Since the beginning of the hospice movement in Malaysia, education and training have been highly regarded features. Speaking at Malaysia’s first national hospice congress (1993), Devaraj recalls the organisation’s first venture into training during autumn 1990:

A training programme was begun in two parts. Preliminary of ten hours for all volunteers followed by an introductory course of fourteen hours for nurses, lay volunteers and doctors. A total of 65 persons attended these courses spread out over a rather long time and of these, 27 made a firm commitment to volunteer their services immediately.

One innovative feature was that guidelines were drawn up for the volunteers – lay, nurse and doctor, the nurse co-ordinator and the patient and his or her family on the mechanics of this service based on discussions that ensued at the training courses.⁵¹

During the formative days of the 1990s, the fledgling services relied heavily on support from the international community. The first national conference, held in Penang (1993), attracted a remarkable number of delegates (over 300) from Malaysia, Singapore, Hong Kong, Australia, India and Indonesia; speakers also travelled from these countries and, additionally, from England (St Christopher’s Hospice).⁵²

In the state of Sarawak palliative care training for hospital and public health staff began in 1995 with multiple sessions repeated annually. Led by Beena Devi at SGH’s department of radiotherapy and oncology, training includes ‘theoretical and practical aspects of caring for terminally ill cancer patients with emphasis on pain control’⁵³. The palliative care training programme for nurses is a two-phase programme. Phase 1 introduces the concepts and practices of palliative care whereas Phase 2 is an advanced, intensive course aimed at nurses with practical experience of palliative caregiving. Between 1995 and 2006, 850 nurses from government hospitals and public health sector facilities have been trained. The establishment of the Sarawak Hospice Society in 1998, with Tang Tieng Swee, the RDOs site coordinator as chairperson, has not only enhanced the service but the provision of education and training. Tang Tieng Swee:

We continue to provide [training] during our monthly meetings. This type of training provides the nurses with more in-depth learning skills as these are mostly based on case studies. Many topics are covered, mainly pain management, distressing symptom management and counselling of patients and family members.⁵⁴

By the late 1990s, hospices were drawing on a growing pool of in-country expertise when the government decision to establish palliative care units in all of its hospitals, welcomed in principle, placed a sudden and heavy demand on available resources. In the absence of any previously-established palliative care curriculum in medical or nursing schools, this meant that, nationally, provision went ahead of training – with the result that these units were frequently staffed by medical officers on rotation, sometimes for only weeks at a time. Consequently, education and training became urgent issues and in this scenario, nongovernmental palliative care providers developed a significant role.

Essentially, NGOs are engaged with education and training on three main fronts. First, is the continuing dialogue with national and state governments, university medical and nursing schools and local hospitals, regarding unmet need and long term planning. Next, is the day-to-day business of training the organisation’s workforce – both staff and volunteers – together with the need to build capacity, develop more facilities and train more educators. Finally, there is the ever-present association with local communities and the requirement for comprehensive awareness-raising activities to secure continuing support. An analysis of the training and educational initiatives in Malaysia indicates the imaginative ways these issues are being addressed.

Malaysian Hospice Council⁵⁵

The MHC has given voice to the hospice movement at the level of government and meetings between the Council and government officials ensure a two-way flow of information. Unsurprisingly, education and training are recurrent items. So the acknowledgement of NGO-led palliative care activities (recorded in the Ninth Malaysia Plan⁵⁶) and the verbal confirmation of continuing palliative care training for nurses and doctors has been encouraging.

A main activity of the Council is the biennial congress which has developed a strong international dimension. In 2006, the event was held in Kota Kinabalu, where the organising committee was led by Ranjit Oommen⁵⁷. It was here, in 2002, that the Palliative Care Association of Kota Kinabalu hosted the Annual General Meeting of the Asia Pacific Hospice Network, an event which raised NGO’s profile and added impetus to its development. The 7th Malaysian Congress incorporated a wide-ranging programme that included sessions on symptom control, communication, complementary therapies, grief and spiritual issues. In addition to Malaysian-based speakers were those from Australia (Profs Ian Maddocks and Margaret O’Connor), India (Dr Reena George), Africa (Dr Anne Merriman), Singapore (Dr Rosalie Shaw and Sr Geraldine Tan), Hong Kong (Dr Amy Chow) and the United Kingdom (Julian O’ Kelly and Wendy Leach).

Another HMC activity is the publication of an electronic newsletter, downloadable from its website⁵⁸ and mainly used as a vehicle for information exchange. The chairman leads with news items. Diary events are listed and member organisations record their activities in words and pictures. But it ends with a section titled ‘continuing education’: a series of articles covering professional issues from guidelines for home visits to palliative care challenges in Malaysia (Table 7).

Table 7 HMC e~News: ‘Continuing education’ topics, 2004-2007

HMC member activities

In recent years there has been a growing spread of educational activities, mostly organised by HMC council members. This has been assisted by the establishment of a PCU at Mount Miriam Hospital, with access to its associated facilities and by the development of new education centres, such as that opened by the Hospice Association of Sandakan (2004). Such initiatives have complemented the established centres in Kuala Lumpur, Penang, Ipoh and Kota Kinabalu. Table 8 gives indicative examples of the range of courses offered by palliative care organisations, many of which are offered each year.

Table 8 Indicative education and training events organised by HMC member organisations, 2004 - 06

Training for staff and volunteers is a core activity of hospice organisations. In Ipoh, the medical director of Perak Palliative Care Society outlines the cumulative training of the Society’s palliative care nurses:

‘When nurses come to us and they are not palliative care nurses we have to train them; like the two nurses we have now, Sister Nancy [Koh] - who has just finished her seventh year with us - and Sumathy [Arumugam] has just finished her fifth year. So these two nurses are quite experienced by now and have earned the title of palliative care nurses, although they don’t have the paper qualification. They are state registered nurses. They came to us and did all our hands-on teaching and the courses that we sent them on. This, with the...

Table 9 Perak PCS second palliative care tour: location and participants 2003

Source: Perak PCS

...experience they have gained through servicing the patients all these years, means they have become the most experienced palliative care nurses in Ipoh now, in fact in the whole of Perak State.’⁷⁹

The organisation’s training programme has included an imaginative innovation: ‘Palliative Care Network Tours’. Initiated by the Perak Palliative Care Society and supported by MHC, APHN and the UK charity Help the Hospices (tours 2 and 3), the first of these PPCS tours included Kuala Kangsar, Taiping and Penang (2001). The second, scheduled for April 2003, covered Alor Star and Kangar; but plans to visit Thailand had to be abandoned due to the outbreak of SARS. The third tour, later that year, encompassed the east coast of peninsular Malaysia, from Kelantan to Pahang. These were primarily educational tours, with teaching scheduled for hospices and palliative care units along the way. Team members included doctors, nurses and volunteers (Table 9). Methods included lectures, workshops, discussions, case studies, role play, bedside teaching, home visits, lunch-time and dinner talks (Table 10). The tours’ stated objectives are:

1. To give support and encouragement to health care workers and volunteers.
2. To share knowledge and give hands-on teaching to palliative care workers in their local settings.
3. To give participants in the tour the opportunity to experience the learning and sharing process and see for themselves how other palliative care teams work.
4. To foster goodwill and strengthen the palliative care network.
5. To improve the standard of palliative care services.⁸⁰

Table 10 Total team members included in Perak PCS network tours in 2001 (tour 1) and 2003 (tours 2 and 3)

In Kota Kinabalu, training for professionals and volunteers is organised in a systematic way. Visiting speakers conduct lectures and workshops to complement the weekly in-house programme. In July 2007, Ednin Hamzah visited to run a day’s workshop on ‘Ethical issues and communication skills’ attended by 30 participants: doctors, nurses and volunteers. An example of the PCAKK’s continuing programme of education is shown in Table 11.

In Petaling Jaya, Kasih Hospice Care has developed a two level, basic and intermediate course for its volunteer caregivers:

1. The basic course aims to introduce the principles of hospice care and share ways to cultivate positive approaches to change, loss and death.
2. The intermediate course is for volunteers who have completed the basic course and visited patients. It includes nursing and communication skills as well as ways to transform one’s kindness and compassion into skilful actions.

By 2006, the Kasih Hospice Care had conducted 16 basic courses (3,000 participants) and one intermediate course (20 participants). These programmes are conducted by palliative care specialists and senior volunteers both in English and Chinese and are enhanced by study visits to hospice organisations locally and internationally. In 2005, visits were made to Dover Park Hospice, Assisi Home and Hospice, Metta Hospice Care and Bright Vision Hospital, Singapore.⁸¹

Table 11 Training programme for volunteers, Kota Kinabalu Palliative Care Association, January – May 2006

Another forum for education and training is the team meeting where reports are given and cases discussed. Sharon Dabi, nurse manager of Hospis Malaysia, explains the value of these sessions:

‘We have this meeting in the morning at about 8.30 and all the nurses, the doctors, all the team will gather and we will pass on the reports: I mean the patients that we have seen the previous day. That alone gives you a lot of learning opportunities because there’ll be inputs from the doctors, inputs from the other nurses, on what you’re supposed to do and what you should do the next time. And Dr Ednin comes in with a lot of questions, so that alone is a continuous education programme for me. Every day there’s a lot of opportunities for learning.’⁸²

Alongside these learning opportunities, most hospices have public education and awareness-raising programmes. In keeping with its Buddhist principles, Kasih Hospice Care has conducted three public seminars on subjects like ‘The power of the mind’ (2005) and ‘The power of compassion’ (2006); participants numbered around 1,000. Eight talks have been given to Buddhist societies and NGOs such as the Lions Club, which attracted around 2,000 participants. Five radio and television interviews have been broadcast nationally.⁸³

Further north, Perak Palliative Care Society committed to ‘Project Cendawan’ in 1998: a scheme that provides information and support to individuals and community groups pondering the establishment of a palliative care service. Each year in the eastern state of Sabah, the Hospice Association of Tawau runs an annual 18-hour training course for volunteers, members of religious organisations and the general public. Many hospices have historical links with their local cancer society and present joint events for the public. This is evident in Penang, where a series of bi-monthly lectures include items such as ‘Bowel cancer for the layman’; also in Kuching, where a public forum has addressed issues around colorectal cancer.

Activists acknowledge that if palliative care is to become accessible throughout Malaysia then inroads must be made into the curricula of medical and nursing schools. Some work has already begun. Table 12 indicates the undergraduate teaching and attachment activity provided by Hospis Malaysia and Penang Hospice at Home.

Table 12 Undergraduate teaching and hospice attachment activity: Hospice Malaysia and the Penang Hospice at Home Programme

In Kota Kinabalu, an agreement has been reached between the Palliative Care Association and Universiti Malaysia Sabah (UMS), which opened a medical school in 2003. This memorandum of understanding ensures that all UMS medical students rotate, under supervision, through PCAKK’s home care programme,

A key innovation occurred in Kuala Lumpur with the establishment of the 4-day Palliative Care Foundation Course run by Hospis Malaysia in association with the Asia Pacific Hospice Network. Facilitators include tutors from Singapore and Australia. Here, a didactic approach is largely dismissed in favour of group work and role play. The following topics are included in the programme:

• What is palliative care?
• Assessment
• Symptom management
• Pain assessment and management
• Nursing and practical skills
• Communication skills
• Documentation and related issues
• Grief and bereavement
• Palliative care ethics
• Self care: stress and coping mechanisms

The planning and delivery of this foundation course is an example of the strong links between palliativists in Malaysia and Singapore. Rosalie Shaw, executive director of APHN, observes:

Singapore has had a role in the development of hospice in Malaysia. Many doctors and nurses have trained in Singapore, either as staff of Singapore hospice programmes, on clinical attachment or by attending courses, seminars and conferences. In particular, the post graduate doctors’ course has five places for foreign participants and in most courses, doctors from Malaysia take up at least two of these places. The APHN has also supported many of the hospice organisations with faculty for courses with intensive bedside teaching with staff. Since 2001 the author, as medical director, has spent time with 28 hospice or palliative care programmes from Kangar in the state of Perlis at the northern tip of peninsular Malaysia, to Tawau in Sabah on the east coast of Borneo.⁸⁴

Within Malaysia, Ednin Hamzah reflects on the gains brought about by government support for palliative care and of the government’s growing interest in some sort of national training programme:

‘I have been in discussions with the Ministry of Health for many years now. With other hospice groups we’ve been pushing for greater access to palliative care for the community and for the Ministry to help us in the provision of palliative care. We were fortunate that the Ministry issued a directive for the setting of palliative care in hospitals and then this year acknowledged the specialisation of palliative care. An area we’ve been increasingly involved in is training and education, where at present, we’re the only ones conducting regular [national] courses in palliative care – although they’re not at a level where you can get diplomas or certificates. But even this sort of course proves to be good, and usually the Ministry of Health provides about 20 people for every workshop that we run; and they’ve asked, recently, about how to provide structured palliative care training in the country. That’s been a very strong affirmation for what we’re doing at Hospis Malaysia. So hopefully we can transfer this to the rest of the country.’ ⁸⁵

After each of the 4-day Foundation courses Hospis Malaysia hold a series of modular workshops, held at weekends, designed to add greater depth to the participants’ palliative care knowledge. These are held over the course of a year and include palliative care nursing, communication skills, pain and symptom management and grief and bereavement issues.

Meanwhile, the training of Malaysian palliativists continues both within and outside of the country, contributing to a steadily expanding workforce with varying levels of expertise. While some courses remain unaccredited, others are acknowledged by certificates, diplomas and Masters level degrees.

A significant step in the accreditation of Malaysian doctors followed the MoH decision to acknowledge palliative medicine as a specialty. The identification of eight people to be trained in palliative medicine and the establishment of palliative medicine services in six regional centres was incorporated into the government’s Ninth Malaysia Plan. The first of these individuals, Richard Lim has undergone training at Australia’s Edith Cowan University and also taken the clinical diploma offered by the Royal Australasian College of Physicians Chapter of Palliative Medicine. He has spent a year at the Sydney Institute of Palliative Medicine and in Malaysia, he now holds the position of head of palliative medicine services (the de facto national adviser). Three more doctors have embarked on the three-year training programme – which includes a year in Australia - and two of them are scheduled to go to Perth and Melbourne respectively in 2008. Richard Lim:

What I hope is that once more doctors are trained we will be the key stakeholders and we can hope to develop more things in our units as well as in the public health sector of the Ministry of Health. There are plans to try to incorporate palliative medicine into the existing public health network but what we need to do first is to ensure a solid foundation for ourselves amongst our colleagues and other health professionals. My feeling is that there is still a lot of ignorance about what palliative medicine is and what it is not amongst a lot of health care professionals. Sure, they have some idea but they really have little understanding about issues at the end of life: issues of hydration and nutrition; communication issues; advanced planning; and the medicalisation of dying. These are things which are alien to most of my colleagues even in established specialties. So we need to build a foundation - and I feel we will do this best when it is reflected in our work and commitment to the philosophy of palliative care.⁸⁶