Heeding the call to ease suffering of dying kids

Dr Chong Poh Heng, who is doing a PhD in palliative care, believes that no child should die suffering, and that no parent should feel helpless about it.
PHOTO: Heeding the call to ease suffering of dying kids

SINGAPORE - Dr Chong Poh Heng was inspired by five-year-old with cancer to specialise in looking after children with life-threatening illnesses.

BRAINS BEHIND PALLIATIVE SERVICE FOR THE YOUNG

Dr Chong, 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.

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 possible. 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 roving 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.


This article was first published on Sep 14, 2014.
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