The day after the day before

I can’t say I’m surprised, but I am disappointed. Dignity in Dying (formerly the Voluntary Euthanasia Society) has invested many hundreds of thousands, if not millions, of pounds behind well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation always resists using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So I’m not surprised that MPs have after an impressive debate by a narrow majority eventually given way to the pressure. (My highlight speeches: Tom Tugenhadt (MP for Tonbridge, Con) and Preet Kaur Gill (MP for Edgbaston, Lab) speaking against, and lowlight: Kim Malthouse (MP for NWHampshire, Con) speaking for.) 

So… along with many thousands of disabled and chronically ill people our worst fears have been realised. The House of Commons have narrowly voted through Kim Leadbeater’s Private Member’s Assisted Dying Bill (Terminally Ill Adults (End of Life) Bill). The majority of 23 means that had 12 voted the other way, it would have failed. I am disappointed. However in voting for assisted dying/suicide MPs have inadvertently added to our society’s fear of death, our reluctance to accept dying is as much a part of life as birth. In the words of Job, ‘The Lord gave and the Lord has taken away.’ 

Since having my particular rare and slow form of Motor Neurone Disease for 25 years, the idea of taking my own life has occurred to me and to some professionals. I have as a result thought long and hard about the subject. Personally, although utterly disabled and needing 24/7 hour care, I have no desire to shorten my life, but more generally I also believe that any legalising of causing or contributing to someone’s death is dangerous for society. The sanctity of life or right to life is a principle too important ever to be breached. Once one exception is allowed, you give permission to further breaches in the future. Contemporary examples abroad as well as European history teach us that despite all the initial limitations mission creep will happen. Other exceptions will be legalised on seemingly reasonable grounds, if for six months, why not for twelve, or 24? Why not for any length of “intolerable” suffering? Why not for those who are or consider themselves to be a “burden”? Why not for those who will be too disabled to contribute economically to society? There's not one jurisdiction abroad where the first narrow restrictions have not bit by bit been broadened.

One of the most important interventions before the vote was, in my view, that by the Royal College of Physicians and the Royal College of Psychiatrists a week ago expressing their reservations, including: “Vulnerable patients particularly those with remediable mental health or other unmet needs, are not adequately protected by the current bill.” It is very easy, and understandable, for people with long term disability or incurable illness (such as myself) to have severe depression and mood swings. I’m sorry that not enough MPs heeded the advice of the most involved professional bodies. 


However I have a number of friends who disagree with me, often after personal experience of watching a loved one die. I sympathise and I suppose that I must be glad for them that the MPs have represented their wishes. And I would never condemn them if they decided to choose the route of assisted dying for themselves. I hope they won’t have to.

Meanwhile I trust that, when the Bill comes to the upper house, their Lordships will fulfil their function of revising it wisely and effectively. They certainly have relevant expertise, for example, judges, ethicists, and most relevantly in the field of palliative care - which is in danger of being squeezed following this bill. As Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?” 

On Assisted Dying - a letter to my MP

On 7th October I sent my newly elected MP a letter:

Olly Glover MP                
House of Commons
SW1A 0AA
 
Dear Mr Glover
    

 First, may I congratulate you on your election as our MP.  It was the first time in my memory that someone I voted for has been elected - and I’m now 75!  So I was delighted.  You got my vote not only from a desire to oust the rotten Tory government, but also because of Sir Ed Davey’s obvious concern for the vulnerable in society, like his son, and for their carers.
    You see, I have Primary Lateral Sclerosis, the rarest and slowest form of MND, and my wife has been my sole carer for the last twenty-two years.  As you’ll appreciate, looking after an increasingly disabled aging husband is no small burden, and being increasingly and incurably incapacitated is no joke — and yet we have a remarkably fulfilled life, even if physically circumscribed.  For example we were able to celebrate our golden wedding with a long weekend with our four children and their families this summer.
    The reason for telling you this is that, as you’ll understand, I’ve had a long time to think about assisted dying — not least as my own end approaches.  MND is one of the classic conditions which Dignity in Dying teaches us to fear.  Well, it is a cruel disease from which at the moment there is no escape.  However, the MND Association is actually reassuring about dying (and they should know): ‘The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working… Specialist palliative care supports quality of life through symptom control, practical help, medication to ease symptoms and emotional support for you and your family... In the majority of cases, death with MND is peaceful and dignified.’  So I’m under no illusions about the complexities of end-of-life.
    And I do realise it’s far from a simple issue — and in a way I’m glad it’s going to be discussed thanks to Kim Leadbeater’s early day motion.  But may I ask you to bear in mind when you consider the pros and cons some of the following.
When I was diagnosed as having ‘a motor neurone disorder’, it would have been very easy for me at that point to have assumed the worst and ended it all, had there not been the safeguard of the 1961 Suicide Act.  Prognosis in many conditions (including cancer — remember the Lockerbie bomber?) can only be an approximate art.   
    Not being depressive by nature, I’m lucky, but even I have my dark moments when I wonder how much longer….  For those more prone to depression the temptation to suicide must seem irresistible even though family and friends would be devastated by their loss and they themselves could miss out of more years of real fulfilment.
    I do understand why friends of mine have asked their palliative care doctors not to prolong their lives, but relieve both their symptoms and their pain, and why the professionals have agreed.  That seems to me both right and caring.  There’s a difference between not officiously prolonging and deliberately shortening; and the difference is intention.  
    Life is precious.  I don’t believe it’s our possession; but we are a part of life.  When it lets us go, we should go gracefully; but until then we shouldn’t dispense with it.
The pressure to end one’s life when in my situation is more internal than external, though no doubt there are some unscrupulous families who would wish their ailing or disabled relatives gone.  I remember early in my disease meeting an old lady in a supermarket car park who told us she was just a burden and would be better off dead.  I can now understand her sentiments, but surely the answer is greater valuing and care for every individual.
    I wonder whether the Prime Minister’s enthusiasm for legalising assisted dying has been in any way bolstered by the £20 billion black hole the government has ‘discovered’ in the national coffers, as it would a much cheaper way of taking ‘care’ of us as we approach death than palliative care.  I’ve no doubt that consideration is not what is motivating Ms Leadbeater.  However I’m sure you would agree that living in a society which valued money, or indeed anything, over life would be a desperate thing.
    Reflecting on today’s anniversary (Holocaust Day), I have read again Elie Wiesel’s 1986 Nobel lecture, as he considered how events can take on their own momentum, only to be perceived in retrospect.  ’And yet real despair only seized us later. Afterwards. As we emerged from the nightmare and began to search for meaning. All those doctors of law or medicine or theology, all those lovers of art and poetry, of Bach and Goethe, who coldly, deliberately ordered the massacres and participated in them. What did their metamorphosis signify? Could anything explain their loss of ethical, cultural and religious memory? How could we ever understand the passivity of the onlookers and – yes – the silence of the Allies?’

    As Liz Carr’s BBC documentary reminded us, introducing assisted dying from the most compassionate of motives has scarcely, if ever, remained within its original limits.  I think we all need to be aware of unintended consequences, which history teaches us can be far-reaching - which none of us can predict.
    May I respectfully suggest that for Parliament a potentially more constructive consideration of end-of-life care could be (a) to invest much more generously in palliative care. - Isn’t it the case that hospices rely largely on charitable giving? - and (b) to protect the medical profession better when they are faced with the dreadfully difficult decisions around the end of patients’ lives.  
    Thank you for reading this letter, and may I assure you of my best wishes when you face this very complex and sensitive issue.

Yours sincerely

After a month Olly replied with a much more considered and longer response than one normally receives from an MP. I think he was suggesting that the subject should be exhaustively debated. "With these concerns in mind, I am worried that introducing this measure as a Private Members’ Bill will not allow for full debate and scrutiny of all the relevant provisions.  For that reason I have put my name to a letter to the Prime Minister and Leader of the House, recommending they bring forward a Bill in government time, in order that it has sufficient parliamentary scrutiny and to ensure public confidence in such an important decision." 

I hope my MP's letter is heeded, and that Gordon Brown's proposal for a commission on palliative care is adopted as a better way forward.