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A light in the dark: Need for palliative care surges amid challenges, resource gaps
Melissa (right) and her team seen during a home visit to one of their patients.
MIRI (June 22): Through its quiet but consistent efforts, the Palliative Care Association of Miri (PCAM) has, for the last two decades, helped many patients live with dignity, comfort and support in the face of life-limiting illnesses.
The community-based organisation provides home care services, often reaching deep into remote and underserved areas like Batu Niah, Suai, Bakong, parts of Baram as well as Limbang and Lawas.
Still, sustaining these services has never been easy.
PCAM operates with a small team and limited financial resources, often without a full-time trained palliative care doctor.
While community donations and volunteers provide essential support, the growing demand for its services is beginning to outpace what the association can realistically provide.
These persistent challenges raise difficult questions about the long-term sustainability of grassroots palliative care – particularly in underserved regions like northern Sarawak.
And yet, many still misunderstand what palliative care is all about.
According to the World Health Organisation (WHO), palliative care aims to prevent and relieve health related suffering associated with life-threatening illness.
It involves managing pain and symptoms, while also addressing psychological, social and spiritual needs.
Melissa Desmond, one of PCAM's longest-serving nurses, said despite various outreach efforts, the public understanding of palliative care remains limited.
'People often think we only come in at the very end, but palliative care starts much earlier. It's about managing symptoms, supporting families, and giving people a sense of dignity through their journey,' she said.
PCAM's struggles, even as it celebrates its 20th anniversary this year, mirror broader national challenges on the availability and development of palliative care services.
Malaysia's growing elderly population and the increasing burden of chronic diseases are creating an urgent need for more accessible and better-resourced palliative services – not just in Sarawak, but nationwide.
Although palliative care was introduced in Malaysia in the 1990s, the field remains under-resourced.
This is becoming increasingly concerning as the country undergoes a demographic shift marked by a growing elderly population and rising prevalence of non-communicable diseases (NCDs).
Melissa says despite various outreach efforts, the public understanding of palliative care remains limited.
At the launch of the National Palliative Care Policy and Strategic Plan 2019-2030 in 2019, the Ministry of Health (MoH)'s then-national head of palliative medicine services, Dr Richard Lim, revealed that the number of Malaysians requiring palliative care is expected to more than triple by 2030 – from 71,675 cases in 2004 to 239,713.
He also pointed out that less than 10 per cent of those in need are currently receiving proper care, citing the lack of trained personnel and facilities as major obstacles.
In 2022, it was revealed by the then-Health Minister Khairy Jamaluddin that there were only 19 palliative specialists in the country – far below the estimated 218 required to meet national needs.
The situation in East Malaysia is especially critical, with limited access to such services further deepening the inequality between urban and rural populations.
A 2020 study by Su Lan Yang, previously a researcher at the National Institute of Health, and team projected that Sarawak is expected to surpass all other states by 2030 in terms of palliative care needs, with an estimated 35,065 cases.
This projection highlights the growing burden of chronic, life-limiting illnesses in the state, including cardiovascular diseases and cancer.
This increase in disease burden coincides with Sarawak's ageing population.
According to the Department of Statistics Malaysia (DoSM), the state has one of the highest percentages of elderly citizens in the country.
As of 2024, 13.4 per cent of Sarawak's population is aged 60 and above – second only to Perak (14.9 per cent).
Nationally, Malaysia is on track to become an ageing nation by 2030, with the elderly population expected to exceed 15 per cent of the total.
The DoSM data shows that 3.9 million Malaysians are now aged 60 and above, accounting for 11.6 per cent of the population, and 2.6 million people are aged 65 and above.
The increasing number of senior citizens, many of whom are living longer due to better access to healthcare, has inevitably driven up the demand for palliative care services across the country.
The need for comprehensive care is further driven by the country's NCD burden.
The National Health and Morbidity Survey (NHMS) 2023 reported that more than half a million Malaysian adults are living with four major NCDs, namely diabetes, hypertension, high cholesterol, and obesity.
Another 2.3 million are living with three of these conditions, increasing the likelihood of requiring long-term, multidisciplinary care.
A recent study by the Institute for Public Health, under the National Institutes of Health, has also drawn attention to the high rate of premature deaths caused by NCDs, such as heart disease, cancer, stroke, and chronic respiratory diseases.
These conditions are responsible for 74 per cent of deaths worldwide and disproportionately affect low- and middle-income countries like Malaysia.
According to the study, Malaysia's probability of premature death due to NCDs declined from 20 per cent in 2017 to 18.8 per cent in 2019.
However, the trend reversed following the Covid-19 pandemic, with the rate rising again to 19.4 per cent in 2021. It is projected to reach 20 per cent by 2030, mainly due to increasing deaths from cancer and diabetes.
In comparison, Malaysia's premature mortality rate from NCDs is higher than that of Thailand (13.7 per cent) and Singapore (9.5 per cent), but lower than Indonesia (24.8 per cent) and the Philippines (24.5 per cent).
These developments underscore the urgent need to expand and strengthen palliative care services across Malaysia, particularly in Sarawak.
With the state poised to face one of the highest palliative care demands in the country, stakeholders stress the importance of investing in human resources, infrastructure, and outreach to ensure that no patient is left behind in accessing end-of-life care.
