A Social Commentary on Palliative Care in Malaysia

Palliative care supports society’s most vulnerable – those whose lives are profoundly altered by serious illnesses like cancer, heart disease, Parkinson’s, or dementia. These individuals and their families often face shattered expectations and must regularly interact with healthcare providers, who may not always bring positive news.

Policymakers often equate vulnerability with poverty (the B40 group), as limited funds restrict access when resources are abundant. However, in times of scarcity, even wealth cannot guarantee appropriate care

Reflecting on living in Malaysia is often an exercise in experiencing attitudinal shifts, from being a perpetual optimist that things will get better or a hopeless pessimist that things are never going to improve and we just have to be grateful for the tiny morsels of resources that we have.

Palliative Care deals with amongst the most vulnerable people in our society, where illness has irrevocably altered the planned journey of the affected person and their family.

What happens when a once healthy life is changed with the discovery of a life changing illness, perhaps cancer, heart disease or many other ailments. At times, the change is more gradual such as Parkinson’s disease or dementia. Persons, often with shattered dreams, may now have to include healthcare workers as people that they now have to meet regularly and often. They do not always bear ‘good news’.

Policy makers often equate ‘vulnerable’ to the poor, typically labelled the B40. That might be the case when resources are plenty. The poor have limited access due mainly to funding issues. But when resources are scarce, wealth does not guarantee access or that private services may not provide care that is appropriate, and might be worse.

Rising Challenges: Ageing and Non-Communicable Diseases

The rise of non-communicable diseases and ageing is a proverbial time bomb for the country. The modest Malaysian health expenditure of about 4% of its Gross Domestic Product (GDP) is inadequate to meet the growing health needs of the nation.

The recent Lancet Commission on the Human Crisis in Cancer highlighted the growing imbalance between scientific and clinical advances and the lived experiences of people with cancer. It highlights the neglect of core practices that support psychosocial wellbeing, uphold dignity, alleviate suffering and build trust. These are all areas that are the focus of palliative care. The gap in care provision is more likely to increase rather than reduce without adequate investment, not just in monetary terms but also in human capital.

This year’s (2025) theme for World Hospice and Palliative Care Day is ‘Achieving the Promise: Universal Access to Palliative Care’. In October, the Minister of Health announced that Malaysia hopes to increase the number of palliative care specialists to 50 from the current 34. Malaysia has made strides in mapping a plan to develop services.

Recently, Tripodoro et al published the Global Ranking of Palliative Care: 2025 world map under the new WHO framework (J Pain and Symptom Manage Nov 25), and we rank 41st globally out of 198 countries and hold a commendable 9th position in the Asia-Pacific region. There is a policy for development, and more recently, the national standards for palliative care was drafted.

The challenge moving ahead will be to measure our progress in implementation, with regular assessment on its impact and effectiveness. For only when policies trickle down to benefit those it was designed to provide for, can one really say that it has been effective. Measuring outcomes will therefore be paramount.

Some may have heard about the Golden rule which implores that you treat others as you would want to be treated but perhaps what we should really consider is the Platinum rule which is to treat others the way they want to be treated.

So, in the context of palliative care, how would Malaysians needing palliative care want to be treated? Increasingly with scarce resources, implementation of health interventions should be both data driven and co-designed with the participation of the patients / families of affected communities.

With early palliative care, Mr. Thiakarajah and his family shared almost a whole meaningful year together at home where he preferred to be cared for, despite an initial prognosis of short months. His story demonstrates the impact of effective palliative care delivery where and when it is needed.

What do we really know about the suffering and needs of those requiring palliative care in Malaysia? Have they been consulted in planning policies and interventions? And when there are interventions, do they work and what is the outcome? Do some interventions merely do things for convenience or could they be task-shifting and creating further issues and burden further down the line?

Effective intervention in palliative care should not simply look at measuring data such as number of people treated but should include whether their care has improved quality of life.

Ultimately it should change the behaviour of the community to reach out for palliative care at a much earlier point of their illness trajectory where palliative care integration could make a more significant improvement.

As Malaysia seeks to improve its position on the global ranking in palliative care, we do need to reflect on the lived lives of those who are truly affected, whether they are in hospitals, at home or perhaps even homeless and without caregivers. Give a thought to the marginalised communities, those incarcerated, migrant communities and those with limited rights.

Having 50 palliative care specialists in Malaysia two years from now would be an admirable achievement. But 34 million Malaysians co-designing palliative care may deliver the care they really want. There are millions more Malaysians in this country than those working in the Ministry of Health. Corporate agencies, non-government organisations, volunteer groups, faith based and other community groups and individuals that make up this country can bring about a transformative change if given the opportunity.

Perhaps a consultative plan with all relevant stakeholders may result in better outcomes for all?

Using a suggested Indicator Hierarchy to strengthen Palliative Care in Malaysia

Indicator Hierarchy	Description
Input	Resources put into the project
Process	Activities/services delivered
Outcome	Changes in behaviour or skills
Impact	Change in health or disease trends

The table above, outlining the Indicator Hierarchy with Input, Process, Outcome, and Impact, provides a useful framework for looking at how palliative care can be improved. In healthcare systems where resources are limited and needs are growing, such as palliative care in many countries, it is important to have a structured way of measuring progress.

This approach promotes planning that is both data- driven and patient-centred. It shifts the conversation away from quantitative measures, and instead asks some more relevant questions about effectiveness – outcomes for patients, and for the nation. Are these efforts really improving the lives of patients and their families? Are they changing the health trend or disease trends of the country?

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This article was first published in the Hospis Malaysia newsletter and is republished here with permission.