Before heading out for patient visits, palliative care workers like Malaysian Children’s Hospice Kuala Lumpur nurse Elaine Teo have to study their patients’ file and gather the necessary supplies. — YAP CHEE HONG/The Star
GRIEVING the loss of one child is devastating, but preparing to lose another is unimaginable.
For single mother Zaitul Akma Muhd Zain, 39, this is her reality.
Having lost her eight-year-old daughter in 2022 to Neuronal Ceroid Lipofuscinosis type 2 with epilepsy, Zaitul is now caring for her terminally ill youngest son.
Adib Aisy Rzqi, eight, suffers from the same neuro-degenerative condition which claimed the life of his sister.
The condition leaves patients blind, immobile and eventually in a vegetative state before taking their lives.
“Attending to my daughter’s needs nearing the end of her life was an immense struggle,” said Zaitul in recalling the moments.
“As a single parent and with two sick children to care for, it felt unbearable.”
While Zaitul struggled alone during her daughter’s final days, this time she has the support of hospice nurse Liow Xin Yi, who visits monthly as part of the Malaysian Children’s Hospice (MCH) community palliative care service.
Hospices in Malaysia such as the Malaysian Children’s Hospice, often face funding challenges for rent, salaries, medical supplies and equipment as they rely solely on donations and community support. — Photo from MCH Klang Facebook
“When the nurse asks if I’m okay, I feel heard.
“Even family members are not interested in asking about my well-being,” said Zaitul.
Liow not only provides medical check-ups for Adib but also offers psychosocial support for Zaitul, who is now raising two teenagers alongside her terminally ill son.
Liow said her work was inspired by the struggles parents faced while caring for terminally ill children.
“Caregivers (parents) live in constant fear of losing their child. My role is to help them cherish the moments they have together,” said Liow.
For caregivers like Zaitul, the diagnosis of a life-limiting illness in a loved one can feel like the world has stopped spinning.
Yet, amidst the fear and uncertainty, there is a lifeline – a promise that they will not face this journey alone.
This is the essence of palliative care: a lifeline of compassion, relief and dignity not just for patients, but also for their families.
Palliative care provides relief from symptoms, improving comfort for patients while offering families guidance and counselling to navigate a difficult journey.
Liow attending to Adib who is being held by his mother Zaitul. — SHAARI CHEMAT/The Star
Palliative vs hospice care in Malaysia
Palliative care and hospice care are often used interchangeably but serve distinct roles.
Palliative care focuses on improving the quality of life at any stage of a serious illness and can be provided alongside curative treatments to manage symptoms, offering support to a patient regardless of their prognosis.
Hospice care, a specialised form of palliative care, supports patients in the final stages of life, where curative treatments are no longer effective. It prioritises comfort, dignity, and emotional support to allow families to spend meaningful time together without invasive treatments.
In Malaysia, the term “hospice” typically refers to community-based NGOs offering home-based services that allow patients to remain in a familiar surrounding while receiving support from trained professionals.
National Cancer Institute’s Department of Palliative Medicine and Supportive Care palliative physician Dr Saiful Adni Abd Latif said that while some hospitals have in-patient and out-patient services, hospices focused on continuity of care in the community, offering essential support at home after patients’ discharge.
“Palliative care supports patients and families, offering symptom management and emotional care to both parties,” said Dr Saiful, who is also the Malaysian Hospice and Palliative Care Council (MHPCC) honorary secretary.
“Palliative care workers work closely with patients, families as well as healthcare providers to navigate complex medical and emotional situations, which can ease the burden of decision-making during an already difficult time.
“This alone goes beyond what clinical treatments alone can provide,” he said.
Misconceptions
Dr Saiful pointed out common misconceptions, including the belief that palliative care was only for end-of-life scenarios.
He said another misconception involved morphine, with some believing it hastened death.
“In reality, it is used to alleviate severe pain and breathlessness, and when used properly there is no evidence linking it to shorter lifespans,” Dr Saiful said.
Caring for little ones
Paediatric palliative care in Malaysia remains underdeveloped, facing unique challenges distinct from adult care.
Although some hospices do provide care to children below 18 years of age, only three organisations – under the Malaysian Association of Paediatric Palliative Care (MAPPAC) – specialise in paediatric care.
Dr Saiful says palliative workers help patients and families navigate complex medical and emotional situations.
Under MAPPAC, the MCH operates branches in Kuala Lumpur, Klang (Selangor) and Sibu (Sarawak), providing care for children like Adib.
MAPPAC president Dr Lee Chee Chan said children’s cases differed significantly in nature and complexity compared with adults.
“Seventy percent of paediatric cases are non-cancerous, mainly genetic or congenital conditions, while adult cases are often lifestyle-related illnesses like hypertension or cancer, which lead to organ failure,” he said.
“Decision-making is also more complex, as adults can express their needs but children often cannot.
“For example, a child might say their pain level was ‘five,’ while the parent said it’s ‘eight,’ and the nurse observed it as ‘zero.’
“So a three-way dialogue is essential to determine the best course of action,” he said.
Dr Lee said many paediatric illnesses were rare and lacked curative options, making holistic care vital.
“Conditions treated include organ failure, muscular degeneration, neurological issues, brain damage, and developmental delays from birth.
“These diseases are often unpredictable, and it is hard to determine how long these children will survive,” said Dr Lee.
He said families typically would seek paediatric palliative care when curative options at the hospital were no longer viable.
“Our role then shifts to managing symptoms and supporting the family. For example, a child with a heart defect might not be able to undergo surgery but could live for years, facing challenges that require ongoing care,” he said.
Dr Lee says families typically seek paediatric palliative care when curative options at the hospital are no longer viable.
Gaps in resources
According to Dr Lee, who is also the MCH president, about 80,000 children in Malaysia require palliative care annually.
“However, only 200 new cases are supported by the existing system annually, due to gaps in awareness and resources,” he said.
While community hospices like MCH play a vital role, especially for families who cannot afford private nurses, the development of community palliative care in the country remains an uphill climb, and hospices have to do what they can with limited funding and manpower.
“(As NGOs) we cannot legally charge for services, so sustainability is a constant challenge,” Dr Lee said.
All hospices are reliant on donations and community support, he highlighted.
Dr Saiful said public awareness, while improving, still lagged behind, with many families only learning about palliative care services during a crisis.
“Manpower is also stretched thin, and the healthcare budget has to balance multiple parts of the healthcare system too, not just palliative care,” he said.
Expanding services
According to Dr Saiful, despite challenges, palliative care in Malaysia has improved.
The Health Ministry’s domiciliary programme, launched in 2016, initially focused on rehabilitating stroke patients.
“It has since expanded to provide palliative care in most states, though gaps remain in underserved areas,” said Dr Saiful.
Liow says her role is to help families cherish the moments they have left with their terminally ill children.
“These teams ensure that patients discharged from hospitals receive the necessary support at home, by focusing on symptom management and basic care while liaising with hospitals for more complex needs,” he elaborated.
Efforts to bolster community care under MAPPAC include training adult hospice teams to provide paediatric care and filling gaps in underserved areas.
MAPPAC offers a free handbook to support caregivers, which provides practical knowledge and guides on care for children.
Meanwhile MHPCC conducts monthly online training sessions to build capacity and improve access to palliative care, which attract around 200 participants.
MHPCC has also established a national directory of palliative care providers in 2022, accessible on its website.
Future of palliative care
Looking ahead, Dr Lee and Dr Saiful emphasised the need for advocacy, training and collaboration to strengthen palliative care services.
Both stressed the importance of empowering healthcare workers and volunteers with the skills needed to expand services.
Dr Lee shared his vision for a system similar to the UK’s where community nurses provided consistent home support.
“Community nurses could ease the burden on hospitals while ensuring families receive the support they need,” he said.
Dr Saiful highlighted the importance of collaborative efforts between NGOs, private hospitals and public facilities.
“Progress may be slow, but it is steady,” he said.
He noted that there were initiatives like the National Palliative Care Policy and Strategic Plan 2019-2030 that aimed to integrate palliative care into the national healthcare system, as well as education campaigns by care providers.
These help to address misconceptions and improve public understanding of palliative care, he added.
