distracted by the light

Katya is lying in bed, propped up on pillows, leaning to the right. She has a disposable, white pen torch in her hand, and she’s repeatedly pressing the clip of it to work the light, making the tip glow and fade and glow again. She stares at the light intently, like she’s messaging some deeper part of her brain.
‘The paramedics gave it to her,’ says Pawel, her son. ‘I suppose it’s a distraction…’
‘She seems comfortable.’
He nods.
‘Something to be thankful for,’ he says.
Katya is ninety-eight. She’s had health problems in the past, but this last year has been particularly hard. She’s struggled to recover from pneumonia, her eating and drinking have diminished and her kidney function has tailed off, taking everything else with it. All in all it’s fair to say she’s in poor shape. I review her obs on the chart.
‘Hmm,’ I say, like a bad mechanic, rubbing his chin.
‘What do you think?’ says Pawel. ‘What shall we do?’
Katya flicks the torch off and on.

It surprises me that she’s been discharged from hospital without anyone having a conversation with the family about End of Life care. Without having had the time to build up a relationship with the patient and family, it’s extremely difficult as a community practitioner to walk in the door cold and talk about these things. End of Life is a sensitive area, fraught with complications and heightened emotion. As a result, people tend to shy clear of it, trusting that someone higher up the chain, or further out, someone more experienced in these things, someone with a thicker skin, perhaps, someone on a higher pay band, will broach the subject and ‘manage expectations.’ The majority of families look to medical professionals for guidance. If it’s not forthcoming, they’ll imagine there’s more that can be done, more drugs to try, more procedures to undergo. The result is – almost inevitably – the patient ends up dying on a trolley in A&E. It’s such a shame, and so avoidable.

Sometimes, in these situations, I wish there was an End of Life equivalent of the maternity Doula. I used to come across them as an EMT in the ambulance. They were people who’d been hired by the woman to look after her interests when she went into labour, to act as an advocate for her birthing plan, at a time when she might not be in the right state of mind to speak up for herself. It was all nicely worked out beforehand, and helped enormously. A Death Doula might serve a similar function, acting as an End of Life advocate, making sure everyone was clear about what was happening, what was expected, a steady point of contact between the family and the clinical and care teams, and giving the family a break when they needed time away. Birth and death have a lot in common. They’re both liminal states, a transition from one form to another. They’ve become hyper-medicalised, and something has been lost in the process.

‘So what d’you think?’ says Pawel.
‘Katya’s really not well, but I think it’s a shame just to turn her round and send her straight back to hospital.’
‘Absolutely.’
‘So – we need to have a think. And a chat to her GP. D’you mind if I use your phone?’
‘Sure. Through here.’
I turn back to Katya to say that I’m leaving, and it’s been lovely to meet her.
She doesn’t respond, though, distracted as she is by the flickering white light in her hand.

4 thoughts on “distracted by the light

  1. That’s a wonderful article, Sabine – thanks very much for the link. So absolutely on point. Quite chilling, that bit in the article where it talks about the pressure to transfer her to hospital to ‘clarity her diagnosis’, and later, for investigations re TIAs. It just goes to show how inflexible these systems & procedures can be, and how easy it is to lose your control. Thank goodness she had the Advanced Directive, and the loving support of a family strong enough to ‘hold the line’ when things got difficult.

    As a side note – I googled ‘death doulas’ after writing this piece, and found that it is actually a movement – mostly in the states, but increasing in this country, too. So things are getting better!

    🙂

    Jim

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  2. This is so timely for me – I’m a new lawyer in the US, setting up a solo practice in elder care law. I’ve read a stack of books in the last month aimed at the families of caregivers, and at lawyers for the elders. Yet not one of them makes mention of this movement. I’ve contacted the organization to see if they have information that could help me understand when it would be helpful to suggest this option to a client or their caregivers. Thank you!

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  3. It’s certainly a fascinating & important area!

    The issue of mental capacity and how it relates to Advanced Directives is particularly difficult. For example, (referencing a mainstream patient advice website here in the uk : https://patient.info/doctor/advance-care-planning)

    “A doctor may decide not to follow an advance decision to refuse treatment if:

    […]
    – There is ambiguity in the wording of the directive.
    – It is not applicable to the circumstances. […] ”

    Either of those two things seem to leave the whole thing wide open!
    Of course, the medical teams will be operating in what they see as the best interests of the patient – but this will always be bolstered in no small way by a fear of litigation.

    I think the ethics of the situation have yet to catch up with the medical advances, in this and so many other areas.

    Thanks so much for the comment, Susanne – and the best of luck with your career & new practice.

    J

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