ORIGINAL ARTICLE

What is the meaning of palliative care in the Asia-Pacificregion?ajco_1315 197..202

Margaret O’CONNOR,1 Anthony Paul O’BRIEN,1 Debra GRIFFITHS,1 Edward POON,2

Jacqueline CHIN,3 Sheila PAYNE4 and Rusli NORDIN5

1Palliative Care Research Team, School of Nursing and Midwifery, Monash University Australia, Frankston, Victoria, Austra-lia, 2Ang Mo Kio-Thye Hua Kwan Hospital, and 3Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, NationalUniversity of Singapore, Singapore, 4International Observatory on End of Life Care, Lancaster University, Lancaster, Lan-cashire, UK and 5Tan Sri Jeffrey Cheah School of Medicine, Monash University Malaysia, Selangor Darul Ehsan, Malaysia

Abstract

This paper describes the preliminary work required to understand cultural differences in palliative care in theUnited Kingdom and three countries in the Asia-Pacific region, in preparation for a cross-country study. Thestudy is intended to address cultural understandings of palliative care, the role of the family in end of lifecare, what constitutes good care and the ethical issues in each country. Suggestions are then made to shapethe scope of the study and to be considered as outcomes to improve care of the dying in these countries. Itis anticipated that the method used to achieve consensus on cross-country palliative care issues will be bothqualitative and quantitative. Identifying key priorities in the delivery and quality measures of palliative carewill involve participants in focus groups, a Delphi survey and in the development of clinical indicatorstowards creating standards of palliative care common to the Asian Pacific region.

Key words: culture, ethics, palliative care, policy.

INTRODUCTION

In the Asia-Pacific region, especially in countries likeAustralia, Malaysia and Singapore, mixed culture popu-lations are the norm of these societies. The population inthe United Kingdom (UK) has also become increasinglydiverse with approximately 10% from minority ethnicgroups. This requires health professionals in these coun-tries to be sensitive to the nuances of care within par-ticular cultures. No less in palliative care, where culturaldifferences are particularly highlighted in issues sur-rounding end of life questions. Regardless of the circum-stances of death, dying and loss in different cultures haveimportant and different considerations in how the

person is stewarded from this life and the beliefs, valuesand religious requirements surrounding death anddying. Asian and Pacific cultures are characterised byvery strong cross-generational, family-centred behav-iours in supporting each other in times of crisis, includ-ing death.

There has been no research in the Asia-Pacific regionwhich brings countries into a close collaborative part-nership to focus on the shared understanding of issuessurrounding end of life care and best practice principles.We seek to learn from a collaborative experience withissues in the UK. Singapore, Australia, and Malaysia arethe focus of this project because of their regional repre-sentativeness and similarities (English-speaking andsharing a postcolonial heritage with the UK), but alsobecause they have established palliative care models atvarying levels of health care integration. This will makecomparison of different cultures easier even thoughwithin each of these countries different languages,religious beliefs and traditions prevail. Some of these

Correspondence: Professor Margaret O’Connor RN DN,Palliative Care Research Team, Monash University Australia,PO Box 527, Frankston, Vic. 3199, Australia.Email: margaret.oconnor@med.monash.edu.au

Accepted for publication 23 May 2010.

Asia–Pacific Journal of Clinical Oncology 2010; 6: 197–202 doi:10.1111/j.1743-7563.2010.01315.x

© 2010 Blackwell Publishing Asia Pty Ltd

languages and religions are also part of Australia’s mul-ticultural context. It is hoped that shared knowledge willempower changes in cultural awareness in each country.

PALLIATIVE CARE AND POLICYDEFINITIONS

The World Health Organisation’s (WHO) definition ofpalliative care highlights families, quality of life andreduced suffering through pain and symptom manage-ment. The WHO definition further incorporates spiritu-ality and active autonomy in end of life decision-making.1

Another definition of palliative care describes thecompetent and compassionate care for people with aterminal illness, providing relief from pain and otherdistressing symptoms; integrating psychological andspiritual care and supporting people to live as actively aspossible until death.2,3 Palliative care includes support ofthe ill person’s family and other carers during the life ofthe person and continues after their death.4

In many developed countries, national palliative careplans and policies have proved critical to the planning offuture palliative care provision, the building of newservices and the formulation of recommendations andpolicy direction for health care professionals.5 Compre-hensive government guidelines aid policy developmentand standards in the delivery of quality end of life care.For example, the Australian National Palliative CareStrategy aims at consistency of palliative care delivery toall Australians requiring terminal care.5,6

The public health approach to palliative care suggestsfour key components for developing palliative care.7

These components are: ensuring that palliative care hasbeen incorporated into national cancer control pro-grams and other policies; essential drug availability inaccordance with the WHO list of essential medicines;education of health professionals and the public; andfunding for the implementation of services.

Over the last four decades, modern palliative care hasspread globally, and being responsive to local needs,each country has been developing its own model, whileholding to certain central principles. An Asian modelthat addresses issues of treatment, culture, family, inter-ventions, advance directives, and ethics, would be ofgreat value in standardizing procedures and acknowl-edging cultural differences in the provision of palliativecare. Underpinning this approach, it is imperative that astrong set of ethical and moral policy guidelines are inplace to protect patient choice and autonomy as it isexercised within different cultures.8

In the Asia-Pacific region, there are few nationalpolicy palliative care guidelines,9 with Australian pro-grams being seen as exemplars of the end of life care.Similarly in the UK, policy development has beenstrengthened by guidance for improving palliative carefor adults with cancer10 and extended to all adults facingtheir end of life in the first ever NHS End of life CareStrategy11 In Asia, Singapore has had a history of pal-liative care nursing education since 1985.12 In Malaysia,the government has required the establishment of pal-liative care units in the public hospitals since the late1990s. In the latter two countries especially, family andreligious beliefs play a strong role in guiding care at theend stage of life.

MOVEMENTS OF POPULATIONS INTHE REGION

It is now common knowledge that globally there is anageing population crisis combined with an unprec-edented level of people living with chronic illnesses.Cancer is the biggest cause of death in most countries,and rapidly becoming a chronic illness as treatmentimproves. These demographic changes place an increas-ing burden on health care funding and alter the trajec-tory of health care delivery. Health care personnel of alldisciplines are now required to focus on improvingthe quality of life for a larger group of chronically illpatients, involving patients and families in self care man-agement. Where there are limited palliative care servicesavailable, and where care occurs at home, families willbe undertaking the majority of the burden of care.13,14

The typical picture of deaths in developing countriescompared to developed countries is that of a higherproportion of deaths in the age group 0–14 years than inthe developed countries. In developed countries the pro-portion of deaths in the over 70 years age group is muchhigher because in developing countries people liveshorter lives and die younger.15

The total population in multicultural Malaysia for theyear 2008 was estimated to be 27.73 million people, ofwhich 4.5% (1.232 million) were aged over 65.16 In2020, the number of Malaysians over the age of 60 isexpected to increase to 3.3 million. An estimated 20%of the elderly account for hospitalization in Malaysia,admitted mainly with serious, life-threatening illnessesrequiring intensive treatment.17 The main causes of mor-tality in Malaysia are heart disease and diseases of thepulmonary circulation (16.54%) and deaths caused bymalignant neoplasms (11.21%).18 In 2006, the Age-

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Standardised Incidence Rate for cancer was 131.3 per100 000 predominantly among Chinese.19

In the UK, the population is estimated to be 61million in 2009 and like other European countries theUK has an ageing population. The proportion ofpeople aged 65 and over is projected to increase from16% in 2008 to 23% by 2033, an inevitable conse-quence of the age structure of the population and inparticular the large numbers of people born after theSecond World War and during the 1960s baby boom.A study by Seymour et al.20 indicates that 83% ofpeople are aged over 65 years when they die. The maincauses of mortality are heart disease, stroke, respira-tory disease and cancer.

Singapore’s population is also ageing and its fertilityrate is not replacing the generations of ageing citizens. InSingapore in 1997 there were an estimated 217 400people over the age of 65 years (7% of the popula-tion).21 By the year 2030, these figures are projected toincrease to 798 700 (18.4% of the population).9 Manyof these patients will be living with a chronic illness,diagnosed with cancer, or both.

Australia’s similarly ageing population is 22 million,an extraordinarily diverse cultural mix with more than25% of the population having been born overseas andcomprising people from more than 200 countries. Of the137 000 deaths each year, the majority are of peopleaged 70 and over, dying from heart diseases and cancers.In relation to palliative care systems and research, Aus-tralian practitioners are not well linked to regional part-ners providing palliative care and thus their culturalcompetence requires considerable development.

KEY UNDERSTANDINGS OF CARE ATTHE END OF LIFE

Given the problems of ageing societies, it is important tomaintain quality of care and cultural appropriateness,especially when someone is facing impending death. It isequally important to know the cultural meaning in clini-cal practice when nurses, doctors and family membersare faced with the need to implement a patient’s requestto cease treatment, especially where quality of life hassubstantially deteriorated. There is a need to identifyconsiderations relating to preferred place of death andwhether this changes along the disease trajectory. In allcountries involved in this study, home death is fre-quently considered the cultural preference; however, inAsia there are few studies which examine the real pref-erences of patients compared to their family members orthe general population. Seminal work in the UK by

Clark and Seymour22 suggests that people make a choiceto die at home as part of a negative choice against thealternative of institutionalized death and all its atten-dant constraints.

There are discernable differences and practices inAsian cultures in relation to family involvement in thecare of the dying compared to those of Western cultures.Australia, given its regional presence, as well as being akey place of migration for many cultures, can benefitfrom learning more about death and dying from coun-tries more developed in drawing on thousands of yearsof family-centred tradition and culture around deathand dying, grief and bereavement. It is known thatpeople from other cultures living in Western societiesfollow the culture and traditions of their country oforigin in relation to their health beliefs, particularly attimes of significant life events, like birth or death.23,24 Inthis context, the notion of a good death in Westerncultures is generally associated with the person beingaware of their diagnosis and involved in end of lifedecision-making; in Asian cultures, the diagnosis maynot be openly discussed and decisions are familyfocused.25 Moreover, it is important to understand howbeing an immigrant or ethnic minority might affect endof life choices: concerns relating to the practice of par-ticular traditions may lead to an individual beingdeprived of particular interventions.

In Singaporean families it is not uncommon to thwarta doctor’s attempt at disclosure of a cancer diagnosis toa patient.26 Nevertheless, Campbell27 notes this trend ischanging, with evident benefits as diagnosis disclosure iscorrelated with improved symptom control and patientsatisfaction with care.26 Therefore, there is a need toexplore more broadly those factors that comprise a gooddeath from the various cultural perspectives in order tomore effectively tailor the delivery of care.

Perceptions around the concept of the “right to die”are changing in the region and differ widely across coun-tries. Campbell27 draws attention to the issues surround-ing individual autonomy and choice and the loss ofmeaningful rituals of mourning in some cultures.28–31

Campbell argues that “Singapore appears to be in tran-sition between traditional views of the dying processwhere the family is told of a poor prognosis but thepatient is kept (theoretically) in the dark, to the moremodern approach in which the patient is given choiceand control”27 (p. 10). This shift from family to indi-vidual patient choice mirrors a general change in per-ception of the roles and duties of family membersand poses the question: is this a gain from the moralperspective?27

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In cultures with Chinese roots, filial piety accordingto Confucianism is central, requiring complete obedi-ence of sons and daughters to parents during theirlifetime and ensuring the best possible care as parentsage, including their duty to advocate on behalf oftheir parents. Families of Chinese origin may live inthree generation groupings of older parents livingwith a son or daughter and their family.23 Thus, itremains the primary responsibility of the family toprovide care for the ill or dying member and healthprofessionals remain strangers. The freedom to haveopen discussions about care and treatment varies con-siderably within cultures, with death and dying beingtaboo subjects in Chinese communities; thus familiesmay not discuss these issues for fear of invoking badluck.

Malaysia, with its culturally diverse population, dem-onstrates many different values and beliefs relating toend of life care. Similar to other Asian countries, dyingat home is encouraged as well being the preferred optionby most patients and their families, based on the culturalbelief of wishing to die in a familiar environment sur-rounded by family32,33 and the final religious rites aremore able to be delivered at home.34

Many people in Asian cultures desire to die at homerather than in institutional care, unlike the reality inAustralia, where the majority dies in institutions. Thereis much to be learned about respect for religious andcultural needs and expectations towards care delivery atthe end of life. In Singapore, Goh35 highlights that wheredeath is imminent, people want to die at home becauseof the belief that the soul will get lost if they die some-where else because the body has been moved. Otherswant to be around family and friends but not die athome because of the inconvenience and bad luck thatthis might bring to the household; even affecting resalevalue of the home! Subsequently, arrangements aremade to transfer the patient to a hospice when death isimminent,35 making for considerable discordance sur-rounding where people choose to die.

The UK is a multicultural society with considerableheterogeneity on cultural views and preferences inengaging with medical decision-making and the exerciseof individual choice and autonomy. The government’srhetoric advocates more patient choice in end of life caredecisions and promotes advanced care planning.11 Butcancer patients, especially older ones, may not alwayswish to engage in these decisions or perceive themselvesas having choices.36 This raises another issue requiringinvestigation, that is, whether there are cultural differ-ences in the degree of acceptance to palliative care in

cancer patients as compared with those dying fromother diseases.

Clearly, there are cultural differences in end of lifecare in Asian settings, all of which need to be scoped asa baseline, to enable research surrounding this impor-tant area to be conducted and further developed.

WHAT ARE THE ETHICAL AND LEGALISSUES AT THE END OF LIFE?

There is a long bioethics tradition of examining theethical, legal and policy dimensions of caring for theterminally and chronically ill. However, there is littlework that addresses the specific issues that arise withinAsian cultures.37 Data on the attitudes and needs ofpatients with cancer and their carers in Singapore andother Asian cultures will offer fresh ethical and legalperspectives on the issues that tend to be discussed in thepredominantly Western literature. Such issues includethe nature of a “dignified” or good death, patients’“rights” to quality end of life care, when it is appropri-ate to withdraw or withhold life-supporting treatment,whether resource limitations can ever be a valid reasonfor limiting care, and what it means to deem a treatment“futile” or “extraordinary”.38,39 There is a particularlypressing need to assess the issues about advancedecision-making, including care-giving and advocacy,and the identification of existing barriers,40 given theSingapore, British and Australian push for the use ofadvance directives.

An advance directive rests mostly on the ethical prin-ciple of respect for patient autonomy, that is, the ideathat mentally capable people have the right to decidewhat they want to happen to their bodies.41 This pre-dominantly Western focus espouses the importance ofan informed autonomous patient,42 which may not fitwith family-centred cultures. And in Malaysia, espe-cially among Muslim communities, family-centrednessis often a proxy for religion-centredness, because Islamis central in decision-making processes involving end oflife issues.

There is then reason to suspect that autonomy maybecome “lost in translation” when construed in theAsian context.27 In Western traditions, personalautonomy sits above all other considerations,43 such asthe needs of loved ones and the wider community31,44,45

and, thus, requires reinterpretation, together with anexploration of the pertinent factors within Asian healthcare practices.46

Further, there are variations between countries inunderstanding the place of “do not resuscitate” (DNR)

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orders and this is another area for further research in thedomain of end of life care.47,48 Examination of this issuecould provide valuable insight into ethical and legalconstructs, including the timing of the order, who isinvolved in the decision and how it is documented orcommunicated to others. For many health care profes-sionals a firm understanding of the nexus betweenethical and legal expectations, and the reality of clinicalpractice is often weak or at least unclear.49

WHAT IS NEEDED TO IMPROVE CAREAT THE END OF LIFE?

It is critical that the palliative care health workforce iscaring, knowledgeable and sensitive to the needs of thedying person, regardless of culture, or professional ori-entation. As knowledge grows about end of life carefrom a cross-cultural perspective and best practice pro-tocols are developed and disseminated, the health careprofession will develop greater empathy and under-standing. This will include the need to identify andhighlight the key legal and ethical principles that under-pin and influence decision-making which will alsoenhance clinical practice.

Education in palliative care needs to develop in a waythat meets the cultural needs of various populations inthe Asia-Pacific region. There are challenges of access,language and modes of delivery, which require carefulthinking. For example, fewer nurses than doctors speakEnglish and have access to computers, requiring adap-tation of the dominant education models. A “train-the-trainer” program may be appropriate and this will beexplored in the study. Culturally appropriate clinicalindicators will need to be developed to establish bestpractice care in each country, respecting essential differ-ences as well as highlighting commonalities. We hope anAsian model of palliative care will then emerge from ourcombined work.

CONCLUSION

This paper has described differences and commonali-ties in the provision of end of life and palliative care inthe culturally diverse region of the Asia-Pacific, inpreparation for a cross-country study and comparisonwith the UK. Given that people revert to their familiarrituals and traditions in a time of crisis like death,the essential cultural nuances have been highlighted.Aspects of good care, the role that families play, andthe ethical issues have all been raised. It is anticipated

that an outcome of the study will be shared informa-tion that will contribute to improvements in care of thedying in all these countries.

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