In dire need: Malaysia faces a critical shortage of trained palliative care professionals, including doctors, nurses and allied health workers. — CHAN TAK KONG/The Star
Hospice nurses work round the clock despite limited resources
PETALING JAYA: Death is a constant in the life of hospice nurse Nurul Nadiah Jaafar.
For over 14 years in palliative care, she has sat beside hundreds of patients as their pain came to an end.
Managing symptoms, comforting families and absorbing raw emotions are a part of her daily routine.
Like many in hospice care, she faces a heavy emotional and psychological toll, yet she continues to show up, driven by a belief that no one should breathe their last while alone or in pain.
With 45 terminally ill patients currently under her care, the Hospis Malaysia nurse is on call round the clock, making between four and six house calls a day.
Patients remain under her care until they die, usually taking months.
“Those usually referred to us have very little time left. We prioritise patients who are most in need of palliative care before setting out each day,” said the 40-year-old mother of two who has witnessed hundreds of deaths over the years.
Beyond managing pain and physical symptoms, she said a crucial part of her role is providing psychosocial support to caregivers, many of whom are overwhelmed by the demands of caring for a terminally ill loved one.
“Caregivers also need support because the responsibility can be physically and emotionally draining.
“We assess their emotional state and if they are struggling, we try to arrange for a private caregiver to help ease the burden,” she said.
Asked how she copes with the emotional weight of witnessing death so frequently, Nurul Nadiah said her motivation comes from knowing that her work can ease suffering for the patients and their families.
“In my early days as a hospice nurse, it was emotionally taxing to see patients I looked after dying.
“Knowing I can help make their final days more comfortable and dignified became a source of consolation that keeps me going.
“It also helps tremendously that I have a supportive husband and sons,” she said.
Public healthcare expert Datuk Dr Zainal Ariffin Omar said palliative care must be recognised as a non-negotiable medical right instead of an optional treatment to ensure humane care for patients with incurable conditions.
He said palliative and hospice care, while medically essential, continue to be regarded as optional in Malaysia due to gaps in availability and funding.
Services are largely concentrated in major hospitals and urban centres, leaving many rural and suburban areas with little or no access to proper end-of-life care, he said.
“Costs for palliative care in the private sector can be prohibitive, with most insurance providers and the national healthcare system offering limited or no coverage for home-based hospice care.
“This forces patients to pay out of pocket or forgo services altogether, turning what should be essential care into a luxury,” said the former Health Ministry director.
Dr Zainal said Malaysia faces a critical shortage of trained palliative care professionals, including doctors, nurses and allied health workers.
When proper hospice services are lacking, the physical, emotional and financial burden shifts almost entirely to families.
“Without professional support at home, family members become untrained caregivers, managing complex symptoms, medications and equipment.
“For those with limited means, this often leads to lost income, burnout and emotional distress.
“The human cost is severe, with patients enduring pain and distress that could have been prevented, with families left exhausted and traumatised,” he said.
He called for greater investment in training, nationwide palliative care services and financial support for both patients and their family members.
Public healthcare specialist Prof Dr Sharifa Ezat Wan Puteh of Universiti Kebangsaan Malaysia said hospice and palliative care remains underdeveloped partly because the field is seen as less profitable, resulting in too few doctors and healthcare personnel being trained in it.
“The shortage does not just limit access but can directly compromise the quality of care patients receive,” she said, adding that inadequate manpower forces providers to stretch limited time and resources across large caseloads.
“When care is spread too thin, it can lessen the quality of management.
“In the worst-case scenario, patients may forgo hospice or palliative care altogether because it is too expensive or too difficult to access,” she said.
Citing World Health Organi-sation data, Dr Sharifa Ezat said an estimated 56.8 million people worldwide need palliative care each year, including 25.7 million in their final year of life, yet only about 14% received it.
She said training and support must be strengthened, mainly in the public sector where provider-to-patient ratios remains low, with the problem more pronounced in rural areas and among the urban poor.
“The wider impact on families must also be taken seriously.
“Hospice services can significantly reduce the burden on caregivers who are often overwhelmed while caring for their ailing loved ones,” she said.
