Palliative care: When a young patient's pain isn’t just physical

A young cancer patient who struggled to understand his illness found his voice through play therapy. This piece is titled ‘The Storm is Coming’. — MyStarfish

A child undergoing treatment for a chronic illness is affected not only physically, but also emotionally.

Their psychological well-being plays a vital role in how they cope with their condition, yet, this aspect is often overlooked.

For many children facing serious, incurable or life-threatening illnesses, emotional distress can weigh as heavily as physical pain.

That is why paediatric palliative care specialists at Universiti Malaya Medical Centre (UMMC) are emphasising the role of psychotherapy in this area of medicine.

UMMC consultant paediatric palliative care physician Dr Chong Lee Ai explains that their duty goes far beyond managing physical symptoms.

“Our role is to care for their physical, psychosocial, mental health and spiritual needs – a holistic approach that focuses on quality of life,” she says.

For Dr Chong, palliative care is about living well, not simply preparing for the end of life.

Unfortunately, she notes that there are still many misconceptions that this area of medicine is only for a child’s final days.

Her colleague, consultant paediatric palliative care physician Dr Farah Khalid, shares that her team found a striking pattern among their young patients: they often report worry and sadness more than physical symptoms.

“Yet, emotional distress is rarely addressed in medical settings, where the focus tends to be on physical treatment,” she says.

How often, she asks, do doctors enquire: What are you worried about? Are you afraid of anything?

The focus is almost always on relieving physical symptoms, while sadness, anxiety and fear are overlooked.

This is where psychotherapy becomes essential.

“It helps children manage fear, anxiety and sadness, which can, in turn, ease physical symptoms such as nausea, vomiting and pain, (which are) often made worse by stress,” Dr Farah explains.

“Unlike standard medical care, which treats the disease and its symptoms, psychotherapy supports children in coping with what they are experiencing, giving them tools to understand and manage their emotions as they navigate illness.”

A creative outlet

At UMMC, young patients have access to a wide range of psychotherapies delivered by psychologists, play therapists, music therapists and art therapists.

Creative therapies provide a powerful outlet for children to express themselves, often in ways words cannot capture.

“Play, music and art therapy are therapeutic interventions,” says Dr Farah.

“They allow children to express themselves, and through this process, children are able to process their feelings.”

These therapies also give them a sense of control, which is especially important, as illness and its treatment often takes so much of that away.

While all these treatments are available, there is no single approach that works for every child.

“There is no one-size-fits-all approach,” Dr Chong notes.

“Each child’s journey is unique, and care must be personalised – not only shaped by the illness, but also by what the child and their family identify as most important at that moment.”

During consultations, the team takes the time to listen and build trust, often beginning with a simple, but meaningful question: What matters most to you today?

“For some, it may be the fear of vomiting after treatment; for others, anxiety about coming back to hospital, or even unspoken worries they feel unable to share with their parents,” Dr Chong shares.

By understanding what weighs most heavily on the patient in the moment, the team can tailor care to meet the child’s immediate needs.

This is the activity room at UMMC, where some of the psychotherapy sessions for young palliative care patients are held. — Photos: CHAN TAK KONG/The Star

A more homely environment

However, even in a public hospital, such therapies are not free.

Concerned that some patients might be missing out on this crucial support, Dr Chong and Dr Farah co-founded the non-profit organisation MyStarfish.

This organisation started out with the aim of funding psychotherapy sessions at UMMC for patients whose families could not afford them.

But, as Dr Farah shares: “We quickly realised that the hospital environment, and even something as simple as parking, posed barriers.”

That’s how the idea of opening the first paediatric palliative care centre formally linked to a hospital came to her and Dr Chong.

“This connection ensures the centre meets hospital standards and integrates seamlessly with patients’ medical records, sparing families the need to retell their stories each time,” explains Dr Farah.

“But unlike a hospital, this is a place where children and parents can exhale – a space that feels less intimidating and more like home.”

The hospital will continue to provide essential medical treatment, while the new centre will serve as a daycare facility offering therapies that promote healing and coping, respite care, a sensory room, and crucial psychosocial support for patients and their families.

Dr Chong emphasises that psychotherapy will be at the heart of its work.

“Services like play, art and music therapy, as well as bereavement support, already exist in hospitals, but a homely, less stressful environment makes them more accessible and effective,” she says.

For patients and parents

Among the key features of the centre will be a sensory room for children and a dedicated respite care space for parents.

“For parents, respite care is often the most urgent need,” explains Dr Chong.

Many caregivers are the sole support for children who require 24-hour attention due to being bed-bound, dependent on breathing machines, unable to feed themselves, and/or in need of constant interventions such as suctioning or physiotherapy.

The responsibility is relentless, often leaving parents with little time to rest.

Some describe showering with the bathroom door open, fearful that they might not hear their child in distress.

The centre’s respite service will provide trained professionals who can take over managing machines, responding to emergencies and delivering round-the-clock care while parents get a short break.

Even a few hours of rest to sleep, run errands or simply breathe can make a world of difference for these caregivers.

Meanwhile, Dr Farah explains that the sensory room will offer children a peaceful environment filled with therapeutic tools that stimulate the senses, reduce anxiety and create a feeling of safety.

It supports both emotional and developmental needs, bringing comfort and moments of joy in a setting that feels far less clinical than a hospital.

Together, these services reflect the centre’s mission: to care not only for the medical needs of children, but also for the emotional resilience of families.

Dr Chong hopes that: “By supporting both sides – the child’s therapy and the parent’s rest – the centre becomes a sanctuary of balance, compassion and hope.”

Dr Farah (left) and Dr Chong hope to make psychotherapy and respite care more accessible to young palliative care patients and their caregivers through MyStarfish.

Bereavement support

Another important service the centre aims to offer is as a neutral place for grieving parents to meet.

After a patient passes away, the UMMC team continues to extend emotional support to the grieving parents.

“Every two years, we hold a remembrance ceremony where parents come together to share their grief and find strength in community,” says Dr Chong.

Between gatherings, staff keep in touch through follow-up calls – small, but meaningful gestures that remind families they are not alone.

Some parents welcome the chance to talk or seek counselling – both individual and group counselling are offered by the UMMC team.

Others may struggle, but cannot face returning to the hospital.

“For some, even driving past the hospital is too painful,” Dr Chong shares.

“One mother avoids the route altogether, as it brings back memories of her child.”

However, once the new centre is ready, these counselling sessions can be held there, thus avoiding the painful association with the hospital.

Support sessions for siblings, who are often overlooked in bereavement, will also be provided.

Opening in December

The centre will be housed in a two-storey building provided by the Petaling Jaya City Council (MBPJ), located not too far from UMMC.

The building is currently being renovated to meet hospital-linked standards.

Dr Chong and Dr Farah share that they have managed to raise RM450,000 of the RM1mil needed to prepare and fund the centre, to date.

Most of this targetted amount will go towards transforming the building, while operations will continue to rely on donations.

All services for patients and their families at the centre will be provided for free.

MyStarfish will also continue to fund the psychotherapies offered at UMMC for those in need.

This ensures that children and families can access the support they need without the added burden of financial cost.

Those who wish to make a donation to MyStarfish can click here.