Palliative Care’s Meandering Path

By Catherine Ooi

September 2022 FEATURE
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THERE COMES A time in a very ill person’s life when they (and their caregivers) will inevitably ask, "How do I continue to make the best out of life with my serious illness, even as it progresses into its terminal stage?"

Intuitively we know that any attempt to clinically answer such a complex query would fall short. At its crux lies the value of human existence; what is left when disease and frailty strip all else away? Answering this is where palliative care particularly excels, and it seeks to do this by providing a framework that goes beyond medicine to embrace all dimensions of care, even to the end of life.

The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life for patients with life-threatening illnesses and their families "through early identification, impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual". This means that whilst the crux of palliation remains in the treatment and alleviation of symptoms, the total quality of life stands as the onus that governs its philosophy of palliative care.

Multi-Dimension Care

There is great strength in such a holistic approach, particularly for those at the end of life when curative treatment is no longer regarded as salubrious. As palliative care is patient-centred, anything that the patient is affected by quite simply becomes the concern of their multi- or transdisciplinary practitioners. The suffering to be palliated is not only physical, but relational, existential and spiritual. It often extends to the suffering of their loved ones, since a caregiver’s wellbeing often has direct impact on the patient.

Outside clinical management, this redress can take the form of ensuring an optimum healing environment in the home through the facilitating of family meetings, coordination of care involving allied health, accessibility to mental health practitioners, spiritual resources via counsellors and chaplains, and the connection of other forms of social equity and support, including volunteers. Such an approach takes "treatment" well beyond dealing with illness and death into the broader view of helping patients live the best life they can with the time they have left. In a world of increasingly complex and self-sufficient silos, palliative care presents a well-rounded approach that is powerfully human-centred. Due to its success, many developed countries now apply palliative care in the early stages of a diagnosis.

From a macro perspective, palliative care comes across as a type of intensive care dealing with very serious symptoms and diseases minus the kind of capital expenditures commonly seen in other medical specialties. Thus, it explains its enthusiastic adoption, at least verbally, by most governments despite being relatively new to medicine and only recognised as a distinct specialty in 1990 by WHO. Its economic cost-effectiveness is why some of the most successful palliative care programmes worldwide exist in the poorest of countries. In the words of one of its very early practitioners, Dr. Robert Twycross, it is a practice that is "high touch, low cost". With 78% of worldwide palliative care needs arising from poor and middle-income countries, it is a model eminently suited to addressing the public health needs of the hour, especially in Malaysia. 

Whole-of-Society Approach

Are we then, as a nation, adequately addressing this need? About 70% of total mortalities in Malaysia per year are deaths of people requiring palliative care. The Ministry of Health (MOH) has projected the annual figure for palliative care needs to be 240,000 by the year 2030, whilst a recent Lancet Commission projected current needs in Malaysia to already be at that number. As developing nations tip into the realm of matured demographics coupled with unprecedented life expectancy, the number of Malaysians requiring comprehensive support for chronic illnesses will increase exponentially. Smaller family sizes and modern economic pressures increase the burden of care, creating rippling effects across living standards and straining existing capacity. As is often the case, women take on 71% of total global informal care, with the highest points of disparity emerging from low-income countries.

Within the palliative care sector itself, problems prevail. Most rural areas are almost completely deprived of any form of palliative support, not to mention a noted lack of standardisation in community palliative care service development. Access to resources remains meagre, with most NGO hospices forced to raise most of their necessary funding on their own. Recruitment difficulties abound at community hospice levels and visible political support beyond the occasional journalistic platitude seems non-existent. Meanwhile, auxiliary threats loom by the wayside, in the form of criticisms of plummeting education and training standards in healthcare graduates, coupled with calls for better meritocracy. All these factors and more threaten to unravel palliative care’s hard-won progress. In 2015, Malaysia ranked #38 out of 80 countries on the Quality of Death Index, as published by the Economist Intelligence Unit. By 2021, this ranking had fallen to #62 out of 81 countries, an urgent clarion call for better accountability, planning and focus.

For palliative care to thrive, it needs more than a committed corps of healthcare practitioners. It requires a great deal of scrutiny and attention from advocacy bodies and watchdogs, data collectors and public health experts, lawmakers and economists, think tanks and royal commissions as well as researchers and academics. Only by prioritising palliative care as a national healthcare agenda do we have a chance to involve the broader society, creating lasting frameworks. Collective and social action is necessary through utilising community grassroots, tapping into the vast distribution networks and public services and appropriating the capabilities and resources of the private sector, where most of the wealth resides. This is why WHO calls palliative care a global ethical responsibility for everyone – governments, institutes and communities alike.

Much Room for Improvement

Yet, the scope of such an approach requires substantive power sharing, mutual empowerment between parties, the transparent flow of information, and a willingness to acknowledge when and where advancement and refinement should be executed. With so much room for improvement, the need for candid evaluations becomes paramount.

There have been many wins, of course. Over the course of two decades, the palliative scene has not been idle. Specialised services now exist in many of the largest state hospitals, many of which have inpatient units established or in various stages of development. Community, public domiciliary and private care have risen, attempting to fill in each other’s gaps. NGO or NPO hospices are present in every state in Malaysia except one, with relatively resource-rich Klang Valley boasting five NGO community hospices. Many private hospitals now offer palliative care services as well.

A national peak body for hospice and palliative care, the Malaysian Hospice Council (MHC), has been around since 1996, pushing an insulated, chiefly education-based agenda and contributing significant local knowledge and skillset development via its biannual congress. In 2019, after years of intense lobbying, MOH, in joint partnership with the hospice council and various universities, published the National Palliative Care Policy & Strategic Plan. The plan details a 12-year outcome-based road map which, amongst other goals, is meant to lead to an expansion of services at the hospital level and the buy-in of a palliative care approach at all levels of healthcare.

Clearing the ground for future developments are numerous technical committees that have arisen out of this watershed document, some more active than others. Everywhere, new shoots struggle to emerge from hard soil. A tiered competency strategy in palliative care now exists alongside an admittedly utopian but necessary plan for primary care integration at the community clinic level. The newly emerging paediatric palliative care is rapidly gaining visibility and traction. Not forgetting the small but growing number of passionate practitioners, quietly labouring for years, albeit mostly behind clinical and educational settings and lacking the up and downstream resources to tap into broader goals.

Far more needs to be done, especially with stakeholders outside of the actual practice of palliative care.  With the rise of non-communicable diseases, the largely unaddressed needs of marginalised and indigenous communities, rural populations and the hardcore poor, we need a call to arms that all sectors of society will heed. Palliative care belongs to everyone, and therefore, must be championed by everyone. For an "outcome" as inevitable as death, we must make its access a non-negotiable. Only time will tell if the foundation that is being laid now will be up to snuff.

Catherine Ooi

is an experienced hospice leader and administrator who is active in advocacy, training and raising death literary levels in the local community. She is the current Vice Chairman of the Malaysian Hospice Council (MHC), the national peak advocacy body for Palliative Care in the country and an Acumen Fellow and Palliative Care Fellow.