More needs to be done for paediatric palliative care: experts

Experts in the field of paediatric palliative care said they want more to be done for the service, through funding, facilities and training.
By Sara Grosse, Channel NewsAsia, 4 May 2014

Imagine your child having to die before you.

This situation, unfortunately, faces a few dozen families in Singapore a year, as their children suffer from life-limiting illnesses.

Experts in the field of paediatric palliative care said they want more to be done for the service, through funding, facilities and training.

They said a lack of awareness has also held some parents back from opting for the service.

Danial communicates using facial expressions.

The 17-year-old has spastic quadriplegic cerebral palsy - a severe form of cerebral palsy.

He was referred to paediatric home hospice care under Star PALS (Paediatric Advanced Life Support) - a service of HCA Hospice Care dedicated to improving the quality of life for children aged 19 and below with life-limiting or life-threatening conditions.

These range from neurological or congenital conditions to childhood cancers.

For nearly a year, a nurse has been conducting weekly checks on Danial, while a medical social worker meets regularly with his parents to offer emotional support.

His mother said he is doing much better under Star PALS, compared to when he has to be brought to the hospital due to complications.

Linda Sulaiman, mother of Danial, said: "He is actually doing much better under the care of Star PALS, unlike previously before they were with us, we were having difficulties.

"Every time it happens to him, we have to call an emergency to bring him to hospital...it's very difficult for us.

"So right now I just want him to be happy and we want him to know that we love him and we do care for him. If anything happens to him, I just have to let it be.

"I have been taking care of him for quite some time and was also told by doctors that his conditions is worsening. What I was told was, prepare for the worst."

Star PALS looks after 50 new patients a year, with the majority suffering from non-cancer conditions.

Dr Chong Poh Heng, programme director for Star PALS and deputy medical director of HCA Hospice Care, said: "In the hospital, a lot of times, they would be hooked on to machines, they would be in an environment where it might not be night or day.

"And you've got different people coming in and out, different groups or teams of doctors and nurses doing shifts, coming in and out. It would be overwhelming for a child to face that sort of environment, which is always in flux.

"After understanding the child's family needs as well as the child's special situation, we would be able to carve out some kind of breaks, some kind of enjoyment in the smallest way possible.

"For Danial, it might just be about going out for some fresh air, which is not something you would imagine someone like him can do previously."

Palliative care services in Singapore started in 1985 in St Joseph's Home for adult patients, mainly with terminal cancer.

In 2004, the paediatric palliative care service was formed at KK Women's and Children's Hospital (KKH).

This initiative was started by the hospital's oncology unit, but in 2005, extended to children with non-cancer illnesses.

This children's day therapy is a facility for stable patients requiring symptom management.

Associate Professor Chan Mei Yoke is no stranger to Singapore's paediatric palliative care.

The paediatric oncologist estimates there are about 60 children under palliative care a year.

KKH sees about 30 patients a year, which include children with cancer or congenital conditions.

Palliative care usually begins when doctors refer the child to the service.

A team meets with the family to discuss the kind sort of support they will need and liaises with the relevant community agencies.

But Professor Chan said there is often a lack of awareness and acceptance of the service.

"It's not just for dying children. I think a lot of people think that once you are referred to palliative, it means that's the end of the road for you. That's really not the case," said Professor Chan, Head and Senior Consultant for Haematology/Oncology Service at KKH.

"Palliative care is meant to provide care, not just in terms of physical symptoms. So because of that, there is a lot of taboo, a lot of parents do not want to be referred, because they feel it means that people are giving up on them."

Noor Aisah was the first nurse in Singapore to be trained in paediatric palliative care.

She said the service is not about giving up, but allowing parents a choice. Since 2004, she has had 250 patients, of whom 200 have died.

Of the 250 patients she has cared for, she said more than half of them were late referrals.

"The earlier the referral to us...it will be much easier for us to manage, because parents are given more time to come to acceptance (of the service)," said Noor Aisah, Nurse Clinician for paediatric palliative care service at KKH.

"We have more time to build rapport and bond, and do a lot of exploring and explanation. Therefore, the trust in the relationship is built up first before we can go in and assist them in the journey."

Mavis Teo, Acting Head of Department and Senior Principal Medical Social Worker at KKH, said: "Children usually are aware of what is happening. One mother told me that her child actually asked her 'Am I dying?'

"The child is indeed dying, but the mother told the child, 'no, no, no. Let's not talk about things like this. Let's focus on how to get you better'.

"So, children can be involved if the parents give us the consent to talk to them. And of course, we will also have to prepare or equip the parents with the right thing to say to the children, in case in their own time, the kid asked the parents, 'what is happening to me? Am I dying?'"

Depending on their condition, the voices of the children can then be included in an Advance Care Planning. This is basically a series of conversations between healthcare professionals, the patient and their family members on the future healthcare plans for the child.

This can range from whether they want intensive care, how they want to be remembered to who should have their belongings when they die.

Professor Chan said what is needed is a dedicated hospice for paediatric palliative care.

This is so that the children can be in a cosier looking environment and have their families stay with them - something that is hard to provide in an adult hospice.

Two examples of children hospices overseas are Bear Cottage in Sydney and Helen House in United Kingdom.

When the new Assisi Hospice opens its doors in 2016, it will have Singapore's first dedicated paediatric ward.

It will have five beds and a larger room for families.

The hospice currently takes in a few child patients, and lets parents stay over in their family room.

Associate Professor Premarani Kannusamy, CEO of Assisi Hospice, said: "Besides the room size and children features in the room, we will also be having a children's playground and a garden for them to come out and have fresh air. Besides palliative care, it will also include play therapy. We will also have art therapy."

Funding is another issue raised among observers.

Star PALS is currently being funded by a three-year grant from Tote Board.

The programme hopes to have more funding - which will go towards providing support for play therapists and bereavement care.

The Health Ministry said it is monitoring the outcomes of the children under the HCA Star PALS pilot programme.

At the end of the pilot funding period, the ministry will assess the programme for suitability to receive mainstream subvention for home palliative care.

Going forward, the training of its medical professionals in paediatric palliative care is being enhanced.

Dr Siti Nur Hanim Buang will start her training in palliative care in 2015. When she returns, she will be the first doctor to have a dual accreditation in paediatric intensive care and palliative care.

"A lot, although not all, of the patients who end up in palliative care start in ICU. We see a fair amount over the years," said Dr Siti Nur Hanim Buang, Associate Consultant for Children's Intensive Care Unit at KKH.

"I believe that if we are properly trained in palliative care, with some formal training, we'd be able to support the parents and the patients better in terms of their needs, whether it is physical needs or psycho-social needs. I believe this treatment then can be started earlier, because we would be able to recognise it earlier."

With medical training, having more exposure to palliative medicine, and infrastructure expanding, much progress has been made in the field of paediatric palliative care.

But for the service to truly be fully accepted and integrated into mainstream practice, health care experts say it comes down to not associating palliative care with death, but rather, see it as an alternative treatment when the cure is no longer possible.