‘Palliative care came into this country simply due to John Cardosa. John himself survived two cancers and then became secretary for the Cancer Society here in Penang. He went to a conference in Singapore in 1989, the second hospice conference, where there were three or four other people from Kuala Lumpur, and when they came back it was decided, he decided, we should have palliative care in this country.’⁹⁶

At the beginning of the 1990s, moves to found a hospice home care service took place in Penang under the auspices of the National Cancer Society of Malaysia. Meanwhile, parallel initiatives were under way in Kuala Lumpur, where the NGO ‘Hospis Malaysia’ was founded in 1991. Previously, Dato’ Dr Peter Mooney had tried to form a palliative care unit at KL’s Assunta Hospital, where he was chairman at the time. The initiative stalled because medical professionals considered end of life care was ‘too much of an effort’ and outside the remit of a hospital.⁹⁷

Volunteers were recruited and training undertaken in both locations. The Penang programme aimed to receive patients in June 1991 but had difficulty recruiting a nurse coordinator and eventually opened in March 1992. On the peninsular, Hospis Malaysia opened a home care service a month earlier, in February 1992, first covering Petaling Jaya then expanding to Kuala Lumpur in September 1992.

It was during 1992 that Ranjit Mathew Oommen and staff at the department of surgery in Kota Kinabalu’s Queen Elizabeth Hospital found they were operating on a large number of patients with advanced cancer. After all treatments were concluded, cancer recurred in about 70% of patients who were eventually sent home to die. To mitigate the effects of advanced cancer, a palliative home care service was established in 1993 under the umbrella of the Sabah Cancer Society. But it soon became apparent that an inpatient unit was needed to support the home care programme and provide a facility where patients could be admitted quickly instead of enduring the procedural admission to a general ward. It was this model, which established palliative care in hospital and home care settings - and built on Malaysia’s strong network of district hospitals to provide ‘seamless care’ - that attracted the attention of the MoH and led to the founding of PCUs in government hospitals. Ranjit Oommen:

Table 15 Malaysia: time line of hospice palliative care development

‘I think this is considered a role model for Malaysia because no nongovernmental agency can penetrate the villages. The government is the one that’s got the mission to reach every man in any country. So if we work through the government we should be able to reach every man, but if we work as a home programme we will probably be confined to Kota Kinabalu. So that is why we work with the government.’ ⁹⁸

A prime example of the combined public health-NGO model can be found in Sarawak where the department of radiotherapy and oncology at Sarawak General Hospital works closely with the Sarawak Hospice Society to a provide a state-wide service in both urban and rural areas. Building on the inpatient service which began in 1993, eight of the department’s 56 beds were designated for palliative care patients in 1998. Then, in 2003, the provision was further expanded to 16 beds. Beena Devi:

As a purpose built palliative care unit, we renovated the first floor for an 8-bedded palliative care ward for more stable patients and maintained the earlier beds for acute care. Currently our palliative care patients occupy more than the designated 8 beds for acute care.⁹⁹

From inception, inpatient palliative care numbers increased from about 50 in 1993 to around 720 in 2006 – and to over 200 in the Hospice Home Care programme. Beena Devi comments, ‘Our programme is the only one where palliative care is integrated into our health system and does not rely heavily on volunteers’.¹⁰⁰

From the late 1990s, palliative care development gathered momentum. Between 1998 and 2001, no fewer than 10 NGOs and dozens of PCUs and palliative care teams were formed. The founding of the Malaysian Hospice Council (1998) gave hospices a sense of belonging, a much-needed forum and a united voice in discussions with government. From the earliest days of the Association, membership of APHN brought not only training opportunities but access to networks and international recognition.

Then, in 2002 a palliative care unit opened in Hospital Selayang: an event that brought together key individuals who were to affect the future direction of Malaysia’s palliative care development. Richard Lim had previously led the PCU at Alor Setar in the state of Kedah, and was dismayed by the way it stalled after he left for Kuala Lumpur in 2001. He recalls:

What I could see from the PCUs throughout the country, which were mushrooming up because of the directive by the MoH, was that the units were only successful if there was a dedicated leader - a leader who understood and had passion for palliative care. Once that leader leaves, the unit declines and the care becomes poor. Leaders come and they go. One of the reasons the PCU in Kota Kinabalu stays well is because Mr. Ranjit still goes back to keep it alive; but we need more than just the odd person who has passion. Then again there are those who were passionate but left: why? because it was a professional dead end. I saw so many young keen people leave because there was no future. So in order to create sustainable leadership and create stakeholders in palliative care we needed a career pathway.¹⁰¹

To help create this career pathway, a proposal was presented to Malaysia’s Director General of Health in December 2004 concerning the development of palliative medicine. This was a collaborative effort undertaken by Richard Lim in association with the anaesthesiologist Dr Mary Cardosa, who jointly led the Selayang Unit, and Dr Gerard Lim, head of oncology services in the MoH. The outcome was the recognition of palliative medicine as a specialty, a strategy for identifying and training a group of specialist doctors, the establishment of regional specialist palliative care units and the acknowledgement of Selayang PCU as the MoH centre for palliative medicine development. Speaking in 2007, the Minister of Health articulated what this would mean for NGOs:

‘Since palliative care provided by the Ministry of Health at this stage will be solely institutional, we will be very dependent on the support of non-governmental hospice organisations for the continued care of patients upon discharge. NGOs have a large role to play in the provision of hospice care. This can range from providing hospice volunteers who can play an important role in planning and giving hospice care, to the setting up of hospice facilities. Hospice care is one of the fundamental responses that are needed for the sick and dying.’ ¹⁰²

While the development of specialist palliative care is designed to meet a clearly perceived need, the MoH dependence on the supportive role of NGOs raises important issues about the nature of care in the community and responsibility for its delivery. Deveraj comments:

I have held the view for years that to expect NGO’s to come up in all the urban areas to take care of community palliative care is totally unrealistic. It took me four or five visits to get an interest group going in a town to start a society. As far as I am aware no one has surfaced to do this again. So I have been pushing for the MoH to set up Hospital Support Teams (urban areas) or Health Support Teams (rural or out of town areas) to take on community care. The idea is not foreign. In fact it was raised at the first palliative care conference we held in Penang in 1993 and that too by the representative of the MoH!¹⁰³

Ednin Hamzah’s concerns are rather different. In a society where health care generally equates with hospital care, he wonders whether the development of palliative medicine might unwittingly reinforce this view, to the detriment of domiciliary services. Ednin Hamzah:

‘I think the recognition of palliative medicine as a specialty is a major step forward in giving credibility. It now comes with standards of care and expertise, an evidence base and everything else that goes with it, so you have not just the social component or the spiritual component but also the clinical aspect of care; and as it becomes a specialty a lot of the underpins of this will be transmitted mainly to the hospital fraternity because that is where the clinicians generally work under the Ministry of Health.

‘In the community, services are generally provided by volunteers from different areas of society and there is perhaps less of a push to embrace the clinical nature of palliative care. And from my perspective I fear that in years to come, as the evolving specialty develops into the hospital setting, you slowly end up with different levels of clinical expertise and maybe the community will be left behind - with the volunteers providing social support but not the clinical expertise that may be in hospitals; so there is a danger that you end up with a two-tier service. If you want good symptom control you go to the hospital palliative care service but in the community you may end up with just a social support programme without perhaps a 24-hour coverage; without nurses or doctors capable of dealing with scenarios such as pain control, obstructed spinal cord compression with intestinal obstruction and other situations. If these aspects of palliative care are not dealt with in the community, I think the community will start to feel that the only place to get palliative care will be hospital settings and patients may fear dying at home because their suffering will not be met by community palliative care. Community palliative care services need to address the issues of standards if they wish to remain clinically relevant’¹⁰⁴