Among the ‘hot-beds’ of palliative care development in Malaysia, the cities of Penang, Kuala Lumpur, Kota Kinabalu and Ipoh and have come to occupy a special place. It was here that early activists banded together, advocated for change and put their beliefs about end of life care into practice - thereby challenging the status quo and making their voices heard at both community and structural levels of society.

Penang

National Cancer Society of Malaysia (Penang Branch): Penang Hospice at Home Programme

A feature of the hospice-palliative care movement in Penang was the combination of local pioneers and the readiness of the Penang branch of the NCSM to provide a service free of charge to patients. Whereas John Cardosa’s motivation was grounded in his cancer, for Devaraj it was linked to his development as a physician. He recalls:

‘You ask me, “What brought me to this?’ I’ll ask another question of myself, “What made me wait so long to do it?” It took me a long time for me to realise what I’m here for. I was well into my 60s before I really got interested in it and what keeps me going I don’t know. Everybody asks me, ‘Why? How is it that I’m still so active?” What I say is, “Palliative care! I’m addicted to palliative care at the moment” I think there is a need and I feel that we’re doing something which is helping people. We’re making a difference in the lives of individuals and it’s worth doing that.’ ¹⁰⁵

Once Penang’s Hospice at Home Programme became operational, the National Cancer Society became a conduit for experience-sharing as interest grew in other regions. John Cardosa:

Table 16 Penang Hospice at Home: patient details, 1992-2005

(Source: Statistics - Penang Hospice at Home Programme)

HHP Penang began spreading its wings first to Butterworth, then to Sabah where the first HHP group was started under the auspices of Sabah Cancer Society in late 1992. Hospice spread rapidly, mainly through the efforts of Penang HHP to Malacca, Klang, Seremban, Jahore Baru, Ipoh, Kuching, Kota Bharu, and eventually to other cities in Sabah and Sarawak. All were home care groups, some independent, others under auspices of Rotary Clubs, Cancer Societies and other NGOs.¹⁰⁶

In Penang, preparations for the NGO’s launch had been carefully orchestrated. Details of the new service were trailed in the press and medical journals. Talks were given in local hospitals. Referral forms were distributed and trained volunteers were ready to begin. Yet despite this preliminary work, and a carefully devised implementation strategy, the response was less than anticipated: just 26 patients during 1992. The reasons these modest numbers were manifold.

First, there was a sense of caution among the NGOs founders. No-one knew what the demand might be and a deluge of initial referrals would have over-stretched the team to the detriment of the service. Some patients were unacceptable because the admission criteria were unmet: either there was no carer at home or the patients had not reached the ‘terminal’ stage of their illness. Patients were also being referred from that part of Penang where coverage could not be provided; in these circumstances local nurses were recruited to offer support on the charity’s behalf. ¹⁰⁷

In 1999, however, HHP cared for 484 patients of which 332 were new referrals; around 150 patients were in the programme at any one time. Personnel included 4 full time nurses (2 on the island of Penang and 2 in Serebang Perai) and 59 trained volunteers (doctors, nurses and lay). Expenditure for 1999 was MR 200,000 (US $61,820, GB £31,100); all funds were donated by members of the public.

Since the beginning of the service, a total of 3,595 patients had been cared for to the end of 2005. Among these patients: 2,171 (60%) had been referred by a doctor or hospital; 2,554 (71%) were Chinese; and 1,614 (45%) were aged between 61 and 80. Among the 2,541 deaths, 1,999 (78%) patients died at home (Table 16).

National Cancer Society of Malaysia (Penang Branch): Rumah Hospis Pulau Pinang

By the end of 1993 there was a growing recognition that some form of inpatient care was required to meet the specific needs of patients: an expansion of care that was met with some apprehension. Devaraj:

‘Even though we have just started we have already become aware of the need for a hospice institution. Many terminal patients cannot go home as facilities are inadequate and so they continue to occupy beds in Hospital Penang. We also have had to turn down referrals because no primary carer was available in a home. Sooner rather than later we have to plan for a hospice – a task that seems daunting to us at this point in time.’ ¹⁰⁸

In 2000, the City Council donated the lease of a bungalow for conversion to a palliative care facility and the following year, it opened as an 8-bedded inpatient hospice: Rumah Hospis Pulau Pinang. Led by Devaraj, this was the first NGO-led inpatient hospice in Malaysia and is registered under the Private Hospitals Act 1971. Medical care is also provided by Lee Her Chin who, in 2007, graduated from Edith Cowan University (Perth) with the degree of Master of Palliative Care.

Patients may be referred from Penang HHP, from hospitals and from the community. Any doctor or any patient not in the home care programme is invited to contact the hospice doctor, who will decide if admission is appropriate. Admission criteria include the need for symptom management, respite care, special procedures and social reasons. Charges are RM 50 per day (US $15.50, GB £7.05) - although no-one unable to pay a fee is refused admission – and the package includes consultations, doctors’ visits, nursing care, medications, bed and board but not investigations. It is seen as a key element in Penang’s comprehensive continuum of care.¹⁰⁹

A total of 81 patients were admitted to Rumah Hospis Pulau Pinang during 2005. Among these patients: 65 (80%) had been referred by a doctor or hospital; 70 (86%) were Chinese; and 41 (51%) were aged between 61 and 80. Among the 46 deaths, 24 (50%) patients had been in the hospice for less than seven days (Table 17).

Table 17 Rumah Hospis Pulau Pinang: patient details, 2005

Source: Statistics - Rumah Hospice Pulau Pinang

Mount Miriam Hospital, Penang ¹¹⁰

When the Christian Sisters of the Franciscan Missionaries of the Divine Motherhood (FMDM) opened Penang’s Mount Miriam Hospital in 1976, they intended to provide a comprehensive service that would care for patients in every stage of their illness. The roots of the service date back to the work of the Grey Sisters who during the 1960s nursed Bishop Francis Chan. Andy Wee, Chief Executive Officer of Mount Miriam explains:

‘At that time the Grey Sisters [formerly known as the French Sisters of the Foreign Missions] were nursing Bishop Chan, who was suffering from terminal cancer. At that time, the Sisters were giving him palliative care and he valued it so much that he wanted the same treatment to be given to others who were going through this phase of their illness. But unfortunately the Grey Sisters could not continue their work and so the FMDM came in and founded this place in 1976.’¹¹¹

The Grey Sisters were invited to establish a nursing home, but under the FMDF it became a private not-for-profit cancer hospital which originally focused on those who were classed as terminally ill. The hospital later extended its services to include curative treatment and symptom relief. A Theraton 780 Cobalt 60 radiotherapy machine was installed in 1979 and 333 patients were treated that year. By 1995 a linear accelerator had been commissioned for external beam radiation treatments and the following year, patient numbers had increased to around 1,100. A day chemotherapy unit opened in 1999 and more state-of the art treatment machines were added to the facilities in subsequent years.¹¹²

The first palliative care day clinic opened in 2001 but major developments occurred in 2005 when a home care programme became operational, supported by a 4-bedded inpatient palliative care unit. Medical cover is provided by Lalitha Kanaphathi who is following the diploma in palliative care course at Cardiff University (UK) and was instrumental in founding the service. Coverage is mainly restricted to the island of Penang and referrals are invited from any local hospital. By the end of 2006, all of the inpatient beds were occupied and 10 patients were being cared for at home.

Home visits by doctors and nurses do not feature in the Malaysian health system so the founding of a home care service raises issues about cultural change and the dynamics of consultations in addition to the innovative nature of palliative care. Contact and communication are important elements. Lalitha Kanaphathi:

‘I go out once a week, depending on the needs of the patient. If he needs us more than once a week then we go out pretty often, but my nurse calls them on a daily basis and enquires about their health. She visits twice a week. And once a week we sit down and discuss all matters with the family: personal issues, social issues, everything. We spend at least half an hour to 40 minutes with the family each time we go out on a home visit.’¹¹³

Ann Phipps, Mount Miriam’s director of nursing services, believes that the hospital’s pastoral tradition has assisted the development of palliative care:

‘We’ve been giving pastoral care here for many years - many, many years. The pastoral service, the care, the spiritual, the psycho-social support has always been part of our system. It’s more formalised now but we’ve been doing pastoral care for 30 years. It is part of our system because we believe very firmly - and have never wavered from that belief - that even though we are a Christian hospital, a Catholic hospital, there’s respect for all people and all religions. We do not influence, neither do we evangelise. Each person is respected for who they are and what they believe.’ ¹¹⁴

As the palliative care service developed at Mount Miriam, the hospital’s links with Singapore’s Mount Avernia Hospital presented opportunities for training. Like Mount Miriam, Mount Avernia was founded by Franciscan Missionaries of the Divine Motherhood who had been in Singapore since 1949. The Sisters established the free-standing Assisi Home in the grounds of the hospital, which in 1992 became the Assisi Home and Hospice – a 35-bedded facility designed to provide continuing care for patients with cancer and other life-limiting illnesses.¹¹⁵ It was here that palliative care nurse Joyce Sumitra Romaya gained valuable experience in 2006:

‘I had a one-month attachment at the Assisi Home and Hospice. It’s a fully equipped palliative care unit/ centre and I had three weeks on home care - because I’m a home care nurse - one week on inpatient care and two days in day care. They trained me using the home care service in Singapore, showed me what I should do and how I can apply it here. So Assisi is like a training base, because at the moment in Malaysia we don’t have post-qualification bases for palliative nursing.’¹¹⁶

Charis Hospice, Penang ¹¹⁷

Charis Hospice became operational in Penang island during December 2004. Led by Oo Loo Chan, who holds a diploma in palliative care from Edith Cowan University (Perth), a team of trained doctors and nurses provide home care services free of charge to cancer patients. As with most NGOs, funding is an issue, although this is partly mitigated by donations from Penang’s Christian FGA Centre.¹¹⁸ Another challenge is the public perception of hospice care. Oo Loo Chan:

‘I think the receptiveness towards palliative care among the public here is still not that great, some thinking that palliative care is only for those who are terminally ill and those who are going to die very soon. So there’s that wariness accepting palliative care services, even though we know that there are things we can do to help the patient and the family.’¹¹⁹

In the 13 month period since the service began – from 1 December 2004 to 31 December 2006 - a total of 70 patients had been cared care. Among these patients: just 10 (14%) had been referred by a doctor; 66 (94%) were Chinese; and 35 (50%) were aged between 61 and 80. Among the 36 deaths, 21 (58%) patients died at home (Table 18).

Table 18 Charis Hospice: patient details, 1 December 2004 - 31 December 2005

Source: Statistics – Charis Hospice, December 2004 – December 2005

By November 2007, care had been provided for more than 200 patients. The hospice had also obtained tax exempt status, a fundraising food carnival had been undertaken, and placements had been taken up by student and graduate health professionals. Medical student Ee Wei, a medical observes:

I joined a palliative nurse to visit patients at home. Prior to that, I did not know anything about palliative care. I thought that cancer patients were hospitalised only. Now I know palliative care can bring them comfort and stress free life at home. The palliative team not only cares for the patients physically but emotionally too.

This reminds me why I chose to become a doctor – not because of fame, vanity or profit, but because of love. I see a role model of good professional and interpersonal skills with others, especially with the patient’s family.¹²⁰

Looking to the future, Oo Loo Chan suggests:

‘We need to look outward – to respond to the needs of the community; to look inward – to continually equip ourselves to face new challenges; to look upward – for God to guide and provide for us as he has faithfully done.’¹²¹

Pure Lotus Hospice of Compassion, Penang ¹²²

The Pure Lotus Hospice of Compassion is a Buddhist foundation which provides inpatient care for end-stage cancer patients of any age, religion or race. Established and run by Lyan Shih, a Buddhist nun and former nurse tutor, the service opened in 2001 before moving to its current premises in 2003. Prior to opening the hospice, Lyan Shih considered her options and identified a need for inpatient provision:

'Quite sometime ago I saw the working of the home care units and thought that it was not needed to duplicate this work. They were not doing the type of palliative care which I wanted to do, so I decided that I would like to concentrate on my inpatient unit. Here our patients come, we build a relationship and they live here as long as is necessary: ’til the end, ’til they die; there is no limit on time here. Sometimes, we have patients who stay one year, sometimes patients who stay longer - and of course the poor patients who are here for a short time; however long, we let them stay.’¹²³

Male and female patients are accommodated in separate areas with a total of 16 beds. Palliative care, counselling and spiritual support is provided by a team of staff including a palliative care-trained medical director, nurses and volunteers. Treatment, where required, is accessed at the adjacent Penang General Hospital.
An accessible garden incorporating a statue of the Buddha is available for Buddhists wanting to pray or for those wishing to spend time in a tranquil setting. Lyan Shih explains its significance:

‘The garden is a soothing place for the patients. When someone first comes in and is very ill, they need someone to talk to. Sometimes they just want to be alone for solace where they can pray. There is the priest, and I see them as well. But I do also leave them alone when I see them in the garden. They can express their feelings in there; they can come to terms with their situation.’¹²⁴

It was Lyan Shih’s interest in the spiritual and physical dimensions of care, against the background of mortality, which caused her to found the hospice:

‘I believe that spirituality is a very important part of care. This is why I became a nun, you know. I was a nurse for thirty years. I know that in the medical world they do many things for the patients, saving their lives, caring for them, helping them. I then see patients here that have undergone chemotherapy, radiotherapy and/or surgery; they still come here and they still die. Medical science is very good but I needed to search into this problem - life and death - and I came up with this solution for myself. I came to realise that a lot of people who are sick can do with my help. I have my nursing skill and my spiritual skill to help them through this. I come here every day, seven days a week. I receive a lot of joy and satisfaction from my work.’¹²⁵

In addition to the hospice provision, an outreach programme has been established to assist people living with HIV/AIDS to source medical treatment and provide educational and emotional support to them and their HIV infected or affected relatives. Financial support is also provided for AIDS affected widows and children to help purchase medicines and provisions, such as rice and cooking oil. Notwithstanding Lyan Shih’s vision, she has no illusions about the way HIV/AIDS patients are viewed in Malaysian society or the challenges involved. Speaking in 2006, she explains:

‘I get more opposition here with HIV/AIDS than when I was in cancer. The stigma is still there, people still cannot accept it and they ask me why I want to do it. I do think it will be a challenge but I do want to help them. I feel that society has to learn and I hope that through my work, people will come and support HIV and AIDS patients here in this place.’¹²⁶

Palliative Care Unit, Penang General Hospital

Following the government’s guidelines on the establishment of palliative care provision in general hospitals throughout Malaysia, Penang General Hospital founded a palliative care team in January 1999. The team was made up of volunteer doctors, nurses and paramedical staff who were allocated patients referred from other departments. The aim was to provide psychosocial support and relieve the physical symptoms of advanced cancer patients both within the hospital and in the community. The team worked closely with the NCSM Hospice at Home Programme and cared for patients referred to the hospital. On discharge, patients were referred back to Penang’s HHP and also to the Mount Miriam home care programme from 2001.

In April 2000, the palliative care team was allocated four beds in the male and female medical wards and the provision was up-graded to a palliative care unit. During the following year, the PCU was staffed by a volunteer administrator, a volunteer family physician (who conducted two clinical sessions each week) and two full time staff nurses.¹²⁷

In 2002 a retrospective study of palliative care patients at Penang General Hospital, conducted by the palliative care-trained doctor SB Khoo, was published by the Medical Journal of Malaysia.¹²⁸ Khoo reports on 156 cancer patients referred to her from January 1999 to April 2001 when she was associated with the palliative care service, first as a staff doctor then as a volunteer. Among these patients, two thirds of them were female; 72% were Chinese and the peak age fell between 50 and 59 years. The interval between referral was less than one day to over two years, the mean being around two months. One third of the deaths occurred within one month and one third over three months. Sixty per cent of the patients died at home (Table 19).

Khoo comments that at the time of her study, Penang Hospital’s PCU reached out to the community rather than the rest of the hospital, possibly because most departmental heads did not recognise the need for referral. Direct admission to the PCU from casualty was not allowed and where palliative treatments were suggested on a ward, they were frequently not carried out. She concludes:

Table 19 Patient details: a retrospective study of palliative care patients at Penang General Hospital, 1999-2001

Source: Koo, S.B. (2002) Palliative care: experience with 156 cases in a general hospital. Medical Journal of Malaysia, 57(4):408-417.

It is essential to have a palliative care ward and a home care programme of our own in order to improve our clinical skills and to ensure good palliative care services. We need the support of all the other doctors in the hospital to reach out to this group of patients. In time to come, palliative care should be considered as a basic need for all advanced cancer patients who should have the autonomy to request such care and not be deprived of it just because their doctors refuse to refer. Better still, every doctor should be capable of providing palliative care to his/ her patients in whatever specialty he/ she is working in.¹²⁹

Four years after the publication of Khoo’s paper there seemed little improvement in either the rate or timing of hospital-based referrals. Speaking in December 2006, Dr Ong Eng Eng comments:

‘Unfortunately I think that maybe not many [hospital] units know about us, or perhaps there are barriers in referring the patients, so in that sense I feel that we are just touching the tip of the iceberg. I think there are more patients out there who could benefit from palliative care; it’s just a matter of picking them up. We are trying to create awareness, but there is a big challenge ahead to actually educate even our medical professionals about palliative care.

‘The unit is still underutilised; so many more patients can benefit from it if they are referred earlier. A lot of the patients that are referred - sad to say - are referred at their dying moments. So I get two hours with some of them and then they die. There’s nothing much you can do; and that is something really sad for me because I feel that, hey, the patient has been in here for so long, why didn’t we think about that?’¹³⁰

Kota Kinabalu

Palliative Care Unit, Queen Elizabeth Hospital, Kota Kinabalu
Palliative Care Association of Kota Kinabalu

In the early 1990s, when Malaysia’s thrust towards development was showing signs of the country’s technological advance and rapid improvements in health standards, surgeons at the Queen Elizabeth hospital decided to take steps to confront the late detection of advanced cancer. After accepting a ‘Surgeons International’ invitation to visit medical centres in Australia during 1992, Ranjit Oommen led a state-wide campaign to raise the Sabah population’s awareness of the early signs and symptoms of common cancers. Government and NGOs collaborated in a two-phase campaign which included a travelling exhibition of 400 posters from the NCSM Penang branch. This coincided with public meetings, media coverage, a pamphlet in four languages titled ‘Nine Warning Signs of Cancer’ and information about self-examination of the breast. As a result, newly initiated cancer registry came to prominence, more people presented themselves for screening and there was an increase in the number of suspicious lumps that were surgically removed.¹³¹

Alongside this growing awareness, questions were asked about the needs of people whose cancers would not respond to curative treatment. To meet this gap in provision, Kota Kinabalu’s Hospice at Home programme opened in 1993 under the auspices of the Sabah Cancer Society, and operated from the premises of the Sabah Anti-Tuberculosis Association. All patients were registered with the surgery department of Queen Elizabeth Hospital which provided medical support and an admission facility. The service was led by Nancy Ng, a nurse coordinator who undertook palliative care training in Penang and Singapore. A second nurse was appointed when the number of patients reached 20. In 1994, a support group was formed aimed at facilitating a broadly-based, holistic home care service and a wide range of doctors, nurses and laypeople were recruited as volunteers. Then, in 1998, the support group, now known as the Palliative Care Association of Kota Kinabalu, became a registered NGO which operated independently from Sabah Cancer Society.¹³²

Soon after the first home care service was established, it became apparent that an inpatient facility was needed to support the programme and assist with symptom control. So Malaysia’s first palliative care unit was opened in 1995 by the department of surgery at Queen Elizabeth Hospital, Kota Kinabalu. It began with four beds, which increased to 10 the following year and became 12 in 2000. Its stated objectives are:

1. To provide a place of rest and improve the quality of life for those terminally ill cancer patients who cannot go home.
2. To provide a place where patients may be admitted directly to a specialised unit.
3. To provide a facility for short term inpatient medical treatment that cannot be given at home (such as a pleural tap, ascetic tap, and a blood transfusion).
4. To provide respite for the primary carer and family.
5. To create an awareness regarding the need for palliative care and to act as a training ground for medical, nursing and related professions in the field of palliative care; to have the potential to do clinical research in pain and symptom control.
6. To provide back-up and support for the home care programme, thus providing continuity of care.¹³³

Once the unit was operational it became clear that the admission and discharge of patients raised important issues. In short: patients were reluctant to go home unless they knew they could be quickly re-admitted. Ranjit Oommen:

‘We always have two beds available, one male and one female, so if at any time somebody calls and says, “So and so patient is having a problem we can’t handle, we don’t know what to do” they will bring the patient into the unit. One of the reasons that patients don’t go home in the general wards is because once they get out they can’t come back. It’s a big process so they will refuse to go. But here there’s a guarantee that there’s a bed available for them. They don’t have to go through casualty. All these things are clear. So people feel comfortable and as soon as they are well they say, “I’m going home because I can come back when I want to”. Some decide that they want to die at home: that’s a different matter. Some of them say they want to die in hospital -particular Chinese - because there’s problems associated with dying at home. So at the correct time relatives bring them in so they can die in the unit.’¹³⁴

A key development occurred when the Sabah state government allocated two bungalows to the Palliative Care Association. Before then the NGO had no permanent base and initially relied on goodwill. Sister Morna Chua, the nurse manager and president of PCAKK comments:

‘When we started one of our volunteers was kindly letting us use her apartment as an office and later on we had to move out and rent a house. Then we applied to the government to get a place for an office and we got these bungalows, which were two very run down buildings; and we raised about 300,000 ringgits to get them renovated.’¹³⁵

Known as Rumah PCA the refurbished premises were ready for use as an administrative base, day care centre and conference facility in 2001. By 2007, the Association employed three full-time palliative care-trained nurse coordinators, an administrative assistant, a part-time gardener, assisted by around 80 volunteers, to provide wide-ranging services, which are summarised as follows:

1. Home care
• For around 50 patient at any given time
• Within a radius of 35 km from Rumah PCA
• Weekly visits by nurse coordinators; more frequent visits as required
• Visits from volunteer doctor when necessary
• Pain and symptoms controlled
• Up-to-date techniques and technologies: syringe driver, oxygen concentrators
• Loan of equipment: ripple mattresses, suction machines, wheelchairs
• Training given to primary carers
• Social, psychological and spiritual care provided
• Volunteer support.

2. Day care
• Weekly sessions run by volunteers, attracting around 260 patients and 120 carers per year
• Massage therapy
• Aromatherapy
• Counselling
• Portrait painting
• Exercises and games
• Education for children unable to go to school
• Lunches for patients and carers.

3. Training
• A regular programme of workshops and seminars for volunteers
• All students from the Medical School of the University of Malaysia Sabah rotate through the home care programme
• Clinical attachments of 7 to 10 days’ duration have been undertaken by 23 doctors and 87 nurses.

4. A quarterly newsletter, including
• Molly Oommen’s editorial column
• Breaking news
• Patient and carer experiences
• Education and training: workshop, seminar news and reviews
• Conference news (global)
• Invited articles: volunteering, spiritual issues, pain management, complementary therapy
• Fundraising activities: events, donors, donations
• Diary dates.

7. Bereavement support
• Help for families
• Bereavement fellowship meetings twice a year

8. Patient social evenings

It was this vision of an integrated inpatient and homecare service, which prompted the Ministry of Health to recommend the Kota Kinabalu model for national implementation. Integral to this model, however, are: clearly-identified pathways between the community, the hospital and the PCU; published guidelines indicating how the unit may be accessed by needy outpatients and inpatients; and established lines of communication between the PCU and those district hospitals which receive transferred patients.

Ipoh

Perak Palliative Care Society

The PPCS home care programme (HCP) was launched in June 1995, although a group of interested people had been promoting a service since 1993. The following year, around 40 people attended the group’s first workshop and, amid growing community support, the Society was registered as a charity in February 1995. The Society’s mission is:

1. To provide comfort and symptom relief to people with life-threatening illness irrespective of age, race or religion.
2. To enhance such people’s quality of life.
3. To support grieving families.

To achieve this mission PPCS has identified the following objectives:

• To promote awareness of palliative care in the community
• To advocate for better services for the terminally ill
• To advocate for better education and training opportunities for health care providers
• To promote the spirit of volunteerism
• To provide palliative care services.¹³⁶

The Society is managed by a committee and Judy Chua, one of its members, explains how she became a volunteer.

‘My interest in palliative care actually started when I was in New Zealand. There was a donation drive by the Mary Porter Hospice in Wellington and I made a donation. They sent me a newsletter and in it they said they were looking for volunteers. So that caught my interest, mainly because many, many years ago I had a cousin who had cancer, in Ipoh; that was way back in 1980.

‘During that time there was no hospice movement. My cousin was 30 when she had cancer. Many people did not understand cancer then. I remember not knowing what to do or what to say and just seeing her suffer in pain, and the only one who cared for her at that time was her mum, my aunt. I remember too when she was in hospital she hugged us and said “I don’t want to die. I don’t want to die”. I felt really helpless. So when I got the newsletter and saw the advert asking for volunteers I thought “this is fantastic, I will sign up for it”. So I went for the training course, which was really good, and then I took a year off, because after going through the training there was not much opportunity to volunteer other than weekends. So I went to Mary Potter Hospice NZ and I was with them for a year before I decided to come back to Malaysia. And then when I came back to Ipoh, there was this thought in my mind, ‘I wonder if there is any hospice movement in Malaysia’.’¹³⁷

Datin Su Kamal is vice president of the management committee and she recalls how her appointment brought a different dimension to the group:

‘I think they thought they would like someone with a Muslim background as most of the others are mainly Christian. There are no Muslims around and in case they had Muslim patients they thought I would come in handy. I didn’t know much about palliative care but I was a retired nurse. I started working 40 years ago and stopped working 25 years ago. As my grandchildren were big I thought, “this is something to do rather than play golf”, but at the same time I thought that we really needed a cosmopolitan group to do something that was not racial.’

‘They then made me the fundraising chairman. That’s not so bad because we all really work together and tap our own friends, who are very supportive. It is very good. We don’t have to go round every month or every year. You can just show them what you are doing is all for the patients and not for other things. A lot of fundraisers do things which come out of the funds, like dinners, with all expenses coming from the money. All of our donors know that not one cent of their money is spent on anything but the patients.’ ¹³⁸

The Society provides the service free of charge but patients must buy their own medication and surgical supplies. Equipment such as commodes, wheelchairs and oxygen concentrators (which filter oxygen from normal room air) is available on loan. To be admitted to the programme, patients must have a cancer diagnosis, agree to the referral, have a caregiver at home, and live within 20 kilometres of the PPCS offices.
Despite the enthusiasm of the PPCS team - and a groundswell of support for palliative care provision in the Ipoh region - finding premises has been problematic. Since inception, the NGO’s office and activity centre has been re-located four times. Speaking in 2006, PPCS secretary, Datin Judy Chin comments:

‘Basically we’ve been nomads. We’ve been moving from place to place with support from local individuals. We started off from the Perak Community Specialist Hospital [a private not-for-profit hospital in Ipoh] where we were offered free lodging for quite a few years. Then, over the past few years we’ve been residing at a private bungalow, thanks to one of our patrons, before moving here. This place was empty, and belongs to my husband’s family, so I just approached my mother-in-law (my father-in-law is not with us any more). She knows of our work and of my involvement in the society since 1993 so the family was supportive and allowed us to be here indefinitely.’¹³⁹

The Society has since taken a decision to raise funds, purchase a piece of land, commission plans and construct purpose-built premises. In November 2007, a ‘Building Committee’ was formed to oversee the project and by the end of December 2007, a total of one million ringgits (US $308,740, GB £155, 725) had been raised.¹⁴⁰

Referrals to the PPCS Home Care Programme are accepted from:

• Private and government hospitals.
• Palliative Care Units of Ipoh Hospital and Selayang Hospital.
• Private medical practitioners.
• Palliative care/hospice organisations in other towns.
• Nursing homes.
• Homes for the elderly.
• Friends and relatives of patients who need palliative care.

In 2006, 193 referrals were received by the service. Around half of these referrals were made by patients themselves or by their family and friends (Table 20).

Table 20 Perak PCS home care programme: source of referrals, 2006

Source: Boon Chai Peng, Report on projects in 2006

These new referrals joined the 49 patients already admitted to the HCP, giving a patient total of 242 patients cared for during 2006 and 1,435 since the programme’s inception. To provide the home care service, members of the team covered more than 24,000 miles (Table 21).

Table 21 Perak PCS home care programme: activity and personnel, 2006

Source: Boon Chai Peng, Report on projects in 2006

Among the 168 patients who died during 2006, 110 (66%) died at home (Table 22)

Table 22 Perak PCS home care patients: place of death, 2006

The opening of the palliative care unit at Hospital Ipoh in 1999 was a groundbreaking event. It had previously been used as a maternity ward but since then had become a temporary storage space. Drs Pang and Koh Wai Keat worked hard to convince the hospital it could be better used as a palliative care facility and, having secured the space, went to Kota Kinabalu’s Queen Elizabeth Hospital for training with Ranjit Mathew Oommen. Koh Wai Keat later assumed responsibility for the unit, developed close links with PPCS and worked hard to see the provision expand:

‘When we started out with this ward and we initially couldn’t get enough staff. The facilities were quite run down but luckily we received some recognition from the [PPCS] committee. They started to contribute, instead of us having funds from the hospital, because there was no specific allocation from the government for palliative care facilities at that time. But we got help from the committee of course: from the Perak Palliative Care Society. They were the ones who also helped train the staff and the doctors. Eventually, when we got the health minister to come over here and to look at our ward, and told him what we are looking at, he actually looked at some special funds to set up and improve the service of the unit here. Initially it was only a six-bedded ward, a mixture of male and female patients. But I think two years later, we extended the other side so one side is for female and the other side for male patients.’¹⁴¹

Since founding the unit, Koh Wai Keat has moved to a private service but retained his palliative care interest through his role as chairman of PPCS. In 2006, literature from the PCU stated that the palliative care service includes doctors, nurses, physiotherapists, occupational therapists, medical social workers, counsellors and volunteers.¹⁴² During this year, 25 patients were referred by the unit to the PPCS home care programme, and 16 patients were referred from the home care programme to the PCU. The close relationship between the PCU and PPCS has enabled a broadly-based service to be provided across the catchment area, supported by a growing number of trained personnel, both funded and volunteer, together with a clinical environment for educational purposes. This is helpful in view of the growing links with the Royal College of Medicine Perak (Universiti Kuala Lumpur)¹⁴³ and the attachment of 50 medical students each year to the PPCS home care programme.

Yet in common with other hospice-palliative care services throughout the country, wider issues relating to staff continuity, education and funding for posts remain endemic and largely unresolved. Against this background, continuity - often provided by nurses in Malaysia - is a key element of care. Koh Wai Keat:

‘Some of the nurses have been here since the establishment of the ward, so they have been exposed to the palliative care concept for a while which is good. I think the nurses play a more important role in the day to day contact with patients so a stable relation with the nurses who have some palliative care experience is very important and makes a lot of difference.’¹⁴⁴

Kuala Lumpur

Hospis Malaysia

A review of the history of Hospis Malaysia reveals both similarities and differences between the NGO and the country’s other palliative care providers. As in Penang, the first initiatives began at the close of the 1980s. John Cardosa was influential in both cities. Local activists such as Devaraj and Peter Mooney pressed ahead with plans for a home care service despite lukewarm support from the medical profession and the Ministry of Health. Undeterred, members of the local community became energised by the possibility of better care for the dying. Volunteers presented themselves for training and, grounded in local support, a service opened to patients. It was a process which, to a large extent, was repeated in other cities throughout Malaysia.

Like other NGOs, Hospis Malaysia began modestly, providing a nurse-led service supported by a group of medical and lay volunteers. Yet as the Council reviewed its activity, a decision was taken that would differentiate the organisation from other service providers: to recruit a broadly-based body of full-time staff and move towards a professional, multidisciplinary palliative care service based in its own, purpose-built premises. In the mid-1990s this was a groundbreaking objective.

A first step was taken with the appointment of Ednin Hamzah as the organisation’s chief executive officer and medical director in 1997. The following year, Hospis Malaysia moved into its specially designed, newly-erected building in the Cheras district of Kuala Lumpur, which, with its day centre, pharmacy, clinical areas and conference facilities, meant that services could be further expanded. By the end of 2007, Hospis Malaysia employed 20 staff: 1 CEO/medical director; 1 deputy medical director; 2 medical officers; 9 palliative care nurses; 1 occupational therapist; 1 clinical psychologist; 1 general manager; 1 publications manager; 2 public relations executives; 1 finance and administrative manager; and 1 administrative executive.

Hospis Malaysia has been organised on departmental lines based on three core areas: clinical, public relations, and finance and administration. The clinical department includes the doctors, nurses, pharmacist, clinical psychologist and occupational therapist and is under the supervision of the medical director. Focusing on the patient, it is also concerned with the skill and knowledge acquisition essential to high quality care. The public relations department keeps Hospis Malaysia in the public eye, produces its literature, and is responsible for fundraising events. The finance team is responsible for the handling of accounts and the processing of funds.

To this structure, a new post of general manager, was added in 2006, designed to support the smooth running of an ever-growing organisation. Rosehayati Ahmed Noordin explains her role:

‘There was no general manager at the hospice before I came. I will normally take on the recruitment of the general staff, the administrative staff and the public relations staff and confer with Dr Ednin. I will also manage the training and development of the administrative and public relations staff with the managers involved. It’s usually on-the-job training, guiding them on what their duties are and working with them on how to improve – you know, how we focus on the maintenance of equipment, how we register the incomings and outgoings, and getting equipment cleaned before it goes out again - all those little things. If it involves the clinical team I’ll talk to the nurses and the nurse manager and ask, “Is this workable?”’

‘Two months ago I put my plan for the year to Dr Ednin, talking about how many staff we’re going to have and what we’re going to platform, and we came up with a figure: we will need 1.4 million ringgits for 2007. This is based on a forecast of activities, staffing, administrative support, maintenance, everything. So with that in mind I’ve worked out with the public relations group and the fund raising group how we can maximise our efforts and bring in the income.’¹⁴⁵

A feature of the clinical team is the employment of a psychologist, reported to be in short supply in Malaysia and - even more unusual - an occupational therapist. Toa Ben Taik ‘Raymond’ qualified in occupational health in 1990. After working in a government hospital he moved to a post in the community where he came across the work of Hospis Malaysia. Eventually, after working as a volunteer, he became a member of staff. Raymond:

‘Patients are referred [to me] by the doctors or nurses at the hospice. I deal with patients that are mostly symptom free. So once the pain, say, is under control, I come and assess them on function and abilities. I spend quite a long time with the initial assessment, sometimes two hours, and then with continuing cases I take less time, perhaps one hour. We have to look out for the various problems and there can be a pile of those; so then we sort them out one by one. Sometimes you have to go into the psychological aspect. sometimes the patient is unable to do any of the physical activities, and we then have to give them a lot more support.

‘For our future development, I need to look into costs and assess the professional technologies that are available, find out an updated way of handling, for example, of transfer skills. We have just had passed a transfer skills document that needs to be put into force. Both staff and families need to be shown this process so that the patient will benefit from an easier movement about. Another thing is for further adaptations to be available to patients when they are in their home environments. There is such a poor concept on these things. I really care for the patients and if in the future I have the opportunity to speak to the government and voice this, so that patients have parity to enhance their lives and live more independently within the community, then so be it.’¹⁴⁶

An important part of the Hospis Malaysia approach is the care of its members of staff. Teoh May May is a psychology graduate who is employed as a public relations executive. She tells how she came to work for the charity and how she was introduced to its core business:

‘One reason I came to Hospis Malaysia was because it’s a nongovernment organisation which I think for me is like giving back to society. I like the whole idea that we don’t charge patients any fee which makes me really proud of what I do, in a way. At the beginning we would go on home care visits to get first hand case experience on what Hospis Malaysia do with patients. Then slowly, you picked up phone calls: patients calling in and speaking about their conditions. So from then on we get a gist of the medical side also, you know the sickness and all. After that, if they are in day care, you see the patients every week and you get really close. So I’m preparing myself. And then I think I’m really grateful to her, for having a boss which understands and slowly puts me on [duties] rather than just throwing me into the deep end to face all these things.’¹⁴⁷

Between 1992 and 1996, patient referrals increased from 44 per annum to 146. Yet during the decade that began from the implementation of the human resource strategy in 1997, patient referrals soared to 1,389 (Table 23).

Table 23 Hospis Malaysia: patient referrals, 1992-2007

Source: Hospis Malaysia Statistics, 2007

In 2007, the average number of patients cared for each month was around 350 whereas the average daily total ranged from around 290 to 375. Among the 5,778 patients, 1,012 (18%) died. A total of 8,519 visits were made by doctors and nurses during normal working hours and 18,491 telephone calls were made (Table 24).

Table 24 Hospis Malaysia: patient activity, 2007