‘End-of-life care need not also
WATCHING someone die is a harrowing experience.
But for some people it’s their job to look after people in their final hours.
Pulling up on the gravel driveway in the middle of an industrial estate, Ty Hafan can feel out of place.
Passing signs that read “Warning: children at play” remind you this is a place where children are ever-present. But it’s also a place where children come to die.
The hospice, manned by 232 staff, currently supports 249 children, with an average age of three years old.
Most come for respite care, either during the week or at the weekend, and since 1999 the hospice has supported 761 children. Most are aged six to 10 years old.
During that time 309 children have also died at the hospice.
But it’s not about death at Ty Hafan. It’s about celebrating life. And staff at the hospice intend to do just that, no matter how long a child has left.
Lead nurse Adrian Smith, 42, started working at Ty Hafan, based in Sully in the Vale of Glamorgan, more than two years ago.
“I think people come here with a preconception of what it’s going to look like,” he said.
“Before I came here I didn’t know what I was going to see. I thought it was all about kids dying and it would be a really sad place.
“But I remember walking through the doors and not being able to believe the size of the place and how bright it was. I remember thinking, ‘This would be a nice place to work’.”
After completing a degree in Welsh studies and theatre studies at Trinity College in Carmarthenshire, and working in a parcel factory after he graduated, Adrian was at a loose end.
But after spotting an advert to train as a nurse, the father of two found a career that would change his life.
After studying for a three-year diploma in nursing, Adrian worked in a children’s ward in Guildford, Surrey, for three years before returning closer to home in Cardiff when his eldest daughter was born.
He now lives in the Rhondda with his wife and two daughters, aged eight and 12.
Adrian then worked in A&E for a decade before switching to work at the children’s hospice – and it’s been a very different experience.
“[You get] a lot more time to be able to talk to the families,” he said.
“I can remember sitting down in one of the bedrooms here and I was just chatting away to one of the mums and being there for a quarter of an hour and I looked down and thought, ‘I’ve been here for a long time’.
“No-one had come in to get me, no-one had come in saying I needed to do this and that. It was a totally different atmosphere.
“Emotionally it’s more difficult here. Although you saw things in A&E and thought, ‘How do I cope with that?’ it’s different here because a lot of the time we know the families.
“When you get into a situation when you’re dealing with end of life, you’ve probably got a good idea of what the family want, what their wishes are, so it makes it a bit difficult.
“When they come crashing through the door in A&E you don’t know them at all.”
Adrian said while getting to know the families, and their wishes, was an advantage, it can sometimes make it harder when children do pass away.
“The majority of cases we do get to know them and that’s fine,” he said. “You do get ready for it. But the children write their own stories as well.
“You could have someone come in for end-oflife care and they could be here for weeks and eventually come home and then come back again.
“Then you get some families where their first referral will be straight out of intensive care straight to us and they die within a few hours of coming, so you haven’t really gotten to know that family.
“There’s a spectrum – you might have known them a couple of hours or you might have known them for years.”
When a child does die it can be tough to deal with.
“It’s difficult,” Adrian said. “I don’t think you can ever get used to it.
“It’s something that my junior colleagues will come up and say, ‘How do you deal with it?’ and I’ll always say to them, ‘If
Ty Hafan team leader and nurse Adrian Smith describes what it’s like to work at the children’s