Hazel McHaffie

death

A Matter of Life and Death

It’s curious how, right now, so many books are taking me back to my own recent experience in hospital fighting for my sister’s best interests to be respected. One such is  A Matter of Life and Death, written by a palliative care nurse, Kelly Critcher, who elected to take a turn working  in a High Dependency Unit during the Covid-19 pandemic. But it’s been a useful exercise. Listening to  the perspective of the staff dealing with the fallout, gives a more rounded picture, which helps to keep our own personal frustrations in proportion.

Nursing is in Kelly Critcher’s blood; both her mother and grandmother were nurses, but she initially took a different route, first gaining a degree in Business Management, and then going into office life. However, she found no fulfilment in any of the avenues she tried – they were just a job to be done. Her heart lay elsewhere.

From the outset, nursing suited her perfectly, and she loved the energy and drive of a busy general hospital in Greater London, Northwick Park. However, increasingly she found herself drawn to a less high-powered speciality, one that provided holistic care with the patient’s needs centre-stage: palliative care, an area where she could make a real difference to the lived experience of dying.
… to look death in the eye – to save a patient while the fight can still be won, and confront life’s end with grace and kindness when it can’t.

Her book is divided into two parts, the first of which deals with her professional life up to early 2020, and includes so many incidences that resonate with me. On one level it’s confirming; on another it’s disturbing. I so want to defend those patients whose care fell below the standard they had a right to expect, and I commend this brave nurse who has shined a light on the deficiencies, and championed the cause of the terminally ill. There should be no room for entrenched attitudes, arrogant consultants, dictatorial regimes, old-school ways, that ride rough shod over gentle dignified management.
… there are no second chances when someone is dying. No going back to do it differently next time …

When Covid-19 hit the hospitals, the London Borough of Brent, which has some of the most deprived and diverse communities in the UK, became the epicentre of the pandemic. Northwick Park had the worst death rate of any local authority in England and Wales, and was the first hospital to declare a critical incident, when they ran out of bed space and were about to be overwhelmed. Stringent restrictions had to be implemented, including banning visitors. These measures were particularly hard for staff like Kelly, trained in enabling patients and their families to experience good deaths.
All nurses see the value of a friendly visit to a patient, and in palliative care we recognise family involvement and support as integral to what we do. Covid robbed patients of this basic right ...

It’s hard, knowing what we now know, to be reminded vividly about the failures that characterised the early days of the crisis, when the priority was to clear hospital beds to make way for the tidal wave of patients suffering from this new killer coronavirus about which so little was known. Protection was minimal; risks high.

As we know, staff at the coalface were much more aware of what was unravelling than the Government appeared to be. How vulnerable and badly protected they were. How much they suffered having to implement draconian measures, denying families access to their loved ones, even to say a final goodbye.
People were dying alone, and to us that was an abomination.

This book is no literary masterpiece, and in some places the detail is rather too gruesome for a lay readership (IMO), but it does give some useful insights into life on the NHS frontline. It’s sobering to read …
For years we’ve battled against underfunding, working in old, decrepit hospitals with constant bed and equipment shortages. We have faced complaints from patients, families, managers, politicians, the press and the public on a daily basis. Yet, we still pull ourselves out of bed each day and go to work, knowing that at least some of what we are doing was helping to save lives. Then, in those first few weeks (of the pandemic) that seemed like an eternity, we were national heroes, every one of us.
Were we really so ungrateful?

But alongside the negative experiences, it’s heart-warming to be reminded of the courage and kindness and self-sacrifice the crisis brought out in people. I salute them all. And I thank all those NHS staff who have gone to print and shared their side of the story. Time to move on, methinks!

 

 

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Wigtown Book Festival 2021

Here I am again like a pig in muck! Another book festival; another opportunity to attend online; hours spent listening to writers talking about their writing. What’s not to love?

And because I’ve visited Wigtown (Scotland’s National Book Town), walked its streets, and met some of its characters, I feel to actually be there. Even the photos that precede each session take me to the independent bookshops and immerse me in the atmosphere of the place.

This year a particular bonus has been  topics very dear to my heart: death and dying, altruism, ethics, equality.

Salena Godden is one of the foremost performance poets in the UK, but on this occasion she was promoting her first novel, Mrs Death Misses Death, and wow! did she promote it! I’m not normally a huge fan of readings, but in this case the three short readings she did were a major selling point. The writing is lyrical in the best sense of the word, and only enhanced by Godden’s expressive voice and pacing. What’s more, she herself came across as deeply sensitive to the nuances of death and grief. Her own father took his life when she was only a young child, and she has recently lost someone dear to her to Covid 19. She was also unafraid to show her emotion in response to a question about closure from a widow in the audience who has had to leave her husband’s ashes on the other side of the world following his sudden unexpected death. The book is fiction, but explores grief and mourning, invisible missing women, and the relationship the living have with the dead. In the story, Mrs Death takes the form of a black, working class, shape-shifting woman, and she forms an alliance with Wolf, a young, bisexual, living writer well acquainted with death. Together they debate and document experiences and consequences and the meaning of death. The book gives breathing space for the reader to be part of the story too, and Godden has left six blank pages at the end for anyone to add photos or names or tributes to those they have personally loved and lost. She wants these books to be shared and inherited and passed on, to keep those names alive – much as she wants the names of those lost to Covid to be remembered and respected as individuals mourned by family and friends, not as stark numerical statistics. It’s inspired.

Larissa MacFarquhar was in New York but spoke to a live audience in Wigtown eloquently and with real feeling. Her book, Strangers Drowning: Impossible Idealism, Drastic Choices, and the Urge to Help, is about people who live morally-driven lives from choice, people with an extraordinary sense of duty and decency, people MacFarquhar found ‘unquestionably admirable’, who would challenge readers to think about their own attitudes and responses. The people she studied might be loosely described as ‘do-gooders’ (although she conceded that term tends to have a certain kind of stigma attached to it). The stories she shared included altruistic organ donors, an Indian aristocratic lawyer who founded a leper colony on the basis of a fellowship of suffering; a woman who fostered twenty children with special needs; a young couple who struggled with the question of how right/wrong it would be to have a child and spend money on them at the expense of the lives of many many children in underprivileged families; a man who made it his mission to save chickens. In the book she confronts wider issues, such as the conflict beneath how far a person is prepared to go at the expense of their families; how much we may devalue the quiet smaller efforts of those who work with small numbers or build on the work of others as opposed to the titans and entrepreneurs who blaze new trails. It was a fantastic session. And yes, immensely challenging.

Jill Hopper‘s book, The Mahogany Pod, is a memoir about her experience of falling in love in her twenties with a dying man and deciding not to walk away. Now around 50 and herself the mother of a teenage son, she felt ready, after 25 years, to analyse and probe and make sense of what happened to her young self, and in so doing to lay certain things to rest, to stop worrying about forgetting the detail, and to make peace with Arif’s mother. It’s a tender account of what it means to live and love fully in exceptional circumstances, and the changing quality of the grief that follows great loss, and which put her at odds with her peers. It’s surely a tribute to her present husband that he encouraged and supported her in this endeavour. The title comes from the only tangible gift from Arif she was left with once his family had removed everything of his after his death. It’s the distinctive pod of a tree which he picked up in his travels in Zimbabwe, but which is actually native to South America, and the misperception about its origins is symbolic of a number of things which were misunderstood or reinvented in their relationship. Hopper has a lovely gentle manner of speaking and the hour zipped by. Another superb event.

I feel so fortunate to have been able to attend this marvellous festival this week. And a big shout out for the amazing interviewers who were thoroughly well prepared and asked all the right questions. With a couple more sessions booked and still to come I might well be sharing more with you next Thursday too!

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Somewhere in the deep recesses

Cross It keeps cropping up, year after year, doesn’t it? – the banning of objects or activities or statements, lest certain people take offence.

‘Offensive’ includes, not just way-out books and films, but long-standing statues of the Virgin Mary/Jesus Christ/nativity scene, classics like To Kill a Mocking Bird/The Adventures of Huckleberry Finn, Hallowe’en, scarves, crosses, prayers, peaceable religious folk who refuse to compromise on their principles … the list goes on.

I’ve seen the hurtful effects of narrow, rigid intolerance up close, and it’s not a pretty sight. Nor is it edifying to anyone. For me it boils down to arrogance: I’m right; full stop. Ergo, everyone else who holds a different opinion is wrong. Hello? By whose divine decree? Never mind ‘your’ rights, what about those whose rights you’re denying?

There’s far too much talk of rights nowadays, in my opinion. Wow! Only last week we heard that frozen embryos are suing their mother, actress Sofia Vergara, (who?) for the right to life! They’ve even been given names – Emma and Isabella … don’t get me started!

But seriously, in the humdrum everyday world, with rights come responsibilities. And our planet would be a kinder place if everyone tried to put themselves into other people’s shoes, esteeming them as better than themselves. And adopted the ‘Judge no man till you’ve walked a mile in his moccasins‘ principle.

Why am I writing about this on a blog about ethics and books? Well, of course, kindness and justice and rights and interests and conscience all play a part in deciding what’s good and right. But something more specifically triggered these ruminations. Let me explain.

Isolation in a wheelchair I spend a lot of time listening. And over the years I’ve become increasingly aware of older people confiding that they’ve secretly had doubts about many things they were once sure about, but they haven’t liked to voice them for fear of being reprimanded/corrected or of upsetting others. And as the day of death approaches, they can be much exercised by the consequences of their wavering beliefs. What a damning indictment of the rest of us. How have we managed to create a society that means these vulnerable fellow-citizens must worry alone and afraid? And let’s not lose sight of the fact that, when you live alone, largely inactive, with few distractions, such misgivings can assume quite overwhelming dimensions.

Supportive handsAnyway, a couple of weeks ago I had an absolutely amazing conversation with a wonderful elderly lady with advancing dementia. Quite how we got onto the subject I can’t now remember – we roam from topic to topic as the mood takes us – but suddenly she was talking about assisted dying. She had a personal and an intellectual stake in the subject, but had never before talked about it (or so she alleged). Why? Because most people ‘wouldn’t be interested’ in her views, and those who would ‘might not approve’ of her position. We had a brilliant hour and a half together and I’ve seldom left a discussion on this subject more exhilarated. Deep inside this ageing brain, parts of which are definitely scrambling, was a coherent and thoughtful mind that could still argue a logical case and hold a defensible personal viewpoint. My respect and admiration for her is immense. And how sad that a beautiful intellect like that is being slowly but inexorably diminished by this disease. I am doubly resolved to keep her sparking on as many cylinders as possible for as long as it’s feasible.

Oh, and speaking of approaching death … did you know that researchers have found evidence that creative people worry less about mortality because their artistic works will live on after their demise – a kind of existential security. Well, that’s the conclusion drawn from the findings of the people at the University of Kent, reporting in the Journal of Creative Behavior, anyway. Hmmm. We’ve lost a large number of iconic figures this year, haven’t we? Were David Bowie or Leonard Cohen or Victoria Wood or Carla Lane or Ronnie Corbett comforted by the lasting cultural legacy they were going to leave behind? Did it motivate them to keep creating? Rumours abound of highly creative people being riddled with angst, frequently depressed, constantly worrying whether their next work will be a success, whether they are still up to snuff. But, hang on a minute … the Kent study wasn’t done with celebrity figures; it tested psychology students more or less inclined to creativity. So, is it a matter of degree then? OK, I’ll need to think on it. Maybe I’ll talk to my clever friend about it while I still can.

 

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Reflections from the sofa

It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.

There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.

QuestioningMy own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.

I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.

I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.

But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.

I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.

My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.

At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.

See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.

Right to DieI’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.

 

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A time to die

I wonder how many of you watched BBC’s airing of a natural death last week.

Some people, I know, were put off by the tabloid press coverage. What a scandal. Shouldn’t be allowed. Death isn’t a spectator sport. That kind of reaction.

My take on this occasion is quite different. But then, I have been present at a considerable number of deaths.

Michael Mosley’s series Inside the Human Body has been positively awe-inspiring. In my teens and early twenties I poured over Gray’s Anatomy (the textbook not the TV series!) for hours together, and could recite lists of facts about the organs and tissues we all possess. Mesmerising – to me! Sad, eh? Sadder by far though, the sieve that has replaced my brain has allowed most of these facts to escape. However, I haven’t lost the amazement I felt then at how complex and wonderful each system is.

Mosley conveyed that sense of awe too. With his hugely magnified depictions of what goes in inside blood vessels and tissues, ovaries and brains, he revealed the mysteries and magic of a well-functioning body. Truly amazing stuff. And what a godsend for students today studying human biology, I thought enviously.

In the programme on 12 May he took us inside the respiratory system to see what happens as a baby takes it’s first breath, as it grows and the heart and lungs work tirelessly to sustain life every second of every day. I confess I held my own breath waiting for the baby we saw being born under water to emerge unscathed. (I was a midwife in a former life and there’s something nerve-wracking about merely observing and being powerless to intervene, but knowing things could go wrong.)

Anyway, in a discussion of respiration, what more natural event to include than the body taking its last breath? An altogether less anxious thing to observe, I found.

84-year-old Gerald had consented to his death being filmed. Why not? It was dignified and calm, he was at home in bed surrounded by his family. And it was perfectly natural – not assisted in any way. His end was only a few minutes of an hour-long programme and in the context of an entire process. What’s more, the presenter provided quietly tasteful commentary, afterwards remembering his own father’s death, whom he thought of with great affection every single day.

Given that I have sat alongside three dear people during their dying weeks, days and hours in the past nine months, I wondered how I would feel. The answer? Relief that death was portrayed so sensitively. And renewed gratitude for the legacy of wonderfully rich memories left to me by so many special people. Death is definitely not a spectator sport; it’s an intimate and private experience. But neither is it something to be feared or demonised. Well done, Mr Mosley, for getting it just right, say I.

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Parting is such sweet sorrow

Reports of my death have been greatly exaggerated. This week at least.

But one day they won’t be, and I’ve been giving quite a bit of thought to my forthcoming demise of late. Two people I know well are terminally ill right now and that does tend to concentrate the mind somewhat, I find. So forgive a rather more sober than usual reflection this week.

You don’t get to my age without knowing loss. My father died suddenly and dramatically – a heart attack on a bus. My sister-in-law died slowly from cancer. My mother died in steps and stages – a series of strokes and vascular dementia. All were sad experiences and all left the family diminished.

But when I think of how I’d personally like to go, then there’s a clear winner. I’d choose my father’s death (without the bus!) – retaining dignity, independence and enjoyment of life right up to the end, then a nice quick clean end. OK, I know it’s a shock for the family, but it’s a great way to go for the ’victim’. And I’m talking about the victim – me.

Why this navel gazing? This week’s newspaper headlines. I spend time every week with people with dementia, and my recent experience with my mother is still very vivid in my mind, so of course, I pricked up my ears at the big print a few days ago: Britain faces dementia catastrophe …
People now fear dementia more than cancer or even death.

Were you surprised by this? I wasn’t. There’s something particularly harrowing about watching someone you love lose their connection with the world and you. Seeing them behaving in ways they’d be horrified by if they knew. Fearing they have a glimmer of insight. Knowing it’s all downhill. Of course, I know there are wonderful people out there doing amazing things to capitalise on the positive, minimise the negative. And I salute them. But dementia is still a distressing disease. And the statistics are scary.

‘One in three pensioners will die with it.’
‘A million people will suffer from it within two decades.’
‘Twelve times as much is spent on cancer research as on research into dementia.’
‘There are six times as many scientists working on the treatment of cancer.’
‘As many as a third of people who develop dementia are never formally diagnosed, and without a diagnosis they aren’t receiving the services to which they are entitled.’

The facts were spread all over the papers.

It’s a massive and increasing problem. And it’s scaring people rather like the threat of HIV/Aids did back in the 80s and 90s. Only none of us can hide from this particular threat. It isn’t affecting specific groups; it’s lying in wait for any one of us regardless of class or wealth or lifestyle. You can’t buy yourself out of this one. You can’t insure against it. You can’t put yourself outside of its reach by any means except perhaps dying very young. Or committing suicide.

Funding cuts are threatening to reduce spending in the neurosciences (that includes research into dementia and mental illness) by £4 million. But Alzheimer’s Research UK has launched a special appeal for public response to increase investment in this cause. Because the world still isn’t taking enough notice of this massive problem. Is it because so much of the tragedy is played out behind closed doors, I wonder? Sir Terry Pratchett thinks so. And he’s got a vested interest in this.

How sad is that? Sigh.

Me? I’m off to chop things very, very small!

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