Care homes and coronavirus: Could the cure be worse than the disease?
“My mother is a real chatterbox, and though four years of dementia means some of the words are now lost, she never misses a visual cue – it’s impossible to hide a bad mood from her,” Laura says. “One of her favourite things is to pore over magazines with me, looking at dresses and style. She has always been a great believer in John Muir’s mantra: ‘Everybody needs beauty as well as bread’.”
On 15 March, however, as a result of the pandemic, the home closed its doors to visitors to prevent the spread of infection. And, while few relatives would have argued with this decision at the time, the distress the length of the separation has caused is palpable, and the deterioration in many residents’ conditions unmistakable.
Isolation has been a problem for many people during lockdown; but none more so than dementia sufferers in care homes, who may not understand why their loved ones have stopped coming, and are often unable to use the technology which allows others to keep in contact from a distance.
This is certainly the case for Jessica; her vision and hearing are poor, so Skype or FaceTime will bring no comfort. On three occasions, Laura has tried a “window” visit, but again these carry the risk of increasing Jessica’s anguish as she struggles to see through the glass. “The first time was soul-wrenching,” Laura says. “I hadn’t seen her for six weeks and she was slumped in a chair muttering ‘please help me, please help me’ over and over again.”
At that point, Jessica had just come out of isolation for suspected Covid-19 (no tests were available at the time) and Laura could see the deterioration in her mental and physical state was profound. “The staff are wonderful and they do their best, but even they found that one hard-going,” she says.
For care home owners, there is a growing dilemma. Under current guidelines, they can allow visits only if residents are in distress – usually interpreted as in a state of agitation – or at the end of life, when the resident’s condition may have deteriorated so much, there can be no meaningful communication. Laura believes this is cruel; when a loved one is in their 90s, and has dementia, making the most of the time they have left becomes everything. “Quality of life is all my mum has left,” she says. “Quantity is no longer a given.”
Some care home owners agree with this. They believe they can introduce new systems which would minimise risk, but with the proportion of Covid-19-related deaths in Scottish care homes said to be higher than the rest of the UK, and the finger-pointing already having begun, they fear taking decisions which may be perceived to have breached official guidance. Last week, the Scottish Government announced the deaths of all care home residents were to be reported to the procurator fiscal, so those fears are not groundless.
Covid-19 has already staked its claim on Jessica’s nursing home. Several residents have died. A few days after I started speaking to Laura, her mother, too, tested positive. Laura was determined she would not wait until Jessica’s life was ebbing away to see her again. She lobbied the home and was granted one short visit.
“It was truly wonderful and life-affirming for both of us and I came away walking on air,” Laura says. “She chatted away, we laughed together and she knew my name and who I was, even though I was wearing full PPE – she recognised my hair. All this was possible because this was not her final hour, but a chance for us to be mother and daughter again.”
In another part of Glasgow, Karen Murdoch has dug out a lovely photograph of herself and her mother, Margaret, who died five days earlier of Covid-19. They are both smiling, clearly happy to be in one another’s company.
Karen spent an hour at her side, holding her hand, just over 24 hours before she passed away; her older sister went in the following day. By then, Margaret had started to cough. When Karen’s sister left, Margaret was given her first dose of morphine. She died last Saturday night.
During her final visit, Karen was wearing full PPE; she says she thinks her mother knew she was there because she opened her eyes wide to see her properly, and squeezed her hand a few times, but it was clear she was dying.
This visit was the first time Karen had seen her since the home had closed to relatives in March. Before that she visited once a week, with other relatives visiting on other days.
“While I couldn’t be sure she would know who I was, she knew I was someone who loved her, and that I was someone she loved,” Karen says. “I could see it in her eyes – she would reach out and touch me. It was all in the eye contact and the touch.” Latterly, visits were just stroking her hair and her arms to soothe her because she was often agitated. “The staff would say: ‘Thank goodness you are here because she will take her medicine from you.’”
When she walked into her mother’s room last Friday, she was shocked to see her condition. “She looked ravaged,” Karen says. “I spent an hour with her, talking to her up close because you have to be. I was wearing a paper mask and an apron. At one point, she moved her hand up my arm and we had skin to skin contact, and I was conscious that this was not a good thing, but also that this was not what I should have been thinking about as I sat with her.”
Karen has nothing but praise for the staff at the home, who are exhausted from the physical and emotional toll of trying to fill the gap left by relatives. But she believes the final visit came too late. “I think we should have been allowed to see her from the moment she was put into isolation so we could have been there to comfort her.”
Laura too believes we need to open up a conversation about the balance between risk and protection, and to try to find ways to allow care home residents – particularly those with dementia – to see their loved ones.
“My reunion was only possible because of the compassion of staff and management, and because I argued that at 96, with a diagnosis of Covid-19, I wasn’t prepared to wait until my mother was at ‘end of life’ and possibly delirious and unconscious,” Laura says.
“To live is to take mitigated risks. I’m relatively young, fit, healthy, with no comorbidities and my husband and I are not in anyone else’s company. I have no hesitation in arguing that, for me, this was the right thing to do; my mother is a strong, fearless woman who would back me every inch of the way.”
In Scotland, care homes have found themselves at the epicentre of the pandemic, with figures from the Office for National Statistics (ONS) suggesting the proportion of coronavirus patients dying in such premises may be double that in England.
Those statistics have been questioned (there are claims care home deaths in England have been drastically under-reported) but few would suggest the toll isn’t shocking; or that the pandemic hasn’t highlighted long-standing problems with the system.
Whenever there is a crisis, there will be a scrabble to apportion (and evade) blame; and so it has proved here. Over the past few weeks, there has been a clash of narratives. The Scottish Government has repeatedly pointed out that the majority of care homes in Scotland are private businesses and claimed some failed to adhere to its guidelines.
Last week, the Care Inspectorate launched legal action to strip owner HC-One of its licence to operate Home Farm on Skye, where 30 out of 34 residents have tested positive for Covid-19, along with 29 staff – and ten residents have died. The move came after a spot inspection raised serious concerns. HC-One, which runs homes across the UK, paid £48.5m in dividends last year, and had been criticised for bringing in workers from south of the Border to counter staff shortages at Home Farm as the pandemic raged.
Last week, Lord Advocate James Wolffe said the Crown Office was setting up a dedicated unit to examine Covid-19 deaths and that all deaths of residents in care homes should be reported to the procurator fiscal.
For their part, care homes in Scotland say the decision to prioritise the NHS meant normal PPE supply chains dried up, and that the failure to test patients returning from hospital to care homes was partly responsible for the spread of the virus.
“Although the Scottish Government did allocate PPE to providers, that came late,” says Donald Macaskill, CEO of Scottish Care. “It took ages to get testing and there are still major gaps. The First Minister said on 1 May all residents and staff in homes where there had been an outbreak would be tested, but we are nowhere near fulfilling that, and we have had multiple sets of guidance, so I think there are many instances in which social care has been the forgotten arm of our response to Covid.”
Many of those who work in the sector believe those drawing up the guidance for care homes have little idea of the complexities of looking after dementia sufferers, who may refuse to socially distance, and continue to “wander” when they are supposed to be in isolation.
Although staff are doing their best to keep activities going, there will be little stimulation for those who are self-isolating. They are unlikely to be able to read a book or watch TV. And they often become highly tactile to compensate for the loss of other senses. Deprived of touch and stimulation, they may become depressed.
“When we talk of dementia patients in distress we tend to think of them as highly agitated,” Macaskill says. “But distress can also manifest itself as a turning away; they stop engaging; their condition deteriorates.”
Back in March, the care homes agreed locking down was the right course of action. But having witnessed the decline of some of their residents, and the anguish of their relatives, Macaskill and others are increasingly convinced that protracted separation is inhumane.
“Things have been improving – infection rates have been coming down – but there is a danger of us winning the battle, but losing the war; that we are going to lose as many people to the measures of lockdown as we do to the disease itself,” he says.
“Clinically we need to move to a stage where we start connecting people up again because untold damage is being done, especially to individuals who have only got months of their lives left anyway,” he says. “It’s not risk appropriate, and I think, especially where there is capacity, we owe it to people to allow them to be adults and to make decisions for themselves. There’s a human rights issue here.“
Derek Barron is director of care at Erskine, the veterans’ charity, which runs four homes in Bishopton, Glasgow and Edinburgh with a total of 339 residents. Last month, it confirmed three residents had died after testing positive for Covid-19, with a further 21 deaths thought to be related to the virus.
Despite this, he is also pushing for more leeway over visits. “If you asked me what my biggest worry is at the minute, it is that we have residents who have now been in lockdown for eight weeks unable to see their families and their loved ones,” Barron says. “And then maybe the relatives get a call from us to say your mum or dad or husband or wife is poorly, we think you should come and visit them; and that’s eight weeks of life they are not going to get back.”
Barron points out that former chief medical officer, Catherine Calderwood’s strategy, Realising Realistic Medicine, placed the individual receiving health and social care at the centre of decisions made about their treatment, and stressed the cure should not be worse than the disease.
“So, only treat where you know it is going to improve the quality of someone’s life, not simply the length, but what we are doing right now is we are trying to protect the length of life of our residents, and not balancing that with the quality of them,” he says.
Some countries are already looking at innovative new ways for visits to take place. Last week, the BBC ran a story about a care home in the Netherlands which has created a visiting pod – a sort of conservatory with a glass panel separating relatives from their loved ones.
Barron is confident limited visiting could be reinstated in Erskine homes – using testing, hand sanitisers, PPE and relatives self-isolating when they return to the community, where appropriate – if the Scottish Government were to allow it.
“If the guidance said: find a safe way to do it – do all the risk assessments, follow all the infection prevention control, and we will back you up – I could have it sorted by tomorrow, but it doesn’t, so my heart is saying: this is the right thing to do, but my head is saying: if you do that, and then someone dies, you are going to get blamed for it.”
Of course, striking a balance between competing rights is complicated. Not all residents of care homes are over 90; not all those over 90 are physically frail or have dementia; and in any case, different people have different perspectives. Where one family might be desperate for care homes to facilitate restricted visits, others will be totally opposed to any increase in the footfall.
What is not in doubt is the scale of the distress. Over the past few days, I have heard so many heartbreaking tales from people who do not know if they will ever see their loved ones again. Story after story of guilt, confusion and landmark birthdays celebrated apart. Of sons accused of forsaking mothers; of daughters waiting outside windows on the off-chance they might glimpse their fathers; of a woman who felt the beat of her dying husband’s heart through a gloved finger.
If there is one thing Covid-19 has taught us it is that there are no easy answers to the dilemmas it poses. But it is clear we must find a way to have better, less politicised conversations.
“I know people would like me to balance risk and reward, and do it safely,” says Barron, who was recently invited on to the Care Homes Clinical and Professional Advisory Group after complaining about the lack of a care homes representative. “It is possible, but at the moment I lack the bottle because I know what would happen. I would have the government, the press, my trustees saying: ‘You didn’t follow the guidance’.”
Before finishing this piece, I phone Laura to check on her mum. She tells me Jessica has rallied; everyone is feeling more optimistic. But she remains incredibly grateful that she was allowed to spend quality time with her, and believes other relatives should be afforded the same opportunity.
“The government is talking about how we are going to have to co-exist with the virus because it won’t disappear until a vaccine is found, which could be 12 to 18 months away,” she says. “Many of the residents don’t have 12 to 18 months left to live, and even less time when they recognise their family. I do feel ‘banning’ visits to a 96-year-old in her fourth year of dementia is akin to banning a terminal patient from their loved ones. It makes no sense. It’s inhumane. It would be a very sad end to a long life.”
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