Parents don’t like to see him, but this doctor tells why palliative care for terminally ill children is important

SINGAPORE — Dr Chong Poh Heng sees terminally ill children on a daily basis. The medical director of HCA Hospice is also the doctor most parents do not want to see.

Given that young patients are usually referred to his team when they are seriously ill or have no more treatment options, most parents do not want to encounter Dr Chong during their child’s illness journey.

They feel like “it’s the end” of the road for their child, he told TODAY.

“Sometimes people turn or walk away when I go into the ward. Or I’ll hear some people muttering, ‘Don’t know who he’s going to see’,” he added.

“Once, a mum told me, ‘Dr Chong, you’re famous but no one likes (to see) you’.” 

As a result, patients may get “lost in transition”. This happens when patients are referred to his team, but the child’s parents may not get in touch with the team.

The doctor said that some of them give excuses such as, “Oh, my child is very tired” or “We’re busy".

“Only until a very major crisis happens, then we’re called in.

“That is why it is important to normalise conversations around palliative care so that children and families can get help earlier,” Dr Chong added.

So what exactly is it that he and his team do?

A trailblazer in the paediatric palliative care field here, Dr Chong founded Star Pals (Paediatric Advanced Life Support) in 2012.

It is a paediatric palliative service under HCA Hospice that provides medical and social services for children up to 19 years old at home. It is free for patients under the hospice’s care.

HCA Hospice has many satellite centres, with its headquarters in Kwong Wai Shiu Hospital on Serangoon Road.

Paediatric palliative care, is a type of specialised care that aims to improve the quality of life of children suffering from life-threatening or life-limiting conditions.

HCA Hospice said that palliative care is best described as supportive care for a child whether they have a chance of cure or remission, whether they are on or off medical treatment.

It starts with diagnosis of a serious condition and may extend to hospice care.

Some children with Star Pals being cared for at home do get temporarily “discharged” from the service when their condition stabilises and caregivers are confident of taking care of them.

Dr Chong explained that many children on palliative care experience a different illness journey compared to adult patients.

“Many of the children have non-cancer conditions, which can have very uncertain trajectories. Some children were referred to me 10 years ago and they are still alive now, but no less sick,” he said.

“(In the case of many rare syndromes or disorders), we may not know how the child’s future will look like, but that does not prevent us helping the child now and supporting the parents in the best way possible.

HOW TO HELP FAMILIES FIND HOPE?

What can families hope for, when a child is diagnosed with a terminal illness and all treatments are exhausted?

As a paediatric palliative care specialist, part of Dr Chong’s work is to reframe what hope can look like even in the bleakest and most hopeless of circumstances.

He said: “Palliative care and hope — it’s not intuitive to see them side by side. But the people who are in it need (hope).”

In such situations, hope may not mean a cure.

He emphasised that he does not give hope per se, but to help the family and patient see that they can still feel a sense of hope in the midst of their struggles.

This might be taking comfort in knowing how to prepare for the child’s illness journey, for example, or finding something positive to focus on in bad situations.

What hope looks like is also unique to each palliative patient and their family.

“Hope should come from the families, rather than from me,” Dr Chong said.

“There is no recipe or template (for fostering a sense of hope); no talisman I can burn up and have them swallow it, so that they’ll be happy tomorrow when they wake up.

“I help them feel that there are still some things to celebrate, some things to feel grateful for.

“I see myself as a healer rather than someone who fixes things. When you heal, you make the best out of things rather than fix what is broken.”

It may seem counter-intuitive, but research suggests that hope can influence how palliative patients and their families cope.

In palliative care, hope plays a role in improving quality of life, and can also support psychological resilience — as found in a recent study on palliative patients with advanced cancer published in the medical journal Psycho-Oncology last year.

Recalling a case where the patient and her parents were foreigners, he said that the child was dying of a rare cancer who had experienced “terrible pain”.

Dr Chong said: “Difficult as the circumstances were, the mother told me she relished the times she was alone with the girl. Lying next to her, the mum had precious conversations with her child that she would remember for the rest of her life.

“For the father, he said that he was able to see how special, brave and resilient his daughter was, how proud he was of her and how he had learnt many lessons from her.”

As for the terminally ill girl, Dr Chong said that she had enjoyed the visits from the team’s social workers. During their visits, she would talk about her travel experiences while seeking treatment in various countries.

“Despite all the pain and sadness, she was able to recite all of those happy experiences. It was during those moments that her pain suddenly disappeared.

“Like bubbles, her pain floated away, albeit for a moment,” he said, alluding to one of the tools that he often uses in his practice to manage pain in patients, release tension and reduce anxiety.

“Bubbles are one of my ‘secret weapons’. They can bring a child to a place where they feel safe in those moments.

“With very little imagination, by blowing bubbles, the child can go through a procedure without crying or wailing the way they used to,” he said, adding that it may not be suitable for some patients such as those who are immunocompromised.  

Dr Chong said that only patients who are on chemotherapy or had undergone a bone marrow transplant, for example, are immunocompromised. The majority of the cases that his team sees are non-cancer cases, so that is rarely an issue.

HOW HE GOT INTO PALLIATIVE CARE

Since Star Pals was launched by Dr Chong, it has supported 448 children and their families.

Some examples of the type of support they provide are:

• Managing symptoms of discomfort caused by the illness
• Arranging for equipment loan, financial assistance if needed
• Providing respite for caregivers
• Helping to ensure that the child’s primary caregivers have the right skills to look after the child at home

The team conducts regular home visits, for example once every two weeks, depending on the child’s condition

The service is now supporting 65 children with life-threatening or life-limiting conditions such as neurological or congenital conditions as well as childhood cancers. 

Dr Chong’s foray into paediatric palliative care started back when he was a general practitioner and encountered young patients who were diagnosed with serious illnesses such as cancer. He knew many of them from the time they were babies — they had gone to his clinic for routine immunisations or for the treatment of common childhood ailments.

He began doing house visits to support some of the families, and later started volunteering at a palliative care service in a hospital’s oncology paediatric department.

He realised that there was a “tremendous need” for greater awareness and advocacy for paediatric palliative care beyond the hospital setting.

While the hospital is often the second home for many dying children and their families, most would choose to be at home if they could.

“The hospital is a safe place where you have nurses 24/7, specialists and the experts at treating the disease.

“But when the disease can no longer be treated, even if the experts are the best on earth, you’re not in the right place and not getting the right attention,” Dr Chong said.

“Being at home means that the child is among siblings, grandparents, their wider family.

“Home is also where the child feels safer rather than to be subjected to routines in the hospitals, including not knowing if it is day or night, a lack of contact with friends, feeling the loss of control.”

Despite his ability to connect well with seriously ill children, Dr Chong knew he needed formal training in paediatric palliative care.

After giving up his private practice as a general practitioner in 2008, he underwent specialty training in the United States and the United Kingdom to expand his knowledge and skills in the field. When he returned, Dr Chong started Star Pals.

Besides supporting patients, Dr Chong also takes part in advocacy efforts such as the paediatric and young adults advanced care planning task force under the Advanced Care Planning national programme.

He introduced the Paediatric Palliative Screening scale, which is a standardised tool used in Singapore.

He adapted tools from overseas to come up with the Paediatric Palliative Screening scale. HCA Hospice said that the tool was eventually implemented on a national level by the Ministry of Health that helps doctors assess and refer children who require palliative care.

Dr Chong also shares his knowledge at conferences here and overseas, such as at the LCPC Palliative Care Conference in October this year on improving the quality and value of end-of-life care.

For his efforts in the field, Dr Chong received the 2021 President’s Volunteerism and Philanthropy Awards – Leaders of Good award last year.

Facing suffering and death on a daily basis is not easy, even for a palliative care doctor as experienced as Dr Chong.

There are some days and encounters that leave him feeling spent. In one particularly tough year around 2016 and 2017, he lost “half the team because people were burning out like crazy”, highlighting the psychological toll of paediatric palliative care work.

When work becomes too overwhelming, Dr Chong reminds himself why he went into this area of healthcare — that is to reduce suffering and bring comfort to young patients, “for them to die well and in a place of their choice”.