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Palliative care in Thailand Panita Krongyuth, Cathy Campbell, Pimpan Silpasuwan

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues. Key words: Thailand l Palliative care l Access l Capacity l Education l Patient care This article has been subject to double-blind peer review.

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Panita Krongyuth MSN, RN, Public Health Nursing Doctoral Student, Mahidol University Bangkok, Thailand; Cathy L Campbell, Associate Professor, University of Virginia, Charlottesville,VA, USA; Pimpan Silpasuwan, Department of Public Health Nursing, Faculty of Public Health, Mahidol University, Bangkok, Thailand Correspondence to: Cathy Campbell [email protected]

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alliative care is an interprofessional model of care used to guide and support patients and their families in their physical, psychosocial and spiritual requirements over the trajectory of a life-threatening illness, from diagnosis to death (Walsh et al, 2011; National Quality Forum (NQF), 2012; Armstrong et al, 2013; World Health Organization (WHO), 2014). At the end of life, palliative care is delivered not only at the health professional’s surgery, but also in the patient’s place of residence (at home in the community, in an assisted living facility, in correctional facilities and in long-term care). Internationally, guidelines (Badger et al, 2012; US Government, 2014; WHO, 2014) for comprehensive end-of-life care include standards such as: patient and family-centred care, and care delivered by an interprofessional team comprising physicians, nurses, pharmacists, psychosocial support, spiritual care, volunteers, pharmacological and non-pharmacological modalities to manage physical (Walsh et al, 2011) and emotional symptoms (McMillan et al, 2011). Additionally, access to equipment and supplies for managing care of people with life-limiting illnesses (Badger et al, 2012; US Government, 2014; WHO, 2014) is a notable standard of care. Without access to palliative care at home, patients and families suffer needlessly, an experience what Dame Cicely Saunders (founder

of the modern hospice movement) has described as ‘total pain’—suffering that goes beyond the physical to emotional, psychological and transcendent aspects of a person (Ong, 2005; Doorenbos et al, 2013). This article presents the information that is known about the state of palliative care in Thailand, and provides an overview of the types of palliative care organisations in the country. The authors identify three barriers that limit access to palliative services for people in Thailand and three threats that limit the capacity of providers to deliver palliative care to people with a life-limiting illness. The article concludes with recommendations for clinical practice, research and health policy.

  The state of palliative care   in Thailand Thailand is a country of approximately 64  million people located in South-east Asia. The country includes 76  provinces bordered to the north by Laos and Myanmar (formerly known as Burma), to the east by Laos and Cambodia, to the south by the Gulf of Thailand and Malaysia, and to the west by the Andaman Sea and Myanmar (Central Intelligence Agency (CIA), 2013). Bangkok, the capital city of Thailand and one of its major urban centres of commerce, education and health care, is home to just under 7  million people (CIA, 2013). Some 35% of the population lives in urban areas and it estimated that this will increase by 40% by 2020 (CIA, 2013).

Types of palliative care organisations Wright et al (2010) developed a method used to estimate palliative care activity across the globe. Countries were allocated to one of four categories (Wright et al, 2010): ●● No known palliative care activity ●●Capacity-building activity (i.e. evidence of initiatives to create awareness and prepare health care professionals, policy initiatives, development of new programmes)

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●●Localised palliative care provision (i.e. critical mass of activists, a national hospice organisation, local support, availability of morphine) ●●Palliative care services reaching a state of integration into the health system. Thailand is classified as a nation in category  3, because there is localised palliative care provision at the village, district and provincial levels. Furthermore, the programmes are supported by active community support through volunteering and fundraising, and a system exists for the distribution of opioids, but palliative care has not been fully integrated into the health system (Wright et al, 2010). In Thailand, palliative care is primarily provided by three types of organisations (Wright et al, 2010; Pokpalagon et al, 2012): ●●Faith-based community organisations ●●Governmental facilities under the direction of the Ministry of Public Health (MoPH) (tertiary hospitals) ●●Secular non-governmental organisations (NGOs).

Faith-based organisations

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Faith-based organisations were among the first to provide palliative care and they continue to take the lead in the provision of palliative care. (Wright et al, 2010). The catalyst for the development of palliative care for people with a life-limiting illness in Thailand was the HIV/AIDS epidemic. The first faith-based palliative care organisation opened in 1992 at Pharbat Numpu temple in Lop Puri province. Care was provided by Buddhist monks and volunteers (Matchim and Aud, 2009; Wright et al, 2010). Patients would leave their homes in the surrounding community and receive care in rooms in the temple grounds. Faith-based organisations have laid the foundation for palliative care service delivery in Thailand. Three major challenges weaken these organisations’ ability to deliver palliative care: ●●The limited number of organisations that are able to provide such care ●●Patients must leave their homes to receive the palliative care ●●The leadership of the organisation must consistently devote resources to seek funding for the mission of the organisation through fundraising, private donations and grants. These limitations threaten the viability of faith-based organisations to provide palliative care.

Palliative care in government facilities The Ministry of Public Health (MoPH) provides oversight over the largest number of health-care facilities in the public sector. Currently, the MoPH owns 900 hospitals and 9762 health cen-

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tres that cover more than 90% of Thailand’s districts (MoPH, 2010). The MoPH’s structure is organised by governmental administrative level (village, subdistrict, district and province) and the setting of care (domiciliary-based/home care, contracting units for primary care (CUPs) centres, community hospitals or specialist hospitals). Access to palliative care differs across the three administrative levels and four major settings of care. At the village, sub-district and district administrative levels of care, patients and families have limited access to palliative care services such as symptom management of physical or emotional symptoms. Symptom management is often overlooked. Common physical symptoms that are experienced at the advanced stage of any disease are pain, dyspnoea, fatigue, insomnia, anorexia, nausea and vomiting, constipation, terminal restlessness and cognitive impairment (Artsanthia et al, 2011; Cox-North et al, 2013). Symptom management is challenged by limited numbers of health professionals, gaps in knowledge and skills regarding methodologies to manage symptoms (Grover, 2011; Thongkhamcharoen et al, 2013), and the inconsistent availability of pharmacological and non-pharmacological therapies to manage these symptoms (Wright et al, 2010). Psychosocial support such as bereavement counselling, financial assistance and the identification of community resources are not available at all the village, sub-district and district levels (Wright et al, 2010). When palliative care is provided at hospitals or health centres at the provincial level, the likelihood increases that interventions for symptom management will be available. At this level, Thai people may have access to palliative care in designated units within a tertiary care facility or specialist hospital, through a consult service in the facility, or in a free-standing palliative care facility. One of the first palliative care units in Thailand was a 16-bed palliative care unit started as a demonstration project at Mahavajira­ longlorn Cancer Center (MCC) under the direction of Dr Tanadej Sinthusake in 1998 (Wright et al, 2010). Similar to palliative care provided in faith-based organisations, home-based palliative care is rarely available.

❛ The catalyst for the development of palliative care for people with a life-limiting illness in Thailand was the HIV/AIDS epidemic. ❜

Home-based palliative care As an result of decentralised health-care reform in Thailand in 2001, patients who are discharged or transferred from specialty hospitals or provincial hospitals to community hospitals are now eligible to receive home-based palliative care (Hughes and Leethongdee, 2007) to assure continuity of care as a person moves across settings of care. Home-

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based care is desirable for the following reasons: ●●It is consistent with the Thai value of a strong extended family. Family members and other caregivers are able to participate in care providing significant practical, emotional and spiritual support from diagnosis to end of life (Artsanthia et al, 2011). ●●Patients are able to receive care from within their communities, thereby avoiding financial costs and the physical burden (i.e. symptom exacerbation of pain, nausea or fatigue) for patients and caregivers of travelling to district or provincial hospitals ●●Home-based care models of palliative care are more cost effective than the same care delivered from an acute care setting (Taylor et al, 2007; Abernethy et al, 2011). MCC again spearheaded the move from a focus on facility-based care to home-based palliative care services. The home-based palliative care that was available in the initial project by MCC was provided by an interprofessional team that included nursing, medical care, counselling services, spiritual care, volunteers and medical equipment (Badger et al, 2012; NQF, 2012; Daly and Matzel, 2013; US Government, 2014). In a similar way to the faith-based palliative care programmes, volunteers provide many services, particularly relating to spiritual care. The volunteers at MCC organised activities to support religious practices or beliefs such as chanting, meditating, inviting monks to provide services. A chapel was available for the use of patients and families (Wright et al, 2010; Pokpalagon et al, 2012). Practical support such as providing food or other supplies was also provided. The Ministry of Public Health has strongly supported the dissemination of specialised palliative care services within the country by allowing the care expenses provided in these units to be billed to the National Health Insurance as of 2011. However, services were limited to patients who live within a short distance from the specialty hospital centre. Although reimbursement for treatment outside of the facility or beyond its immediate catchment area is available, it has not been consistent (Hughes and Leethongdee, 2007; Wright et al, 2010). Other provincial hospitals such as Ramathibodi Hospital Faculty of Medicine, Mahidol University, Chulalongkorn Hospital Faculty of Medicine and Culalongkorn University provided home-based palliative care, but they also faced challenges similar those experienced by MCC in their home health project. In summary, while palliative care is available in Thailand, three kinds of accessibility issues have

been noted: too few palliative care providers, limited home-based care and inconsistent insurance reimbursement for home-based care (Peters et al, 2008).

Threats to capacity to provide home-based care Three significant threats to the capacity of health-care providers in Thailand to deliver home-based palliative care have been identified: ●●A lack of an educated palliative care workforce ●●Few professionals who are able to provide emotional and psychosocial support ●●Poor access to opioids outside of health-care facilities. Regarding the first point, professional education in palliative care is not yet fully established (Thongkhamcharoen et al, 2013). In a survey of government hospitals in Thailand, 59% of the respondents reported that they had staff trained in palliative care (no specific disciplines were identified); however, the duration of the training for most of the staff was less than a week (Thongkhamcharoen et al, 2013). Nurses are the largest group of health-care providers, working across settings of care, and have the potential to play an important role in the provision of palliative care. The capacity for these nurses to work within the full scope of their practice in palliative care is diminished because the knowledge, skills and competencies for providing adequate palliative and end-of-life care are insufficient (Phonamonthum and Pimpela, 2008; Ferrell et al, 2013; Namasivayam et al, 2014). Health professionals who want to be trained in palliative care have to travel to other countries in Asia, Australia, the UK or the US to access a suitable course. Although financial support is often available through bursaries, international fellowships (such as the Fulbright) and other sources, health professionals face the challenge of leaving their families and jobs to travel overseas to attend training (Wright et al, 2010; Breaden, 2011; Payne et al, 2012). Secondly, the capacity to provide palliative care in Thailand is decreased since the interprofessional team does not have the expertise to provide culturally appropriate, emotional and psychosocial support to people in the advanced stages of disease and their families who are enrolled in palliative care services. Anxiety, depression (McMillan et al, 2011; Cox-North et al, 2013) and grief (anticipatory and actual) are experienced by people living with a life-limiting illness (Campbell and Campbell, 2013; Peppercorn et al, 2011). Yet emotional support from a social worker, psychologist or mental health nurse prac-

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❛Health professionals who want to be trained in palliative care have to travel to other countries in Asia, Australia, the UK or the US to access a suitable course.❜

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titioner is rarely available in Thailand. The third threat to the ability of health-care providers to provide pain management in palliative care is inconsistent access to opioids. In Thailand, there are structures in place for distribution of morphine, including health policy that allows for access, sale and distribution. The Thai Food and Drug Administration (FDA), National Health Security Office (NHSO) and the Government Pharmaceutical Organization (GPO) have made great contributions to palliative care development in terms of opioid availability and affordable price points. However, issues with access and availability persist. (Thongkham­ charoen et al, 2014). Morphine has been identified as the drug of choice for pain management in palliative care (Wiffen et al, 2013). Many characteristics of morphine make it effective for pain management. For example, a large percentage of people who use the drug are able to obtain effective pain relief, its short half-life, the availability of many routes of administration (oral, intravenous and subcutaneous) and the availability of instant relief and modified-release products (Wiffen et al, 2013). Opioid consumption is described in morphine equivalence units (MEUs) in mg/capita. Globally, the MEU is estimated to be 61.66 mg/capita. Thailand’s MEU of 3.29 mg/capita is the highest within the South East Asia Regional Office (SEARO) reporting region of the WHO. In contrast, the US and the UK (two countries where palliative care is fully integrated into the health system) have MEU consumption rates of 73.67 mg/capita and 56.41 mg/capita, respectively (Pain and Policy Studies Group (PPSG), 2010). MEUs are calculated from data submitted by national governments regarding six opioids (methadone, morphine, pethidine, hydromorphone, oxycodone and fentanyl) distributed legally for medical and scientific purposes, such as use in hospitals or pharmacies. Data are available for countries throughout the world as well as for designated WHO reporting regions (PPSG, 2010). Individual-level data such as patient consumption or prescriber ordering patterns are not reported. Morphine is the second most commonly used opioid (MEU=0.8807 mg/capita) in Thailand. Oral morphine is primarily available at regional hospitals and medical school-affiliated hospitals, but is less likely to be available in community hospitals at the district or sub-district level. The limited availability of opioids means that people with life-limiting illnesses such as advanced cancer may have inadequate pain management (Thongkhamcharoen et al, 2013) in their the community-based or home-based palliative care

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(Thongkhamcharoen et al, 2014). Fewer numbers of people in the community use narcotics for pain management because orders for these medications are initiated at tertiary or specialty hospitals. Given the small number of potential users who are seen in community hospitals and the short half-life of liquid morphine, much of the stored liquid morphine may expire before use (Nagaviroj and Jaturapatporn, 2009; Thongkhamcharoen et al, 2013). Other factors can also negatively impact consistent access to opioids: a limited number of physicians (especially in rural areas), the requirement that a physician signs each order off, limits on the amount of opioids that can be ordered (i.e.  a 1-month supply) and the prohibition of prescription authority by advanced practice nurses (Thongkhamcharoen et al, 2014).

❛Fewer numbers of people in the community use narcotics for pain management because orders for these medications are initiated at tertiary or specialty hospitals.❜

Summary of findings In summary, palliative care is available in Thailand, but significant barriers in terms of access and threats to the capacity to deliver home-based palliative care exist, namely: limited palliative care providers of home-based care, the lack of an educated palliative care workforce, a dearth of emotional care and psychosocial support and the limited availability of opioids, especially morphine, in community-based settings. Capacity-building in the context of palliative care includes developing structures and processes that assure an educated palliative care workforce, emotional and psychosocial care, and consistent access to pharmaceuticals, especially opioids (Grover, 2011; Thongkhamcharoen et al, 2014).

Recommendations for   clinical practice

Limited availability of palliative care providers

The International Observatory of End of Life Care (2011) estimated that there are fewer than 20  palliative care programmes in Thailand, and even fewer with the capacity to provide homebased care. Internationally, there is a renewed emphasis on task-shifting from formal healthcare providers to other types of workers, such as community health workers (CHWs) (van Ginneken et al, 2010; Perry and Zulliger, 2012). Community health workers (CHWs) are nonprofessional, paid staff or volunteers who are trained to meet the needs of a specific patient population. CHWs provide direct care, patient education and connect patients/families in rural communities with needed resources in the outpatient clinic or acute care setting. One strategy for extending the reach of palliative care services

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❛The benefits that CHWs bring to the people and communities they serve (and to the interprofessional team) is their connection to the community at multiple levels.❜

beyond a limited service area is to integrate CHWs into palliative care teams at the district, sub-district or village level. One criticism levelled at the shifting of tasks to CHWs is that, because of low provider-to-patient ratios, CHWs or home-based carers experience role overload and lack the practical, instrumental and emotional support required to provide palliative care (Downing et al, 2010). However, although CHWs are rarely identified as palliative care providers, they often provide care to people with a life-limiting illness, especially countries in sub-saharan Africa that have borne the brunt of the HIV/AIDS pandemic without any training or support. To date, many training programmes exist, but curricula rarely cover palliative care topics or provide support to enhance resilience for CHWs who work with patients and families at the end of life (Dowling et al, 2010; Baernholdt et al, 2012). The benefits that CHWs bring to the people and communities they serve (and to the interprofessional team) is their connection to the community at multiple levels—socially, culturally and, most importantly, experientially (Andrews et al, 2004; Wenzel et al, 2012). Globally, CHWs have met important outcomes such as increased knowledge, compliance with drug therapy and improved coordination of care (for example, for people living with diseases such as tuberculosis (TB), HIV/ AIDS, hypertension and cancer (Andrews et al, 2004; Dick et al, 2007; Wenzel et al, 2012; Ndou et al, 2013). With appropriate training and support, CHWs can help patients with life-limiting illnesses and their families to achieve outcomes such as physical care, symptom management, emotional support and a dignified death (Kongsuwan et al, 2012; Doorenbos et al, 2013).

Training and education of a palliative care workforce Internationally, the lack of an educated palliative care workforce has been identified as a significant barrier to the capacity to deliver palliative care (Grover, 2011; Ferrell et al, 2013). In a report to the United Nations General Assembly, Grover (2011) stated that: ‘There often remains a lack of understanding of palliative care…More comprehensive training on palliative care…is needed.’

Even if other team members such as social workers, clinical psychologists, spiritual care providers and bereavement counsellors are available, they are often not well prepared for their role in palliative care. Additional training for social

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workers, clinical psychologists and spiritual care providers is needed in the assessment, treatment and evaluation of interventions to treat anxiety, depression (McMillan et al, 2011) and grief (anticipatory and after death) in people with a life-limiting illness. Future studies will need to be conducted in non-cancer populations to test the efficacy of interventions. Training in effective communication between patients and families (Walsh et al, 2011), support for end-of-life decision making (Walsh et al, 2011; Campbell and Campbell, 2013; Cox-North et al, 2013) and frameworks for working through ethical dilemmas (Breaden, 2011) by staff, patients and families are also required. An educated workforce has implications for the quality and safety of the care provided (Ferrell et al, 2013). For example, safe, efficacious pain management outcomes occur when physicians and nurses are educated about physiology, pain assessment, pharmacological and non-pharmacological interventions (Walsh et al, 2011). Thai nurses identified pain management as one of the most important nursing interventions to promote dignified dying (Kongsuwan et al, 2012; Doorenbos et al, 2013). As a drug class, opioids have a distinct side-effect profile (sedation, respiratory depression, hypotension and constipation), and their use in pain management is associated with fears and myths, such as fear of addiction and hastening of death if used to manage pain in people with a lifelimiting illness. With appropriate education for clinical staff, expert patient assessment and evaluation, patients with a life-limiting illness and their families can safely use these medications across all settings of care, including the home (Campbell et al, 2012). The same care attention given to pain management should also be given to the management of other physical symptoms, such as (but not limited to) dyspnoea, fatigue, insomnia (Artsanthia et al, 2011; Cox-North et al, 2013), anorexia, nausea and vomiting, constipation, terminal restlesssness and cognitive impairment (Artsanthia et al, 2011). One private organisation in Thailand that is trying to improve the practice of palliative care in Thailand is the Thai Palliative Care Society. Under the leadership of Dr Srivieng Pairojkul, the Thai Palliative Care Society is composed of stakeholders such as patients, family members, health-care providers and academics who want to increase awareness regarding hospices, educate, to train a palliative care workforce of health-care providers and volunteers, to increase the number of community-based palliative care programmes and to facilitate knowledge-sharing within Thailand and beyond its borders

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(E-hospice, 2014). The Thai Palliative Care Society sponsored and spearheaded the 10th Annual Asia Pacific Hospital Conference in Bangkok, Thailand in November 2013. The focus of the conference was palliative care in the AsiaPacific region. Approximately 960 delegates representing 30  countries and multiple disciplines attended, and 468 were non-Thai citizens. The Thai Palliative Care Society’s vision is to have palliative care training centres to cover every region of Thailand. Two centres are planned for 2014 and two more are projected to come online in 2015. They also have funding to support seven projects with the specific aim of promoting and delivering palliative care (E-hospice, 2014).

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Mahidol University Mahidol University, a public research university in Bangkok, Thailand, is committed to the development of educated palliative care clinicians and scholars. Doctoral students are encouraged to seek out opportunities to study with palliative care experts during their doctoral education, generally after they have finished their coursework and are preparing the dissertation proposal. One exemplar of a novel programme to address the capacity to deliver palliative care is a unique year-long palliative care visiting scholar programme developed by the University of Virginia School of Nursing in the US in collaboration with Mahidol University. A doctoral student in Public Health from Mahidol University was paired with a University of Virginia faculty member, Dr Cathy Campbell, who has expertise in palliative care. Guided by the University of Virginia faculty member, the student developed learning objectives related to four focuses: interprofessional palliative care, coursework to support the development of the student’s dissertation (qualitative research methods and health policy), physical symptom management and contemplative practices for end-of-life care. The University of Virginia faculty member is also serving as an external member of the student’s dissertation committee. The topic of the dissertation study is ‘increasing capacity for community-based palliative care’. Lastly, the student had two opportunities to present her work to doctoral students and faculty members within the School of Nursing and prepared a manuscript for publication. While she did have to travel to the United States to participate, as a doctorally prepared faculty member, she will be able to influence palliative care clinical practice, education and research with the knowledge gained during the programme. Designing, implementing and evaluating sustainable programmes to increase knowledge, compe-

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tencies, skills (Campbell et al, 2012; Daly and Matzel, 2013; Ferrell et al, 2013) are key processes for ensuring the capacity to deliver interprofessional palliative care.

Access to narcotics: implications for health policy The provision of palliative care has been designated ‘an urgent, humanitarian responsibility’ (Stjernwärd et al, 2007). Consistent access to medications for pain relief is part of that mandate (Grover, 2011). Access to narcotics is a complex issue, which requires a multifactorial approach in order to address it (Thongkhamcharoen et al, 2014). Combined with education and training, one possible recommendation is to expand the scope of practice of nurses so that they can work to their limits. At the policy level, nurses can advocate changes to nurse practice, act to expand prescription authority for nurses and to expand use of advanced practice nurses such as nurse practitioners and clinical nurse specialists (Jagwe and Merriman, 2007; Downing et al, 2010). In Uganda, a country with both a limited number of physician providers and large rural and remote areas, specially trained teams of nurses prescribe morphine directly or work with a protocol under a supervising physician (Downing et al, 2010). Sweden and Australia have expanded the scope of practice of their nurses to allow their nurses to prescribe narcotics (Campbell et al, 2009). Palliative care providers, nursing associations, medical associations, patient advocacy groups and other stakeholders can build coalitions to support legislation to increase quotas of opioids available and affirm that an adequately trained palliative care workforce can prescribe, administer and evaluate the use of these medications safely in the home. Evaluating patient outcomes of the expansion of the role of the nurses (professional nurses and advanced practice nurses in prescription) in the management of the patient receiving morphine or other opioids would also be an important component of increasing access to opioids (Campbell et al, 2009).

❛An important end-of-life outcome is a culturally appropriate, peaceful dignified death in the place of one’s choosing.❜

Conclusion An important end-of-life outcome is a culturally appropriate, peaceful dignified death in the place of one’s choosing (Kongsuwan et al, 2012; Doorenbos et al, 2013). An overview of the state of palliative care in Thailand is an important contribution to the palliative care literature. It is the cornerstone for a programme of research into palliative care in Thailand. Without palliative care programmes, patients

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❛Clinical practice, health policy and research can work together to provide dignified end-of-life care in Thailand.❜

with life-limiting illnesses who are dying, experience inadequate physical symptom management. Patients and their families often have unmet psychological and emotional needs. As a result, patients and families suffer because of the limited number of palliative providers, particularly those providing home-based services (Smith and Porock, 2009; Campbell et al, 2009; Campbell et al, 2012). Clinical practice, health policy and research can work together to provide dignified end-of-life care in Thailand.   Declaration of interests The authors have no conflicts of interest to declare.

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International Journal of Palliative Nursing is very grateful for the advice provided by its pool of dedicated volunteer peer reviewers and always appreciates new offers from experienced clinicians and academics interested in helping out. If you would like to be considered for the peer review team, please send a brief CV and details of your particular areas of expertise or interest to the Editor: [email protected] Guidelines for reviewers are available.

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Palliative care in Thailand.

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of pall...
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