in any way ………….. I would quite simply not have the courage
………………….
You might find the courage if you needed to, if you were being begged by someone you loved to help, you might find the courage. In fact I think one would rather help someone travel overseas for an assisted suicide than to risk that person attempting to take their own life in one of many uncertain, frightening and far from dignified ways.

4
aproposofwhat March 21, 2009 at 17:52

My stepson, who I love dearly, was born at 28 weeks – he is quadraplaegic, spastic, autistic and epileptic,

He is now 20 years old, and though he requires full time care, has an excellent quality of life – we’re off out for lunch and a visit to Grandma tomorrow as we do every Sunday.

It is entirely possible that he would have been aborted under current guidelines – the world would have lost a lovely and inspirational human being.

There are no hard and fast rules here – not knowing the details of the Baby T case, I wouldn’t care to comment, other than that the doctors are within their rights to advise the parents on the likely outcomes, and on the level of suffering that the child is experiencing.

I do not see that the law should be involved here – if the parents wish to keep their child alive, then it should be their decision – the doctors should then do all they can to make the life of the child as comfortable as possible.

On the euthanasia question, having agreed in November that my wife should receive no further treatment, and having held her hand for the last few hours of her life, all I can say is that had I been given the option of making it quicker and less painful for her, I would have taken it. We had discussed the question at length, and agreed that both of us would try to make things as comfortable as possible for the other.

We all have a right to life, but we all need dignity in death as well – those who cannot choose for themselves deserve to have the wishes of their family upheld, and those who choose their manner of death should be respected.

My prayers are with the parents of Baby T – I hope that they can spend the last few hours with their child in dignity and peace.

5
Coco March 21, 2009 at 18:13

I just wish I could Gloria …………. but when it came down to it a few years ago ……….. we got all the EXIT books etc. and I just couldn’t do it for fear of authorities and my job. Barmy isn’t it! I was left feeling such a selfish bastard. Then ……….. sadly it was just too late to take that route because the person wouldn’t have been able to make the journey.

We then had to watch somebody become worse and worse every day for over two years – blaming ourselves for not having the bottle to help. Whenever anybody asks me what is my biggest regret ………… this is one of them.

Hats off to all the wonderful people who have helped others in this way. It is as great a gift to help somebody out of the World as it is to bring somebody into it. This is why I want the laws changed. Today.

6
Gloria Smudd March 21, 2009 at 18:30

I am sorry to hear that Coco. Don’t feel to blame; if anything your experience and that of aproposofwhat proves something about the law as it stands. As Anna’s main article points out, the timing and manner of someone’s death is often under the control of the judiciary, one way or another. The law should be changed to allow provision for assisted suicide in this country.

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Coco March 21, 2009 at 18:45

Too right Glo! We wiill fight them in the anal corridors of Westminster. X

8
Saul March 21, 2009 at 19:06

I don’t have any personal experience of this matter. I can’t imagine the pain involved for the loved ones in these cases, or the sheer bravery of the individuals involved. The only thing I will say is that in my opinion it is the wording that is wrong. Words like Suicide and Euthanasia are very emotive and should be replaced by, Death with Dignity.

Dignity is a basic human right, the rights of people to keep that dignity, up to and including the end of their lives should be maintained at all costs. The time has arrived for a change in the law.

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Coco March 21, 2009 at 19:18

That’s it Saul! Dignity! We should all have this most basic of human rights to allow ourselves to die with dignity! And we should be given the right to help others die with dignity without wondering if the coppers are going to knock on the door and call it murder or manslaughter.

Alas ……….. because of unscrupulous people who may not have the sufferer’s best interests at heart …………. I accept the need for authority figures in the process ……….. Just to ensure that ethical procedures apply and there is no threat to individuals after the event.

10
Old Holborn March 21, 2009 at 22:33

A stunning post Anna

The State now has the power to decide whether a “defect” is tolerable, surmountable or “terminal”. The STATE.

Goebels shrugged

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Saul March 21, 2009 at 23:08

Shades of Carrie Buck.

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aproposofwhat March 21, 2009 at 23:15

OH – sorry to be contrarian (especially as I’ll be pushing a wheelchair tomorrow), but the State is the provider of healthcare in this country.

From a purely practical and utilitarian perspective, the State should be the ultimate arbiter in this case.

From my perspective, of course, I have a different view.

There’s no way I could cope with my stepson on my own – my place isn’t very accessible in a whelchair, and I have no hoist to change him.

That’s why I still cling to my old leftie notion that the NHS is a good thing.

The law does need to change, but for moral rather than practical reasons – and we need to find room in our philosophy for morals, which are sadly lacking in any of the political parties but are most notably absent in New Labour.

13
Gloria Smudd March 21, 2009 at 23:15

Saul – just popping in (having been to village bingo and won chocs, Stella and some tea-towels) to say that the use of the word euthanasia shouldn’t be used in connection with this topic.

Euthanasia happens every day, in hospitals and hospices all over the world – that extra dose is given to terminally ill patients when the ‘end’ is very near and when patients have become defined by their illness rather than by who they were and what they would have chosen for themselves if the option hadn’t been against the law.

Saul mentions the bravery of the individuals involved, those who have the nerve to opt to swallow a barbiturate drink that will stop their heart in 1 minute. How brave and unhappy then, do those same people have to be when, because their relatives cannot bring themselves to help them to Switzerland for fear of prosecution, they have to resign themselves and lose themselves, their independence, their liberty, their dignity, their spirit and their say in how they die until they are confined and just another deathbed case in a hospice or hospital bed, dependent for the hour of their final release on the decision of the nurse or doctor about when the fatal dose is administered.

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Saul March 21, 2009 at 23:30

I think that is what I was trying to say. Each individual should have the right to determine when and how they depart this life. In cases where the outcome is inevitable, at least allow people to choose for themselves. Not based on outmoded laws that don’t consider the dignity of how they depart.

15
Coco March 22, 2009 at 00:06

I have people around me today who thought about Switzerland months ago but who are now too ill to make the trip. Somebody who died not long ago had lost the power of speech and could not even move her facial muscles or use her eyes to tell us how much she hated us all for allowing strangers to see her dribbling ……… never mind having strangers move her body around her bed to bathe her. We had all promised that we would never allow this to happen to her.

She couldn’t scream at us to tell us all her frustrations and pain. We didn’t know if she was truly comfortable in the positions that she lay in. …………. And every single day we sat there, telling her how we wished we could help …………. And telling her how we wish we had taken her to Switzerland. This went on for years. We kept telling her how much we loved her ……………. We knew that all she was thinking was that we couldn’t love her that much ………….. or we would help and put her out of her obvious misery.

Because of the laws that bind both us and the medical professionals ……….. we couldn’t help her at all. She ded thinking that none of us were prepared to go that extra mile to prove that we truly loved her. The law needs changing. Today.

16
Gloria Smudd March 22, 2009 at 00:09

Well, each person doesn’t have that right at the moment. Euthanasia has nothing to do with a change in the law to decriminalise assisted suicide. Euthanasia happens every day and is judged to be a merciful gesture made by those who are licensed to administer morphine when death is inevitable. My point is that many terminally ill people want so much to avoid ending up as that debilitated patient in that bed, waiting for some worthy syringe-wielding ‘angel’ to pump a heart-stopping overdose of a drug, yet the law says it shouldn’t be any other way.

The law needs to be changed.

17
Gloria Smudd March 22, 2009 at 00:12

The law needs to be changed today.

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Coco March 22, 2009 at 00:15

Correct amussimus Gloria!

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Saul March 22, 2009 at 00:20

Please read back. That is what I am saying, let the individual decide for themselves. Once a diagnosis is made you should be able to make your own decision. When I said euthanasia I meant the stigma associated with the word, not the practice.

Let people depart with dignity on their own terms, not ones laid down to them.

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Coco March 22, 2009 at 00:29

I’m that bloody scared and that bloody unlucky I always make sure that I could jump on a plane within minutes if I ever got any bad news! I have already made my will and sorted out as much paraphernalia as I can – to save friends rummaging about in my embarrassing rubbish.

I have ripped up some letters that I wrote to people when I was first did my Will! In – fact I have rewritten my Will a few times I can tell you! I used to spend more time writing letters of forgiveness and love to people that I haven’t seen for years that I didn’t have time to clear out the old under-wear drawers and shoe-cupboards. But I am ready now for when my number is up …………. or when I think it is up.

You won’t see me bearing my Soul before I die ……….. I will be on that plane and seeing a doctor who I know will take good and proper care of me!

Somebody else may have to get all the rubbish out of the garages for me though. I am not wasting time doing them. I will probably still be here when I’m 90! And by then ………… all my mates will be dead anyway and would never have lived to see my old underwear drawers and shoe cupboards anyway!

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Coco March 22, 2009 at 00:30

Baring! Not – bearing! Baring!!!

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Gloria Smudd March 22, 2009 at 03:25

I did read back, but I had grasped and appreciated what you were saying first time round Saul. I choose to question the use of the word euthanasia simply because the papers & ‘rolling news’ banners insist on including it in relation to any debate on assisted suicide and I find that less than helpful; euthanasia (Chambers English Dictionary definition: an easy mode of death; the art or practice of putting painlessly to death, esp. in the case of incurable suffering).

I refer to my previous post – euthanasia is a medical option which is used at the discretion of the qualified health-care operative once the patient is incapacitated beyond hope and there, in a death bed, possibly unconscious and dependent upon unseen, shadowy professionals for the management of their last breath.

Most terminally ill patients are starkly aware of their illness and acknowledge that there are only grim facts to be faced as their body submits to the ravages of disease on the way to death. Some terminally ill patients will take the trouble to research the alternative of suicide. Of those who do, most must surely be so horrified when faced with the blunt truth that by choosing suicide they are as likely to fail as they are to succeed and the best they can hope for may be a drugged/plastic-bagged-asphyxiated-brain-dead-but-very-nasty-for-the-family-to-find death; slow and very ugly, and laughingly likely to be unsuccessful. Some may be prepared to face that rather than to spend every minute of their last days on a hospital ward surrounded by strangers. I would not.

I had the misfortune to spend 4 months in hospital, aged 20, because of a back injury. I was strapped into the hospital bed while my back was stretched, I was brought a pot to piss in, I was given a bowl with a flannel each day with which I washed, I was given Mogadon (a strong sleeping pill at 8 o’clock each night which shut me up until I pissed my bed at 3 am, fighting in my dream but unable to wake), I ate jelly and, since I was in a serious proper-poorly ward and it was during the 80’s, I was allowed to smoke in my hospital bed. I stayed there and I stayed there and I stayed there and I can tell you it was only the hope of an operation to get me back up and out of that ghastly half-life that made the days and weeks and months bearable. I had a 7-hour operation and 4 weeks after that I was able to walk again. Brilliant.

That experience was only bearable because I believed that one day I would walk again. The flannel baths, the painful blood-thinning injections, the injections of dye into the spine (try to keep still for the second and third one of those!), the traction-weights, the nurses who could really hurt you with the injections and the one special nurse who made it her secret project to bruise you as you lay in the bed, …

I had my 21st birthday tied to a hospital bed and I have never forgotten that. I hope I never spend any more of my life in hospital and I hope that those who love me respect that, because I have been there and somehow managed to get out. To go back is my idea of hell.

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Coco March 22, 2009 at 16:49

Gloria!!! Oh my God! I hope you don’t still have nightmares about this episode in your life. My operations seem like a walk in the park after reading this. At least I was given a 60/40 chance of getting off the operating table …………. as an incentive to live!

I still have nightmares about the way I was treated. I felt like I was part of an experiment. I was lucky enough to be unconscious for three months ………. and put all the scary memories down to my over-active imagination because as the doctors kept telling me …………. I was remembering stuff that just could not have happened!!!

To this day I still tell myself that I was not treated like a laboratory animal. But in my subconscious – I know I was. And I sued the bastards in the end. What a waste of five years of my life that was.

I am a big believer in having a family members or friends stay over in hospital to make sure doctors and nurses do their job properly. I had a nurse who would press my drip for an extra morphine shot every time she got to a good bit in ‘Flowers in the Attic’. – I wanted to wipe the floor with her head but she had left the hospital by the time I finally got my strength back. Some poor patients in New Zealand would not have known what they were in for!