No one is prepared to face death, yet no one can escape it.
It might be easier to accept if an older person is on the brink of death, but when a child is dying, parents often struggle with the process.
In an ideal world, all children will outlive their parents, but when the reverse happens and the child has a life-limiting or life-threatening illness, it impacts the entire family, particularly the primary caregivers.
Examples of life-limiting/ threatening illnesses include:
- Brain damage, causing immobility
- Incurable cancer
- Incurable heart disease
- Kidney failure without option of dialysis or kidney transplant, and
- Incurable progressive muscle weakness caused by a genetic disorder.
While we have a number of trained palliative medicine specialists serving throughout the Health Ministry (MOH) and major medical schools, most of them focus on caring for adults and the elderly with life-limiting illnesses.
Paediatric palliative care (PPC), or palliative care for children, is growing at a slower pace, even though it is estimated that 80,000 children need palliative care daily in Malaysia.
Where then do parents go to seek help?
“Very few parents know what PPC is and there is a dire need for it.
“Life-limiting illnesses in children are conditions that cannot be cured and may result in shortened lives.
“However, with good PPC, these children may live an active life for many years and a small portion of them can even live up to young adulthood,” says Hospital Tunku Azizah Kuala Lumpur (HTAKL) consultant paediatric palliative specialist Dr Lee Chee Chan.
According to the World Health Organization (WHO), PPC is the active total care of the child’s body, mind and spirit, which also involves giving support to the family.
It begins when the illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.
“My biggest challenge was educating my own colleagues who didn’t know what I was going to do after I returned from training in the United Kingdom.
“They thought PPC is only about the end of life, but actually, my job is also to help kids live longer without suffering.
“Studies have shown that PPC can reduce four hospital admissions a year and 50% can die at home instead of the hospital,” adds Dr Lee, MOH’s only fully-trained paediatric palliative specialist.
Malaysia has 22 adult hospices and only one Malaysian Children’s Hospice, which was recently set up under the non-profit organisation, Malaysian Association of Paediatric Palliative Care (Mappac).
Children’s hospices are there for families when the heart-breaking moment comes to say goodbye to their child.
ALSO READ: Malaysia's first children's hospice helps parents care for terminally-ill kids
Support from the womb
Dr Lee, who is also Mappac’s president, explains: “Even before the child is born, we counsel pregnant mothers who have been told their babies may have problems when they come out.
“Prior to the establishment of PPC, a lot of them choose to have abortions before 20 weeks – it’s a tough decision for the mother because she is still carrying a life inside her.”
Abortion is legal under certain circumstances in Malaysia as governed by Section 312 of the Penal Code.
The law provides for safe abortion to save a woman’s life and to preserve her physical and mental health.
Under syariah rulings (fatwa) issued by the National Fatwa Committee, abortion is permissible within 120 days of gestation in cases where the woman’s life is at risk, or if the foetus is found to be seriously abnormal.
However, different states in Malaysia practise different rulings.
“Now, there is an option,” says Dr Lee.
“We tell them there is a PPC team here (HTAKL) to ensure the baby doesn’t suffer, even though he may come out and live only a few hours or days, or die during pregnancy.
“We support the mother emotionally and provide counselling for the family.”
At HTAKL, when all hope is lost, children are referred to the paediatric palliative unit, which is parked under the paediatric department.
Headed by Dr Lee, the unit comprises five staff and two trainees.
Besides doctors, there are also counsellors (to check if the care- givers are overburdened), play therapists, psychologists (to help the child deal with pain and anxiety), occupational therapists, nurses, pharmacists and social workers.
“We don’t have our own ward because we don’t want to make it like a ‘death’ ward as this affects children.
“So, we run around to see patients in the paediatric, neurology, cardiac, nephrology, cancer or whichever ward the child is in,” he says.
Each day, there are at least 20 inpatient and outpatient consultations.
Like most government hospitals, the place teems with patients.
Dr Lee says: “A lot of parents come to us with the wrong impression – they think we are death doctors and are here to kill the child!
“Our role is to provide extra support such as physical, psychosocial, emotional and spiritual for both parents and child.
“We also provide home transition services, where they can message or call us if there is any problem.
“We write down a plan for them on the steps to take before visiting the hospital again.”
Initially, the phone lines were kept open for 24 hours for anxious parents to call once the child was discharged, but it was too much for Dr Lee’s team to handle.
Now, the lines are switched off at 6pm; parents are asked to take their child to the emergency department if needed after that time.
Managing the situation
Dr Lee gives the example of a one-year-old patient with kidney failure who was too young for dialysis and was constantly crying, vomiting, restless and irritable due to the high toxin load in his body.
This led to friction and endless bickering between the stressed parents, who were contemplating divorce.
He recalls: “The paediatric nephrologist also didn’t know what to do and referred the child to me.
“When the parents came, they asked me, ‘When are you going to kill our baby?’
“I had to explain calmly that this was not euthanasia and they started to quarrel again.”
The affable specialist told them to stop arguing and go to the pharmacy to buy a cough mixture meant for adults.
“In our subspeciality, we look into the different properties of pharmacology.
“We can use the same drug to treat different problems – it works and is safe, although the standard medical textbook says these mixtures should not be given to those under two years of age.
“The baby stopped crying and lived for another six months; there was no divorce.
“Other paediatric subspecialists don’t know this, although some with a heart will go and learn these skills,” he says.
Another time, there was a patient who was kept on machines and lived in the ward for seven years because the doctor refused to give up.
“Because the doctor kept giving the mother hope, she would drive every day from Kuala Kubu Baru to HTAKL until she got cancer from the stress and died.
“Yes, doctors are meant to save patients, but we are not god.
“We need to change the direction of care rather than keep fighting, because the newer machines can drag your life on forever,” shares Dr Lee.
Eventually, the child succumbed to an infection.
He says: “We teach parents how to accept death and dying.
“No one wants to give up on their child, but we have to guide the child to die peacefully.”
Accepting death
For someone who was once afraid of death and dying, Dr Lee has come far.
His affinity for this field stems from his own experience: his father died in an accident when he was two, leaving his mother alone with two young kids – his sister was one then.
“My mother left us with our grandmother in Kedah and had to start working elsewhere – everyone assumed we were orphans because she only came back once or twice a year.
“That separation anxiety – I understand how children feel.
“Before, when I saw mothers crying after witnessing their child dying, I would also cry and think of my mother because I remember sitting in front of my dad’s coffin and crying with her.
“Until during my training, my senior (Dr Loh Ee Chin) sent me to the mortuary to sit with another patient who had lost a parent.
“I sat there bawling for a few hours, and afterwards, I had an emotional release.
“Now, I’m not so affected by death any more,” he confides.
Last month (June 2023), Dr Lee and paediatric palliative care specialist Dr Fahisham Taib co-edited Malaysia’s first handbook for caregivers of children who need palliative care.
Authored by experts from various disciplines, the Caregiver Handbook for Children with Palliative Care Needs is free and available from Mappac.
“Caring for the sick child is not easy, but hopefully, this book will help,” he says.
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