Daphne’s dilemma: become increasingly ill herself or risk her mother’s life in a care home?

As the government's failure to protect care homes becomes ever clearer, many families now consider them potential death traps for their loved ones.

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Daphne was causing my registrar concern. Headaches, feeling dizzy; unbalanced when walking heel-to-toe. He called me through to review her, wondering about an urgent CT scan of her brain.

I have known Daphne for years and we usually get on well, but there was an ­atmosphere to start with. Initially, I thought it must have been the masks we were all wearing – PPE conceals the facial expressions that are such an important part of communication – but then I remembered the last conversation I’d had with her, back in late March, as Covid 19 was surging towards its peak. Daphne’s mother, Pat – in her nineties and badly affected by vascular dementia – had no advance care plan. I’d rung Daphne to ­discuss Pat’s resuscitation status, and whether hospital admission would be appropriate were she to become gravely unwell.

“How’s Mum?” I asked, before starting a repeat neurological examination. It all came out. Pat’s constant confusion and paranoia, her incessant crying out for help – only she could never say what it was she wanted – her scary tendency to fall. Even though there was a regular sleep-in carer overnight, the waking hours, day after day, were on Daphne’s shoulders – while she was also trying to maintain her own home life.

The signs that had worried my registrar proved inconsistent. And as Daphne talked about her mum, her voice kept tightening, and her hands would uncontrollably shake. “Physically, you’re fine,” I told her. “But you are falling apart under the strain.” I held her gaze above her mask. “You have got to get yourself some respite, otherwise this is unsustainable.” The eyes that looked back at me appeared desperate. “I’ve said that to Mum’s social worker,” she said. “But there’s nothing they can do.”

This seemed crazy. I sent her home with a promise to ring once I’d been in touch with social care. I managed to get through to Tracy, Pat’s care coordinator, later that day, and set about trying to resolve the situation.

“I’ve told her the exact same thing,” Tracy said, when I outlined the need for urgent respite. “But she’s petrified if she sends her mum into a home, she’ll get coronavirus and never come out again.”

To date, an estimated 20,000 care home residents have died as a result of the ­pandemic, most of whom were cut off from loved ones during their final illness. Although the first wave is now dwindling, Daphne’s white lie to me indicated the ­invidiousness of her position. Seeking ­respite to make her own burden manageable felt like it risked condemning her mum to a horrible and isolated death. Tracy said she would talk to Daphne again.

While many families currently fear care homes as potential death traps, the situation for those who lost loved ones during the first wave is of a different order of magnitude. Separate reports published last week by the National Audit Office and the Association of Directors of Adult Social Services confirm what had seeped into the public domain: between mid-March and mid-April, on instructions from the government, 25,000 hospital inpatients were urgently discharged into care settings in order to rapidly increase acute hospital capacity. This was done without regard to their Covid-19 ­status. Many will have taken the virus in with them, seeding the epidemic that went on to affect more than a third of UK care homes.

It is bitterly ironic that at the exact same time, the NHS was identifying 1.5 million patients to be “shielded” – a complex process that involved compiling data from multiple sources to identify the “extremely vulnerable”. Had a fraction of the attention paid to this group been directed towards shielding the care sector – filled almost exclusively with vulnerable patients – a very different outcome would likely have occurred.

The anger of affected families was further inflamed by Matt Hancock’s claim in May that the government had tried to throw a “protective ring” around care homes “right from the start”. The sense of injustice has led virologist Dr Cathy Gardner – whose father, Michael Gibson, died on 3 April from probable Covid-19, following the discharge into his care home of a known infected hospital patient – to seek accountability through the courts. Gardner’s application for judicial review of Hancock’s “litany of failures” – which has been crowd-funded by more than 1,700 supporters to date – was lodged with the High Court on 12 June.

While Gardner seeks an examination of the decisions that left so many vulnerable people exposed, there are other troubling aspects of the care home crisis that also need independent review. In those fearful weeks of the surge, Italy was foremost in everyone’s minds – how it had run out of ICU capacity, with ventilators taken up by extremely frail patients with very poor prognoses while younger, fitter, adults had to be turned away. No minister would sign off on national plans for how the UK should seek to avoid a similar outcome, leaving local health services to confront the dilemma.

In our area, we held individual advance care planning discussions with vulnerable patients – hence my call about Pat to ­Daphne that day. She found it upsetting, but it allowed her beliefs as to what Pat would want to be factored in. Elsewhere, reports persist of vulnerable patients having been sent blanket “do not resuscitate” or “do not admit” orders – something national medical bodies had unambiguously declared unethical.

Tracy phoned back to say Daphne had agreed to emergency respite care for Pat. But the home required a negative swab test before admitting her. Even now, there is no way in England of getting Pat tested in these circumstances (Scotland does provide this). I told Tracy to pretend Pat had symptoms and order her a home test. I would go round and perform it myself. Just so we could make some headway. 

Phil Whitaker is a GP and writes the New Statesman’s “Health Matters” column. His books include Chicken Unga Fever: Stories from the Medical Frontline (Salt)

This article appears in the 19 June 2020 issue of the New Statesman, The History Wars

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