Personal perspectives

Temsak Phungrassami takes a national perspective and comments on the balance between Eastern and Western cultures in Thailand’s approach to palliative care:

‘I think the key to success in our country is that we combine the modern palliative care system from Western countries with our own cultural wisdom, especially Buddhist principles. And we try to combine it for our patients and also for ourselves. The palliative care pioneers that I know, in every hospital, usually include the concept of Buddhism in their palliative care; so there’s a connection with spiritual leaders. I have a connection with a monk and I study how Buddhism can help the patient. And it works.’⁵⁷

On an individual level, Thai palliativists explain success in terms of the Buddhist concept of ‘boon’. When kindness is offered to others the giver receives an unasked-for response. ‘It’s not in the physical things,’ says Earmporn Thongkrajai, dean of Khon Kaen University’s Faculty of Nursing ‘but you know it's there. When your heart is full of happiness, it’s a boon’.⁵⁸

This is explained further by paediatric nurse Kesanee Boonyawatanamgkoolk:

‘First, myself: people in our care are very important but we have to love palliative care inside ourselves. You should work from the heart to bring you success in this field. If you don’t love it, it’s not easy to get success.

Every time I’ve worked with children who are suffering, or their parents, I feel I can help them to cope, help them a little bit by giving them support. That gives me a good feeling; yes, I feel happy. Some people say the work is sad, it’s boring, but I don’t feel like that. Some times I feel tired but I can cope with it. When I get back home I go somewhere -like shopping - or to plant or grow things. I talk with my friend and watch television. I think life is natural. Life is beauty.’⁵⁹

Organisational perspectives

Wat Phrabat Nampu AIDS Hospice

With growing financial costs, and the stalling of the temple’s plans to provide care for 1,800 children due to Thailand’s economic collapse in the 1990s, the hospice has faced considerable challenges during the last fifteen years. But the fact that it is still operational - due entirely to charitable donations - and has a waiting list of prospective patients, bears witness to the role it plays within Thai society. On the one hand, its open access helps to reduce the stigmatisation of its residents. On the other hand, the availability of antiretroviral drugs, alongside nursing care and physiotherapy, has improved many patients’ quality of life. One of them says:

‘I was brought here from the North East of Thailand; and when I arrived, I couldn’t move, I couldn’t walk. But now I’m feeling better and I can walk again. My life has changed.’⁶⁰

Camillian Social Centre, Rayong

In view of the violent protests that forced the closure of the Nondaburi centre, the very presence of Sarong’s Camillian Social Centre and the operation of its seven projects is an achievement of no mean proportion. Giovanni Contarin writes:

Our successes result from dedication to a cause and a lot of patience. I really try my best to follow the path of my founder, St. Camillus, and incarnate his charism - with a lot of failures and difficulties. Maybe I can do it because I am not married!! and able to drive people and develop programmes. Then, last but not least - a lot of God's Grace and Holy Spirit.⁶¹

One of many successes is the work of the Eastern Network. This network has been advocating for a better system of care for PLWHA. In particular, it pushed for the Government Pharmaceutical Organisation to manufacture more antiretroviral medicine and for the Ministry of Public Health to include medical treatment of opportunistic infections in PLWHA in its 30 baht insurance scheme. Locally, it helped organise a buyers club to purchase cheaper antiretroviral medicines, with ongoing monitoring and counselling, so that PLWHA would have greater access to medicines and enhanced support.⁶²

Mahavajiralongkorn Cancer Centre

Tanadej Sinthusake highlights the relationship – as yet unique in adult palliative care services in Thailand - between inpatient and domiciliary care provided by the regional cancer centre:

‘If the doctor thinks the cancer is untreatable, the patient is referred to the hospice ward and a nurse at the hospice ward will take care of the patient for about two weeks – until the patient has no pain. During this time the patient’s relatives are taught how to take care of the patient at home. For example, to give food by nasogastric tube, or to clean the tracheostomy tube, or to give meals through the gastrostomy tube; things like this. After this, the patient will be discharged home. If there’s any problem, the patient will be readmitted to the hospice ward until he can return home again. But a nurse is scheduled to support the family and help care for the patient at home until the patient dies.’⁶³

Srinagarind Hospital, Khon Kaen

Issues relating to children’s pain and palliative care have figured prominently in the department of paediatrics at Srinagarind Hospital. Innovative developments have included the introduction of a Child Life programme that includes psychosocial and spiritual support. Hypnosis and other non-pharmacological interventions are employed, where they are considered appropriate, to relieve certain types of pain. Funding has been accessed for a palliative care service that incorporates both inpatient and domiciliary care. Crucially, a coordinator has been appointed and more than 20 personnel trained. Underpinning these initiatives is a body of staff which Srivieng Pairojkul thinks is a major source of success:

‘We have arranged one paediatric ward to be a cancer ward. And the nurses on that ward are very keen, very enthusiastic - so they work well with the children; and because we have that kind of person, the programme keeps going. I think within palliative care, it’s important that you have someone - of course many people - who are in sympathy with the children and their families, and want to sacrifice their time and their work to those families. I think that is the most important factor.’⁶⁴

Siriraj Hospital, Bangkok

Although Siriraj Hospital featured in the drive towards improved pain relief during the 1980s, the establishment of a palliative care committee during the late 1990s did not result in any implemented, hospital-wide policy or changes in practice. So when the second committee was constituted in 2005, there was extra pressure to deliver proposals that would be acceptable and workable. Gavivann Veerakul was granted a year’s sabbatical to act as the committee’s chairperson and provide secretariat facilities. Speaking in 2007, she explains the benefits of her position:

‘This year I have time to think and plan; the palliative care working committee will be set up to facilitate all caregivers to give best practice to their patients. Clinicians never have time, everybody must do their own work, and we have no structure for palliative care. So I review all the knowledge of palliative care. Then, the guidelines will be drawn up and members of the faculty will develop standards of care and quality assurance. So we’re planning for a centre with a coordinator that will support palliative care throughout the whole hospital.’⁶⁵

During the committee’s deliberations, attention was paid to the meaning of palliative care within Thai culture and its relationship to Western perceptions. Essentially, both Eastern and Western approaches to well-being include the alleviation of suffering.⁶⁶ Yet differences occur. In the West, clinicians have tended to focus on the diagnosis and treatment of disease; in the Buddhist tradition, for over 2,500 years there has been a focus on cultivating exceptional states of mental well-being.⁶⁷ With a worldview that acknowledges ageing and dying as the natural process of life, Buddhism looks with suspicion on medical attitudes that encourage a prolonged, aggressive fight against death, viewed as the ultimate failure of medicine.

Although the holistic approach of palliative care is distanced from such practices, Sumalee Nimmannit, the hospital’s retired Professor of Medicine, counselled that palliative care at Siriraj Hospital should build on - and be in sympathy with - Thai culture, incorporate its spiritual wisdom, and be part of the undergraduate curriculum for all medical students.⁶⁸

‘I don’t think that a palliative care institute or a palliative care ward will help. Every ward has to know how to do palliative care. And although some palliative care specialists will become consultants, every physician has to know the concept and have the heart for palliative care for this thing to work - because everybody in the hospital already needs palliative care. Who doesn’t need it? So I emphasise that it has to be taught at undergraduate level and also in continuing medical education. For this lies at the heart of being a physician: to relieve suffering and improve the quality of life. So every doctor has to do this. This is your job. This is your profession. It’s not just for the palliative care physician; it’s every physician’s job to relieve suffering and improve quality of life.’⁶⁹

Sumalee’s opinions are influenced by two personal perspectives: that of the doctor and that of a cancer patient. In her lived experience, palliative care was a blend of medicine and meditation, symptom control and spiritual transcendence. Each played an important part. Despite Sumalee’s deteriorating condition, she maintained her commitment to palliative care and contributed to the debate until the day of her death in September 2007. Two weeks later, the hospital organised the ‘Siriraj Palliative Care Day’ which was dedicated to Sumalee; appropriately, it coincided with the World Hospice and Palliative Care Day. Twenty four hours previously, the hospital had accepted the Palliative Care Committee’s recommended policy and implementation plan: in essence, a hospital-wide service delivered by departments and wards, supported by a newly-instituted palliative care unit.

Songklanagarind Hospital, Hat Yai

In the ten years since Ian Maddocks ran the first workshop at Songklanagarind Hospital in 1997, palliative care activities have steadily gathered momentum. The commitment to translate and distribute an abbreviated version of the Maddocks guide to palliative care (1998) signalled a new dimension to the care of the dying in Thailand. By 1999 The Songklanagarind Palliative Care Committee was engaged in hospital-wide discussions and a succession of training courses raised awareness of the ways in which care at the end of life could be enhanced.

The opening of the palliative care unit in 2003, staffed by a full-time nurse, raised the profile of palliative care – which was further lifted when the first national conference was held in Hat Yai the following year. That same year (2004) palliative care was incorporated into undergraduate medical education at the Prince of Songkla University Medical School. Crucially, the idea of a dedicated ward was rejected in favour of hospital-wide provision supported by a palliative care unit. Temsak Phungrassami:

‘I think the palliative care approach is becoming ‘a common issue’ in our hospital. Departments and wards set up their own palliative care teams to take care of their patients through a range of styles and activities - including conferences, quality rounds, workshops, and guideline development. We're happy with this variety and we encourage departments to participate in the knowledge sharing-sessions that we organise for them.’⁷⁰