The children’s hospice: ‘You do what you can while he’s here’
150 children with life-limiting conditions are enrolled at Ireland’s only hospice for under-18s
Emma McHugh with her son Matthew: “The hardest thing is watching his skills being taken away. He had so much when he was younger and now, bit by bit, it is being sucked out of him.” Photograph: Nick Bradshaw
Mother-of-two Emma McHugh had never heard of the LauraLynn children’s hospice in south Dublin before her eldest child was referred there for respite care.
Matthew was nine at the time and she arranged to drive him from their home in Ballymun, just to spend a few hours there initially. That was in August 2014.
“I didn’t even know it was a hospice until I came over and saw the big sign. My heart sank,” she says. She went back to Matthew’s consultant and said “is there something you are not telling me . . . ”
However, although many people think a children’s hospice is all about end-of-life care, LauraLynn in Leopardstown offers much more than that. And while it is a child’s medical needs that determine whether or not a referral is accepted, that individual’s whole family will be embraced and supported as soon as an application is approved.
“When they’re here, we like to think we are we meeting the psycho-social needs of the parents and extended family,” says Bevan Ritchie, LauraLynn’s head of care for all hospice care. Respite care is a big part of what the eight-bed centre provides to the 150 children on its books, but play therapy for siblings, psychological support for parents and bereavement counselling are among some of the other important parts of the palliative care jigsaw.
Children’s Hospice Week, which starts on May 22nd, will put a spotlight on LauraLynn’s services, which are delivered not only in its centre but also at home and in hospitals. It will also focus on the constant fundraising needed to generate €3.5 million every year towards the €5.2 million annual running costs.
Every child accepted at LauraLynn has a life-limiting condition, with an expectation that he or she will not survive beyond the age of 18, as well as additional physical or psychological needs, Ritchie says. “Maybe they have been going through an unstable patch or have been in and out of hospital, or their symptoms are difficult to manage, such as seizures or pain.”
Children coming to stay must bring their own medication and equipment; the hospice works closely with their ’ medical teams. “Care is never handed over to us, it is shared with us,” he says. Children receive one-to-one care during the day and at night there would usually be three staff for five to six children.
Joys of living
Despite the sadness behind the criteria for admission, the purpose-built, spacious hospice is full of the joys of living. It’s about making the most of short and precious lives.
In the reception area a giant dolls’ house and sit-on Paws police truck stand out among an array of toys, and a tiny red fairy door in the skirting board also awaits discovery. The visual message to children is that this is a fun place to be.
The furnishings and decor inject pops of colour at into the light-filled and noticeably pristine surroundings. Framed artwork created by children and their families, as part of the all-important memory-making, adorns the walls of the large living-room, where oxygen and suction devices also hang unobtrusively at regular intervals. A rail runs around the ceiling, but the bulky hoist harness is concealed behind a cupboard door at one end.
“It’s not a clinical environment, but it meets clinical needs,” says Ritchie, as a very chatty small girl, a large bow in her hair, expertly manoeuvres her wheelchair past at high speed.
In contrast, across the room Matthew, now aged 12, sits silently in his wheelchair. But a few years ago, his mother struggled to get him to sit down at all.
“He was tough work; he had a lot of energy. He would only sleep for an hour or two at night – and that was broken as well,” says Emma, who is here this morning to pick her son up after a three-night stay.
Matthew has a rare degenerative genetic disorder known as Hunter syndrome, caused by a missing or malfunctioning enzyme.
“The hardest thing is watching his skills being taken away,” his mother says. “He had so much when he was younger and now, bit by bit, it is being sucked out of him.” Matthew is profoundly deaf and has a lot of trouble with his eyes, with only peripheral vision remaining.
“He has no understanding, no communication. He is very vacant, he doesn’t interact with anybody. He is very stiff; he can still walk, but he can’t walk very far.”
Yet every time they draw up outside the hospice, Matthew gets a burst of energy, and almost tries to jump out of the car in excitement. She recalls how even the first time she brought him here – after other attempts at respite elsewhere when he just cried – “he just walked away and never looked back. It was shocking,” she smiles.
For planned stays here, families are offered 15 nights a year to use how they want – as regular short breaks or for a longer family holiday, with accommodation and on-site restaurant provided for parents and siblings, all free of charge.
Even so, it was another six months before Emma felt comfortable walking away herself and not staying overnight too. Now she uses Matthew’s time here to focus on his four-year-old brother at home.
“There would be a lot Darnell would miss out on outside of the house because either we can’t bring Matthew or some people don’t want Matthew to go,” she says.
Darnell, who attends play therapy at LauraLynn, is great with Matthew, says Emma. “He is proud of his brother – he adores him.”
For planned stays here, families are offered 15 nights a year to use how they want – as regular short breaks or for a longer family holiday, with accommodation and on-site restaurant provided for parents and siblings, all free of charge. It’s moving away from the historical model of respite, when just the child stays, and is very much about the family. It’s fondly known as “Hotel LauraLynn” by some.
When a child in the family needs 24/7 care, it is really important that brothers and sisters get some focus and time, says Ritchie. Staff also try to ensure that the parents can just be mum and dad.
That, he stresses, is always done in consultation, “because some parents never want to give up that role of carer because they are the experts. We then just try and support families.”
The constant, demanding caring “takes your parenthood away from you”, says Emma, a lone parent. “Sometimes he looks at me and he doesn’t recognise me as his mother.”
She must get so physically tired? “Mentally tired – I don’t mind the physical tiredness.” When she feels particularly low, she makes an appointment to talk to LauraLynn’s psychologist, Aidan McKiernan. “It really helps. I hold a lot in; I don’t talk to my family about it. I just feel I have to be strong for everybody, I don’t want them to see me upset.”
Down a corridor from where we are talking is one facility that no parent wants to contemplate using. But the knowledge that it is here is, Ritchie believes, reassuring.
The Butterfly Suite is where a child who has died, either in the hospice or in hospital, can be laid out and where the family can have space and privacy. There is a very plain, simple room that is kept very cool to maximise the time they can have with the body. It adjoins a living room with kitchenette and a bathroom.
From the box of tissues on the coffee table to the glass-doors opening out onto a patio where a hearse can draw up, the Butterfly Suite is designed to make life a little bit easier at the most difficult of times.
Families add their own personal touches to the suite. On one occasion it was transformed with hundreds of gerbera flowers, other times with lots of balloons. Some put photos of the child up on the wall.
Some 25 children using the services die each year, with the majority of families preferring to have the end-of-life care at home. But it’s about choice, says Ritchie, and staff will support them whether it’s in the home, the hospice or a hospital.
“I suppose the difficulty is that when a child is at end of life here in the hospice, life goes on for the other families.” They continue their fun events “and it is difficult for staff to deal with both events – but we have a huge amount of staff supports.”
The whole team will be debriefed after a child’s death because inevitably they will have built up bonds and relationships with the child and the family. “That is what the whole idea of a children’s hospice is about,” he points out.
Like most children’s hospices around the world, LauraLynn came about through the drive of bereaved parents who saw at first-hand what was needed to support families coping with a terminally ill child. But for Jane and Brendan McKenna, the cruel fate of losing their only two children within less than two years led them to establish the LauraLynn Foundation, which opened the first children’s hospice in 2011.
Their younger daughter, Laura, died in 1999 at the age of four as the result of a congenital heart condition. Unbelievably, the same day as she had her last, unsuccessful surgery, her 13-year-old sister Lynn was diagnosed with leukaemia.
Gets me down
Emma is, of course, very conscious of the limited time she and Darnell have left with Matthew.
“It gets me down at times, I won’t lie. What we will do without him when he’s not here,” she says, her blue eyes watering. “Then at the same time, you take a look at him, and it’s quality of life – you just to do as much as you can while he’s here, make those memories.”
She wants Matthew to receive his end-of-life care at home and, having discussed it with the LauraLynn team, it is reassuring for Emma to know there is plan, so she can park it and get on with living.
For information on LauraLynn and Children’s Hospice Week, see lauralynn.ie.
PANEL: Children’s hospice – the numbers
3,800 children in Ireland have life-limiting conditions
350 die annually, most within the first year of life
1 children’s hospice in Ireland, with 8 beds
150 children are enrolled in LauraLynn’s services; about 25 die each year
€5.2 million needed annually to run LauraLynn
€3.5 million of that needs to be fundraised
PANEL: ‘As services grow, they can become more fragmented’
The lack of adequate and needs-based respite services for children with life-limiting conditions and their families was highlighted in an independent evaluation of the national policy on palliative care for children. It said respite care required “immediate focus” by the Health Service Executive.
This is a continuing challenge, acknowledges Sheilagh Reaper-Reynolds, general manager palliative care with the HSE’s Primary Care Division. “I can’t say we are going to wave a magic wand.”
There are two ways to go, she explains: either establish a completely separate service for these children along the lines of centres such as LauraLynn, or work with existing services, such as disability respite care, to ensure staff have the training to look after children with palliative care needs.
Due to the relatively small numbers of children and the wisdom that specialists need to be practising their medicine regularly, it may make more sense to support existing respite services to provide palliative care rather than establishing other centres around the country.
“We will be looking at providing a combination of in-home and out-of-home respite care,” she says. “It may not be appropriate for a family to up sticks and go into a respite centre. So what they may need is some respite at home, just to allow them to live as normal a life as they can with the other children.”
There are 3,800 children in the Republic with life-limiting conditions and their palliative care needs are met – or not – by a variety of HSE and charitable services. There is “huge engagement between the voluntary sector and the HSE”, says Reaper-Reynolds, “and we are determined that that continues. We can’t do it alone.”
When the national policy on children’s palliative care was produced in 2009, in the middle of the recession, the Irish Hospice Foundation provided €2.25 million to help kickstart the programme.
Jack & Jill
Many years before this, the Jack & Jill Children’s Foundation began providing nursing care and respite in the home to families of children with brain damage up to the age of four. Celebrating its 20th anniversary this year, it has supported 2,300 families over that time.
In 2014, Jack & Jill extended its end-of-life care to all children, regardless of the nature of their condition, up to the age of four. Since then, 140 children have passed away under Jack & Jill’s care, “the majority of whom passed away at home, according to their parents’ wishes”, reports its liaison nurse manager, Saundra Nolan.
Jack & Jill has 12 liaison, specialist children’s nurses acting as case managers. And this month the HSE appointed its 10th clinical nurse co-ordinator for children with life-limiting conditions. The executive hopes to have an 11th, based in Co Kerry, by the end of the year.
“Services are growing and improving for children,” says Reaper-Reynolds, “but the challenge is as services grow, they can become more fragmented.” Parents have to negotiate their way around different ones in order to get holistic care for their child and to support themselves.
“Part of the clinical nurse co-ordinator role is to smooth that transition so the child can get out of hospital and get home.”
The other aspect of children’s palliative care is provided by the adult palliative care teams who, in 2016, supported 68 children to die at home. Whether it’s respite or end-of-life care, it is all about people feeling they have a choice, she stresses.
“When you talk to parents, generally they would prefer that their children die at home. But there are times when families feel they don’t have the skills or they are very frightened at what is happening. They are afraid if their child is at home, they won’t die well and comfortably.”
But once parents have the services around them, she adds, they feel more confident and capable.