In Malaysia at least 90 organisations provide 110 palliative care services. Among these providers, 22 nongovernmental organisations (NGOs) account for 33 services, 20 of which are home care programmes (Table 1). Twenty government hospitals have established an inpatient palliative care unit (PCU): a facility with 6-12 beds. By 2001, 48 other government hospitals had formed palliative care teams with 2-4 beds (Table 2).

In addition, a small number of other organisations may have founded hospice-type services to support people living with HIV/AIDS.

Table 1 Palliative care services provided by NGOs in Malaysia, 2007

Table 2 Palliative care services provided by government hospitals in Malaysia, 2007

In a country where palliative care did not begin until 1992, this record is impressive. The spread is partly due to government support and the decision, during the latter part of the 1990s, to establish inpatient palliative care units in government hospitals by the end of the decade. This followed innovative work in Kota Kinabalu, where Dr Ranjit Mathew Oommen founded Malaysia’s first inpatient palliative care unit: an initiative that became a model for the country. A further step was taken in 2006 when palliative medicine became a specialty and Selayang Hospital was recognised as the main centre for palliative care development within the Ministry of Health. Alongside these developments, NGO hospice providers increased from two organisations in 1992 to 22 in 2007 (Table 3), the greatest number of new organisations being founded in 1998 (five) and 2001 (four).

Yet despite such growth, activists are aware of the barriers to palliative care in Malaysia. Dato’ Dr TP Devaraj, chairperson of the Malaysian Hospice Council observes:

Table 3 Time line of NGO development

The unmet needs of palliative care in Malaysia are enormous, thus posing challenges to the public, the providers and the government. Some of these are the lack of awareness of hospice, few services, late referrals, poor symptom control especially pain, little training, resource constraints both in the public and NGO sectors, the limitations of voluntary programmes and negative perceptions of hospice.

Awareness of palliative care services is often low amongst both the public and health professionals. Palliative care is not yet a societal issue. To become one there must be more advocacy and information targeting the public and health professionals by the Ministry of Health and hospice societies.¹⁵

Dr Oo Loo Chan is medical director of Charis Hospice (Penang), one of Malaysia’s more recently-founded palliative care NGOs (2004). For her, a central issue is the relationship between palliative care and the country’s public health system:

‘In Malaysia, palliative care is still seen as outside of the main health care system, and that means we have to continue to work to bring about a paradigm shift in thinking - primarily of doctors and policy makers - to see that it’s part and parcel of the health care system. The fact that palliative care is not seen as part of the main health care system means there are a limited number of personnel who want to come into this line of work. And if I look around, a good number of those who are involved are – not ‘over the hill’ but in the retired age group. So I think the challenge for us is to pull younger people in much earlier. Course, it’ll always be a challenge, because the benefits that we offer them, the remuneration, the fringe benefits, I think we will not be able to compete with some of the private hospitals.’ ¹⁶

Although palliative medicine has been designated a specialty, as yet there is no national palliative care curriculum in medical or nursing schools, which creates a heavy reliance on non-specialists and volunteers. In palliative care units this may mean a frequent change of medical officer, some of whom have little or only basic training. Dr Yeat Choi Ling, medical officer in charge of the palliative care unit at Ipoh General Hospital explains:

‘This palliative care unit is not on its own, it’s attached to a medical department. Therefore we have different medical officers come here and until I took over they kept changing. Previously most of the medical officers stayed less than a year because they are studying continuously and taking their Master’s programme.’ ¹⁷

While many palliativists appreciate the support of government and look forward to a growing number of trained staff leading inpatient units, questions remain about the effectiveness of the rotation system and the relationship between PCUs and care in the community. The palliative care pioneer, Ranjit Mathew Oommen, comments:

‘I say the top to bottom approach where the Ministry of Health says “we’ll start a palliative care unit if somebody’s put in there” doesn’t work. But in Kota Kinabalu, all the people – the majority of them - came here by choice; people who are dedicated, who are convinced that this is a fantastic speciality where you can serve and get satisfaction. So I see Kota Kinabalu as a model for the country. Our aim is, as far as possible, to provide all that can be provided in the hospital in the home of the patient.’ ¹⁸

An examination of the activity of NGO programmes reveals the extent to which these services rely on volunteers (Table 4). Although volunteers are acknowledged as a valuable resource, frequently offering commitment and experience, concerns arise about the effect of such reliance on the operation of the service. Devaraj:

Volunteer programmes and volunteerism, though admirable and essential in any civil society, do face many challenges. Briefly they are leadership, long term commitment, knowledge and skills, staffing, funding, quality of care and perceptions of marginalisation.¹⁹

Despite these reservations, volunteerism has a broad appeal in Malaysia and is ingrained in the fabric of society. Dr Oo Khaik Cheang, secretary of the Penang Hospice Society and the Malaysian Hospice Council explains how he came to be involved in palliative care after he retired from his post as Professor of Biochemistry at the University of Malaya, Kuala Lumpur (KL):

‘When I retired in Kuala Lumpur and moved back down here to Penang, one of the things was to look around to see what I could be involved in. So I started by becoming a member of the Penang/ Malaysia Nature Society and the Penang Heritage Trust. They are good programmes. The Nature Society has field trips: you go and observe birds and all that. The Heritage Trust is very strong in Penang - looking at the old buildings, preserving the inner city; they are very admirable and very interesting.’

Table 4 Three NGO palliative care providers: activity and personnel, 2005

(Source: 7th Malaysian Hospice Congress, 2006: book of proceedings)

‘But I also decided to come to the hospice. I’d heard about hospice in KL before I retired. I didn’t know what it was. I came here and I started to attend talks and eventually started to visit patients. And I found being interested in buildings and wild animals is different from being interested in people. Because the thing which strikes me most is that while I was involved in hospice work, I see a personal development as well - and that to me is really more [fulfilling]. It’s the thing that keeps me going because there’s no end to how you can develop personally. In other words, it’s a development - not in the sense of knowing more facts and having more skills, although skill is part of the whole thing, but becoming more personally developed in the spiritual and emotional aspects of life; and that I think is something that is more variable in people, because you can’t easily achieve it. There are very few places where this becomes a process of your being involved, but palliative care is one of those areas.’ ²⁰

Phylis Rani Singam, a former matron and lead person of Hospice Klang, describes the challenge of running a volunteer service:

‘The challenges that I face presently, is to get the volunteers to come and contribute. We have the first register with about 90 volunteers on it, but the people that really come and give a hand is only about 20 to 25. We have about 10 doctor volunteers but even then we sometimes have a problem when it comes to festive seasons or when it comes to summer vacation. I have to beg “Are you free today, will you be able to come?” Similarly the nurses; I cannot get a nurse because we don’t pay enough. A few come to help in my clinic but to go out home visiting they cannot, because they are all bogged down with their work; they are in great demand and many of them even go out to do a second job. Most nurses are shift workers, either morning or afternoon, so to depend on volunteers for their assistance I have to plan the roster and make sure that somebody is there all the time - whereas if you’re a paid worker in the government service then you just roster them and everybody comes and falls into line. But in this volunteer service we appeal to them, “Can you spare me two hours of your time?” It is going smoothly but at times during festive seasons it is difficult.’ ²¹

Among this patchwork of NGO and government services, a further development is taking shape. Following the designation of palliative medicine as a specialty, the Ministry of Health (MoH) has taken the decision to provide specialist palliative care services in a number of regional hospitals. The first is at Hospital Selayang, one of 10 government hospitals in the state of Selangor. Dr Richard BL Lim, who leads the PCU explains the difference between the Selayang unit and those in other hospitals:

Although the official number of beds is quite small we keep bursting the limit by over 80% and the workload and patient load is the largest in the country. It is different from the rest because it was the first unit with dedicated specialist palliative care. I was given the privilege to spend the majority of my time - 80% - in palliative medicine with the remaining 20% in internal medicine. I still do general medical calls and help out in the wards from time to time but my main designation is as a palliative care physician. In Malaysia’s other units, even though a specialist may be present it is not someone trained or dedicated to just palliative medicine.²²