The relationship between life and death has interested the Buddhist population of the country that became known as Thailand for centuries. Yet the roots of Thailand’s modern hospice-palliative care movement can be traced back to the 1980s and the growing interest in pain relief, led mainly by anaesthesiologists (Table 6). Contacts between Thai activists and international pain experts created added impetus and, as advocacy increased, morphine syrup and tablets became available for hospital-based treatment by the end of that decade. Significantly, the 1990s began with the formation of the Thai Association for the Study of Pain: an organisation that later became the Thailand Chapter of the International Association for the Study of Pain.

Table 6 Time line of hospice-palliative care developments

Developments in the 1990s occurred in both government facilities and community groups, driven particularly by the urgent need to care for people living with HIV and AIDS. Among the faith-based organisations that founded hospice services was the Buddhist temple known as Wat Phrabat Nampu (near the city of Lop Buri), and the Bangkok-based Camillian (Christian) Missionaries who later established the Camillian Social Centre in Rayong province.

In the cancer network, Staporn Leelanuntakit set the lead in 1996 when he established a palliative care programme at the National Cancer Centre in Bangkok, an innovation that was replicated at the regional Mahavajiralongkorn Cancer Centre under Tanadej Sinthusake two years later. That same year, 1998, Temsak Phungrassami spent a month at Daw House Hospice in Australia and on his return, set in train the palliative care developments at Prince of Songkla University and Songklanagarind Hospital, Hat Yai. Then, in the early years of the new millennium, interest grew in the university hospitals of Khon Kaen and Bangkok.

Importantly, the 30 baht insurance scheme of 2001 made health care cheaper and more accessible, and morphine consumption increased substantially in the following years. Palliative care elements began to be incorporated into nursing and medical school curricula and palliative/ end of life care committees in Chulalongkorn and Siriraj hospitals were charged with devising and implementing hospital-wide palliative care provision.

By 2007, government health legislation had acknowledged the right to die without recourse to cardio-pulmonary resuscitation. A postgraduate palliative care certificate/ diploma course had been introduced by APHN in partnership with Flinders University. The national Hospice Foundation of Thailand had been established, and a palliative care service had opened at Wattanosoth hospital with a remit covering end of life care across the Bangkok Hospital Medical Centre facilities.

Wat Phrabat Nampu AIDS Hospice

In 1992, when the Buddhist monk Chao Khun Phra Udom Prachatorn founded a small hospice Thammarug Niwaet (The Place of True Protection) at the Temple of Wat Phrabat Nampu, it was hardly envisaged that the unit would grow into an extensive 400 bed facility.³⁷ Fifteen years later, the provision includes:

• An inpatient unit with health care staff.
• Male and female accommodation for single people with AIDS who have a measure of independence.
• Chalet style accommodation for family groups where individual members have AIDS.
• Facilities for HIV infected children and children with AIDS.
• Shelter for the elderly left without support after their family has died from AIDS.

Pongparadee Chaudakshetrin highlights the links between Thailand’s temples and their local communities:

‘In ancient times people believed if they built a temple it will be linked to their life, so most of the rich people built a temple. The temple then has monks to care for it and it serves as the place where people get together in the community. When the government wanted to spread education to every place, they saw that temples were a place of learning; children and young people go to the temple and learn from the monks. Then, if the government was able to help, it built a school in the same area, or even in the temple.

‘So in the poor places like the North East, where people are very poor and can’t get help, they just go to the temple. Then it’s the duty of the monks to go walking [for food] and people in the community will feed them. After they collect the food, the monks feed all the people in the temple. So this how the poor people stay alive in those areas - because the temple feeds people who are poor.’³⁸

Given the support of the monks, and the high status of each community’s temple, it is not surprising that people turn to the Wat in time of need - and debilitating sickness is no exception. Although the government provides a minimum level of support for PLWHA under the 30 Baht scheme, a combination of fear, stigmatisation and the inability to cope results in people with HIV and AIDS arriving at the temple gate. Chalermphol Pholmuk, secretary-general of the Dharmarak Foundation considers that in Thai society, AIDS is like something swept under the rug, but which persists and never goes away:

‘If AIDS sufferers have money, or their relatives do, they can receive good treatment at a private hospital. Once the money is exhausted, or nearly exhausted, their kin will transfer them to a government hospital. However, they are almost always rejected and told they must receive treatment at home because there are no available beds.’³⁹

If family members are unable to provide care, Wat Phrabat Nampu is the last resort. In many cases, families take their relatives with AIDS to the temple and formally place them into the monks’ care; others are left outside the gate at night or simply dropped on to the street until they are found by the temple’s ambulance.

Wat Phrabat Nampu’s inpatient facility is managed by Nurse Vilaiwan Khantiwong, a member of the core team that includes four nurse aids, a counsellor and three housekeepers; spiritual support is provided by the monks. Vilaiwan speaks of how she came to the hospice:

‘I’m from the north eastern part of Thailand and I was introduced to this kind of work at nursing school. I came for an interview and I received funds from the founder of the temple himself to learn how to take care of these patients. I also trained for two months in a patient unit specialising in end of life care in Khon Kaen. I have been here for eight years and do the best I can for people who have no-one else to take care of them. Also I feel happy when people who cannot do anything [have antiretroviral drugs and] come back to life.’ ⁴⁰

No secret is made of the temple’s purpose or the condition of its residents. Advertised as the ‘AIDS Hospice’ the facility opens its doors to visitors each day from 10 am to 6 pm. Contacts between the temple’s residents, ‘hospitalised’ patients and members of the community is actively encouraged. Visitors who make their way to the Wat find a well structured organisation: volunteers provide a range of skills; children play, residents who are fit enough look after the gardens and buildings. Meanwhile, the small bags of each deceased person’s cremated remains, neatly piled around a statue of the Buddha, make a statement about the impermanence of life.

Camillian Social Centre, Rayong

The Camillian missionaries have provided health care to Thailand’s poor since the 1950s. During the 1990s, as the HIV/AIDS epidemic became increasingly evident, the charity began working with PLWHA in Bangkok (1992) and, led by the Catholic priest, Giovanni Contarin, founded the Soon Bantaojai Centre in Nondaburi province. But local opposition was strong and increasingly violent. Giovanni Contarin writes:

At 2am on the 21st of May 1995, a big noise frightened the whole community living on Soi Rewardi 24. A bomb exploded next to our van and my car. A lot of fragments landed in the Centre and into neighbouring houses. Nobody was injured because no-one slept on the ground floors. Hundreds of policemen and investigators came the following day. The bomb was recognized as a military bomb that may have come from the local military camp.

On the evening of 25 August 1995, at 10 pm, we were still working and planning the next day’s activities on the ground floor of the Relief Centre when suddenly four shots were heard and we could listen to the noise of the bullets. A man in dark clothing fired a few bullets in the darkness through our windows. Thank God, the bullets missed all of us. But the incident frightened us and from that day we seriously started to think of moving.⁴¹

Such aggression caused the charity to relocate to Huay Pong in Thailand’s eastern province of Rayong. Appropriately, it was the area where Thailand’s greatest number of PLWHA was to be found. Here, the newly-established Camillian Social Centre (CSC) opened its doors in January 1996 and developed seven projects that include palliative care, child care, HIV prevention education, support for the eastern network of PLWHA, and the provision of scholarships for orphaned children. The centre’s objectives are:

1. To educate the community about HIV/ AIDS and provide its members with the skills to communicate, care for, and support PLWHA.
2. To provide treatment, symptom management, care and support for PLWHA within the Eastern Provinces of Thailand.
3. To care for children with HIV/ AIDS by providing them with medical treatment and education, as well as supporting those orphaned as a result of HIV/ AIDS.
4. To provide a counselling service for PLWHA and to liaise with NGOs in the region and throughout the country.

The centre provides 50 beds for people in need of palliative care. Those admitted are usually poor and rejected, unable to stay with their families or in their communities. They generally have CD4 counts lower than 200 and many of them have tuberculosis or viral meningitis. In addition to treatment and care, the Centre also provides a range of activities designed to improve the patient’s well-being. These include: counselling for patients and relatives; singing and sports; prayer and the development of inter-personal skills; massage, aromatherapy and art therapy.

To ensure the involvement of state agencies, CSC will only accept patients who are referred by hospital-based social workers or those attached to welfare offices. Collaborative links have been formed between the centre and Rayong district and provincial hospitals, where admission is sought for the treatment of patients with opportunistic infections. The Garden of Eden is a sheltered place where stigmatised people who are unable to return to their community may live peacefully as residents (Table 7).

Table 7 Flowchart showing service provision at Camillian Social Centre

From its inception until the end of September 2006, the Camillian Social Centre has supported 1,232 people living with HIV and AIDS. Among these people, 595 have died and 413 have returned to the community.⁴²

Mahavajiralongkorn Cancer Centre

Opened in 1998, Centre director, Tanadej Sinthusake sees the free-standing hospice unit and its related domiciliary care as a natural extension of the Mahavajiralongkorn Cancer Centre provision. Influenced by hospices in Australia and the United States, Tanadej has adapted the US model for use in Thailand. The core team includes a doctor (on rotation for one month), nurses, a social worker and a Buddhist monk. Patients are referred to the hospice by their doctors when they consider this to be the best course of action. But although Tanadej’s facility has been influenced by the US model of hospice care, there are differences too, as he explains:

‘We have a team; we copied it from what we heard in Florida. But I changed some things - such as the bereavement team. In Florida I was told the bereavement team must work with the family for about six months after the patient dies. But I think that in Thailand, we study the sadness of the relatives, of the wife or husband of someone who passes away, and I think that the need for bereavement care is less than six months.

The Thai family is an extended family which lives together with many generations in the one family. So I think that the period of sadness is not so long, unlike a very small family where there are only two people. If one of them passes away, the other one cannot stay well. But in Thailand, I think that the relatives can accept it very well. Bereavement support is necessary, but it’s a Thai programme that’s needed’.⁴³

Patients stay for two weeks in the hospice and during that time their family carers learn how to look after them at home, supported by visits from a nurse. Although morphine for domiciliary care is difficult to access country-wide, the visiting nurse is able to assess the patient’s pain and communicate her opinion to a doctor at the hospice. This means that the patient can be prescribed morphine, with costs covered under the 30 baht universal insurance scheme. Tanadej says:

‘There’s no problem accessing morphine in tablet form; but no injection. If there is a problem with pain, the nurse will consult the doctor at the hospice to release the required dose of the morphine – but tablet and fentanyl patches only.’ ⁴⁴

Tanadej is aware there is some way to go before palliative care becomes accessible to all who need it in Thailand. The Mahavajiralongkorn Hospice, for which he is responsible, is a move in the right direction, with both inpatient and home care provision. Yet he looks to a future where hospice-palliative care provision is generally available, with links from cancer centres and tertiary hospitals to both provincial and district hospitals, and domiciliary care on a national scale:

‘Some people – such as some nurses or doctors - are interested in care at the end of life. But I am interested in the system. I want a system to be established across the country, and a very good one. My interest is to establish hospice care in every province in Thailand. And in the future, if I am going to die, I will register at the hospice near my home and someone will take care of me’.⁴⁵

Songklanagarind Hospital and the Faculty of Medicine,
Prince of Songkla University, Hat Yai

Temsak Phungrassami dates the beginnings of palliative care at Songklanagarind Hospital from the visit of the Australian professor of palliative care, Ian Maddocks, in 1997. This was followed by Temsak’s visit to Flinders the following year and, on his return, the establishment of a palliative care committee (1999) and fledgling service. He recalls:

‘We surveyed patients in the gynaecological ward - asked them about their problems, what they needed - and then developed guidelines for the ward. And we found that we [doctors] were mostly concerned with symptoms below the navel, but the patients were telling us they suffered from other symptoms, such as dry mouth, and that this was their first priority. So we realised that we have to consider the patient’s point of view; and one guideline was to ask the patient what symptom caused them the most suffering.’⁴⁶

Once such an approach was adopted it became clear that time was a factor – and that it took more than one or two individuals to deliver an integrated package of care; there needed also to be a new understanding of teamwork. Temsak Phungrassami:

‘The pilot showed us that we can’t do this with just one nurse; so we have to distribute this responsibility to every person. And it became plain that we needed training, especially in communication skills: how to talk with the patient, how to listen to the patient. Then it became obvious that teamwork was lacking. We have multidisciplinary teams but we visit each patient separately. In the morning the doctor visits, in the afternoon the nurse visits, and in the evening maybe a social worker visits the patient: same topic but different times of day; but it’s boring for the patient to be asked the same questions.

‘So we learned from the pilot project that you have to sit together, talk together and then go to take care of the patient. And what we proposed was to let departments set up their own palliative care teams in the hospital’s many wards – where staff understand the needs of their own patients and situations. Some have grand rounds, others have conferences, maybe a special forum to talk with each other; there are many kinds of activity, and we [the palliative care unit] participate in them.’⁴⁷

One of the areas where palliative care guidelines have been implemented is the neurosurgery ward. Led by Sister Kasinee Phetsri, palliative care-trained staff engage families and patients in discussions and encourage them to make their preferences known as life draws to its close. She explains:

‘One of our main objectives is to focus on the needs of the patient and the family. So we give them the opportunity to participate in decision-making: about issues such as CPR, about whether they wish to stay in hospital or whether they wish to go home. It’s a long process and all done on an individual basis.

‘When the time comes for the decision, a flow chart helps us to see what needs to be done. For example, if the patient stays in hospital, we need to follow the appropriate points and make sure we have the religious books and objects ready. If the patient is going home, he is moved to our ‘second home’ ward where we train the family – for up to 5 days - to care for the patient at home. Then we refer them to their local hospital and, if possible, a nurse will visit the patient at home. It’s all done on an individual basis.’⁴⁸

The hospital-based palliative care unit was established in 2003 and is staffed by Sunee Niyomdacha, known as ‘Yae’. After growing up in the south of Thailand, Yae trained as a nurse in the eastern province of Chonburi but thereafter moved south and has worked at Songklanagarind Hospital ever since. As a Muslim, she outlines her Islamic perspective on death:

‘Sometimes I help on the ward and talk to patients who are suffering, especially Muslim patients, because I too am a Muslim. For a Muslim patient, death is not bad because it means going to God, and it’s a pleasure to go to God: that’s a good thing. Sometimes, when we are dying, we suffer, and that’s a great test. But for dying Muslims, decision-making is easy when they know the end of life is near. They want to go home, go round their villages and prepare everything before going to God. Yes, it’s an easy decision for a Muslim. But it’s important he knows; he must have that information.’⁴⁹

Palliative care is now incorporated into Songklanagarind Hospital’s provision on gynaecological, paediatric and surgical wards but Temsak looks forward to a time when the hospital network expands to include care in the community:

‘In rural areas the deaths occur at home. So I foresee that a home care system has to be established in every community hospital. There is a network between tertiary hospitals like us and hospitals in the community, so we can connect and plan together. We send patients to the community hospital and people from there provide a home care programme in the area. It’s not about a stand-alone hospice because it’s not our culture to separate things out in that way. We have to develop a palliative care system in the hospital, then network between big hospitals and small hospitals, and then develop a home care programme in the local area.’⁵⁰

Krishna Suvaranbhumi is a lecturer in family medicine at the Prince of Songkla University. Concerned about the lack of home based care, he is attempting to influence the quality of end of life care in the community through the training of family doctors and the development of ‘inter-professional education’ among local health care providers. He has also formed a groundbreaking network of home care coordinators. Krishna Suvaranbhumi:

‘The unique thing about my specialty is the provision of home care. So my vision is to include palliative care in home care practice. So I try to teach home care practitioners how to provide end of life care for the patient in the community. Also, we have a group of doctors and community health care providers that has developed a network. We work together and meet about once a month to discuss this issue; and we try to promote what we call ‘inter professional education’ so that we can learn from different disciplines.

‘We have developed a pilot project in the area surrounding the university and we are trying to expand the network. Right now we have a coordinator in every one of the ten districts in Songkla province; and in every district we have a home care coordinator. So if a patient is discharged from hospital we have a contact and can send a letter saying we have someone that needs home care. I plan to evaluate the project write it up as a research article so we can disseminate our findings and expand our ideas.’⁵¹

Srinagarind Hospital, Khon Kaen

It was in 2005 that the paediatric pulmonologist, Srivieng Pairojkul, achieved her goal of opening a palliative care service at Srinagarind Hospital: an initiative that aimed to provide her patients with a better quality of life but which was also influenced by her experience of a friend’s painful death from cancer. Srivieng’s first step was to find out more about palliative care.

‘The first workshop I joined was, I think, in Hat Yai three or four years ago. As I became more interested I read a lot about it and studied palliative care in text books. Also, I had the chance to visit Rosalie [Shaw] in Singapore. We had joined the hypnosis conference held in Singapore so we visited her hospital and we also visited several hospice care centres in Singapore.’⁵²

At this point nurse Kesanee Boonyawatanamgkoolk spent four months at Minneapolis-St Paul (US) and during this time, became familiar with both palliative care and the Child Life programme.

‘I worked with a Child Life specialist, with nurses in oncology and in the hospice, with the bereavement co-ordinator and the fundraising department as well as with doctors, nurses, psychologists and the massage therapist. As I spent a lot of time with them, I know all about the way they work together. So I brought a lot of material from there to share with our team: how to work together, and how we can establish and sustain a programme. I talked with Doctor Srivieng and members of the team and presented everything I had seen and learned.’⁵³

At that time, no palliative care service had been established at Srinagarind, but a palliative care committee was already in place and despite the absence of any guidelines, it proved to be a point of reference, especially when seeking funds. Education was essential and Srivieng made a successful bid to the Thailand Research Fund to train nurses in pain assessment, treatment and palliative care. Srivieng Pairojkul:

‘We reviewed our nurse capacity on paediatric wards and in the out-patient department. We gathered several nurses together, had some meetings and, with the money we had, we set up training programmes. So the workshops began - and now nurses know what palliative care is and what its elements are. They also know how to assess pain. Our policy is that each ward provides beds for hospice care because patients sometimes stay for two or three months in situations where they can’t go back home. Each ward needs to have two nurses who know palliative care well, and they will provide the care and educate other nurses on the ward. But they also need a palliative care coordinator because you need to have a pain team, and this includes the pharmacist and social worker. In the future, we intend to establish hospital guidelines.’⁵⁴

Wherever possible, the paediatric palliative care service at Srinagarind Hospital includes home visits, although these are constrained by the distance between the hospital and the patient’s home. Srivieng:

‘We try to do home visits, but some of our children live three or four hundred kilometres from here and it’s difficult for us to travel to them without support from the hospital; but we have some support from our proposal and that pays for gasoline. So for patients whose homes are far away we conduct a home visit to see what their needs are and whether they are being served locally. But if the children are in the vicinity of Khon Kaen province we’re able to conduct several visits; and if they live very near, say up to 40 kilometres from here, we can maybe visit every two weeks.’⁵⁵

The project’s current funding is for a twelve month period and Srivieng acknowledges that the service is in its early stages. Yet she detects a growing, country-wide interest in palliative care and remains optimistic about the future:

‘Palliative care has become an important issue. Most hospitals in Thailand realise that palliative care is a ‘must’ that the hospital needs to have and the hospital administrator here also realises it’s important. So now we are setting a programme for the whole hospital, but at the moment it’s only just beginning.’⁵⁶

Wattanosoth Hospital, Bangkok

The palliative care unit at Wattanosoth Hospital, established in 2007 under the leadership of Laksamee Chanvej, indicates how palliative care in Thailand is coming into sharper focus in the context of a private facility. Here, issues relating to policy and the composition of an interdisciplinary team have been considered from the outset. Laksamee Chanvej writes:

The palliative care unit is in the process of establishing the policy for caring for patients with life limiting illnesses in [the hospitals of] Bangkok Medical Centre and services are increasing each day. Presently, cancer patients who have distressing issues and specific needs are referred to the unit on both an inpatient and outpatient basis.

My palliative care team consists of a palliative care nurse, a pain nurse, pain doctor, oncologist, radiotherapist, physiotherapist, psychiatrist, clinical psychologist, physiotherapist, dietician, a doctor who is interested in spirituality and spiritual beliefs, and critical care ward nurses. The service is provided by an interdisciplinary team which takes care of pain and symptom management and collaborates with other specialists when specific needs arise. Family and social issues are identified and included in the care plan.

Supportive care is provided regularly in the hospital. For example: ‘The Buddhist Way To Give Mercy’ is offered on the ward every Thursday; and the ‘Think Positive Club’, designed for patients and families, includes a meditation course and music therapy. A weekly education programme is due to begin in January 2008 which will focus on items such as nutrition, pain, symptom management and chemotherapy.