End of life care in lockdown: how Covid has changed the way we say goodbye

Watching her stepfather lying in his hospice bed, Hannah Gibbs carefully removed her face mask once staff had left the room. 

It was just one of the many precautions she and her family had to take as they navigated the new rules that the pandemic had brought to those saying goodbyes to dying loved ones. 

‘He must have struggled to tell what was going on at times,’ Hannah recalls. 

‘We had to wear masks when medics were around, but we were allowed to remove them once it was just family. Mike had all of us around him; my mum, me, my brother, his brother and even his dog Alfie.

‘We were holding him and telling him we loved him until he stopped breathing. It was as peaceful as it could be.’

Hannah’s stepfather, Mike Foster, died last June after being taken to a hospice four days earlier.

Until then, Hannah and her mum, Julie, had been acting as his main carers in their home, as the Covid-19 crisis triggered a change in end of life hospital care.

‘When coronavirus stopped his access to chemotherapy sessions there was no Plan B,’ remembers Hannah. ‘It felt like he had been written off.’ 

Currently the total number of UK deaths from Covid-19 exceeds 115,000, however this figure doesn’t account for the many other deaths occurring nationwide during the pandemic due to cancer, strokes, heart attacks, accidents or crime; domestic violence is on the rise during lockdown.

In a recent survey by the bereavement charity Sue Ryder, 55% of people who experienced the death of a loved one during UK lockdown have admitted that they feel like ‘just a statistic’.

There’s no doubt that coronavirus has put an impossible strain on the NHS, but with carefully made end-of-life plans suddenly thrown into chaos, the impact on those with just days or months left to live has been immense. 

‘While the approach to end of life care has not changed, we had to have more conversations about advance care planning with patients and families,’ explains Dr Paul Perkins, Sue Ryder Chief Medical Director and Consultant in Palliative Medicine at Sue Ryder Leckhampton Court Hospice.

‘The most important conversation is around whether patients would want to be admitted to hospital if they become ill, or prefer to stay at home with support from our hospice at home services.

‘If someone who is terminally ill had to go to hospital, they wouldn’t be able to spend as much time as they would want to with their families because of restricted visiting. It’s possible that they would not be able to see their loved ones to say their goodbyes. Our hospice at home teams can ensure that people can stay at home with their family for as long as possible.

‘For many patients and families, the restrictions around visiting are particularly painful and we worry that this may have a significant, lasting impact on their grief.’

At the height of the crisis last year, hastily-constructed palliative care plans were being put into place for dying patients across the country. Hospitals banned visits from relatives in order to prevent the virus spreading, while many hospices restricted visitors to just one relative. 

Saying goodbye in full PPE soon became the norm. 

Meanwhile, those unwilling to be separated from loved ones in their final days chose to keep them at home for end of life care in order to be guaranteed a goodbye in person.

Barrister Hannah, 29, says that when her stepfather’s palliative care for a life-limiting brain tumour he’d been diagnosed with in 2019 was stopped, she felt let down by the hospital. 

‘They said they were trying to reduce the risk of people getting Covid-19 and it was agreed that he would come off the chemo,’ she remembers. ‘It felt like the view was being taken that if it’s not life saving treatment you were resigned to the rubbish heap of patients.’

Diagnosed at just 56, Mike had been given a life expectancy of 12-18 months.

Then a year ago, after several surgeries – which had caused Mike to lose the ability to read and write overnight, and also caused partial blindness – the family discovered that his tumour was shrinking. 

‘It was quite unexpected and gave us some hope that he’d outlive the prognosis,’ says Hannah.

Mike had also started a six-month course of chemotherapy and a further scan in March showed the tumour was stable.

‘Then coronavirus happened,’ remembers Hannah. ‘It was frightening as hospitals suddenly felt like a real danger zone. We saw a consultant who suggested Mike stop his chemotherapy even though he had three months still to go. 

‘Mum felt a little confused and fearful of the virus, she also understood that the chances of chemo shrinking his tumour further were low so she didn’t challenge the decision.’

Shortly after his treatment stopped, Hannah says that Mike’s health began to nosedive.

‘Our daily focus became managing his needs,’ she remembers. ‘His next appointment was via telephone set for August, which seemed like such a long time away when dealing with such a serious prognosis. But then, Mike started to have multiple daily seizures. Mum contacted the hospital but no-one rang her back.

‘We ended up going via the GP to obtain treatment for the seizures but for four weeks it was uncontrolled, which was terrifying.’

Hannah says the family felt like they’d been left to cope alone as ‘no one from the hospital was checking in’.

‘I don’t think it would have happened pre-pandemic,’ she adds. ‘With service as usual very much suspended at that time, it felt like Mike had been put on the path to death rather than any active treatment programme.

‘We had district nurses coming five times a day but when you’re caring for someone at home you’re still alone for 20 hours out of the 24 hours a day.

‘We weren’t trained to do things like lift him, but we did our best to manage and we couldn’t ask other members of the family to help as we were so worried about him catching Covid-19 and having to go into hospital where we wouldn’t have been able to visit.’ 

In the weeks before his death, Mike desperately needed in-patient care due to increasing mobility problems. ‘We’d hear that a bed might come up then discover there wasn’t a place. It was very ad hoc, we were waiting for pieces to fall into place with little control.

‘The only alternative suggested while we were waiting for a hospice place was that Mike go into a nursing home, but that was likely to be much more restricted in terms of visiting – with a query as to whether any of us would be able to visit, or whether just one person would.

‘That would have been intolerable for his other loved ones to effectively say goodbye to him to die.’ 

Eventually, Mike was admitted to St Clare’s Hospice in Harlow in June last year. Although it wasn’t the hospice they’d planned for him to spend his final days in, Hannah can’t fault the treatment he and the family received. 

‘They were compassionate and brilliant despite the restrictions. I’m glad he was there in the end,’ she says. ‘We were allowed in but we had to wear PPE while clinicians were in the room – although, thankfully, we were able to remove it to say our goodbyes.

‘Mike needed us. He couldn’t have been without us. It would have been a terrifying and dreadful end if he had.’

As someone who works in a busy London A&E, as a doctor of emergency medicine, Peter Long admits that the last 12 months have been his toughest yet. He’s seen families turned away from the hospital doors when they’ve tried to visit a dying loved one, while others have been too fearful to step inside. 

‘I saw more patients die last year than in the 13 years I’ve been a doctor put together,’ admits Peter, who’s speaking under a pseudonym. ‘At the start of lockdown some people weren’t allowed to come into the hospital to be there, while some families didn’t make it in time to say their goodbyes. We did our best to get relatives in but sometimes a family didn’t want to for fear of the virus.’

Peter explains that usually most patients don’t die very quickly in A&E – that was, until the pandemic. 

‘People weren’t coming until they were really, really sick with Covid-19,’ he recalls. ‘I’ve never seen people deteriorate so quickly from anything in quite the same way that they have done with this.

‘It’s been a huge challenge throughout the pandemic to have to separate unwell patients, both Covid and non-Covid, from their loved ones and it’s not easy to hold someone’s hand as they’re dying. Wearing PPE, you feel there’s a barrier between you and the patient.

‘Most families have been very grateful, obviously they’re upset, but there’s been very little anger or resentment for not being able to be there themselves.’

Peter explains that from the end of April last year, they began introducing iPads to the hospital wards, so patients could try and Facetime their families on both Covid and non-Covid ICUs.

‘Of course it’s not a perfect way to say goodbye, it’s incredibly impersonal,’ he says.

‘But it does allow families to see that their loved ones are being cared for and that someone’s with them. That’s important.’

Music teacher Sophie Murfin faced a double tragedy during lockdown.

Her pregnancy had been normal until a heart problem was detected in her unborn daughter, Violet, at the 20-week scan in February last year.

Called hypoplastic left heart syndrome, it meant one side hadn’t developed properly and it was likely that she would only live for a few hours or weeks at most outside the womb.

In a tragic twist of fate, a few weeks before the scan, Sophie’s grandmother Liena, 85, had been diagnosed with terminal cancer and given just a few months to live.

Sophie, who lives in Cwmbran, South Wales, knew it was unlikely Liena would survive until the baby’s May due date but, incredibly, she was still here when three days before a scheduled induction, her daughter was born.

Following her birth, and with the help of Bristol’s St Michael’s Hospital team, Violet was then transferred out of the hospital via ambulance in order to meet her terminally-ill grandmother, who had decided to stay at home rather than go to a hospice. 

It was there that both Liena and Violet would spend their final days.

‘There was no way I was going to let Violet spend her first and final days in a hospice. With the lockdown in place, I knew it meant that the family wouldn’t be able to visit her,’ says Sophie, 28. 

‘As Gran was being cared for at home, the plan was to keep them together.’

Sophie admits that it was scary not knowing what palliative care for a baby would be like, especially given the restraints of lockdown. 

‘But no-one said how truly wonderful the time with Violet would be,’ she says. ‘The minute we got through the door I took Violet up to meet my grandmother. It was such a special moment. The joy in Gran’s face was priceless.

‘We managed a lot in 11 days. We were both christened in the garden, with family and friends on Zoom and Gran was listening through the window from her bed.’

Unknown to Sophie at the time, with Gran and great-granddaughter undergoing end of life care simultaneously, they were destined to die on the same day, June 3.

Violet passed away peacefully just three hours after her great-grandmother.

‘That day, it didn’t feel like there was a pandemic, apart from the nurses wearing full PPE. We were just in our own little bubble,’ explains Sophie.

Now, as the vaccine roll out gathers momentum and already over 12,000,000 people having received their first jab, only time will tell how this latest chapter of the pandemic might impact end of life care.

However, hospital worker Peter remains keen to dispel one notion brought about by the horrific lockdown restrictions. 

‘There was a feeling that people were dying without their families. That perhaps that they were dying behind a curtain with nobody looking after them, he says. ‘But, in my experience, no one died alone. 

‘When you look after someone as their life comes to an end – trying to replace the comforting hand of a family member – it isn’t a nice experience in the slightest, but it’s rewarding knowing that you’ve done your best for that patient, to be there for them, as well as for their family.

‘Especially when at times it’s been their last opportunity to see them. It is utterly heartbreaking that we’ve not been able to have family there in the final moments. No one wants this situation.’

  • Sophie is being supported by the charity Together For Short Lives and is fundraising for St Michael’s Hospital Bristol, where Violet was born.

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