Hazel McHaffie

decision making

Decision making on the Covid frontline

Jim Down is an anaesthetist and intensivist in University College London Hospitals. He was working as a consultant there when the Covid pandemic hit this country, and in his book, Life Support, he has captured the slowly emerging horror. We all know so much more about it now, but back in March 2020, not even those at the front line were fully up to speed with what was required. Reports were patchy and conflicting; provision was far from satisfactory; knowledge rudimentary.

By his own admission, Jim Down is a worrier, so what should he do in the face of this emerging crisis? Should he go home to his young family? Should he visit his elderly parents? How close should he get to people? Should he wear a mask? In many ways he felt safest at work protected by layers of suffocating PPE.

I confess, the work of an anaesthetist is much more far-reaching than I was aware of. (Apparently 50% of the country still believe they aren’t doctors!) But in reality, as Dr Down says himself, there are few departments anaesthetists don’t support in one way or another. And throughout the pandemic, it’s been the tribe of c11,000 anaesthetists around the UK who have been vital to the Covid response, converting all available space into fully-functioning Intensive Care Units in record time, delivering care to eye-watering numbers of patients, and designing protocols for some of the most dangerous procedures.

Amongst his other responsibilities Dr Down was given ethics to oversee. Forgive me if I home in on this aspect of his roles – it’s part of my personal raison d’etre, as you know. He set up a ‘three wise people system’ for all major and controversial decisions, and established an Ethics Group for the Trust. But questions and dilemmas presented at every level.

The cost of a day on ICU is approx £1700; what benefit does that need to accrue to be cost-effective? What constitutes a meaningful quality of life? When does a therapy become futile? What risk/chance of disability or suffering makes life not worth living? What constitutes meaningful life? Who decides? When resources are stretched beyond capacity in a pandemic how do we compare relative benefits between patients? All questions that haunt medical practice, but with Covid there were three new crucial differences from the normal balancing acts: the sheer number of patients, the flimsy knowledge of this new disease, and the unusual speed with which decisions might need to be made.

Ethical dilemmas presented too around how far to go, when to stop, when to call family in, in situations where so much was unknown. Then there was the matter of how to effectively deploy limited resources – equipment, drugs, people. The staff themselves were suffering from emotional and physical exhaustion, giving them a diminished capacity to empathise with others, poor concentration, irritability, feelings of helplessness, frustration. Not a good foundation for making sound judgements – thereby increasing stress still further.

Dr Down himself adopted a benchmark: What would I do if it was my brother, sister, mother, father, wife, child? It felt like as good a test of a decision’s rigour as he could muster.

But the personal toll was colossal; the work loads unprecedented. One trained ICU nurse to up to six patients instead of the usual one! One consultant to 42 patients. Teams of medical students and surgeons roaming the units twice a day just to turn people from supine to prone or back again. So much was unknown and unknowable. The patients were extremely sick, for a long time, very fragile and unpredictable, and denied family support. With no simple solutions, very few fixed protocols, the staff constantly questioned themselves, worrying about the repercussions of what they were doing.
We are all acutely aware that something could go wrong for any of us at any time. When it happens to a friend we are reminded of our vulnerability.
They were caring for
the biggest cohort of the sickest patients we’d ever seen, and we were desperately trying to work out how to manage them.
And at times they were treating their own frontline colleagues. Sobering indeed.

This book captures the everyday reality, the swing from the sheer mundanity of meetings and conversations at one end, through the anxieties that proved to be damp squibs, to the overwhelming responsibility of far too many competing demands, the crises at all hours, the inability to support everyone all the time. The frustration of insufficient staff or equipment to carry out the fundamental tasks. The constant questioning.

It underlines the enormous debt the whole country owes to the key workers who bore the heaviest burdens for us all.

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Decisions in a time of coronavirus

Week 2 of the lockdown because of Covid-19 and I am reflecting back on an extraordinary seven days. Unprecedented. Grave. Frightening. But one of the most unexpected developments has been a positive one, closely connected to my professional interests: people have been thinking and talking about the ethics around end of life care, and specifically about Advance Directives, teasing out the kind of interventions or treatments they would wish to avoid.

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I wrote my own living will years ago, and have revisited it periodically just to be certain it reflects my sustained wishes. It does. My husband and children have known about the documents and their contents ever since I drafted them, but suddenly these matters seem much more urgent and relevant. There’s a greatly increased possibility that I might become seriously ill soon; that I or they might be called upon to decide whether it’s appropriate or not to accept aggressive or invasive treatment. That it might be futile. So, this week I sent copies of my Advance Directive to refresh their memories as to the detail. If they’re called upon to represent my views, they will know precisely what to say.

However, more importantly, this crisis has prompted other people I know to think about their own mortality and how they feel about these issues, for the first time. Sobering stuff. But so right.

At the very least we all need to have the conversation with our nearest and dearest; better still record our decisions, have them officially witnessed, make the documents known and available.

And the questions even for hardened ethicists have been widened and thrown into stark relief by developments during this pandemic:
what if our hospitals are already full, and I can’t be admitted if I succumb to the virus?
what if being admitted to hospital means I risk dying alone?
what if I live alone and I contract the illness?
what if I fall outside the criteria for treatment?
what if the medics deem me to be highly unlikely to survive?
what if it’s a choice of me versus another patient?
what happens if no-one can attend a funeral?
… and so on …
This public health catastrophe and its horrific statistics has brought us face to face with undreamed-of dilemmas confronting our society in the spring of 2020. Now.

The time has never been more urgent for a weighing up of the risks and benefits, and an analysis of our beliefs and values. For having the conversation. It’s personal. It’s real. It’s not going away.

What will you choose?

 

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Reflections on Mortality

The 2018 Festival is proving to be as spectacular as ever – so much talent, such variety. You’d need to be a complete Philistine not to find something to your taste and I’m having a ball. And there’s so much to soak up around and about the city besides the featured events. During a visit to Blackwell’s book shop for their Writers at the Fringe event, for example, I noticed a book display dedicated to the 70th anniversary of the NHS, several of the exhibits talking about the art as well as the science of caring, and as I sat waiting for the five authors to begin their presentations, it got me thinking.

Wouldn’t we all love to be cared for by a truly empathetic compassionate doctor in our last months, weeks, days? I found one recently – one moreover who recognises that ‘Doctors – like writers, artists, and spies – are professional people-watchers‘. Sounds like my kind of person, huh?

I’ve been intimately acquainted with death since the age of 18. To some extent health care professionals have to learn to maintain a safe distance in order to keep on giving, but it’s a difficult balance to achieve. I once worked with a lovely young doctor (who has been my friend for over forty years) who was so nervous when he had to convey bad news that he giggled. As his colleague I understood it was because he cared too much for his own comfort; the relatives couldn’t know that and were probably appalled by his seeming insensitivity.

Asian American doctor Pauline Chen learned through bitter experience too, and she’s taken the brave step of writing about the difficulties and pain of contemplating death and walking alongside people facing its reality in Final Exam: A Surgeon’s Reflections on Mortality. Like most naive youngsters she entered medicine with a rosy view of saving countless lives; she had no idea of the extent to which death would become such a haunting constant in her career. But in a society where more than 90% of patients will die from a prolonged illness, she joined the ranks of those whose task it is to shepherd the terminally ill and their families through the intricacies and pitfalls of the end, those who are expected to know how to provide comfort and support.

Initially Chen discovered from her mentors and teachers how to suspend or suppress shared human feelings, to adopt the twin coping mechanisms of denial and de-personalisation. At first, too raw to be let loose on patients, she learned to detach from the elderly lady cadaver in the dissection lab where the formaldehyde, used to preserve dead bodies pervaded her clothes and hands and hair – the olfactory version of a high-pitched shriek. Once out in the clinical arena, she had far more disturbing senses to deal with and she learned to avoid, obfuscate, reinvent, disguise, deny.

‘Even medical students chosen for their humanitarian qualities and selected from a huge pool of applicants may have their generous impulses profoundly suppressed by their medical education.’

But gradually, painfully, she came to realise, through a multiplicity of small inconsistencies and troubling paradoxes, that these techniques were in fact incapacitating her. She began to extricate herself from those same learned responses and to open herself up to something far more rewarding than curing someone. She came to see that when terminally ill patients were ‘Pushed to view their own mortality directly, they too would live the remainder of their own lives that much more fully than the rest of us.’ New dimensions, wider horizons, opened up to her: that, in fact, ‘… dealing with the dying allows us to nurture our best humanistic tendencies.’ And she came to appreciate the advice of a much respected colleague who was both oncologist and cancer patient: ‘You’ll be a better doctor if you can stand in your patients’ shoes.’ That the ‘honor of worrying – of caring, of easing suffering, of being present – may be our most important task, not only as friends but as physicians, too. And when we are finally capable of that, we will have become true healers.‘ I love the idea of it being an honour to worry and care.

Final Exam is a beautifully crafted book, from the simple but evocative cover and the so-apposite title page, through the quality paper, to the single tribute on the back from one of my favourite medical authors, Atul Gawande:
‘..a revealing and heartfelt book. Pauline Chen takes us where few do – inside the feeling of practicing surgery, with its doubts, failures, and triumphs. Her tales are also uncommonly moving, most especially when contemplating death and our difficulties as doctors and patients in coming to grips with it.’

In telling the stories of many of her patients alongside her own, Pauline Chen has generously shared what it means to have the grace and humility to examine our own imperfections and misconceptions, to learn from the honesty, pain and sorrow of others, to become a more empathetic and warm human being. We don’t need to be practising health care professions to learn from her example.

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On the receiving end

Hmmm. And I thought I was clued in to other people’s viewpoints and pretty empathetic. After all, I’ve spend years actively listening and trying to understand how they tick, in my professional as well as personal life. Shame on me. But … hey ho, I guess one is never too old to learn.

It’s fifty plus years since I began my working days in the NHS, and here I am in 2017 still following medical advances and thinking about modern challenges all these decades later. But lately I’ve been seeing things from a very different perspective; my eyes have been opened to a different kind of reality.

In June I was diagnosed with a malignant tumour. It was surgically removed within 24 hours, but last week I was back in hospital again for second-stage surgery. My care throughout has been exemplary – efficiency, kindness, courtesy, skill, compassion, they all seem to be drip-fed at all levels.  Goodness, I even had a reply from the Medical Director thanking me for my letter of appreciation! Way beyond the call of duty.

But one practice in particular has struck me forcibly. in ‘my day’ the medical team told patients what was in their best interests; today recipients of care are consulted and encouraged to share the decision making. My dentist takes this approach and, knowing nothing whatever about dentistry, I confess I struggle with the responsibility sometimes. I want to say, ‘I don’t know – you tell me!’ When it comes to my physical health I’m a lot more confident; my background and knowledge stand me in good stead. But I do wonder if all this choice and shared decision-making isn’t rather bewildering for the average ordinary Joe Bloggs. How do they know what’s best? Have they ever thought about mortality/morbidity statistics, or quality of life issues, or palliative versus aggressive care?

My novels are designed to help people get inside the skin of those faced with extremely difficult challenges, to increase empathy and understanding, to help formulate sound reasoning. But maybe there’s a case for exploring the more mundane and less dramatic/harrowing situations which people are facing every day. It has taken my own brush with cancer to open my eyes to the impact of this common reality. Just shows you.

Report card reads: Could do better.

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