Sr Amerah – sister in charge of the Breast Care Unit, Dept of Breast Surgery, University of Malaysia Medical Centre (UMMC), Kuala Lumpur: interviewed by Michael Wright, 5 December 2006. Length of interview (with Prof Yip Cheng Har and Dr Sylvia McCarthy): 43 minutes.

Sr Amerah outlines her duties at the Breast Care Unit and speaks of her responsibility for helping to develop the ‘palliative corner’ first established on the UMMC breast surgery ward in 2005. One of her prime concerns is to ensure that a team of trained nurses is in place to cover the six-bedded corner and a private room 24 hours a day. She tells of the training needs and where nurses may be placed to develop their palliative care skills. Helpful links have been made with Hospis Malaysia, but the countrywide shortage of nurses, particularly acute in government hospitals, poses a serious problem which inhibits nurse-training in particular specialties. She hopes the planned initiatives for 2007 bring a renovated area with increased staff and a more supportive infrastructure.

Dr Ahmed Kamal Mohammed – oncologist; Subang Jaya Medical Centre, Kuala Lumpur: interviewed by Michael Wright, 7 December 2006. Length of interview: (with Dr Foo Yoke Chin) 9 minutes.

Ahmed Kamal Mohammed recalls the time he spent as a Registrar in an Edinburgh Hospital when a telephone call to Dr Derek Doyle at St Columba’s Hospice resulted in discussion around the patient’s condition; frequently, Derek Doyle would visit the hospital to see the patient in situ. Back in Kuala Lumpur, he reports that such support was unavailable until Hospis Malaysia became established and collaborated with local hospitals. The result is that patients with advanced cancer may now be referred to the Hospis, whereupon arrangements are made to visit the medical centre or to see the patient at home. A collaborative approach ensures that essential equipment is placed in the home prior to discharge, and close communication between the Hospis and Subang Jaya means that oncological interventions remain an option, if the patient would benefit from them. Kamal thinks that the two years he spent in Edinburgh sensitised him to hospice care, and this understanding has informed his approach to patients. While knowledge of hospice among medical students remains patchy, he believes this will change in the wake of palliative medicine being classified as a specialty.

Ann Phipps – director of nursing services, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interviews: (with [1] Penang group and [2] Mount Miriam group): 1 hour 21 minutes.

Ann Phipps trained in the United Kingdom and describes how, as a student nurse, she ‘wanted to do more’ for a patient with cancer and as a result decided to specialise in oncology. On her return to Malaysia, she was appointed to the staff of Mount Miriam hospital (1976) where she has spent her professional life. She speaks about the development of Mount Miriam: how it became a state-of-the-art cancer treatment centre which now accommodates a four-bedded palliative care unit with trained medical and nursing staff. In the Malaysian context, she notes that many palliative care activists have retired from full-time employment and may occasionally be described as ‘over the hill’. But in her view, this description is far from derogatory since it recognises the ‘golden age’ of the elderly and the valuable experience they bring after successfully negotiating the various ‘gradients of life’. She considers that the palliative care unit is an important step forward and looks towards the recruitment and training of more staff. She recalls, however, that the hospital has had a long-standing interest in the palliative care approach within which spiritual and psychosocial elements feature prominently.

Andy Wee – chief executive, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 7 December 2006. Length of interview: (with Dr Lalitha Kanapathi) 14 minutes.

Andy Wee tells how Mount Miriam Hospital was founded by the Roman Catholic Sisters of the Franciscan Missionaries of the Divine Motherhood in 1976 as a pioneering centre for cancer care in Malaysia. He traces the history of treatments and details the acquisition of the first cobalt machine and present day linear accelerators before turning to the development of palliative care. Provision includes an out-patient clinic together with in-patient and home care services.

Dr Boon Chai Peng ­– medical director, Perak Palliative Care Society, Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview (with Datin Judy Chin): 43 minutes.

Boon Chai Peng speaks about the inclusive mission of PPCS, how the society came into being and the ways in which its nurses have been trained: by attendance at courses and practical experience. She describes the administrative structure and explains how patients are referred to the Society and cared for free of charge. The Society is keen to promote palliative care awareness within the community, to advocate for better services for those with life-limiting conditions, and to develop better training programmes for health care providers. Volunteers are essential members of the team and fundraising is crucial to the continuing success of PPCS. She also speaks about the Society’s relationship with the government hospital’s 14-bedded PCU and the care it has provided for those among the Society’s 1,400 patients who have been admitted to the unit since 1995. While in-house medications are provided free of charge by the Society, Boon Chai Peng says that other medications must be provided by the patient’s family, and this can sometimes become a heavy burden.

Cheah Hong Chai – palliative care nurse, Kasih Hospice Care Society: interviewed by Michael Wright, 4 December 2006. Length of interview (with Dr Lo Ee Chin): 1 hour 20 minutes.

Cheah Hong Chai outlines the difficulties communicating with a patient who forbids disclosure of the diagnosis. But despite the prohibition, she notes there is often an acceptance on the part of the patient that life has become short: a key factor she rates more highly than knowing the diagnosis. In these circumstances, it is possible to care for the patient and speak with the family about the shared understanding. Although she is committed to home care, Cheah Hong Chai would like the extra support of an in-patient unit to deal with complications that cannot easily be managed at home, but which are unlikely to result in admission to hospital. She acknowledges the recent hospice-palliative care palliative advances in Malaysia and looks forward to a future that encompasses a more integrated type of provision.

Dato’ Dr TP Devaraj – chairman, Malaysian Hospice Council and chief executive officer/ medical director, Rumah Hospis Pulau Pinang: interviewed by Michael Wright, 8 December 2006. Length of interview (Penang group): 54 minutes.

Devaraj traces the increase in hospice patients in Penang from the first six who were cared for in March 1992 to the 500 new patients now admitted annually to the hospice programme. Among the many challenges currently being faced, are the negative feelings he perceives around phrases such as ‘terminal care;’ and ‘end of life care’: terminology that causes difficulties among sections of Malaysian society. He is hopeful that the government plan to establish six regional palliative care training centres will help to raise the profile and skill levels of the service. He sees a crucial role for medical schools and regards the absence of palliative care in medical curricula as an abnegation responsibility. With widespread innovations firmly in place, he thinks the time is right for more action – and government expansion of palliative care services. Devaraj acknowledges the contribution of NGOs and wishes to see a community involvement in rural as well as urban areas. Where there is no NGO, he calls for a lead from government through the provision of home care services based in district hospitals and health centres.

‘Din’ Kamarudzin Yasin – volunteer, Hospis Malaysia, Kuala Lumpur; interviewed by Michael Wright, 8 December 2006. Length of interview: 17 minutes.

Din became involved in the work of Hospis Malaysia after the appointment of his wife, Rosehayati Ahmed Noordin, to the position of general manager. He recalls how he was interviewed by the volunteer manager to determine where his skills might be best be used. He describes himself as an outward-going person and so he was pleased to become responsible for meeting visitors, taking them to appointments, providing airport transfers, and giving short tours of the city. He likes driving day patients between their homes and the hospice, gradually getting to know them and sharing a small part of their lives. Through these activities, Din feels a sense of satisfaction both in supporting the individual and giving something back to society,

Dr Ednin Hamzah – chief executive, Hospis Malaysia, Kuala Lumpur; interviewed by Michael Wright, 22 December 2004. Length of interview: 54 minutes.

Ednin Hamzah recalls how he studied medicine in the UK and practised in the northern city of Newcastle before returning to Malaysia in 1997. The previous year, a chance meeting with the chairman of Hospis Malaysia had brought to his attention that the post of medical director had been vacant for two years. He accepted the appointment and, while still in England, prepared himself through an attachment to St Oswald’s Hospice, Newcastle and subsequently consulted Drs Cynthia Goh and Rosalie Shaw. He speaks of the situation he found at Hospis Malaysia, of the charity’s then location in Assunta hospital, of the mostly end-stage care that was being provided in the home, the need for education and training, and a clearly defined medical input. Consequently, he presented a new vision to Hospis Malaysia’s council in which palliative care was perceived as ‘needs-based not prognosis-based care’ - not limited to those with a cancer diagnosis, but which covered all illnesses. The council approved this shift in emphasis and a rigorous development programme followed. Ednin outlines the changes: a new approach to care; different patterns of work; public awareness initiatives; a focus on cultural issues; family conferences; data collection and evaluation; and a comprehensive programme of education and training.

Dr Ednin Hamzah (2) – chief executive, Hospice Malaysia, Kuala Lumpur; interviewed by Michael Wright, 7 December 2006. Length of interview: 27 minutes.

In this interview, Ednin Hamzah tells how palliative care has moved on in Malaysia since 2004. He explains that the designation of palliative medicine as a clinical discipline (2006), combined with increasing interest on the part of the government, has created a higher profile for palliative care and a career pathway for doctors. He thinks that currently, training is of paramount importance and is encouraged by the invitation for Hospis Malaysia to become involved in the training of medical students. As palliative care becomes more established across the country, he is anxious to avoid the development of a two-tier system in which doctors become more engaged with hospital-based PCUs and community teams concentrate on social care. Turning to Hospis Malaysia, Ednin speaks of the increase in patient referrals (to around 1400 per year); the safeguards built into the staff recruitment process; his expectations of the hospice team; the boundaries on volunteers (particularly those with a medical and nursing background); and his hopes of developing a broader, multidisciplinary service.

Elspeth Townsend – friend of Hospis Malaysia, Kuala Lumpur; interviewed by Michael Wright, 5 December 2006. Length of interview: 10 minutes.

Elspeth Townsend studied for a Master’s degree in Modern History that focused on the 1970s genocide in Cambodia and speaks of her current ambition to found a children’s charity in South East Asia. She recounts how she was brought up in Britain and Australia and how she has travelled extensively in Vietnam, Thailand and Cambodia. She speaks of her role at Hospis Malaysia: how she assists with fundraising and administrative tasks and of her personal involvement in events such as swimming with sharks. She considers her hospice experience to be of great value: an introduction to a previously unfamiliar area in which she has learned to become more sensitive and patient.

Emily Yap Lee Peng - palliative care nurse, Hospis Malaysia, Kuala Lumpur:  interviewed by Michael Wright, 6 December 2006. Length of interview (with Sharon Victoria Dabi and Loi Fui Fen): 52 minutes.

Emily Yap Lee Peng was working as a staff nurse on a hospital medical ward when she attended a training course at Hospis Malaysia and thereafter decided to move to the hospice when her five-year contract came to an end. She tells how her new role as a palliative care nurse was initially very stressful due to the expanded responsibilities and Ednin Hamzah’s high expectations. Yet she describes the work as ‘very meaningful’. While Emily acknowledges there is much to learn, she is encouraged by the experience of other nurses and the support of the hospice doctors, which means that she never feels professionally isolated. She contrasts her previous, treatment-oriented work on a busy medical ward with the way she works at the hospice - an approach which allows her time to develop closer relationships with her patients and, in addition to caring for them, learn from the lessons of life.

Dr Evelyn Ho – president, College of Radiology, Academy of Medicine, Malaysia; editor, Radiology Malaysia: interviewed by Michael Wright, 5 December 2006: length of interview (Carcosa group): 1 hour 24 minutes

Evelyn Ho reflects on the health system in Malaysia and speaks of the high patient load carried by doctors, often exacerbated by a lack of resources, which sometimes makes people feel they are treated in a mechanical way, as simply a disease category. While palliative care provision is patchy across the country, many physicians are unaware of the services which are available, so patients who would benefit from them are not referred. She tells how she became aware of palliative care through the illness and then death of a friend during the 1990s, when hospice care was in its infancy. She has since developed links with Hospis Malaysia and is keen to dispel the idea that palliative care is only for people who are imminently dying. She thinks that the current palliative care focus on patients with cancer should be broadened to include people with other life-threatening conditions and whenever possible, uses her website to raise awareness of hospice and palliative care provision.

Dr Felicia Chan Chui Fun - doctor, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 7 December 2006. Length of interview: 22minutes.

Felicia Chan Chui Fun recalls how she was given a palliative care responsibility in the hospital where she worked in northern Malaysia and quickly formed the view that more could be done for her patients, especially with regard to pain relief. Consequently, she attended a Hospis Malaysia workshop and was so impressed that she transferred to a Kuala Lumpur hospital to gain easier access to palliative care training, then later joined the Hospis Malaysia team. Felicia tells how, in medical school, there was little emphasis on communication but realised its importance when she became involved with home care patients facing life-limiting illnesses. Featuring prominently among her perceived challenges is the difficulty in gaining swift hospital admission for a patient who would benefit from medical intervention, due, she thinks, to lack of palliative care awareness among medical colleagues. She looks, therefore, to greater support from government, an increased commitment to training and a better understanding of palliative care among doctors, young and old.

Dr Foo Yoke Chin – oncologist; Subang Jaya Medical Centre, Kuala Lumpur: interviewed by Michael Wright, 7 December 2006. Length of interview: (with Dr Ahmed Kamal Mohammed) 9 minutes.

Foo Yoke Chin undertook a training course in palliative care as part of her medical studies in Ireland. She teaches at Kuala Lumpur’s university and although the component is very small, a palliative care module has been introduced into the medical curriculum. With the designation of palliative medicine as a specialty, she considers that a new career pathway will open up for doctors. Then, as consultants become more numerous, Foo thinks the situation will gradually improve. She recognises, however, that these are early days since palliative medicine has only recently been recognised.

Sr Geraldine – pastoral care co-ordinator, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interview (with Lim Guat Lim): 13 minutes.

Sr Geraldine speaks of her links with Singapore and Ireland and how, as a member of the Franciscan Missionaries of Divine Motherhood, her role is to co-ordinate the pastoral care provision at Mount Miriam Hospital. Provision is made for all patients, irrespective of religion or race. Each patient’s faith is respected and no attempt is made to convert patients to Catholicism. Collaborative links have been established with Buddhist and Muslin leaders, as well as with Christians from Protestant traditions. For Catholics, Mass is said daily and there is a priest on hand for confession and anointing. Sisters are also available and prepared to spend time with anyone who needs their company. Penang’s population is predominantly Buddhist and Sr Geraldine tells how the department’s resources include a collection of Buddhist chants to develop a sense of peaceful preparation for the end of life.

The Revd John Yeo – pastor, Christ Church Likas, Kota Kinabalu: interviewed by Michael Wright, 3 December 2006. Length of interview: 6 minutes.

John Yeo speaks of the church’s commitment to the community and points to a recently-passed resolution to launch a dedicated social care programme that is a non-preaching, non-religious demonstration of the love of God. This new welfare programme will be diocese wide and available to all, irrespective of race or religion. While the details have still to be worked through, there is support for a hospice programme, possibly modelled on the type developed by the church in Singapore.

Joyce Sumitra Romaya – palliative care nurse, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interviews: (with [1] Penang group and [2] Mount Miriam group): 1 hour 21 minutes.

Although Joyce Sumitra Romayah has only been involved in palliative care since 2005, she says it has become her ‘passion’ and she hopes to be involved for a lengthy period. Mount Miriam sponsored her training visit to Assisi Hospice, Singapore, where she became familiar with inpatient, day and home care. She tells how she begins each day by telephoning her patients and then responding to their needs. Some matters can be dealt with over the telephone; others require a non-urgent visit and occasionally a patient may be seen daily. She is aware of the importance of spiritual care and close links have been established with Mount Miriam’s pastoral care department, where support is available for patients and staff.

Datin Judy Chin – secretary, Perak Palliative Care Society, Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interviews ([1] alone and [2] with Dr Boon): 49 minutes.

Judy Chin tells how a palliative care interest group formed in 1993 and initiated its first workshop the following year. By 1995 the group was registered as a society and met in a variety of locations around the city. More recently, the Society has been based at a bungalow owned by Judy Chin’s in-laws. Although the premises have been loaned to the Society indefinitely she acknowledges that a further move is probable. Judy thinks the success of PPCS lies in the strength of the Society’s committee and the way in which its members have united around a common cause. Most members have been touched by suffering and bring not only a sense of commitment but also compassion. Challenges faced by the Society include access to palliative care training, which is limited. Yet this is balanced by many successes, including strong local support. She hopes one day to see the home care programme supported by an in-patient facility.

Judy Chua – committee member, Perak Palliative Care Society, Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview: 10 minutes.

Judy Chua first became interested in palliative care in New Zealand after she made a donation to Mary Potter Hospice and followed up by becoming a volunteer: a decision that was influenced by her cousin’s previous experience of cancer. When she returned to Ipoh, she joined PPCS and as a trained accountant, was appointed treasurer. After many years service, she relinquished the post to become more involved with patients and has never regretted her change of role. She speaks of the differences between hospice care at Mary Potter and in Ipoh. Despite the challenges faced by PPCS, she itemises many successes: the growth in patient numbers, the service of committee members and the commitment of staff. Her hopes for the future centre on the acquisition of dedicated premises and a full-time doctor.

Kanageswari Naidu – deputy director of nursing, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interviews: (with Mount Miriam group): 27 minutes.

Kanageswari Naidu recalls how an integrated approach to care has been part of the practice at Mount Miriam during the 26 years she has been at the hospital, due in part to the hospital’s foundation, but also to the nature of Malaysia’s multicultural, multifaith society. She tells of the Eastern inhibitions surrounding anything to do with death, but how patients sometimes need to speak about spiritual, social and family issues in the context of leaving this world. The ward containing the PCU is part of Kana’s responsibility and she is sensitive to the developing palliative care services. She speaks of her studies in England, where she learnt more about pain relief and visited Princess Alice Hospice (Esher) and St Peter’s Hospice (Bristol): experiences she values highly in view of the palliative care developments at Mount Miriam.

Dr Koh Wai Keat – president, Perak Palliative Care Society, Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview: 6 minutes.

Koh Wai Keat founded the PCU at Hospital Ipoh when he and Dr Pang convinced the authorities to convert an unused maternity ward to a palliative care facility in 1999. He received palliative care training in Kota Kinabalu with Ranjit Oommen and was appreciative of the strong support given by PPCS, of which he is now president. The original unit opened with six beds. After a visit from the minister of health, however, more support was forthcoming and the unit was extended to accommodate 13 beds in male and female wards. Koh Wai Keat speaks of the government commitment to inpatient units but draws attention to the difficulties caused by a lack of trained staff and a system which allocates medical officers to these units on a rotational basis. In such circumstances, he notes that nurses play a key role by providing continuity and experience.

Dr Lalitha Kanapathi – medical officer, Palliative Care Centre, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interviews (with [1] Andy Wee and [2] the Mount Miriam group): 1 hour 21 minutes.

Lalitha Kanapathi tells how she came to Mount Miriam Hospital in 2005 and helped to initiate the palliative care service, assisted by her studies for the Cardiff diploma in palliative care. Although there is scope for further development, home care is provided across the island of Penang. She tells how the palliative care nurse visits or telephones patients every day whereas she visits once a week, more frequently depending on need. These visits provide an opportunity for family discussions during which a wide-range of issues are brought forward. Patients are referred by consultants in Mount Miriam or other hospitals. Demand for the four beds is high but patients are encouraged to remain at home whenever possible. Lalitha plans to continue her studies in pain management and gradually increase the number of patients in the palliative care programme.

Dr Lee Her Chin – palliative care doctor, Rumah Hospice Pulau Penang: interviewed by Michael Wright, 8 December 2004. Length of interview (Penang group): 54 minutes.
 
Lee Her Chin has obtained a Master’s degree in palliative care from Edith Cowan University (Australia) and welcomes the government’s growing interest and plans for expansion. She considers, however, that palliative care is poorly understood within the medical profession, and the rotation of untrained doctors to palliative care units is not the way to increase expertise. While she considers symptom control to be important, she hopes to see more input into psychological and spiritual care in the future. As a Buddhist, she notes how palliative care resonates with her own spirituality and with the Buddha’s teaching about response to suffering - and this sustains her in her work. Lee Her Chin draws attention to the fear of death within the Chinese community and the effect this has on end of life care. 

Lim Guat Lim – social worker, Mount Miriam Hospital, Penang: interviewed by Michael Wright, 8 December 2006. Length of interview (with Sr Geraldine): 13 minutes.

Lim Guat Lim speaks of her role as social worker at Mount Miriam. Despite the hospital being a not-for-profit organisation, the medical costs for uninsured patients can still be high. So a key part of her work is to offer advice on where to find subsidies and what special support can be provided by the hospital. She explains how patients in receipt of palliative care have a special package of support which includes free medical consultations and subsidised drugs. She works with around thirty patients per month, some of whom she meets on the ward while others just find their way to her door.

Dr Lo Ee Chin – palliative care doctor, Kasih Hospice Care Society: interviewed by Michael Wright, 4 December 2006. Length of interview (with Cheah Hong Char): 1 hour 20 minutes.

Lo Ee Chin tells how activities that were inspired by Buddhist principles led to the establishment of Kasih Hospice Care. She first trained in Ireland and then studied for a diploma in palliative care before working in Singapore with Rosalie Shaw. After returning to Malaysia, she worked for five years with Ednin Hamzah at Hospis Malaysia. She recounts how Kasih hospice developed from a commitment to hospital visiting, followed later by the establishment of a home care service. She acknowledges the misunderstandings around hospice care and the problems caused by late referrals, but stresses the hospice helps every patient, no matter when the referral occurs. As a doctor with Kasih Hospice Care, Lo Ee Chin appreciates the balance between the demands of patient care and opportunities to explore spiritual issues, an issue that is important to her. She recognises the spiritual gifts of her colleagues and the ways in which spiritual care can complement physical care by helping a patient become peaceful and comfortable.

Loi Fui Fen – palliative care nurse, Hospis Malaysia, Kuala Lumpur:  interviewed by Michael Wright, 6 December 2006. Length of interview (with Sharon Victoria Dabi  and Emily Yap Lee Peng): 52 minutes.

Loi Fui Fen joined the staff of Hospis Malaysia after working at a geriatric centre where she was a colleague of Sharon Victoria Dabi, Hospis Malaysia’s nurse manager. After becoming sensitised to the nature of hospice care, she eventually thought that she too could become a palliative care nurse. She speaks of the demands made upon hospice nurses and how, after two years in post, she has gained a sense of confidence based on her intensive training and practical experience. She tells how she has come to love her work and values the time she is able to spend with patients and their families, supporting them at what she considers to be a crucial time in their lives. She acknowledges her initial apprehension, but how, due to the culture of the hospice, she has come to expect more of herself, and wonders whether one day she will be able to embark on a medical course. Be that as it may, she says her dream is to return to the village where she grew up and set up a palliative care service for everyone who needs it.

Ven Lyan Shih – chairman, Pure Lotus Hospice of Compassion, Penang: interviewed by Michael Wright, 8 December 2006. Length of interview: 46 minutes.

Lyan Shih explains how the hospice began in a rented bungalow in 2001 but after a fundraising campaign, land was sought and new-build premises opened in 2003. The hospice is a Buddhist foundation, yet needy people are accepted irrespective of religion or race. The hospice mostly caters for Malaysian nationals with end-stage cancer and referrals usually come from hospitals. Once accepted, patients can stay for the rest of their life. Accommodation, subsistence and all except special medications are provided free of charge, with funds supplied mainly by the Buddhist community. Morphine is available and the close proximity of the government hospital is helpful in times of need. Lyan Shih recalls her background in nursing and tells how her skills have been enhanced by her Buddhist perspective. She has a daily presence at the hospice and plays an important role in the patients’ spiritual preparation for death - including the activity of ‘letting go’, a notion central to the organisation’s ethos. Lyan Shih is working towards a second facility that will cater for HIV infected mothers and their children.

‘Lynn’ Chew Siew Lean – administration and finance officer, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 5 December 2006. Length of interview: 5 minutes.

Ten years ago, Lynn was semi-retired but agreed to join Hospis Malaysia when the then fundraising manager needed more help - and almost immediately moved into a full-time post. She likes meeting people, and enjoys the variety of tasks which her role demands, whether it be welcoming visitors or checking out equipment. Frequently, she is the first contact that a patient or family member has with Hospis Malaysia and she speaks of the need to remain calm and reassuring when people telephone the hospice in distress.

Dr Mary Reddy – retired hospital director responsible for training, Hospice Klang, Klang: interviewed by Michael Wright, 4 December 2006. Length of interview (Klang group): 63 minutes.

Mary Reddy explains how she became interested in palliative care when the government publicised the idea of PCUs for its major hospitals. At that time she worked in a district hospital and, although such institutions were not a government priority, she decided to find our more. When the training she sought at Kota Kinabalu failed to materialise, she took a palliative care course at Penang with Devaraj. After her move to Klang she supported the hospice established under Phylis Rani Singam’s leadership and took forward the idea of a PCU, which has yet to come to fruition. Now retired, Mary Reddy has a continuing interest and became more involved with Hospice Klang at the request of Michael Yoong, a former classmate.

Dr Michael Yoong – chairman, Patient Care Committee and Awareness and Fundraising Committee, Hospice Klang, Klang: interviewed by Michael Wright, 4 December 2006. Length of interview (Klang group): 63 minutes.

After working as a GP for 33 years, Michael Yoong spends one third of his time working for Hospice Klang, having been introduced to the hospice ideal by a former colleague who had spent time in England. He first gained experience at a neighbouring hospice and since joining Hospice Klang he has become involved in fundraising, addressed issues around the organisation’s structure and examined the role of volunteers: this is addition to home visits. He calls for more doctors to support the hospice movement and highlights their role in reducing patient suffering - thereby supporting the whole family. He outlines the contribution of religious groups and notes that members of the patient’s faith group are often involved with the family long before the hospice. His hopes for the future are clear: that within three years the hospice will have increased its current staff of one doctor and one nurse to three doctors and three nurses.

Misah Paidy – nurse co-ordinator, Palliative Care Association Kota Kinabalu: interviewed by Michael Wright, 4 December 2006. Length of interview: 6 minutes.

Misah Paidy speaks about her previous experience with the flying doctor section of the Sabah Foundation, an organisation that provides free health care for indigenous people in the remote areas of the state of Sabah. She joined the PCA in 2004 and, despite 20 years experience as a staff nurse, still feels she is learning about palliative care. She speaks of the 32 patients in the home care programme and how referrals come from the hospital’s PCU. Part of her role is to visit discharged patients and make an initial assessment, then relay the information back to the unit. Thereafter, close communication is maintained between the PCU and the home care service.

Dr Molly Mathew Oommen – consultant ophthalmologist and volunteer, Palliative Care Association Kota Kinabalu: interviewed by Michael Wright, 3 December 2006. Length of interview: 60 minutes.

Molly Mathew Oommen tells how her family located from India to Tanzania before she was born; of her life on an African farm, then boarding school in India before studying ophthalmology at the Christian Medical College in Vellore, where she met her future husband, Ranjit. Like Ranjit, she developed an interest in palliative care after their move to Kota Kinabalu and recalls the challenges of blending a government sponsored PCU with a community based NGO, funded by charitable donations and special events. She speaks of the importance of psychosocial and spiritual care and draws special attention to the role of two artists who, in their separate ways made significant contributions to the experience of patients. As palliative care became established, she notes the assistance of international experts who visited Kota Kinabalu and made valuable contributions to service development and the education programme. Special attention is drawn to the KK model, which relies on the health service to provide facilities for respite and emergency symptom control but at the same time, draws on the strengths of the local community through its volunteers and general commitment to care. She explains, ‘The patient’s [relationship to care] is like a three-legged stool, with the tripod made up of a doctor, a nurse and a volunteer. Take one leg away and it’s lopsided; it needs all three.’

Morna Chua Wui Lang – president, Palliative Care Association, Kota Kinabalu: interviewed by Michael Wright, 3 and 4 December 2006. Total length of interviews: 20 minutes.

Morna Chua has been involved in palliative care since 1995 when she volunteered to support the work of the PCU at Kota Kinabalu’s Queen Elizabeth Hospital; she then became involved in the home care programme after it was founded in 1996 and later assumed responsibility for the service. She recalls the challenge of raising funds, the impact made by a series of road shows and the benefits of now having a two-bungalow centre that houses the administration suite and day centre. She speaks of the need to focus on the patient, of the importance not only of symptom control, but of having time to listen and share experiences, and of the need to make palliative care more accessible to the people of Malaysia. She sees the relationship between the government-sponsored PCU and the NGO-related home care service as being mutually beneficial, but highlights the need for education and training. Finally, Morna turns to the problem of truth-telling and details the importance of family conferences in addressing this issue.

Dr Norchaya Talib – professor, Faculty of Law, University of Malaya: interviewed by Michael Wright, 5 December 2006: length of interview (Carcosa group): 1 hour 24 minutes.

Norchaya Talib reflects on the legal status of medical practice in Malaysia in relation to end of life issues. She highlights the debate surrounding withdrawal of treatment and notes that in Malaysia, no doctor has been charged with any crime in cases where a patient has died after treatment was withdrawn.  Turning the alternative therapies – which is an issue in Malaysia: a country where patients often move between government hospitals and private medicine but also seek cures from traditional healers - she recalls that no case has arisen from a practitioner using alternative medicine. This contrasts with a 1996 case in which a medical practitioner who used non-recognised procedures for treating an eye condition was successfully prosecuted for operating outside of the Medical Act under which he was registered, and the standards recognised by modern medicine. While the question of euthanasia attracts widespread interest, there is no provision for it within Malaysian law, and any attempt to implement such a practice could well be construed as murder.

Dr Ong Eng Eng – medical officer, Palliative Care Unit, Hospital Pulau Penang: interviewed by Michael Wright ([1] Penang group and [2] alone), 8 December 2004. Combined length of interviews: 66 minutes.

Ong Eng Eng recalls how, after qualifying as a doctor, she was about to enter a mainstream branch of medicine when she was moved by the plight of hospital patients who were first being overlooked, then sent home without treatment because ‘nothing more could be done’ for them. As a doctor, she wanted to do more. In the 6-bedded hospital unit where she now works, she focuses on each individual, getting to know both the patients and family members who stay alongside them. There are challenges: palliative care is both time-consuming and demanding. Yet she thinks more patients would be helped by being referred to the unit, and at an earlier stage. So she attempts to raise the awareness of palliative care, and its benefits, amongst her colleagues. She speaks about patients who were sent to the unit as a last resort but who, once their symptoms were controlled, were able to return home feeling much better, even though their life expectancy was short: an outcome she regards as a success.

Dr Oo Loo Chan – ­­medical director, Charis Hospice: interviewed by Michael Wright, 8 December 2004. Length of interview (Penang group): 54 minutes.

Oo Loo Chan, who holds a diploma in palliative care from Edith Cowan University (Australia), speaks of the founding of Charis Hospice in 2004 and of the challenges involved: the low public awareness of hospice care, funding issues, the recruitment and training of personnel, and the position of hospice outside of the Malaysian health system. She considers, however, that the hospice approach, with its emphasis on the patient and an accompanying gift of time - underpinned by compassion and professional skill - is a source of personal satisfaction. Her view of success lies in the opportunity to care for patients and their families, and to begin to change the mindset of some members of the medical profession about the value of palliative care.

Dr Oo Khaik Cheang – secretary, Penang Hospice Society and the Malaysian Hospice Council: interviewed by Michael Wright, 8 December 2006 ([1] alone, and [2] Penang group). Combined length of interviews:  71 minutes.

Oo Khaik Cheang describes how he moved to Penang when he retired from his post as Professor of Biochemistry at the University of Malaya (KL), whereupon he joined the local Nature Society and Heritage Trust. While he regards these as worthy societies he became more interested in hospice care, being drawn to the personal development inherent in the spiritual  care of patients: a dimension that was new to him. He recalls a time when he supported a bereaved girl who was fearful about her future after the death of her father, and how pleased he was to receive a telephone call from her after three years telling him she had won a place in medical school: a development that made his support seem worthwhile. He speaks of the important roles played by the NCSM and the MHC in relation to service development and advocacy and he is pleased that the providers of palliative care in Penang have enjoyed closer collaboration since a joint ‘Voices for Hospices’ event in 2003.

‘Pauline’ Ong Poo Ling – pharmacist: Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 7 December 2006. Length of interview: 22 minutes.

Pauline has been the pharmacist at Hospis Malaysia since June 2006 after previously working for six years in a hospital setting. She explains the laws governing dangerous drugs in Malaysia, the need for tight security and the importance of accurate record-keeping. She details the ways in which drugs are securely stored at Hospis Malaysia and the procedures governing how they are dispensed. Pauline then outlines the drugs that are available to hospice patients and reflects on the different approaches to treatments in her hospital and hospice experience. She states that the role of pharmacist is important within the hospice and feels she makes a worthwhile contribution to the work of the orgnisation.

Peter Loh Chee Khen– vice chair of Hospis Malaysia: interviewed by Michael Wright, 7 December 2004. Length of interview: 20 minutes.

Peter Loh relates how he became involved with Hospis Malaysia after a work colleague encouraged him to attend a council meeting in 1996 and lend a hand. At that time he knew little about hospice care. Ednin Hamzah had been in post for around a year and it was time to build a new team to deliver a broader vision. In this scenario his experience in business and the corporate world added a different perspective. He comments on the challenge of awareness-raising among the ethnic groups in Malaysian society and the possibility of finding quality of life after a life-limiting diagnosis. He reflects upon the development of Hospis Malaysia and the increasing support that comes from individual and corporate donors. Peter Loh then explains the role of the council - developing a service based on universal rather than Christian principles - and the dual role of Hospis Malaysia: to care for the sick and improve the professionalism of the work-force.

Phylis Rani Singam - retired matron, now responsible for medical support, Hospis Klang, Kuala Lumpur: interviewed by Michael Wright, 4 December 2006. Length of interview (Klang group): 63 minutes.

Phylis Rani Singam tells how Hospis Klang was founded after the government of Malaysia began to promote PCUs. In the government hospital of Klang at that time, lack of space meant there was no immediate prospect of a unit. Supported by Mary Reddy, the then hospital director, Phylis promoted a campaign that led to the hospice being founded as an NGO the following year. She tells how she referred patients to the hospital whenever the need arose and speaks of the good will that was forthcoming. She highlights the challenges now being faced: the financial constraints; problems of cover from volunteer health professionals; the continuing lack of space for a hospital PCU; and the distress of relatives who need instant help during the day or night. She also highlights the successes: progressing from one patient in 1996 to 90 in 2006; the commitment of spiritual volunteers from across the faith groups; provision of home care service six days a week; and the acquisition of the Hospice Klang building.

Ranjit Kaur – president:  Breast Cancer Welfare Association; the Malaysian Breast Cancer Council; and Reach to Recover International: interviewed by Michael Wright, 5 December 2006: length of interview (Carcosa group) 1 hour 24 minutes.

Ranjit Kaur describes her experience of having cancer in Malaysia, a country in transition from ‘developing’ to ‘developed’ status. She highlights difficulties caused by the absence of a breast screening policy, the lack of any formalised system of end of life care, and a perceived disinterest in such matters on the part of government. She expresses concern for people with life-limiting conditions who are left to seek their own support. Too often, such people resort to the promise of a cure brought about by doubtful alternative therapies, some of which may have harmful effects. Consequently, Ranjit Kaur calls for a government lead to ensure improvements in this area of care. She outlines the peer support provided by Reach to Recovery International and gives examples of the pressing issues: the need for more psychosocial support; better communications skills within the medical profession; and  training in end of life care for both medical students and practising physicians.

Dr Ranjit Mathew Oommen (1) – consultant surgeon and medical advisor to the Palliative Care Association Kota Kinabalu: interviewed by Rosemary Mingins, 12 February 2005. Length of interview: 45 minutes.

Ranjit Mathew Oommen, who holds a diploma in palliative medicine from Cardiff University (Wales), describes how he trained as a surgeon at Vellore’s Christian Medical College (India). Thereafter, he worked in a mission hospital in Kerala before arriving in Borneo in 1987. In a somewhat isolated environment, he looked for support from the international community and supplemented his surgical activity by raising public awareness of cancer and then laying the foundations of a palliative care service. By 1993 much work had been done with the cancer society and in the local community. He recalls how he opened Malaysia’s first palliative care unit at Queen Elizabeth Hospital in 1995 and how this in-patient model was adopted by the Malaysian government. A nationwide consultation took place in 1998 after which a scheme was devised to establish a PCU in each of Malaysia’s general hospitals by 2000. Ranjit speaks about the implications of this decision and how he enhanced the PCU facility by founding a community-based NGO which provided palliative home care. A network was then established between KK’s Queen Elizabeth Hospital and district hospitals throughout Sabah. ‘The idea is that in every district hospital there should be one doctor and one nurse who knows about palliative care so that when the patient goes out into the villages, they are entrusted to somebody.’

Dr Ranjit Mathew Oommen (2) – consultant surgeon and medical advisor to Kota Kinabalu Palliative Care Association: interviewed by Michael Wright, 3 December 2006. Length of interview: 20 minutes.

Ranjit Oommen details the palliative care provision for patients in urban and rural settings in the state of Sabah. Concerning Kota Kinabalu, he outlines the relationship between the PCU at Queen Elizabeth Hospital and the Palliative Care Association’s home care service, and explains how patients move easily between. In rural areas, support is facilitated by close communication between trained staff at the district hospital and specialist support at KK’s regional hospital. Although the inpatient model has been adopted throughout the country – and facilities are in place in government hospitals – he notes that in some areas the lack of palliative care training has resulted in limited provision. This contrasts sharply with initiatives in KK which have included palliative care modules in the school of medicine and placements for medical students.

‘Raymond’ Toa Ben Taik – occupational therapist, Hospis Malaysia, Kuala Lumpur: Interviewed by Michael Wright, 7 December 2006. Length of interview: 15 minutes.

Raymond tells how he has worked in occupational health since 1990 and, after beginning his career in a government hospital, became more interested in community-based work. He spent time in Dubai and on his returned to Malaysia, worked in a private hospital that specialised in geriatrics. Raymond has had a longstanding interest in hospice care and as a member of Hospis Malaysia, now helps patients to live independently and attain the best possible quality of life at home. He itemises the challenges: patient depression; cultural differences; the need for adaptations to home environments; and technological support. He stresses the individuality of each patient and how important it is for family carers and hospice staff to understand the role of occupational therapy in helping to maintain the patient’s active life and sense of fulfilment. In the future, he would welcome the opportunity to speak to government ministers about the balance between hospital and community based care, stressing the need for more domiciliary support.

Rosehayati Ahmed Noordin – general manager, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 5 and 6 December 2006. Total length of interviews: 57 minutes.

Rosehayati Ahmed Noordin speaks of her background as a micro-biologist and how she came to Hospis Malaysia by chance after running a business with her husband, Din. As the Hospice’s first general manager she speaks of the challenges she found in developing the new post; of the ways in which a well functioning organisation can support clinical practice; and of the differences between the hospice’s focus on people and the commercial world’s focus on targets. This is epitomised for her by the landscape of Hospis Malaysia: the importance of the courtyard, fragrant with flowers and equipped with running water to promote feelings of peacefulness and well-being. Yet fundraising is an important part of her role and she tells how she encourages donors to feel a sense of belonging by keeping them informed and involved. Turning to volunteers, she addresses questions of selection and the care that is taken to protect patients from the minority of volunteers who have ulterior motives - such as religious conversion or the selling of ‘cures’– and outlines new plans to provide increased support for volunteers, especially when a patient dies.

Sharon Victoria Dabi – nurse manager, Hospis Malaysia, Kuala Lumpur:  interviewed by Michael Wright, 6 December 2006. Length of interview (with Loi Fui Fen and Emily Yap Lee Peng): 52 minutes.

Sharon Victoria Dabi has worked at Hospis Malaysia since 2003 and recalls how, after previously visiting the hospice and seeing the role of the nurse, it took her two years to make an application. This was mainly due to the wide-ranging responsibilities assumed by hospice nurses and the expectations placed upon them. She tells how members of her team are expected to assess patients, make decisions and regularly up-grade their skills through education and training. Yet she finds the work rewarding, is stimulated by the multidisciplinary approach and enjoys being part of a team which favours open communication and incorporates ‘a human touch’. She describes the weekly de-briefing session recently introduced for her team, and is encouraged by the nurses’ response.

Datin Su Kamal – vice president, Perak Palliative Care Society, Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview: 7 minutes.

Su Kamal trained as a nurse and was invited to join the PPCS to bring a Muslim perspective to the Society. She recalls how, in the early days, there was a strong emotive desire to support the patient but which, if unchecked, could have led to over-servicing and patient dependence. When Rosalie Shaw arranged for her to visit Murdoch Hospice, Perth, she realised the need to deliver a palliative care service that focused on the patient’s primary needs but did not lead to disempowerment: a principle accepted by the Society when she returned to Ipoh. She then turns to fundraising and speaks of the commitment of local people, which she believes is strengthened by the knowledge that all funds are spent on patient care, none on fundraising expenses.

Dr Sylvia McCarthy – ­ deputy medical director, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 6 December 2006. Length of interview: 44 minutes.

Sylvia McCarthy tells how she married, moved to Malaysia and became a lecturer in family medicine at the University of Malaya. When the time came to move on, she moved to Hospis Malaysia, taking with her an interest in communication skills that Ednin Hamzah considered valuable. She recounts how Hospis Malaysia delivers a 24-hour service underpinned by a core team of full-time, well-trained staff. Coverage extends to a 50km radius and referrals come mainly from government and private hospitals, occasionally GPs. She speaks of the challenges posed by patients, who are not only unaware of the role of hospice but who don’t expect their symptoms to be controlled. So they are tempted to buy a magic ‘cure’. In this scenario, word of mouth is important and families who have found hospice to be supportive tell others in need. She considers the education and development of staff to be a major issue, and highlights the strategies which help Hospis Malaysia team members look beyond physical care and become confident in the broader aspects of psychosocial and spiritual care. As patient numbers rise, the recruitment and retention of staff are major issues. Yet despite the difficulties, Sylvia McCartney considers this increase to be an indicator of Hospis Malaysia’s success.

Dr Tan Seng Beng – palliative care doctor, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 7 December 2006. Length of interview: 22minutes.

Tan Seng Beng tells of the high number of patients he saw each day during the six years he worked for the government and how he appreciates the extra time that has become available to him since joining Hospis Malaysia. He welcomes, too, the focus on holistic – especially spiritual – care which the hospice provides. Although Tan Seng Beng considers palliative care may be little known in Kuala Lumpur, he reports how needy people become aware of it by word of mouth; and he frequently hears it said that once the hospice becomes involved, home care patients feel less abandoned. He counts it a privilege that, through his patients, he is already learning how to die, finding the meaning of life therefore while still a young man.

Tengku Norlaila – nurse, Palliative Care Unit, Hospital Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview (with Umi-Kalsom Alias): 7 minutes.

Tengku Norlaila tells how she has worked in the palliative care unite since 2003. Unlike the doctors who provide medical cover on rotation, she has chosen to stay there and develop her palliative care skills to further relieve the suffering of her patients. She places great value on the training course she undertook in Penang with Devaraj, since it not only increased her nursing skills – including the care of wounds and use of the syringe driver - but also taught her how to provide broader support for the patient and family: ‘what we call “loving care”’.

Teoh May May – public relations executive, Hospis Malaysia, Kuala Lumpur: interviewed by Michael Wright, 6 December 2006. Length of interview: 18 minutes.

Teoh May May has a degree in psychology from Adelaide’s University of South Australia. She recalls how she came to Hospis Malaysia after seeing a post in public relations advertised on line. As her mother had been a volunteer, she knew something about hospice care, but nothing quite prepared her for what she found. She is appreciative, therefore, of the gradual way in which she was inducted into the hospice team; how she became aware of hospice care through home visits and telephone work; and how she was carefully supervised as she gradually became more involved. She is proud to belong to an NGO, which for her is emblematic of a special contribution to society – a perception reinforced by the fact that Hospis Malaysia services are free of charge to patients. May May’s responsibilities involve fundraising and creating public awareness of Hospis, so she concludes by recounting details of two successful events: the World Hospice and Palliative Care Day celebrations of 2006 and a treasure hunt that same year.

Umi-Kalsom Alias– nurse, Palliative Care Unit, Hospital Ipoh: interviewed by Michael Wright, 6 December 2006. Length of interview (with Tengku Norlaila): 7 minutes.

Umi-Kalsom Alias recalls the challenges she has faced at Hospital Ipoh PCU since her arrival in July 1999, particularly issues around honesty and truth-telling. Among her priorities is the formation of a good rapport with the patient’s family: a collaborative approach to inspire trust and make the patient more comfortable. With a background in general nursing, she became aware of the special requirements of the palliative care approach so contacted Devaraj in Penang and subsequently embarked on further training. It was these courses which introduced her to the role of listening and communication skills and helped her focus more fully on the wider needs of her patients and their families.

Dr Yeat Choi Ling – medical officer, Palliative Care In-Patient Unit, Ipoh Hospital: interviewed by Michael Wright, 6 December 2006. Length of interview: 7 minutes.

Yeat Choi Ling has spent 18 months as medical officer of the PCU at Ipoh Hospital. In the context of the rotation system, this is unusual but she speaks of having a ‘heart’ for her patients. She recognises the need for education and hopes to secure a place on a palliative care training programme in Australia or Singapore. Yeat highlights the differences between palliative care and other interventions and acknowledges the need to address emotional issues, which can be demanding for the doctor. She draws attention to the ethics of palliative care and the importance of communication with the patient and relatives. Despite the seriousness of the patient’s condition, she gains satisfaction when pain is relieved and quality of life improves.

Prof Yip Cheng Har - consultant surgeon, Department of Surgery, University of Malaysia Medical Centre, Kuala Lumpur: interviewed by Michael Wright, 5 December 2006. Length of interview (with Sr Amerah and Dr Sylvia McCarthy): 43 minutes.

Yip Cheng Har tells how she became interested in palliative care as a result of the needs of her patients, many of whom present late, when their disease is far advanced and curative treatment is inappropriate. She outlines her plans for upgrading the ward’s ‘palliative corner’ but points to the difficulty of recruiting trained and enthusiastic staff. She refers to her forthcoming sabbatical and how she intends to visit the UK and thereafter develop a more inclusive programme that includes psychosocial care and better pain relief. Turning to cultural issues, she comments on the different approaches to death within local ethnic groups and highlights some of the fears commonly found among the Chinese Taoist and Confucian communities. Such fears present difficulties for doctors since bad news has previously prompted patients to jump from upper level windows. She hopes for a more widespread understanding of palliative care, and up-graded communication skills for health professionals.