Welcome to Life in 361˚. This blog is an 'open journal' - a space where I keep notes on bits & pieces I come across day-to-day - including books and articles I've read that I feel are worth sharing, interesting pictures and photos (I'm a visual learner, you see), random musings - and anything else that happens to catch my eye or ear. It also acts as a kind of 'open experiment' in terms of developing my views and writing skills - and networking with other people of a like-mind.

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30/12/2014

Not In My Name

What follows is my take on the ‘assisted dying’ debate. Forgive me for my plain speaking, but as you will read, this issue is a deeply personal one. I hope, in speaking out, it is also recognised that my opposition is to the position being taken, not necessarily the people taking such positions.

Unlike many friends, I had the benefit of growing up with four grandparents. In fact, I had the luxury of what we might say are five grandparents, with my Grandfather's second wife - although known as 'Auntie Norah' - being for all intents and purposes another grandmother.

It is only in the last few years as I reach my mid-thirties that I have experienced that strange feeling of becoming an 'orphaned grandchild', with three of my grandparents passing away within around eighteen months of one another. I am now left with just my maternal grandmother, Nannan Colette - a mother to six, a grandmother to sixteen, a great grandmother to ten and counting. (The title 'Nannan', I should add, seems to be part of the Sheffield dialect - a derivative of 'Nanna' it would seem.)

The most recent passing was my Auntie Norah, this summer just gone. Our last time together was in the hospital, Norah had been admitted following months of pain from an ulcerated leg. During conversation, on that late-August evening, she spoke about her recent spell of respite in a care home -how terrible it was. Plans were discreetly being made to return Norah to some kind of permanent care on her eventual discharge but that night her heart stopped and she was gone. It would almost seem she knew her fate and decided to take her leave.

Prior to that my Granddad Joe, her husband of forty years, passed in similar circumstances. He too suffered a decline, albeit a slower one over a number of years that included deterioration in physical health and in his cognition as dementia took hold, with his heart eventually giving up. At ninety one, and again with an unhappy time spent in a care home, his passing felt timely - a blessing of sorts.

As sad as I was at these two much loved grandparents dying, I was thankful for their peaceful release from the constraints and affliction age had consigned them to.

Their passing was in stark contrast to that which I had witnessed in 2010, watching my young-at-heart Granddad Roy lose a year-long battle to lung cancer. His final weeks were spent in a hospital being well cared for by a dedicated palliative care team. As the visitors streamed in and out, he was afforded precious last moments with his loved ones. I wrote him a letter explaining how I felt about him and thanked him for all the things he'd contributed to my life. He refused to share the letter with my Nannan Colette but she has since told me he described it as 'fantastic’.

Despite being under expert medical care, Roy’s final twelve hours were nonetheless horrific as he drowned in the fluid of his lungs, his contorted face akin to Edvard Munch's Scream. We, the loved ones, took it in turns to sit with him and nurse him, hug him, pray to God to take him, please just take him. I watched his last breath with an exhausted relief. The trauma of those final hours remains – some of my relatives have needed counselling to get past it. For me, the awful memory of seeing of a loved one in such a state has, with time, faded into the background of the years of other memories.

All of their deaths are felt; most noticeably at times of year such as Christmas, an empty chair in the living room, a missing voice at our dinner tables on a weekend get together, a blank space on greetings cards. But there is also an acceptance that their time had come to an end and with that, a measure of comfort and peace.

Yet there is one death I have yet to mention, one that remains an open festering wound, over a decade old, and with little prospect of healing – the death of my Nannan Else, my paternal grandmother, in 2002.

Elsie was a feisty, sometimes difficult lady and spent her final years wrestling with her demons - bitterly divorced from my Granddad Joe and an early widow to her second husband. Elsie moved from her family to Skegness on the east coast of England in 1991 vowing a fresh start, forbidding any talk of a return to Sheffield as old age began to take its toll on her treasured independence. We paid her regular visits, often for months at a time during summer school holidays.

In the sunset years of Elsie’s life, her health problems – diabetes, severe asthma and a crippling arthritis – increasingly took hold but never stopped her from being fiercely independent. Elsie would continue to care for her neat bungalow which she loved dearly, travel abroad to places such as Malta and drive her 17-year old car Fiat Strada which she named ‘Alice’.

Amongst the cold, dark months of late 2001 to early 2002, her health declined. Winter was always a vulnerable time of year, the quietness of her seaside resort village, the poor weather and the distance of her family would routinely leave Elsie feeling low. This time her physical well-being followed suit. Elsie was taken into hospital, at the time of a national MRSA scare, and confined to a single room as she had been identified as a carrier of the bacteria. This isolation brought her even lower. During those months Elsie regularly expressed a wish to die to medical staff, to end her physical and mental imprisonment. Yet on our visits her mood would lift and she even began to allow talk of moving to sheltered accommodation, back in Sheffield, once fit to be discharged.

Hopes of recovery were ended when my father received a telephone call in late January from a doctor. Elsie was reportedly experiencing kidney failure and they were at a crossroads – to treat her ‘all guns blazing’ or ‘allow nature to take its course’. My father was asked to consult his wife and come back with a decision. The doctor advised the latter, citing Elsie's previous wishes for release. Before my parents could arrive at a decision, within twenty four hours a further telephone call was received to say treatment was now deemed futile and a unilateral decision on the second option had been taken.

My parents visited Elsie the same day; she seemed sprightly and talked of going home, seemingly unaware of the prognosis. My parents returned back to Sheffield. A few days later they received a further telephone call to say Elsie's health had deteriorated. On arrival at her bedside, they found Elsie was barely conscious – under sedation - and would remain this way for the next few days.

On reflection, my parents have since noted the lack of observable care during these final few days – the all-pervading stench from a mucus drainage machine left to the point of overflowing, the lack of food and water provided, the generally poor state Elsie was kept in. On reflection, the medical team had seemingly given up, Elsie was no longer a worthy patient.

The vigils ended with a further telephone call in the middle of night at the beginning of February. Elsie had passed away.

What followed should have been, as with my other deceased grandparents, the difficult yet fairly routine weeks of planning her funeral and clearing out her house. Instead Elsie wasn't put to rest for nearly three months, during which she was subject to two full autopsies - her body in such a state an open coffin was impossible.

What my parents were greeted with on arriving at the hospital shortly after news of her death were two detectives and a high ranking member of the hospital management. Elsie had been taken to a chapel of rest but was not afforded the usual dignities given to the recently deceased; instead she was left in her dressing gown as ‘evidence’. An alarm had been raised by a bank nurse after she discovered the automated morphine machine taken apart, with a morphine overdose having been administered manually to Elsie.

From there our family had to wait on an 18-month long investigation by Skegness police, much of it mishandled and with evidence of collusion with the hospital staff. My parents even came under the spotlight – my mother in particular, given her lifelong career as a nurse, became the lead detective’s target despite a barrage of evidence to the contrary, including detailed forensic evidence.

The investigation was eventually closed with no charges brought, no sight of conclusion. An inquest followed, the police and nurses involved smoking cigarettes together at the doors of the magistrate’s court as my parents entered the building, later joking with one another in the waiting room as my parents sat waiting for answers. No answers were forthcoming, an open verdict reached.

The search for truth, for justice, was singlehandedly taken up by my father for a further three years - a working class man, left to fight huge institutions alone, armed only with pen and paper. His dogged pursuit led to an official apology from Lincolnshire Police, an apology of sorts from the coroner who had overseen a shambolic inquest and, ultimately, a General Medical Council investigation. The GMC investigation proved inconclusive but shed some new light on the grossly conflicting records and testimony given by the nurses involved.

It was also confirmed Elsie's initial diagnosis of renal failure by her doctor was incorrect – the detailed autopsy reports had highlighted this, as does her death certificate. The resultant pathway she had been placed on in the first place, what is often referred to as the ‘Liverpool Care Pathway’, turned out to be a grave error of judgement.

Other routes have been pursued to gain further clarity over what happened to Elsie. These routes have led to dead ends with the authorities citing too much time has passed, they don’t have jurisdiction over retired medical professionals – and ultimately what amounts to, as far as we can say, an unwillingness to take on the challenge of this case.

The reason I share something so personal now is, nearly thirteen years on, there are those who would, albeit inadvertently, wish this kind of situation to become a much more widespread possibility through the introduction of 'assisted dying' legislation.

As I mention above, I have witnessed the torture a dying love one can have to endure; I understand the campaign for 'assisted dying' is based on an attempt at greater human benevolence. Yet the experience of what happened to Elsie - which a leading expert who we met along the way advised us is much more commonplace than we would dare to think - can't but make me anything but opposed to it.

This is not simply a matter of the person facing a potentially horrific end but those tied up with the situation. We cannot opt out of our interconnectedness on this issue. The waves of any death are felt, rippling across the years that follow. Imagine then the tsunami of a death clouded in such uncertainty and suspicion. It proved devastating for my family.

The case for 'assisted dying' has been pushed forward in the main as part of the liberal-left agenda, a progressive platform I have historically supported in word and deed. As a Christian with ties to two liberal denominations, the Unitarians and the Quakers, I have read much about how ‘assisted dying’ is another natural step forward for humanity, it is a fight for the right of the afflicted and dying following on from gay rights, women's rights etc. And so, for someone like me who supports typical liberal-left issues, as someone who supports the basic right of two gay people to be married under the law of the land (whilst cautious about the inherent complexities of how this plays out constructively in the temple), as someone who upholds the basic right of a woman to have a safe abortion (though I hardly think the current figure of 180,000 abortions a year in Britain can be viewed as cause for celebration), there is this automatic assumption I should applaud along. To avoid being viewed as a reactionary brutish conservative, I must sign up to this next notch on the campaign bedpost. Forgive me for my plain speaking but that’s how it seems – it seems that some of my liberal-left brethren, having won much of the battle for gay marriage, now have this impulsive need to do something else that confirms just how progressive and enlightened they are. And by tying it in with other largely unrelated campaigns, there is this air of absolute confidence that they are once again standing on the right side of history.

Having said this, I do not wish to demean the right-to-die campaigners like Debbie Purdy, Tony Nicklinson and Paul Lamb – those for whom this is a deeply personal issue. I cannot know what position I would take were I to face such daily struggles. As someone who spent many years enjoying the thrill and risk of contact sport, the case of Daniel James especially shakes my resolve. However, the same goes for other issues, such as capital punishment. I cannot say for sure, as much as I hope I wouldn’t, that were I to experience a loved one brutally murdered that I would not in turn change my perspective on what should happen to the perpetrator. But, again, it is a question of interconnectedness – we cannot start making laws to serve the few when there is the very real potential of massively damaging society as a whole.

You only have to start digging a little deeper into the ‘assisted dying’ debate to see where any ‘little law’ on 'assisted dying' inevitably leads us. Take this comment from an online discussion about 'assisted dying' on a Unitarian message board:

“I fully support this. Of course there must be safe guards but I do not wish to see people suffer needlessly and that includes me. If the politicians are honest too then they know that the state cannot indefinitely support an ageing population.”

It is just one opinion some will say, but I cannot help believe this is the double-edged logic at work behind the current campaign and we can see the reality of the slippery slope in existing cases such as Nathan Verhelst who sought euthanasia following an unsatisfactory gender reassignment, or the case of an 89-year old retired teacher – only identified as ‘Anne’ – who sought euthanasia because she felt left behind by technology or the case of deaf twins, Marc and Eddy Verbessem, who sought euthanasia after they were diagnosed with a genetic condition that might leave them blind. It is no surprise two of these cases happened in Belgium where the initial ‘little law’ has been progressively extended to now include ill children of whatever age being allowed to request their life be ended.

Or consider the case of Elsie, a forthright old lady taking up a hospital bed who, when it gets too tough, expresses a wish to die.

‘Euthanasia’ can be roughly translated as ‘a good death’ but what good is there when people who have complex problems that need our help - help which dedicated people have sought to create and provide over the generations, giving us the safety nets we have today – are put to death? It seems me that a truly progressive campaign would be to spend more of our time fighting for better care, or perhaps quietly commit to giving up our time and money to deliver better care. Certainly, the battle against HIV, which is now starting to be won following years of such dedication, would not have been won if the onus had been on a 'good death'.

And it is not just the ‘self-righteous healthy’ who are against ‘assisted dying’. Without trying to get into a 'my dad's bigger than your dad' style argument, it is not an exaggeration to say for as many people afflicted by injury and illness campaigning for ‘assisted dying’, there are as many people in similar positions arguing against it. Baroness Jane Campbell, for example, is a compelling voice against the ‘little law’ proposed by Lord Charles Falconer, saying, “It frightens me because in periods of greatest difficulty I know I might be tempted to use it. It only adds to the burdens and challenges life holds for me.” She has described it as a ‘lure to the grave’.

Lord Norman Tebbit, who cares for his severely disabled wife, has also raised an important point about the impact it has on the relationship between the cared-for and the carer, “The Bill would provide a route to great savings in public and private expenditure, and to a great pressure on the elderly, the sick and the disabled to do the decent thing and cease to be a burden on others. Those who care for such people are all too familiar with the moments of black despair that prompt those words, “I would be better dead, so that you could get on with your life.”"

Today, in publishing this post, I wish to add one more voice to those against the proposed ‘assisted dying’ legislation – not in my name.

Elsie - known to us affectionately as 'Big Nannan'

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