Families facing death of child need some control
For the next 12 months, the charity Children’s Hospices Across Scotland (CHAS) will mark its 30th anniversary by telling the touching
The strength and resilience families find at the most devastating times of their lives never fails to amaze Caroline Porter, who considers it a privilege to work alongside them.
When facing the imminent death of their much loved child, families often feel they’ve been robbed of their choices, and that the control they once held has been taken away.
By listening to what’s most important to them and exploring what it is they want, it’s the job of a Diana Children’s Nurse to help restore families’ choices and, in doing so, create special memories that will last long after their child has gone.
Following the death of Diana Princess of Wales in 1997, the significant amount of money raised in her memory was allocated to specific projects, one of which was the creation of three nursing posts in
Scotland in her name. stories of the people who have helped it to reach that milestone, and the accounts of those who will continue to ensure that no-one has to face the death of their child alone. Among them is Caroline Porter – one of only three Diana Children’s Nurses in
Diana Children’s Nurses work alongside NHS staff and other care staff in hospitals and in the community, providing clinical leadership and support in the planning and delivery of palliative care.
By working collaboratively, they can give families a seamless service and greater choice about where and how their child is cared for as they approach end of life, whether that be in a hospital, in a CHAS hospice or at home. Diana Children’s Nurses recognise that every family is different,
Scotland and a professional on whom Lanarkshire families rely during the hardest of times.
Here, she opens up about their choices are individual to them, and there is no right or wrong decision.
Employed by CHAS, the Diana Children’s Nurse is at the heart of making sure families facing the death of their child do so with the very best care and support around them.
Caroline began her nursing career at the age of 17 – 35 years ago. Originally a registered general nurse, she moved into intensive care nursing for adults before transitioning to paediatrics.
It was at Yorkhill Hospital for Children that she found her passion for end of life care.
As a community nurse based at her work and, how, after 35 years in nursing, each one of those families teaches her something new every day.
Nurse Caroline believes it’s a privilege to help people facing the worst of times
the Acorn Centre in Vale of Leven, Caroline worked with seriously ill children and children who had life-limiting conditions.
With the opening of CHAS’S Robin House in Balloch in 2005, she continued to work alongside families in the community as their child’s condition deteriorated.
Caroline’s West of Scotland remit – which extends as far afield as Dumfries and Galloway and Ayrshire and Arran – includes families in the NHS Lanarkshire area, where she works as part of hospital teams to identify elements she can introduce or develop in an acute hospital setting.
“When you know, sadly, that a child is facing end of life care and is going to die, and that child or young person has expressed a preference that they do not want to die in hospital, we have to work collaboratively,” explained Caroline, who is based at the Royal Hospital for Children in Glasgow. “There are some children who could not move from intensive care because they are so dependent on technology, but there are some children who can. A big part of my role is to explore what is most important to that family. Nothing makes it better, but it can give them a little bit of control in what is a very awful situation.
“When a family wants to be at
home, we do everything we can to support that decision and achieve that. When you use the words ‘palliative care,’ a lot of people probably think that it’s about death and dying. In actual fact, the true meaning is how you can help children live really well for as long as they have – not thinking of them as a condition, but as a child.”
In the Lanarkshire area, Caroline regularly calls on district nurses – not to symptom-manage a child, but to offer practical support to families in so many ways.
“We work with community midwives and the ‘CHAS at Home’ team. To be able to achieve 24X7 care, collaborative working is hugely important,” she explained.
“The community nursing teams have support from management to work outof-hours when there is end of life requirement in the community, but they still have their Monday to Friday job on top of that. Every time I ask, they come up with the goods.
“Round-the-clock care should be available to every child and family who require it. Right now, there is a lot of goodwill, but it needs to be more sustainable than that.”
Caroline is immensely proud to be one of only 100 Queen’s Nurses in Scotland whose role is to promote excellence in community nursing and tackle health inequalities.
She continued: “When I tell people what I do, they say: ‘That must be so sad.’ It can be terribly sad for the parent and family unit. The reason I can do my job is because we look for bits of hope. Hope can seem like a strange word to use in this context. But there is hope when you’re facing the death of your child.
“I cannot change the child’s diagnosis – the fact that they have a life-limiting condition. But we can have quite a big impact by doing something quite small. We can be with them and listen to what somebody is saying. When you really listen to somebody, you find out what’s important to them – and then we can frame the care around them, and know the direction we’re heading. That’s when you can really start to work with them to see how you can make it that bit better for them.”
If, over time, a child’s condition changes, Caroline moves the goal of care away from the length of time they have to live, to the quality of that time, with maximum comfort.
“It is a privilege when you work alongside these families, and every family teaches me something new,” she said.
“Each family is so individual. They amaze me with their strength and resilience at the worst times in their lives.”
With the passing of a child, team members who have been involved in delivering their care come together to reflect, to celebrate best practice, to recognise lessons that can be learned, and to consider how looking after that family impacted on them personally and professionally.
“The death of a child should never be normal or routine,” said Caroline, who has two grown-up children.
“To be able to go on and deliver that care the next time and the next time, we need to be able to take care of them [the professionals]. There will always be elements of our own lives and personalities that resonate there. Our vulnerabilities are our strengths – and our weaknesses. I firmly believe that is what makes us human and compassionate.”
I cannot change a child’s diagnosis but we can have quite an impact by doing something small