Hazel McHaffie

advance directives

Documented wishes

Three weeks ago I told you about the real life ethical quandaries I was grappling with in relation to representing my sister’s wishes now she was unable to speak for herself. Sadly our experience degenerated rapidly when she tested positive and was transferred to a Covid bay on a different ward and under the care of a different consultant. No visitors were allowed, and I found myself powerless to defend her or indeed speak to anyone above the grade of Health Care Assistant or junior doctor. She was totally alone, 300 miles away, and her documented wishes were being ignored.

It was only when her condition deteriorated further that I was told I could have 10 minutes, maybe even 30 minutes, with her. Finally I had an opportunity to plead her cause in person. To my horror and disbelief I found that
– no one had even bothered to read her advance directive
– a doctor told me ‘nobody pays attention to a bit of paper’
– the consultant believed he had the right to dictate; his personal preferences for ‘striving officiously to keep alive’ at all costs, over-rode a legal document
– I was subjected to a brutal inquisition about every potential aspect of my loved one’s dying.

I share this in the spirit of underlining the reality. No matter how carefully and sensitively you might prepare for a situation like this, the ethos of one person can completely wreck your plans. And please don’t let’s hide behind Covid. The previous consultant had been exemplary … he showed it could be done remotely.

Mercifully, I knew I had right on my side, I had a sacred responsibility to fulfil, and I absolutely refused to be cowed. We transferred my sister to a wonderful care home where futile interventions were abandoned, my brother and I could be with her throughout the dying process, day and night, and both she and we were cherished and cared for with respect, dignity and love. Death came peacefully and naturally.

My heart goes out to all those families who have no one to defend them. All those who have been separated at this crucial time in their lives. All those whose memories are forever scarred by insensitivity or officiousness or deficient systems. I feel a need to be a voice for them too.

But for now I pay tribute to a wonderful sister, the most selfless and kind person I know Though her own life was chequered with tragedy, she never complained, but focused her energies on helping others. A shining example. And a hard act to follow!

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Marriage, death and blueberry muffins

I’m frequently amazed at how many articles in the newspaper touch on my subject area on a daily basis. Sensationalised often. Distorted even. But drawing attention to important issues nevertheless. Take yesterday’s edition for example.

A judge has just ruled that a 67 year old man who has had Motor Neurone Disease for 10 years, may be allowed to end his life peacefully by declining treatment. So? you might be asking, I thought any mentally competent patient had the right to refuse medical treatment. Indeedy. But in this case the patient has been unable to communicate his wishes directly for some time; he can only use eye movements. An advance decision was formally drawn up last November after several discussions and with all the important people present. Watertight you might think, but apparently a carer who wasn’t there, cast doubt on the nature of the patient’s consent, hence the case went to the High Court for clarification. Sad that the family needed to endure this additional delay and burden. The question is: Would you consent to this for yourself or your loved one? As a professional, would you have allowed it to go ahead unchallenged?

Still with death, an American study (published in Personality and Social Psychology Review) has discovered that awareness of mortality can have positive effects. Really?!! The headline put it: ‘Save your marriage by thinking of death’. Not surprisingly, it makes people value the finer things of life more. But, how ready would you be to clutch at this particular straw?

The social network site Facebook has just launched a new feature to encourage users to sign up as organ donors. It’s reported that 6,000 signed up to Donate Life America by the end of the first day. A ‘health and well-being button’ allows users to register with the optional extra of telling their friends (or the world if they prefer) that they have become potential donors. Question is: Are you a registered donor? If not, would you be more inclined to join up this way?

Me, I’ve been in the business long enough to have registered as a donor online years ago, and to have drafted a formal advance directive which has been duly signed and witnessed, and to have notified my family of all these wishes and intentions. But I’m only too pleased the media are raising the nations’ consciousness of the issues.

But to end of a lighter note … also in the newspaper this week a survey carried out by a food company, actually reported that one youngster in six regarded a blueberry muffin as ‘fruit’ that counted as part of their five-a-day recommended intake. As they say: You’re avin a larf!

Seems to me journalism could be fun!

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Small cogs and big decisions

Atul Gawande is a gifted surgeon and best selling author. No ordinary man, you might think. Better: A Surgeon's Notes on PerformanceAnd yet, in his book, Better: A Surgeon’s Notes on Performance, he concludes that his place in the world, like everyone else’s, is inevitably small. Compared with the people who plan and execute the eradication of polio from southern India, or who operate on and invent new techniques for saving the lives of soldiers on the frontline of wars, or who revolutionise the practical care of patients with cystic fibrosis, he feels his role as a narrow specialist in a well-equipped American hospital shrinks to miniscule proportions. A replaceable white-coated cog in a huge unstoppable machine.

But he doesn’t wallow in self-pity for his bit-part in this play. No, he recommends becoming a positive deviant. You can read about his five positive suggestions for making a worthy difference in Better. They can challenge everyone, not just doctors. I was reading his book on a train at the weekend and I even applied his ideas to my attitude to fellow-travellers.

One of the five suggestions is Ask an unscripted question. That took my thoughts winging back to a TV documentary I saw on 13 July: Between Life and Death. Severely injured in a motorbike accident, 43 year old Richard Rudd is lying immobile in a hospital bed, wired and tubed, comatose and totally dependent. The family know his clear, recently-expressed wish was, in these precise circumstances, to be allowed to die. They’re ready to have the machines switched off.

But then … someone observes that Richard can move his eyes in response to a question. They check. They check again. It’s a consistent response. Evidence that he can now hear. He can understand. He can communicate. But he still can’t do anything else. Nor is there any prospect of recovery.

It falls to the professor heading the medical team to ask the unscripted question: ‘Do you want us to continue with your treatment? If you do, move your eyes to the left. If you don’t, move them to the right.’ After a few seconds of heart-stopping suspense, the eyes shift to the left. At the time I didn’t know whether to feel elated or deflated.

What does this say about the place of advanced directives or instructions to next-of-kin? I’ve documented mine. I’ve signed papers on behalf of my mother, too. Are these wishes null and void? I’ve given it a lot of thought since that programme, and the newspaper articles that followed it. And I’ve concluded that no, in my case, my documented wishes emphatically stand. If I ever get to a stage where all I can move are my eyes, that is not the real me. Please ignore any contradictory instruction I may appear to give in such a circumstance. Better still, don’t ask the question!

I’m with Richard’s mother: ‘You wouldn’t be human if you didn’t wonder if he wouldn’t have been better off dead.’ For myself, I don’t wonder. I know. I don’t fear being dead; I do fear the process of dying. There, my hand is declared. And that’s despite a sobering personal experience I had when my first child was three weeks old.

He collapsed at home and was rushed to hospital, moribund. The paediatrician said there was no possibility of his survival. But two days later he was still alive. Now the consultant said there was no possibility that he would be either mentally or physically normal. He showed me the test results; I knew he was right. I still remember earnestly praying that if this was the case my little boy would just die with dignity now. He didn’t. With or without dignity.

Back then parents weren’t consulted. Just as well really, because if I’d had my way our family would have missed out on thirty nine years of a wonderful son, brother, husband, father, who is perfectly normal in every way – oh, except that he has chosen tax as his career. You have to have a kink somewhere to do that, don’t you? But he would definitely, emphatically, indisputably not be better off dead. If I were ever in danger of acquiring an inflated sense of my own importance, this experience of my fallibility alone would reduce me to size.

But hold your horses … that doesn’t give anyone permission to override my documented instructions! I may be infinitely small in the big scheme of things but I can still make my own big decisions, thank you very much.

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