Hazel McHaffie

Advance Directive

Theory v practice

I’ve studied the ethical issues around the subject;
I’ve talked to many many people with practical experience as either clinicians or patients or relatives;
I’ve even written a book on the subject – Over My Dead Body.
Yes, I’m talking about organ donation and transplantation.
So I knew the facts in theory, but this past week, I’ve had personal experience of the process, and I am impressed in a new and much more profound way by those who commit to this.

Years ago I wrote my own Advance Directive, and to witness it I chose a dear friend, a doctor, who would understand the significance of what I wanted in the event I couldn’t speak for myself – someone I could trust to ensure everything was legal and watertight and fully carried out. We shared so many values. He was twenty years younger than I, so I expected him to outlive me. But last week it was he who suffered a catastrophic haemorrhage in his brain from which there could be no meaningful recovery – exactly the kind of scenario I had envisaged for myself – and it was I who stood at his bedside and alongside his family.

He wanted his organs donated, and was on the register. Of course he did; that was the kind of altruistic person he was. But as I well knew, relatives can veto this request if they can’t bear the prospect. This family didn’t hesitate; they were behind his wishes one hundred percent, instantly comforted by the thought that this selfless act would bring new hope to other families. Now, though, I saw at first hand what they must endure in these circumstances. When we offer our organs in this way, how many of us really think what that will mean to our nearest and dearest? In the midst of their shock and grief, they must listen to and answer so many questions, they must spend so much time waiting and watching, and then have that last goodbye controlled by others.

I saw too, the sensitivity, the professionalism, of ICU staff who maintain the body in optimal condition for as long as needed, and of the transplant team who walk the family through the steps, gently, sensitive to their timing as well as the shelf-life of the organs and the desperate need of potential recipients.

In this case neither the family nor the staff could have handled things better. I was in awe of their commitment, their dedication and skill. My friend would have been so proud of them all, personally and professionally. And I have a new respect for anyone who commits to this delicate and painful transaction. They deserve our utmost respect and gratitude.

Farewell, my kind and gentle friend; you have done a most noble thing.

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Theory versus practice

There’s nothing like experience for teaching you that theory only takes you so far.

For a few weeks now I’ve been living through a situation that in essence could well be fraught with ethical difficulties and conundrums. My sister had a catastrophic stroke in mid-October. She is now without the power of speech, paralysed, and with limited capacity to comprehend fine nuances. Totally dependent on others. Extremely frail with multiple co-morbidities. Furthermore, at times, she has appeared unaware of her surroundings and unresponsive to conversation. Unreachable.

I am her next of kin and her authorised health proxy. She and I together made sure some years back that we had all the paperwork for this in place; signed, sealed and delivered. We also prepared her Advanced Directive, revisited several times to ensure it represents her sustained wish. I am confident it does.

So, here we are, in one fell swoop, in exactly the kind of situation envisaged when the directive might become critical to decision making on her behalf. The consultant taking care of her in the first few weeks has been exemplary – a brilliant communicator as well as so kind and caring. He and I talked about the directive, and a copy is in her medical notes.

But, when exactly does the theoretical become the real? When does treatment become more burdensome than beneficial? When does the prospect of a life of dependence and indignity become so bad that death is a better option?  Who is going to suggest withholding medication in a crisis to ‘let nature take its course’? At what point does someone start that conversation? And who should have the casting vote?

We aren’t there yet. Currently we’re tiptoeing along establishing baselines, testing limits, waiting, watching, thinking. And right now, this week, starting all over again communicating remotely with a new team of professionals in a different ward since she tested positive for Covid-19. Putting someone’s wishes into effect in these circumstances is a far far harder thing in reality than in theory. And I’m so grateful for people like our dedicated consultant with experience and wisdom to guide us. The NHS has come in for some heavy criticism over the past couple of years; I want to shout out for people like him, like every person in the vast team who has made a difference in the care of my beloved relative … a patient who ticks none of the celebrity high-profile boxes, but who has all her life made the world a better place.

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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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