Ken has been sent home to die. It says so in the discharge summary, once you get past the medical terminology, acronyms and abbreviations. And if the End of Life description in the narrative isn’t clear enough, they’ve packed him a bag of ‘Just in Case’ medications, or JICs, the medicines the District Nurses will administer to ease the symptoms of Ken’s death. So really there’s no question about it.
It’s worrying that there doesn’t seem to be a ReSPECT form, though. (ReSPECT being yet another acronym, standing for: Recommended Summary Plan for Emergency Care and Treatment). The form clarifies the treatment expectations for a patient, including when they’re approaching end of life. The form gets filled in after a frank conversation with the patient and their family, exploring what they want to happen, what’s important to them, how and where they want to be treated, especially when things deteriorate. Without it, you’re left tiptoeing round the edges of an emotionally fraught subject, to no-one’s benefit, not least the patient. Good End of Life care needs clarity, honesty, stability and forward planning. Without these things it often deteriorates into last-minute fixes, stressful appeals, unnecessary hospital admissions.
In this case, not only is there no ReSPECT form, but neither Ken nor his son Simon seem to have the least clue what’s going on. And if they have been told, the best you could say was that it hadn’t sunk in.
‘What are these?’ says Simon, shuffling through the JIC boxes like a poker player with a bad hand. ‘What are they for, then?’
‘Those? They’re …erm… for a little bit further on. If things change. The District Nurses will talk to you about those. They’re the ones who’ll be giving them, so you don’t have to worry. I’d put them in a cupboard out of the way or something.’
‘Nah. I’ll put them up here,’ he says, stacking them up in the middle of the mantelpiece. A grim talking point. ‘So what d’you need to know? Only I’ve gotta get back…’
You’d know they were father and son without being told. It’s not just they’re both bald, with the same roughly-chiselled head, the same pinched nose and beak-like mouth. It’s something else they share, a startled watchfulness. But if they have the same essential character, Ken is the one you can see is mortally ill. His lips are dry, his eyes sunken, and there’s a dull, liverish pallor to his skin, like someone tried to sculpt a rough copy of the younger man in clay before it dried out.
Encouragingly, the house is roomy and clear, with plenty of space to make the necessary adaptations. There’s a large room immediately adjoining the living room that would be perfect for a hospital bed. All it needs is to clear away the card table and six chairs currently taking up the middle.
‘No. No way,’ says Simon, folding his arms. ‘He won’t want that. He’s got his own bed upstairs.’
‘The thing is, though, Simon, as your Dad’s illness progresses, he’s going to find it harder to use the stair lift. It’ll be much better and safer for him to stay on one level. Also, the hospital bed means he can be cared for more effectively than on his own bed. It goes up and down to the right height, so it’s easier for the carers to do what they need to do. And it’s got a pressure mattress to help stop him getting pressure ulcers.’
‘No,’ says Simon. ‘He won’t have it. He wants to have his friends round to play cards. How’re they going to do that with a bloody great bed in the way?’
‘They’ll think of something.’
‘No. It’s not going to happen. We’ll leave things as they are for the time being, thank you very much.’
He takes me upstairs to look at his Dad’s current bed. It’s a standard divan, standard height. Once Ken lands in it, the risk is he’ll be stuck there and then the carers will struggle to do personal care and change his pads in a safe way.
It’s a common problem. For each patient, of course, their situation is unique, a once in a lifetime event. They can only think about how it affects them; everything else is secondary. For the carers, though, it’s part of their working day. They see a lot of end of life patients. If the carers are to avoid a back injury, they need to be able to adjust the bed to a sensible working height – not to mention the facility to change the patient’s position, to sit them up or lie them flat as required. But it’s awkward to insist on this without making the conversation sound more about the carers than the patient. The trick is to have these discussions before the patient is discharged home.
As a nursing assistant I don’t feel I have the seniority to push the subject with Ken and Simon. Instead I make a mental note to escalate things when I get back to the office.
‘I can’t stay long,’ says Simon, showing me back downstairs. ‘I’ve got to get back to work.’
‘Oh? What do you do?’
‘I’m a delivery driver for a supermarket,’ he says.
‘How’s that going?’
‘Terrible!’ he says. ‘I thought it’d be a breeze but it isn’t.’
‘Why? What’s the problem?’
‘They know everything about you. They know exactly how fast you’re driving, how hard you step on the brakes. They know how fast you go round a roundabout. It’s all monitored by a computer, every second of the day. And if you make the slightest mistake they know about it. If you accelerate just a few miles an hour over the odds, ‘cos maybe someone’s coming up too fast, or maybe you’re overtaking and need to get past, or maybe you’re waiting for a gap to get out and you have to pull away a bit sharpish, because otherwise you’ll be waiting there till Christmas, and you’ve got all these jokers flashing their lights and leaning out of their windows calling you every name under the sun… I don’t know. I don’t think I’ll do it much longer. But the trouble is, there’s not much around. What else am I going to do?’
‘I don’t know. It’s difficult.’
‘Difficult? It’s impossible! The whole day you’re monitored. Like they’re sitting right there in the cab. With a clipboard. Saying Ah-hah!…TICK! …. Yep – Er Hmmm … TICK!… every time you do something they don’t like. And for what? Minimum wage? I don’t think so.’
He stares at me, unblinking, hyperattentive, a holographic version of the onboard computer.
‘Why can’t people just be reasonable?’ he says.
And I tell him I don’t know, but wouldn’t it be great if they were.
Later that week Ken deteriorates, and there’s the inevitable scramble to set up all those things it was obvious he needed from the start.
‘Where did they put the bed? I ask the carer.
‘Where the card table was,’ she says. ‘Which is great, ‘cos there’s plenty of room…’