Care for children at life's limits

Ireland's first children's hospice is catering for the unique needs of young people with life-limiting illnesses, writes JUNE SHANNON

IN AN IDEAL world, the words “children” and “hospice” would never appear in the same sentence. However, the sad reality is that approximately 490 children die in Ireland every year, and an estimated 1,400 are living with a life-limiting condition. Of the 350 children who die as a result of these conditions, the majority pass away in the first year of life.

The main difference between adult and paediatric palliative care is that the vast majority of adults are cancer patients while children can be born with a number of congenital diseases or chromosomal abnormalities known as life-limiting conditions.

This means that the child is not expected to survive to adulthood and some may only survive for a number of months or weeks after birth.

Children with palliative-care needs in Ireland receive excellent treatment in paediatric hospitals. However, an acute setting is not always the most appropriate place for some of these children.

While the vast majority of children with life-limiting conditions die at home, for a small number this is not always possible as the complexity of their illnesses makes them highly dependent on clinical care.

Ireland’s first children’s hospice, LauraLynn House at the Children’s Sunshine Home in Leopardstown, Co Dublin, opened last week and will provide a unique place for these critically-ill children and their families to spend precious quality time together.

The Children’s Sunshine Home has been meeting the needs of sick children since 1925. Today, it provides transitional, respite and crisis care for children with complex medical needs.

Built on the same grounds, LauraLynn House is a stand-alone unit, which will provide palliative and end-of-life care for seriously ill children. The new unit has eight en suite private bedrooms and additional hotel-style family accommodation.

This bright, colourful space is designed as a home from home for children and their families. It also contains a large play area, family rooms, a quiet room as well as multisensory, music and therapy rooms.

All the rooms and facilities at LauraLynn have been completely de-medicalised. Staff do not wear uniforms and essential clinical equipment such as hoists, oxygen and call bells are discreetly hidden within its brightly painted walls. A great deal of thought has gone into the development of the new unit, which aims to give children a break from the all too familiar hospital environment that has dominated most of their short lives.

Sadly, LauraLynn House also contains a suite called the Butterfly Room, which provides a private and peaceful place for families to spend time with their child who has recently died.

Philomena Dunne is the chief executive of the Children’s Sunshine Home, which together with the LauraLynn Children’s Hospice Foundation, has been working on establishing Ireland’s first children’s hospice since 2006.

The LauraLynn Children’s Hospice Foundation was set up in 2001 as a result of the personal tragedy of Jane and Brendan McKenna, who lost both their daughters to life-limiting conditions. Laura died aged just four and, shortly after, Lynn lost her life at the age of 15.

In 2006, the Children’s Sunshine Home and the LauraLynn Foundation came together to realise a shared vision.

Dunne explains that when children are diagnosed, both they and their families could be “on a rollercoaster” for years.

The nature of these conditions mean that a child can stabilise, dip a little, then become critically ill and slowly decline over a long period, she says.

Thankfully, the number of children who require palliative care is small compared to the number of adults, although children generally require palliative care for a much longer period.

“The pressure that families are under is huge, so what we would like to do would be to give as much support and alleviate that pressure. The best way you can do that is by just being there for the family and asking them what they need,” says Dunne.

“The children that come here are the sickest children and probably the most vulnerable that we have in the country and that is the sad part of it. But it is a happy place at the same time.”

LauraLynn House was built at a cost of €5 million, all of which was collected through private fundraising. The children’s hospice has received no public money to date, although Dunne says they are in negotiations with the HSE with a view to getting assistance with the €2.5 million annual running costs.

She added that the HSE has been “extremely supportive” at a time when costs are very tight across the entire heath sector.

Dunne believes that there is a need to demystify hospice care for children. Rather than being associated with death and dying, she said a children’s hospice should be seen as a place, which provides quality of life and symptom control, “keeping children comfortable and having fun”.

In 2010, the Government’s national strategy on palliative care for children with life-limiting conditions called for the appointment of a consultant in paediatric palliative medicine.

Thanks to funding from the Irish Hospice Foundation, Dr Mary Devins, Ireland’s first such specialist, was recently appointed at Crumlin Children’s Hospital.

Although based at Crumlin, Devins has a national advisory role and will provide support to the medical team at LauraLynn House.

“A lot of paediatricians do excellent palliative care without realising it. They spend a lot of time with families and support families of children with life-limiting conditions,” Devins says.

Along with pain and symptom control, and end-of-life care, another important aspect of paediatric palliative care is providing respite for families.

“The reality is that the families do the vast majority of the 24-hour care; children who need turning, suctioning, oxygen, they are on feeds through a tube. It is a lot of work and a very important part of palliative care is supporting the family and the provision of respite,” Devins explains.

“Parents are afraid when they hear we are being involved that their child is imminently dying. That is not the case. That is a small part of what we do . . . but a lot of families we would be involved with for many weeks, months or even years.”

In 2005, a palliative care needs assessment for children in Ireland found that the majority of families prefer that their child die at home.

But the report pointed out parents did not have sufficient choice in this decision due to a number of factors including a lack of facilities and information.

Devins says that LauraLynn House was a positive development nationally for all children with life-limiting illnesses, would provide respite, and would also be an added resource for families and paediatricians in Ireland.

“LauraLynn will provide a fantastic resource for providing end-of-life care; somewhere that children can go to die that isn’t a hospital but is the closest thing to home,” she says.

Philomena Dunne said that the most important message for families of sick children was to know that they were not alone and help was available.

Help and support is available from the Children’s Sunshine Home at 01-2893151 or sunshinehome.ie