The caring hospital staff making sure no one dies alone
EACH morning, Alex Hamilton fills a backpack with knitted teddies, blankets and books, and heads onto a ward. As a hospital ‘Cygnet’ she spends her days making sure nobody dies alone, supporting people in their last hours, and then their families after they’ve gone.
Providing end-of-life care has become particularly challenging during the Covid-19 crisis.
Families can’t see patients until their dying days, and even then, it’s from behind layers of acetate, latex and polyester.
But there’s no barrier to kindness. And, even when swathed in protective clothing, Alex is certain her presence offers comfort to those taking their last breath.
A lock of hair, a handprint, a paper kiss or a video message are among the keepsakes Alex and her team can create for loved ones.
From the high-tech to the primitive, these mementos mean everything to families dealing with the unbearable during the toughest times anyone can remember.
“This job is the biggest honour and privilege,” Alex says.
When the pandemic began, nonspecialist Cygnets were redeployed to wards to support patients in their last hours and days of life.
It was in those early days that Alex realised how important the role was.
She had been sitting with an older lady whose friend of 50 years had travelled up from the south of England to be with her.
“She’d known her since they were seven years old,” she says. “She knew it was the last time she’d see her.
“They had that moment together that only close friends do, where you genuinely love each other.
“I was able to put a knitted heart in the dying lady’s hand and give another heart to her friend who took it home. She’s got that for life now – that connection.
“I found that so emotional and I went out on the corridor and I went behind where I thought I couldn’t be seen and had a bit of a sob. At that moment this lady I’d never met before in my life carrying a load of files just said ‘it’s okay, it’s okay, we’ll get through it.’
“And I’ve found that in every ward, there’s a lot of support for each other and a lot of love for each other and I think it’s brought us all a lot closer because we’ve been through it together.
“Witnessing that made me phone my best friend the minute I got home to say ‘I love you.’”
The M.E.N. visited Northern Care Alliance’s bereavement team at Salford Royal for part of our series about healthcare in the pandemic.
Each piece in the series looks at a different aspect of the NHS as its staff come under unprecedented strain. Such are the cruelties of
Covid-19, that visits to hospitals are significantly restricted, even to families, for public safety.
But so that we can show the reality of the disease, record the quiet heroism of staff, and tell the stories of patients and their families, we have given behind the scenes access.
The endof-life team at the Northern Care Alliance, the NHS group comprised of hospitals in Salford, Bury, Oldham and Rochdale, is known as SWAN, because of the model they work to - one based on Signs, Words, Actions and Needs. The team also provide this service to patients and families at North Manchester General Hospital.
It’s not just the emotional impact that takes its toll on staff.
Alex contracted Covid-19 in October and became very ill with pneumonia and blood clots on her lungs. It took her two-and-a-half months and three stints in hospital to get better. But she was determined to get back to work as soon as she could.
“I was very unwell. But I was straight back in the role,” she says. “You would have had to put a wall up to stop me coming back in.” In many ways Alex feels her experience has helped her to understand Covid patients and their families better. “I think I’m now better able to explain to the relatives who are begging us – which does happen – to let them in,” she says.
“I say ‘I understand how hard it is but really we’re doing it for your benefit as well as your family’s benefit.’
“Because the worst thing you have to say to someone is ‘no you can’t come in and see them.’”
Karen Ryan’s father, John Bent, 78, passed away at Salford Royal Hospital in May.
He fell ill with sepsis just after the first peak of the pandemic and, like all patients, was not allowed visitors.
“Mum was on the phone constantly and was getting upset because he was ringing her upset. It was really difficult,” Karen says.
Nurses from the SWAN team arranged a Facetime call between the family and John, but it wasn’t easy.
“He was rubbish with technology and was very deaf,” Karen says.
“He was trying to Facetime with a SWAN nurse and ended up videoing himself. It was really funny to be fair.”
The video clip is now a treasured memento of John’s life – one of several nurses arranged for John’s family.
Four days after his admission, a consultant phoned John’s wife Lynda to explain that he was being placed on end-of-life care. From that point on the bereavement team made sure the time he had left was not wasted, and Lynda, 74, spent more than a week living at the hospital with John.
Far from the cold, clinical setting families might expect, staff did all they could to make the family feel at home.
John had visits from his children and grandchildren, was allowed a nip of whisky and was even reunited with his beloved dog Lily.
And, when he died, he was alone with his wife of 50 years. As the pandemic raged on the devoted couple were afforded some peace.
Karen says the dignity and kindness shown to her dad meant everything.
“They knew exactly what to do,” she says.
“They even let us take the dog in. He adored the dog and kept asking for her. She was only there one day but she laid on his bed with him so he could say goodbye.
“They knew he liked whiskey so they even allowed him to have a bit of that. They were brilliant.”
Lynda, who was a support worker at Salford Royal for many years, says the SWAN team went above and beyond for her late husband John.
She said: “They said they would make him comfortable and make sure he’s not in any pain and you can visit whenever you want. They said I could stay over and they would put a bed in the room for me. I hadn’t expected that. It made a big difference.
“He idolised the dog. He kept asking ‘where’s Lily’ and one of the nurses said ‘bring her in.’ I thought what if she makes a noise but she said again ‘no, bring her in.’
“John was talking to her, stroking her and she just sat on the bed with him. Just for a couple of hours. It made a huge difference. And he liked his whisky and always had a tot each night. I told the SWAN nurses and they came back with half a bottle.
“I couldn’t have asked for anything better. They were absolutely marvellous.”
After his death, the SWAN team dressed John and shaved his face as the family could not visit the funeral home. Then they took his hand and fingerprints, gave teddy bears to his grandchildren and little knitted hearts to Karen and her mum.
Karen keeps that heart by her bed as a reminder of her dad.
“The doctors and nurses there do an incredible job,” she says.
“To deal with grief like that every day they must be really robust.”
There’s no doubt these medics are robust. Nevertheless, the stresses and strains of these unprecedented times are taking their toll.
In normal times, it would not be unusual to walk onto a ward and see patients or families getting a cuddle. But a shoulder to cry on is no longer possible in the literal sense.
For Northern Care Alliance director of nursing, Fiona Murphy, the lack of physical contact has proved hardest.
“I think we took for granted the nice softer things – we don’t any more,” she says.
“Your natural instinct is to reach out and ask if it’s okay to put your arm around somebody.
“To keep your mouth shut and have to stand back and say ‘I am here for you, I am listening to you, I’m sharing your story, but I’m really sorry I can’t hug you and cuddle you’ – that goes against every grain in your body.
“I can’t wait to give someone a hug and I can’t wait until we go back to the normal of cuddling in beds and all that sort of stuff.”
There are, of course, ways to support grieving people that go beyond the physical.
And for many people, death is not an ending.
Chaplain Catherine Lewis-Smith knows this better than most.
As her medical colleagues busy themselves making patients comfortable and supporting families, Catherine has a more contemplative role.
This last year she has worked with Sikhs, Muslims, Pagans, Christians and Hindus to offer spiritual support.
“The whole variety of life comes in and out of hospital,” she says.
As part of a multi-faith team Catherine, 43, would previously have gone ward to ward helping patients exhibiting ‘spiritual distress.’ “I think the big change is that many of the people I’m working with in hospital are grieving a loved one who has died recently,” she says. “That has been a very common experience in 2020.
“Perhaps sitting with a widower and just catching the story of his life, his marriage, where they first dated, how they fell in love, where they liked to holiday.
“Just letting someone tell their story of the person they love and care about. Catching their tears.”
Though he works in palliative medicine, Dr Tim Jackson insists his job is actually about helping people to live.
The consultant and his team deal regularly with people with life-limiting illnesses.
“We don’t just see people who are imminently dying,” he says.
“One of the most important things we can do is help prepare people as they’re coming towards the end of their life - not just in the last days of their life.
“When family members haven’t been able to visit we’ve been there alongside them and hopefully they’ve felt that we’re a team who will continue to be alongside their relatives even if they can’t be there.”
SWAN nurse Milly Cooke says working on the bereavement team is something special because it means helping people through their worst moments.
“Even in the very, very worst of situations - which a lot of us have seen and worked in - you can help create a smile for somebody,” she explains.
“They’ll share a memory with you and they’ll smile. To see someone smile, or even laugh, at the worst moment of their life is such a privilege and an honour because they’re sharing something so deep and intense with you.”
One of the hardest moments for bereaved people can be in knowing their loved one is in the mortuary.
Before Covid, Milly would often meet families there.
“I would also go and visit their loved ones for them if they wanted, or get someone into their snuggly old pyjamas, or to take their favourite teddy to them. Or put their hair in a bedtime plait because that’s how they had it.”
Mortuary manager Michelle Hoyle, 53, says patient care extends well beyond the moment of death.
Her small team of nine, working across three hospitals, are a key cog in the bereavement team.
“Good morning,” Michelle will say to her recently deceased patients on entering the mortuary each day.
She explains: “For a family, for you to go in every day to their loved one and say ‘I’ve just come in to say good morning,’ that means so much to them.”
This job is the biggest honour and privilege Alex Hamilton