Nov 28, Kuala Lumpur: It comes as a shock to hear that a vast majority of people who die from serious illnesses do not receive adequate care and comfort at the end of life. Despite the massive levels of need, at best, only 10% of the people in need of palliative care services are currently able to access primary and secondary care services based on the Malaysian National Policy and Strategy Plan 2019-2030 published by the Ministry of Health.

A 2015 Global Quality of Death Index 13 published by the Economist Intelligence Unit ranked Malaysia at number 38 out of 80 countries worldwide. More recently, the Global Atlas of Palliative Care classed Malaysia as a Level 3A nation reflecting isolated palliative care provision. In comparison, our neighbours Singapore and Thailand were rated 4A, indicating preliminary palliative care integration within the national health service.

The reasons for this are manifold. From a human resource perspective, Malaysia only has twenty specialists in Palliative Medicine on the National Specialist Register as of November 2021 although more are currently in training. Geographically, across the country, seven Ministry of Health hospitals have a resident specialist and only four have a dedicated inpatient palliative care unit. There are two public universities with palliative medicine specialists, and five private hospitals. The states of Perlis, Kelantan, Terengganu, Pahang, Malacca, and Johor presently do not have specialist-led palliative care services.

Besides secondary care hospital services, primary care services in the community are in even greater need. Since the early 1990s, non-governmental organisations (NGOs) in the form of not-for-profit hospices have delivered the bulk of palliative care services to people in their own homes. Currently, over 30 such NGOs operate in the country on a largely charitable basis. Few general practitioners are trained in palliative care and in 2016, the MOH initiated a pilot domiciliary palliative care programme in community health clinics in the states of Selangor, Perak, Penang, and Kedah. Despite this, barely 15% of the country is covered by existing services that are limited to largely urban cities. Smaller towns and rural areas in Malaysia are grossly under-served by community services and overall, less than 10% of the people in need of palliative care nationally are being seen by the existing specialist hospitals and community palliative care services.

Funding-wise, the MOH spends RM7.5 million annually on palliative care services with RM0.8-1.2 million allocated to the NGOs to support their service operations. The Malaysian national budget for health in 2020 was RM30.6 billion and the spending on palliative care represents only 0.02% of the overall health spending. Palliative services are thus severely under-resourced.

The need for palliative care

As of 2021, the Malaysian population was estimated to be 32.67 million. The majority of deaths in Malaysia are attributable to non-communicable diseases accounting for 67% of premature deaths and over 70% of the national total burden of disease in 2014. In 2019, there were 173,746 deaths in Malaysia and the estimated national population palliative care needs based on mortality is approximately 119,885 adults and children using the lower end of a 69-82% total death figure reported by Murtagh. This figure is estimated to rise to almost 240,000 people by 2030 with an ageing population and increasing life expectancy. The Lancet Commission for Palliative Care in 2018 also calculated that approximately 223,832 people in Malaysia annually experience serious health related suffering. A similar study estimated that over 30,000 children in Malaysia are in need of palliative care services. As a result of the limited availability of services and support, while 61% of people living in Malaysia wish to die at home and 6% wish to die in hospital, the reality is sobering that 47% of deaths nationally take place at home while 53% die in hospital.

What is palliative care?

Palliative care as defined by the World Health Organisation (WHO) is “an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness.” It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.

Universal Health Coverage as promoted by WHO seeks that “all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship”.

Among the United Nations Sustainable Development Goals, good health and well-being, reduced inequality, sustainable cities and communities, and partnerships for the goals are necessary steps towards national development. People should have access to high quality, sustainable and equitable services that leave no one behind. In other words, the relief of pain and suffering is a basic human right. This is also in line with the 2014 World Health Assembly Resolution 67.19 that aims to “strengthen palliative care as a component of comprehensive care throughout the life course”, as well as the Declaration of Astana in 2018, where it was stated that palliative care must be accessible to all.

Where illness can no longer be cured, the relief of suffering and the maximising of comfort are paramount. Enabling people to live fully and at the same time supporting the family through the course of illness is vital. Distressing and debilitating symptoms such as pain, breathlessness, insomnia, worry, depression, anxiety, dry mouth, loss of appetite and many others warrant attention and relief, as do other problems, psychosocial and spiritual. Open and honest communication, care planning, coordination of care and meticulous attention to detail are critical in delivering holistic care to those who need it.

While 75% of Malaysians now live in urban areas, it should not be forgotten that the other 25% who live in rural areas which at present are grossly underserved with no access to palliative care at all. Patients living in rural areas are often less affluent; when they fall ill, some may not seek treatment in hospitals until the disease has reached an incurable stage. For this reason, the population requiring palliative care in rural settings is of particular importance.

IT and Palliative Care

One of the potential solutions to the shortage of palliative care services is telehealth mobile phone application for palliative medicine. To improve standards and monitor standards of palliative care medicine, the use of ICT (Information and Communications Technology) should be employed to enhance patient data registries, auditing, providing education and tracking of palliative care activities throughout the nation. Setting standards alone is insufficient to ensure good care is being provided; a process of monitoring will also be required using tools such as audits and key performance indicators to ensure that care providers continue to improve standards of care and are aware of how good their ‘good deeds’ truly are. The development of telehealth mobile phone applications for palliative medicine can ease the monitoring of palliative care patients and enable better auditing of concerning palliative care services. The mobile app could also be used as a platform for data gathering to enhance future research as well as to provide education for medical personnel.

The COVID-19 pandemic has placed enormous stress on health care systems worldwide. Admission and treatment of non-COVID patients was severely curtailed during the pandemic peaks as bed capacities in secondary care were at breaking point. Hospital visitation has been forbidden at a hospital policy level leaving the dying to die alone in hospital without their loved ones around them. Prudent risk assessments and personal protective equipment use was necessitated in community care, entailing greater costs and burdens for both patients and providers.

In adversity opportunities were created, along with accelerated adoption of technology. Healthcare providers have had to adapt to new ways of working. Palliative care has been no exception and telehealth has been described and embraced. E-family meetings, virtual reality intervention therapies, evidence-based clinical guidelines, and online education methods are some examples of the innovative steps taken by some sectors.

A key area of interest and future development is that of mobile health, or m-Health. A systematic review in 2020 described clinical monitoring, self-management, education, and remote monitoring using a mobile platform. Remote monitoring has been evaluated for feasibility and accessibility in rural Western North Carolina and as well as for outcomes in Tanzania with significantly lower severity and high carer satisfaction. A separate study conducted in India, Uganda and Zimbabwe was also acceptable to caregivers and healthcare staff in identifying, monitoring and communicating outcomes and managing human resource.

New and better methods of delivering optimal palliative care are undoubtedly warranted to reduce the access barriers and assist the navigation for people with palliative care needs within the healthcare system. Ensuring equitable care that is efficient, co-ordinated, cost effective and responsive while still delivering high quality care and best outcomes are key principles in designing services and deploying resources appropriately.

In addressing current needs, it is also of paramount importance to adopt innovative solutions that are sustainable models of care for the future. A closer integration of stakeholders in the public and private sectors as well as the broader civil society is vital to the solutions framework. These steps are urgently needed to address the huge, unmet palliative care needs in Malaysia.

Ultimately the importance of wide availability of palliative care in Malaysia is to create a safety net for everyone who falls seriously ill and experiences suffering from their illness. At present, without such a safety net, it can be assumed that the vast majority of the population who die from serious illnesses do not receive adequate care and comfort at the end of life.

By Dr Lam Chee Loong, Dr Ng Kee Seong and team