Heeding the call to ease suffering of dying kids

Dr Chong Poh Heng was inspired by five-year-old with cancer to specialise in looking after children with life-threatening illnesses
By Chang Ai-Lien, Senior Correspondent, The Sunday Times, 14 Sep 2014

Q: How did you get into paediatric palliative care?

I was initially a general practitioner, and a few of my young patients developed incurable diseases such as cancer.

I began doing house visits to support these unfortunate families and soon realised I needed specific knowledge and skills, and more importantly, saw a gap in the health-care system.

I started doing volunteer work with a hospital paediatric palliative care service to see if I was able to support dying children.

But I was still undecided because doing the requisite training would mean giving up my practice, bringing home a much-reduced income and returning to training as a registrar.

Then, one day, during a consultation with a hospital patient, I chanced upon a young boy I used to treat as a GP. The five-year-old had cancer which no longer responded to treatment, and was in terrible pain.

When I sat down and played with him, he stopped crying and gave me two stickers. One said "the best", and the other said "you are the one".

It seemed to be a message to me.

That was the turning point, and I decided to commence advanced training in the speciality.


Q: You conceived and set up Star Pals (Paediatric Advanced Life Support) for children living with life-threatening conditions in 2012. What does it do?

At Star Pals, We don't just care for the patient, we care for the carers. A big part of our work is helping families make difficult medical decisions, helping them confront the hard facts and letting them have their say.

For overall well-being, there are also volunteers who can go to their homes to give them some respite, say, if they need to tend to their own medical problems, attend to their other children or simply take a nap. When somebody is well rested, he can take better care of the patient. After all, he is getting a break from what is essentially a 24/7 job for the rest of the child's life.

Our care is tailored to each family. My philosophy is that no child should die suffering, and no parent should feel helpless about it.


Q: You also arrange special activities for patients and their families?

Yes. Whatever the outcome, these families and particularly the kids deserve to live as normally as pos-sible. As our patients are often very ill or have special needs, it takes a whole village, with various medical staff and many different volunteers all roped in.

For example, we operate a ro-ving portrait-making team where volunteers give makeovers to the entire family and take professional shots at home, as some of the kids are too ill to leave the house.

We also organise a family camp every year specially for siblings and parents to bond, and to foster networking among families, so people know that they are not alone. There are even spa days arranged for worn-out mothers to rejuvenate themselves.

With a small team like ours, we would never be able to pull this off without the help of volunteers. They do everything, including buying special wheelchairs, sponsoring birthday cakes and paying for funerals.


Q:What are some of the misconceptions about paediatric palliative care?

It is a myth that palliative care means end-of-life care. There is always something to aim for, and we are there to fight for our patients to get the best care possible.

For instance, we may treat a cancer patient's urinary tract infection so that he is well enough to go for his next round of chemotherapy.

So, our care really happens alongside primary treatment of the disease, rather than only after all else fails.

Unfortunately, we still need to do much more to create awareness and get the message across. Roughly one in five of the people we approach still say "no" to our help.

Some doctors also hesitate to tell their patients about us, for fear that the family think they are being abandoned, or that there is no hope.


Q:How many patients could benefit from Star Pals?

I believe there are about 2,000 patients here aged 19 and below who are living with complex medical conditions that are life limiting, some of whom often get admitted into and struggle in intensive care wards for weeks or even months.

About 250 children die in Singapore every year, and out of these, we can support about half of them. We are currently looking after only about 50 patients at any one time. I often wonder about the rest of them, those who are unseen and unheard, how they and their families are coping.


Q: Can you elaborate on your other research?

We are collecting data to show that paediatric palliative care makes a difference to people's lives. Although it is very challenging to prove it in dollars and cents, we are comparing the costs of palliative care versus money spent going in and out of hospital.

We also aim to show how palliative care improves the quality of life of our young patients and how it reduces the burden of caregivers. A future project will collect narratives of our clients' experiences, to optimise the care we provide and ensure that it continues to stay truly patient-centred.


Q:How do you cope when your young patients die?

That is when I turn to hobbies to unwind and keep myself going. I tend to my little garden, nurturing other life forms. Listening to music is very therapeutic. Operatic arias are evocative and cathartic at the same time. They often trigger a meltdown, particularly when I am alone in my car. Then, I pick myself up and go on.

I have looked after more than 120 patients in this service so far.

Every time I lose one, I lose a part of myself. But what has kept me going is seeing that families do not have to go through this tragic and challenging situation on their own, and knowing that I have been able to send yet another special child to a good place, smoothly and with lots of love.

Brains behind palliative service for the young
By Chang Ai-Lien, The Sunday Times, 14 Sep 2014

Dr Chong Poh Heng, 48, is the brains behind Star Pals, a community paediatric palliative care service that he runs. It began receiving patients in 2012.

He is also deputy medical director of HCA Hospice Care, which provides comfort and support to adult patients with life-limiting illnesses. A palliative medicine specialist, he is a visiting consultant at both KK Women's and Children's Hospital and the National University Hospital.

He is doing his PhD in palliative care at the International Observatory on End of Life Care, Lancaster University, in Britain. His research on the holistic care of children with life-limiting conditions includes surveying doctors here on their views about paediatric palliative care, and mapping out a service directory for such specialised care in the Asia-Pacific region.

His wife, Ms Chee Thong Gan, 48, is an administrator in a tertiary health-care institution, and they have three children - Heather, 19, Brendan, 17, and Frances, 13.

Helping family through their difficult time
By Chang Ai-Lien, The Sunday Times, 14 Sep 2014

It took less than two years for a tumour in 17-year-old Loh Min Yi's brain to transform her from a straight-A student and active outdoor enthusiast who loved kayaking and trekking into someone who was immobile and unable to talk or eat.

The first sign that things were not right came in July 2012, when Min Yi, then an Anderson Junior College student, suffered severe headaches and vomiting while preparing for her examinations.

Her doctor initially dismissed it as stomach flu coupled with exam stress. But a month later, she developed double vision, and her parents took her to hospital.

There, they got the shock of their lives.

"The doctor said she had a brain tumour that was causing swelling that was not only affecting her vision, but threatening her life," said her father, Mr William Loh, 58.

"We had only 10 minutes to decide whether to go ahead with surgery or not. It was the most difficult decision of my life."

They said yes, and surgeons went in to drain the swelling. But they were unable to reach the tumour itself, which was smack in the middle of the brain, and so Min Yi started radiation and chemotherapy.

She did well for about a year, but by September last year, she was limping, and scans revealed a new growth at her brain stem, which was affecting her nerves.

Two months later, she was unable to return to school at Nanyang Polytechnic, and soon, her entire right side was affected - she could not write, and was dragging her right leg.

In December, Min Yi's oncologist introduced the family to Dr Chong Poh Heng, Star Pals' (Paediatric Advanced Life Support) programme director, to arrange for palliative care to help make her as comfortable as possible, and to lend a hand to her parents and siblings.

But her parents strongly resisted palliative care at first because they felt it meant they had accepted their daughter was going to die.

By then, Mr Loh had taken a break from his work as general manager of an exhibition service company to spend more time with his daughter. His wife Irene Ong, 55, a housewife, spent her waking hours by Min Yi's side.

Madam Ong said: "At the time, palliative care meant 'the end' to me. I was really resisting it.

"I thought the longer I did so, the longer Min Yi would live."

But a couple of visits from Dr Chong and palliative care nurse Lily Li changed their minds.

"They were available 24 hours a day, and whenever I panicked, I could call to ask for advice," said Madam Ong.

"For any little thing, like why she was not drinking or eating properly - we could get advice and reassurance."

Star Pals also loaned them items such as a commode and wheelchair, and brought in a physiotherapist and social worker.

The physiotherapist not only gave Min Yi exercises, but also taught Madam Ong how to move her daughter in the proper manner without having to resort to brute strength, making the effort as comfortable as possible for them both.

Mr Loh said: "Whenever Dr Chong showed up, he had something to tell us. He was always looking ahead to what would happen next in her illness, what we should expect and how to prepare for it. Because of this, he was always the harbinger of bad news.

"But in the long run, we were prepared for the end mentally."

Bright spots also included music therapy sessions every two weeks, where the whole family, including Min Yi's brother Loh Wei Jit, 22, and sister Loh Jin Yi, 16, would join in and sing together.

"Nothing could make Min Yi move her right arm. But she would use it to bang the drum," recalled Madam Ong.

"It was a real stress reliever, and bonded us even more strongly as a family. The music therapy was one of the most wonderful times we spent with Min Yi, and we have beautiful memories."

Then, there was the family portrait organised by Star Pals, with volunteers who styled their hair, did their make-up and shot the photographs at Lower Pierce Reservoir near the Lohs' house.

Mr Loh said: "The patience and passion that the four volunteers showed was wonderful."

Three days later, a surprise package showed up on their doorstep - a framed photograph of the family that is a cherished memento of their time spent with Min Yi.

On May 31, the weekend before Min Yi's 19th birthday, her former schoolmates from CHIJ St Nicholas Girls' School threw her a party, complete with balloons, flowers and cake.

"We would not have celebrated if not for Dr Chong," said Mr Loh, recalling how the doctor, knowing that Min Yi's time was limited, pressed them to have the celebration early.

When Min Yi died in the early hours of June 2, Dr Chong and his team were there to give comfort and support.

In the end, their experience with Star Pals turned out to be invaluable, said Mr Loh.

"We really benefited from the journey. We are just so grateful for the services, and I want to let people know that there is a lot of help available out there."

Caring for very sick kids
By Chang Ai-Lien, The Sunday Times, 14 Sep 2014

Star Pals (Paediatric Advanced Life Support) is a service that improves the quality of life of those aged 19 and below who are critically ill or have life-threatening diseases ranging from genetic, congenital, metabolic or neuromuscular conditions to childhood cancers.

Its team of doctors, nurses, counsellors and social workers provides family-centred, customised treatment and support for the children and their families.

They work alongside each child's primary health-care team to prevent, reduce and soothe symptoms through regular home visits and a 24-hour on-call helpline; and provide support in making complex medical decisions, as well as counselling patients and their families, and giving end of life care and bereavement support.

Staff and volunteers arrange sponsored outings, camps and art and music therapy, and even photography sessions for the patients and their loved ones, while "Medi Minders" are always on hand to take over and offer caregivers a few hours of respite.

Star Pals is a service by HCA Hospice Care, Singapore's largest home hospice provider.

For more information, visit www.starpals.sg or e-mail starpals@ hcahospicecare.org.sg with your queries.