Euthanasia - there is a better way

I talked to a professional carer a few weeks ago. She had been caring for someone with terminal cancer to the end. After that she had been on holiday, and had met another carer, a nurse, who'd worked in Switzerland, where assisted suicide is legalised. He too had been caring for a cancer patient. The doctor had prescribed lethal drugs for his patient but would not administer them. (In Switzerland doctors aren't allowed to do the actual deed.) But the nurse was compelled to do it, although it ran counter to his conscience. I presume the patient had requested it.

However the effect on the nurse had been catastrophic. Can you imagine being forced to kill someone when your whole conscience and all your convictions forbade the taking of life? How would you live with yourself? The answer for that nurse was to abandon his vocation and to drown his guilt in a cocktail of drink and drugs. It was taking him a long time to rehabilitate himself, and the scars and nightmares will never leave him, I imagine.

Such is one seldom considered effect of legalising assisted suicide. There are always others involved. There is always some impact on their psyches. It might inure them to the event - which cannot be desirable. Or it might scar them as it did that French nurse.

A Labour MP, Rob Marris, has tabled a private member's bill in the House of Commons for 11th September after MPs return from holiday. It's basically the same old bill that Lord Falconer tried to introduce in the Lords last year, and will be fraught with the same old dangers which have restrained our legislators wisely from going down the same route as Switzerland, Belgium, Holland and a handful of US states. Open the door to "assisting" others to die and you open a Pandora's box of unforeseen consequences. My local MP rightly pointed out that, in Britain, we lead the world in palliative care. Our response to the physical and emotional pain of terminal illness must be to show compassion by extending and developing this further - not by letting people die when they most need encouragement and assistance to live. As evidence from other countries has shown, a right to die would for many be a duty to die. I hope other MPs will also fiercely resist this Bill for that reason.

There is a better way.

Being present at someone's deathbed is always momentous, but usually it is a necessary and healing part of grieving. It can't be that, if one is contributing to the death. But if one is there accompanying the dying person and sharing in their struggle to depart, there is no guilt in the memory, only a sense of a compassionate task well completed.

Two of my great friends have died within the last ten days. They were both men of faith. One died in a hospice and the other died at home. The passing to new life is never easy. It wasn't for them either, but it was peaceful. I suppose the body is very attached to physical life. Matt Redman's song Bless the Lord, O my soul was being sung as one friend died and will be sung at the other friend's funeral:

"Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name.

And on that day
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore
Forevermore."

Whether you have faith, as my friends had, or not, a "natural death" is better than an unnatural one. Hard, but free of the dangers and peculiar consequences which accompany the intentional shortening of life. 

Walking to defeat MND

A week ago, Jane and others were pushing me round the grounds of Blenheim Palace. We were taking part in the annual Oxfordshire MND Association sponsored "Walk to d'feet MND". As last year there were a good number of participants (about 90) and we were blessed with sunny if not balmy weather. The leaves were just starting to turn as you can see across the lake - like Ashburnham Place designed by Capability Brown.

As always with these events, the best thing about them was the company. In this picture I'm being pushed by

our friend Penny whose husband died last year of MND, while on the far right is Matt whose mother died only a few months ago. Talking to me, to the right of Jane, is Jenny Rolfe, the fab OT who works at the MND Clinic in Oxford and who sorted out for me my tilting wheelchairs. To her right is Rachael Marsden, the nurse and presiding genius of the Clinic. They are two of the assets that makes the provision for people with MND in this area so positive. It struck me that part of the centre's secret was encapsulated by the fact that one consultant, the nurse i/c and the main OT were all there on a Saturday in what might be called a work of supererogation, i.e. above and beyond the call of duty. For them it's more than a job, or a career; it's more like a vocation.

Second in from the right here (with the balloon) is Lesley, our indefatigable and endlessly efficient branch secretary. She's one of a group who not only organise such events for us and our families and friends - and, as significantly, is one of those available to visit people with MND from the point of diagnosis onwards. As you'll have gathered from this blog, there is NO way that the professionals, spread as thinly as they are and with resources increasingly squeezed, there's no way that they can respond even to the need of such a rare condition as ALS/MND. So the potential for sensitive Association Volunteers (AVs) to support individuals and families in the frightening reality of the disease is huge. It doesn't always work; personalities may not click. But usually it does.

I must also mention Peter, with the cap on the mini-scooter, with his two glamorous women behind him. He has moreorless completely lost his voice, but he certainly has by no means lost his sense of humour. He keeps me plied with often outrageously non-PC jokes by email. To give one repeatable example which I enjoyed recently:
- An elderly man was stopped by the police around 2 a.m and was asked where he was going at that time of night.

The man replied, "I'm on my way to a lecture about alcohol abuse and the effects it has on the human body, as well as smoking and staying out late." 

The officer then asked, "Really? Who's giving that lecture at this time of night?" 

The man replied, "That would be my wife." - Occasionally Peter drops in a googly in the form of a serious or uplifting reflection on the meaning of life. He used to be a teacher. I bet his lessons were fun!

Oh yes, and did I mention the afternoon was fun too. At least I enjoyed it. Well, I'd have been ungrateful not to have, being pushed up hill and down dale by a succession of nice women, wouldn't I?

Vulnerable AND valuable

The headline yesterday was: 

"Care home staff 'abused elderly': six arrests made

A former matron and five nurses who worked for a care home have been arrested over 'serious allegations' of mistreatment and neglect of 'very vulnerable' elderly residents."

You may remember I was writing about the importance of recognising that all, including disabled people, should be treated with respect (Do not resuscitate) and valued as persons. The Telegraph report illustrates the danger of abuse of the vulnerable, even in places where they are meant to be cared for. The nursing home in question specialises in caring for severe Alzheimer's sufferers, who are, in my view, in the front line for abuse - which, at its extreme, includes euthanasia.

"Chief Superintendent Richard Bayly, from Lancaster Constabulary, said the 'serious allegations' involved 'very vulnerable, elderly residents' and regarded 'a significant number of cases'.

"He said: 'These arrests are a culmination of a thorough investigation into serious allegations of mistreatment of residents at Hillcroft Slyne nursing home.

"'The inquiry is complicated and we have a team of specialist detectives working on this case who are also offering support to those families who may have had loved ones identified as being allegedly mistreated.'

"In May, Lancashire County Council's social care department made police aware of a complaint they had received about the level of care provided to some residents at the home."

After my "Do not resuscitate" post, a severely disabled friend wrote to me about her own experience
"I've been ill for most of the time for the last 3 years, and have spent all too much time in hospital.  The last time was in July 2012, and I came across a nurse with a sickly sweet voice, but who bullied me mercilessly.  She knew that if I swallowed tablets by mouth I would retch and/or be sick, but refused to use the canula, which had been put in (with much difficulty) on doctors' orders only the previous day.  She shouted at me, and refused to use the canula.  I became quite afraid of her.  I phoned my carer and he came immediately.  He managed to put her in her place while remaining entirely polite and calm, but it was a very unpleasant experience.  It made me think of the terrible predicament of those who have no one to stand up for them, or who cannot communicate, or are very elderly, perhaps with dementia. It is such a scary situation for all of us."

My friend is a lovely person who struggles with multiple disabling conditions with amazingly good grace. Yet even for her the sense of helplessness faced with insensitive caring was enough to scare her, and clearly not everyone is fortunate enough to have a competent advocate to call on in time of crisis. As a country, we really must heed the warning signs of a trend, despite Paralympic euphoria, of diminishing our regard for the disabled. Just over a month ago, there was great optimism that an irreversible change of attitude had taken place. If we are not vigilant, it will be more than reversed: disabled new borns and vulnerable elderly will be regarded as legitimately disposable. Then we will have entered a morally bankrupt "brave new world".