negotiating palliative care in the context of culturally and linguistically diverse patients

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PERSONAL VIEWPOINT Negotiating palliative care in the context of culturally and linguistically diverse patients A. Broom, 1 P. Good, 2,3,4 E. Kirby 1 and Z. Lwin 5 1 School of Social Science, University of Queensland, 2 Department of Palliative Care, Mater Health Service, 3 St Vincent’s Private Hospital Brisbane, 4 Mater Research Institute, University of Queensland, and 5 Department of Medical Oncology, Mater Health Services, Brisbane, Queensland, Australia Key words palliative care, CALD, communication, transition, culture. Correspondence Phillip Good, St Vincent’s Hospital, Palliative Care, 411 Main Street, Kangaroo Point, Brisbane, Qld 4169, Australia. Email: [email protected] Received 6 June 2013; accepted 7 July 2013. doi:10.1111/imj.12244 Abstract There is an increasing emphasis on meeting the healthcare needs of culturally and linguistically diverse (CALD) communities in Australia. Negotiating the point of futility and the transition to specialist palliative care requires not only effective communication but also sensitivity to cultural and linguistic specificities. This can be a challenging process for clinicians, patients and families. Here, we outline some of the key challenges currently facing many clinicians in the context of CALD patients, with particular refer- ence to the transitioning of patients to specialist palliative care. We suggest a focus on further research that can systematically document and model existing CALD-specific clinical processes and pathways, which can then support the development of targeted educational interventions. This includes developing a multi-stakeholder understanding of the CALD experience that moves beyond cultural stereotyping and predicting need. Negotiating the transition to specialist palliative care can be difficult for clinicians regardless of a patient’s cultural background and family context. The prospect of referral to palliative care, and associated shifts in treatment and advanced care planning, has been shown to be a challenging area of clinical work and problematic for doctor–patient communication. 1,2 For culturally and lin- guistically diverse (CALD) patients and their families, experiences of and access to palliative and end-of-life care can be fraught with difficulties. 3,4 Here, we refer to CALD communities as those non-indigenous ethnic groups in Australia other than the English-speaking, Anglo-Saxon majority. To provide some context, only 46% of migrants to Australia since 1945 are of Anglo- Celtic origin, while 79% of the population speak only English at home. 5 While culture should not be viewed simplistically and is merely one of many biographical influences on patient care, we know from research internationally that CALD patients and their families often receive less adequate care, and report greater communication problems than non-CALD patients. 5–8 Their needs may also be different to, or even conflict with, the dominant principles of pal- liative care. de Graaf et al. showed that Turkish and Moroccan immigrants to the Netherlands who were in line for specialist palliative care were focused heavily on such things as continued curative treatment until the end of their lives, avoiding shameful situations, devoted care by their families and being buried in their country of origin. 9 In their study of Sikh and Muslim South Asian patients in Scotland, Worth et al. found that care was heavily influenced by cultural discrimination, lack of awareness of care services and communication limita- tions in the context of poor English. 8 Similarly, in the Australian context, the limited work available indicates difficulties in achieving culturally appropriate palliative and end-of-life care in the context of CALD commu- nities. 10 This work and that of others has emphasised the importance of fostering cultural competence among cli- nicians in the context of negotiations around palliative care. 11 Given this broader context of cultural and linguistic diversity, negotiations about referral to specialist pallia- tive care present unique and often challenging issues for clinicians. Difficulties often emerge from the presence of (often unrecognised) values around disclosure, care and responsibility, including culturally specific beliefs about the dying process. 12,13 Indeed, for some CALD popula- tions, formalised palliative care does not exist within their country of origin. Here, we outline some key areas for consideration for treating clinicians, and gaps in knowledge that require further investigation. Funding: None. Conflict of interest: None. Internal Medicine Journal 43 (2013) © 2013 The Authors Internal Medicine Journal © 2013 Royal Australasian College of Physicians 1043

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Page 1: Negotiating palliative care in the context of culturally and linguistically diverse patients

PERSONAL VIEWPOINT

Negotiating palliative care in the context of culturally andlinguistically diverse patientsA. Broom,1 P. Good,2,3,4 E. Kirby1 and Z. Lwin5

1School of Social Science, University of Queensland, 2Department of Palliative Care, Mater Health Service, 3St Vincent’s Private Hospital Brisbane,4Mater Research Institute, University of Queensland, and 5Department of Medical Oncology, Mater Health Services, Brisbane, Queensland, Australia

Key wordspalliative care, CALD, communication,

transition, culture.

CorrespondencePhillip Good, St Vincent’s Hospital, Palliative

Care, 411 Main Street, Kangaroo Point,

Brisbane, Qld 4169, Australia.

Email: [email protected]

Received 6 June 2013; accepted 7 July 2013.

doi:10.1111/imj.12244

Abstract

There is an increasing emphasis on meeting the healthcare needs of culturally and

linguistically diverse (CALD) communities in Australia. Negotiating the point of futility

and the transition to specialist palliative care requires not only effective communication

but also sensitivity to cultural and linguistic specificities. This can be a challenging

process for clinicians, patients and families. Here, we outline some of the key challenges

currently facing many clinicians in the context of CALD patients, with particular refer-

ence to the transitioning of patients to specialist palliative care. We suggest a focus on

further research that can systematically document and model existing CALD-specific

clinical processes and pathways, which can then support the development of targeted

educational interventions. This includes developing a multi-stakeholder understanding

of the CALD experience that moves beyond cultural stereotyping and predicting need.

Negotiating the transition to specialist palliative care canbe difficult for clinicians regardless of a patient’s culturalbackground and family context. The prospect of referralto palliative care, and associated shifts in treatmentand advanced care planning, has been shown to be achallenging area of clinical work and problematic fordoctor–patient communication.1,2 For culturally and lin-guistically diverse (CALD) patients and their families,experiences of and access to palliative and end-of-lifecare can be fraught with difficulties.3,4 Here, we refer toCALD communities as those non-indigenous ethnicgroups in Australia other than the English-speaking,Anglo-Saxon majority. To provide some context, only46% of migrants to Australia since 1945 are of Anglo-Celtic origin, while 79% of the population speak onlyEnglish at home.5

While culture should not be viewed simplistically andis merely one of many biographical influences on patientcare, we know from research internationally that CALDpatients and their families often receive less adequatecare, and report greater communication problems thannon-CALD patients.5–8 Their needs may also be differentto, or even conflict with, the dominant principles of pal-liative care. de Graaf et al. showed that Turkish and

Moroccan immigrants to the Netherlands who were inline for specialist palliative care were focused heavily onsuch things as continued curative treatment until the endof their lives, avoiding shameful situations, devoted careby their families and being buried in their country oforigin.9 In their study of Sikh and Muslim South Asianpatients in Scotland, Worth et al. found that care washeavily influenced by cultural discrimination, lack ofawareness of care services and communication limita-tions in the context of poor English.8 Similarly, in theAustralian context, the limited work available indicatesdifficulties in achieving culturally appropriate palliativeand end-of-life care in the context of CALD commu-nities.10 This work and that of others has emphasised theimportance of fostering cultural competence among cli-nicians in the context of negotiations around palliativecare.11

Given this broader context of cultural and linguisticdiversity, negotiations about referral to specialist pallia-tive care present unique and often challenging issues forclinicians. Difficulties often emerge from the presence of(often unrecognised) values around disclosure, care andresponsibility, including culturally specific beliefs aboutthe dying process.12,13 Indeed, for some CALD popula-tions, formalised palliative care does not exist withintheir country of origin. Here, we outline some key areasfor consideration for treating clinicians, and gaps inknowledge that require further investigation.

Funding: None.Conflict of interest: None.

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Internal Medicine Journal 43 (2013)

© 2013 The AuthorsInternal Medicine Journal © 2013 Royal Australasian College of Physicians 1043

Page 2: Negotiating palliative care in the context of culturally and linguistically diverse patients

Belief and values around palliative careand the end of life

There is no coherent set of beliefs or values that existsamong CALD communities just as there is huge diversityamong the mainstream non-CALD population. In fact,research suggests that understandings and experiences ofpalliative care have more similarities than differencesacross CALD and non-CALD groups.14 Thus, it is impor-tant to acknowledge coherency across CALD and non-CALD groups in terms of need and preferences, as well asdeveloping sensitivity towards difference. Despite this,there can be sites of difference that require attention.Values shown as potentially diverse within CALD com-munities in relation to palliative care include views on (i)the desire to carry burden collectively, (ii) resistanceto explicit talk about death and dying within clinicalencounters, (iii) desire to care for and to die at home and(iv) use of traditional medicines or healers as part ofsupportive care.3,6,12,13,15 These are merely a few examplesof how CALD community issues may manifest in patientand family preferences and expectations in the contextof referral to palliative care and the transitioning to theend of life. While these preferences exist across CALDand non-CALD contexts, they show prominence in par-ticular communities. Sudanese families in Australia, forexample, have been shown to desire withholding newsof terminal status until the community has organisedsupport and resources. Moreover, they actively pursuetraditional healing practices as part of end-of-life care.16

Religious values may also be diverse, and in some casespromote ideas counter to biomedical conceptions of bestpractice.12 As in other areas of medicine, while advancedcare planning is primarily based on symptom control anddisease-based issues, sensitivity to cultural and familialvalues improves the likelihood of effective follow-up,lower levels of complaints, treatment compliance, andimportantly access to timely and effective palliative care.

Language and understanding

One of the clear issues in treating some CALD patients isthat cultural diversity presents value-based and language-based issues in medical encounters.7,17,18 In some respects,these are very different concerns. Patients may speaklanguages other than English but identify no specific cul-tural values that require sensitivity with the clinicalcontext. Others may speak fluent English, yet hold cul-tural values that have implications for care and supportiveprocesses.11 Dealing with situations on a case-by-case basisis clearly the only feasible approach. Translation and inter-preting can also complicate clinical work, with consider-able diversity in terms of the competence and availability

of interpreters, the rapport developed in the context ofinterpreting, and the mediation of conversations throughtranslation processes.17 The use of interpreters is notmerely a matter of conveying words but also meaning.19

Research shows that the subtleties of language (e.g. ‘weare running out of options’, ‘perhaps it is time to thinkabout your comfort rather than fighting the cancer’) canbe lost in translation,18 or can be laden with unintendedmeaning. Research has already shown that how palliativecare is described and represented has a significant impacton what patients and their families are willing to do oraccept in terms of a shift in their care trajectory.19 Explain-ing palliative care in different languages, and through aninterpreter who may not understand the implications ofcertain inflections, or indeed possess the medical knowl-edge to understand the rationale behind decisions, is anissue that requires attention.18 Depending on the cultureof the interpreter vis-à-vis patient/family, phrasing may beadapted as seen as appropriate for the family and broadercultural practice. This raises questions around the role ofinterpreters in the cultural mediation of bad news withinmedical settings.19 On a practical level, difficulties can beexperienced with using interpreters in small communitieswhen the interpreter is known to the family or knowspeople who know the family. In such contexts, patientsmay prefer family to act as interpreters. However, the useof family members as interpreters also raises questionsaround what details and meaning are being conveyed tothe patient given both the cultural and relational respon-sibilities of the family member/s.6 Finally, in some con-texts, interpreters are simply not available, and cliniciansare expected to make do with the limited English avail-able, with few resources currently available to supportthem.19 Such scenarios emphasise the complexities for thepatient, clinician and family when one considers thatlanguage and cultural values influence action and com-munication concurrently.

Expression of grief and emotion

There is a comprehensive literature regarding howcultural values may shape expressions of grief andloss.12,13,19 While people are idiosyncratic in how theyexpress hope, grief and loss, research suggests that cul-tural groups may reflect particular values and culturallyaccepted practices, including tendencies towards expres-siveness, stoicism, flamboyance, privacy and so on.While emotion is much more complex than mere mani-festations of culture,7 awareness of cultural normsaround receiving bad news or responses to stoppingpotentially curative treatment, for example, is an impor-tant part of clinical practice.12,20 In some cultures, forexample, digesting bad news or nervousness may be

Broom et al.

© 2013 The AuthorsInternal Medicine Journal © 2013 Royal Australasian College of Physicians1044

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expressed through smiling, and a clinician may interpretthis as reflecting full comprehension or even acceptance.As a result, expressions of emotion in response to referralto palliative care may also reflect culturally acceptedpractices.13 From a clinical perspective, this does notlegitimise or de-legitimise various expressions of grief,but rather provides a frame for better understanding theways that different patients and families react to andexperience loss and grief. Such sensitivities should beconsidered alongside other socioeconomic variables,such as gender, class and age. Ultimately, conversationsabout referral to palliative care may result in differentinterpersonal dynamics and forms of expression withinmany CALD patient contexts. Preparedness and trainingfor these circumstances are vital to equip doctors forsuch complex scenarios.

Developing a better understanding ofthe CALD patient and family experience

One of the key factors underpinning the dearthof continuing professional education around CALD

communities is the lack of a comprehensive understand-ing of the complexities of CALD patient, family and com-munity views and experiences.21 Traditionally a difficult-to-access population, much research centres on thedifficulties faced by clinicians, or typologies of CALDpatient responses or needs. What is urgently required is amulti-stakeholder understanding of CALD communityexperiences of the transition to palliative care and ofcommunicating with clinicians (whether through inter-preters or otherwise) across medical sub-specialties, aswell as systematic analysis of real-time family negotia-tions to reveal the complex interplay of culture, lan-guage, news telling, clinical judgement and broadernegotiations around transitions to the end of life. Com-munication between clinicians and CALD patients andfamilies remains a black-boxed issue that is often simplyglossed over rather than actively engaged with. This gapin our understanding must be addressed if the care ofCALD communities in regard to palliative and end-of-lifecare is to improve. This will serve to empower cliniciansthrough education and support to be able to deal moreeffectively with CALD patients and their families.

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LETTERS TO THE EDITOR

Clinical-scientific notes

Symptomatic metastaticpulmonary calcification in arenal transplant recipient

A 37-year-old man was referred for investigation of a3-week history of productive cough on a background ofrenal transplantation with immunosuppression. Therewas no history of fever, dyspnoea, overseas travel, occu-pational or zoonotic exposures. He was an ex-smoker of3 pack years.

Chest X-ray revealed bilateral nodular opacitiesthat were not present on the chest X-ray done at thetime of renal transplantation. He was commenced onamoxicillin/clavulanic acid.

He had chronic renal failure secondary to reflux neph-ropathy treated with haemodialysis for 4 years beforeundergoing deceased donor transplantation in April2008. Prior to transplantation, he had refractory hyper-parathyroidism managed with phosphate binders andcalcitriol before he underwent subtotal parathyroidec-tomy in November 2007. Prior to the parathyroidectomy,parathyroid hormone (PTH) was 149 pmol/L, calciumwas 2.54 mmol/L, phosphate was 2.6 mmol/L and thecalcium-phosphate product was 6.60 mmol2/L2. Otherpast medical history included peripheral vascular disease.

Following the parathyroidectomy, the PTH decreasedto 12.1 pmol/L and was 7.1 pmol/L at the time of renaltransplantation. Post-transplantation, the PTH decreasedto 2.4 pmol/L and was 2.0 pmol/L at presentation. Thecalcium levels post-parathyroidectomy were around2.0 mmol/L and remained low post-transplantation,increasing to 2.3–2.4 mmol/L with calcitriol therapy formonths prior to presentation. The phosphate levels werequite variable over these periods.

His immunosuppression consisted of prednisolone(10 mg daily), azathioprine (75 g daily) and tacrolimus(3 mg mane and 2 mg nocte). Other medicationsincluded calcitriol 0.25 mcg daily, sodium bicarbonate840 mg tds, diazepam 2 mg nocte and cyproheptadine4 mg nocte.

He was afebrile (T36.5), oxygen saturation was 99%on room air, and other vital signs were within normalparameters. His respiratory system was unremarkable,

Laboratory blood tests revealed a white cell count(WCC) of 8.1, C-reactive peptide 12, creatinine208 μmol/L and corrected calcium 2.38 mmol/L.

His computed tomography (CT) scan chest is shownin Figure 1. There was no prior CT chest.

Flexible bronchoscopy revealed a normal trache-obronchial tree, and there was no growth from fungal,

Figure 1 Non-contrast high resolution computed tomography scan of

the chest demonstrates nodular opacities in a centrilobular distribution

with some areas of ground-glass opacity involving both lungs.

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© 2013 The AuthorsInternal Medicine Journal © 2013 Royal Australasian College of Physicians1046