Hazel McHaffie

life support

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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Topical stuff

I know my antennae are always tuned to pick up the merest sniff of medical ethics but this week has been a veritable bonanza in the media. Would these headlines grab you too, I wonder? Do the questions trouble you?

Liverpool-pathwayThe controversial Liverpool Care Pathway, for example. Designed to ease the final hours or even days of a terminally ill person’s life: is it being abused? The son of an elderly woman who died in an Edinburgh hospital thinks so. He has accused her doctors of ‘murdering’ her, and the newspaper headlines certainly make the case sensational. At the moment the circumstances are being investigated by the Scottish Fatalities and Investigation Unit, and if anything suspicious is found, it will trigger a police investigation – the first relating to an individual death to be officially dealt with in this way. How do you feel about the LCPathway?

3-parent babiesThen there’s the major news that this country is set to become the first in the world to approve the creation of so-called three-parent babies – a way of allowing couples with major defects in their mitochondria (the bit around the nucleus that contains around 37 of the total 2,000 genes) to have healthy children who don’t die young. What a stooshie that’s causing! And that’s in spite of the fact that it’s the nucleus that carries all the genes for looks and behaviour. And you’re saving babies and parents terrible suffering and distress. Ah yes, BUT it’s genetic modification on human beings, with permanent results for generations to come. And the nucleus and mitochondria don’t operate in isolation; they talk to one another. And the mitochondrial cells control metabolic functions. Who knows what you might be unleashing … and unable to reverse. How say you?

Mandela decisionsThousands of miles away there’s another scenario playing out that currently has the media here in a frenzy. 94-year-old Nelson Mandela is on life-support machinery. The world reveres this man. His countrymen are fervently praying for his recovery. He has six children, 17 grandchildren, and 14 great-grandchildren, who are riven by disagreements and conflict at a time of private sorrow. Decisions about allowing life to end are notoriously difficult – in this case they are set against a nations’ wishes, cultural diktats, family feuding, in the full glare of the media’s eyes. Who should decide? What should they decide?

The joy of lifeRock guitarist, Wilko Johnson, (real name John Wilkinson) is dying of cancer but he’s been inspiring millions with his up-beat approach to the life he has left and his sheer humanity. He had no idea apparently until he saw so much emotion at his farewell concert, that people felt a real personal affection for him. He knows cancer intimately – his wife, his mother, and co-founding member of Dr Feelgood all died of it; he has no faith to sustain him; and yet, in many ways he says, he feels more alive than ever, and a special joy in existing, because he knows every day is special.  How would you respond?

Gene copyrightSpeaking of cancer … should companies be allowed to put a copyright on the genes that cause the disease? Myriad Genetics patented the two major breast cancer genes, BRCA1 and BRCA2, even though the search for the genes was a collaborative effort by thousands of scientists, many of whom were publicly funded. The firm also holds European patents on tests for the disease. In practical terms this means that the UK might be at risk of infringing copyright laws (with all the consequent lawsuits and outstanding royalties) with their own tests using publicly available genetic data. When Angelina Jolie revealed her double mastectomy, she drew attention to the cost of genetic testing (in the region of $3,500). What do we in the UK with our free-at-the-point-of-need NHS make of all this? What do you think?

Phoned decisionsI could go on, with this week’s tales of and life-and-death decisions being made over the phone;

Opt-out donationand Wales approving a system of presumed consent for organ donation, oh and altruistic organ donation (in journals and weekend supplements); and … but I won’t. Your brains are probably crying out for rest after the questions I’ve already thrown into your court.

By way of light relief, in between all this heavy-duty thinking, and working on the publication of Over my Dead Body, I’ve been reading Melisa Hill’s Before I Forget. It’s about a girl whose memory is destroyed in an accident. From the blurb it sounded to be close to my interests, so I picked it up in a supermarket. But … oh dear. Not my kind of thing at all. Style of writing, plotting, characters – I wanted to edit everything. And yet she has THE NUMBER ONE BESTSELLER plastered over the cover.  She’s published by one of the big firms: Hodder. Ho hum!

 

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