WHY DID SHE HAVE TO SUFFER FOR SO LONG?
The Mail’s brilliant cartoonist, Mac, watched as Motor Neurone Disease shut down his beloved wife’s body, leaving only her mind working. Here, he pleads for the law to be changed to allow assisted dying
OVER the past few weeks I have been following with interest the case of Noel Conway. The retired lecturer from Shrewsbury is bravely attempting in the courts to get the law changed so that a person of sound mind but with a terminal disease can choose with help to end their life.
He has Motor Neurone Disease (MND), an affliction caused when specialist nerve cells in the brain and spinal cord called motor neurones stop working, causing wasting of the muscles and gradual paralysis of the limbs.
Mr Conway’s story is of special importance to me because my wife Elizabeth died of MND in March. She was only 69.
She was given the dreadful diagnosis in January 2016. An enthusiastic user of her computer, she had noticed her left hand was inexplicably slowing down and not keeping up with the right.
At first she ignored this, thinking that it was perhaps a strained tendon or maybe muscle cramp. But later, during a visit to the doctor about something completely different, she mentioned the lazy hand and her GP wisely decided to send her to a neurologist.
There followed tests including one where electrical charges were applied to her limbs. Soon after this we were called to the hospital where the neurologists broke the bad news. Elizabeth’s MND was rapid in its progress. From being a happy, energetic and gregarious woman full of enthusiasm for life, a wonderful hostess to her many friends and an adored member of our family, the disease completely enveloped her like some invisible malevolent force.
It sucked the life from each limb one by one, reducing her to an inert collection of useless muscle and bone confined to a bed or a wheelchair.
As if this wasn’t enough, this pernicious and relentless disease laid siege and attacked the muscles in her throat, making it almost impossible for her to perform the simple function of swallowing and, worst of all, to speak.
In just 14 months, the only part of her that continued to function normally was her brain — a brain which was as sharp and as intelligent as it had always been but which struggled to comprehend how, in such a short period of time, her once active body could have changed to one so ravaged and unresponsive.
AT LEAST there were no falls now. In the early days, there had been several. A fall when you have Motor Neurone Disease isn’t like any fall most of us have experienced. An MND type of fall is when your weakened legs give way and you pitch forward. Your arms fail to respond to the brain’s message to buffer the impact and hang uselessly as you topple like a tree, body and face crashing to the ground with sickening force.
Elizabeth and I spent countless hours in A&E. At one time she had a broken bone in her foot, a crack in her upper arm and a broken pelvis all at the same time. Each one caused by the numerous painful falls.
Apart from the four hours’ wait on one occasion, never once did she complain — taking the pain, the bruises and the complete dependency on others as an accepted part of her illness.
Thank heavens for our local authority! Wandsworth Council were extremely generous in Elizabeth’s final stages, providing the funds for day and night carers, wheelchairs, commodes, a hospital bed and an amazing screen which enabled her to spell out messages by just using her eyes.
Soon after the diagnosis and having had the full horror of what was to come described to her, Elizabeth said that she would like to travel to Dignitas in Switzerland so that she could die with dignity and not (in her words) be a thinking vegetable stuck mute in a wheelchair.
I didn’t like the idea of my wonderful, adored wife ending her life in some cold clinic far away from her loved ones and friends and tried my best to dissuade her, but she was adamant. So, reluctantly, I agreed and sent off for the forms needed to enrol.
However, Liz’s Motor Neurone Disease was so aggressive that by the time we received a reply from the Swiss clinic, her disease was so advanced she was unable to board a plane.
Undaunted, she contacted Dignity In Dying, an organisation that campaigns to make assisted dying legal. With its co- operation and help, she made a short film in which she put forward her case for being legally assisted to die.
I took part, but cannot bring myself to watch it.
Liz was barely able to speak, yet struggled bravely to articulate her message that ‘they wouldn’t let an animal suffer like this’, and that people with a terminal illness should have the right to choose when they have endured enough pain and want the misery to stop.
No doubt the great and the good — the judges and the politicians — will look down from their lofty perches and declare that the terminally ill must wait until the disease has run its course and then die peacefully. But I suspect that in all probability they live within a family of healthy individuals totally unaffected by the devastating effect that Motor Neurone Disease has on the person who is afflicted.
THEY are sympathetic, of course, but they are on the outside looking in. More than likely, they have never had to watch, as I did, someone they love dearly being lifted by carers from one chair to another or onto a commode, dead arms swinging like pendulums, an expression of hopelessness and puzzlement on the face that cries out: ‘What’s happened to me? What have I done to deserve this?’
They have not had to spoonfeed their loved one, insert a
finger into the paralysed mouth to dislodge food from the teeth, help them in the toilet, blow the nose or wash and clothe the unresponsive limbs and watch the person they most cherish in the world succumb to these indignities bravely but with all hope gone, apart from the wish to die.
What the judges and politicians are in effect saying is: ‘We agree there is no cure, no hope and, yes, you are going to die.
‘But you are not allowed to die yet: you must suffer a few months more with absolutely no quality of life while nature takes its course.’
Those few months are agony. Not just for the person with the disease but for the people closest to them. Agony to watch as the sufferer loses the ability to speak, to move or to swallow or to do anything but sit and try to communicate with beseeching eyes that they have had enough and want to end it all.
Eventually, Elizabeth’s wonderful carers could not cope adequately with her needs and she spent the last two weeks of her life in the Royal Trinity Hospice, where she was looked after with tenderness and compassion by a superb support team of doctors and nurses.
On March 21, I got a phone call in the early hours of the morning to tell me that my lovely, brave and beautiful Elizabeth had lost her long fight and her suffering was over. But did she really have to suffer so long?
She certainly had absolutely no quality of life in the months before her poor body gave up.
We have all read the reports of the tragic plight of poor little Charlie Gard, the 11-month- old boy with a rare genetic condition who died despite his parents’ legal challenge over doctors’ decision to turn off his life support, and the nation was unanimous in its sympathy for him and his brave and loving mum and dad.
But at the end, a High Court judge decided that Charlie had no hope of a normal life or even a life at all.
My QUESTION is this: In the eyes of the law, should there be a difference between the suffering of a child with a terminal illness and an adult with the same dire prospects?
I phoned Dignity In Dying to ask what progress there had been on Motor Neurone Disease sufferer Noel Conway’s bid to have the law on assisted dying changed and was told that the judges had convened on July 17 but had put off their decision until October.
October? I couldn’t believe it. How could they leave a decision so crucial for almost three months? People with Motor Neurone Disease often don’t have three months left.
‘Be patient,’ they are saying. ‘Carry on suffering, we’ll let you know after the hols.’
Obviously, if judges did decide to rule on allowing assisted dying, there would have to be strict precautions and rules governing the ending of a life, but Mr Conway has my full support and admiration concerning his quest to have the law changed.
He is a brave man and knows full well what is in store for him as this dreadful disease progresses. Who would want that for anyone?
Dignity in Dying can be contacted at 181 Oxford Street, London W1D 2Jt. telephone: 0207 479 7730. Email: info@dignityindying.org.uk