Original Article
Patient-Centered Care or Cultural Competence: Negotiating Palliative Care at Home for Chinese Canadian Immigrants
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 372-379 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114527338 ajhpm.sagepub.com
Lisa Seto Nielsen, RN, PhD1, Jan E. Angus, RN, PhD2, Doris Howell, RN, PhD2,3, Amna Husain, MD4, and Denise Gastaldo, RN, PhD2
Abstract The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home. Keywords patient-centered care, cultural competence, palliative care, home care, Chinese immigrants, negotiation, postcolonial theory, hybridity
Introduction In Canada, the growth in demand for home-based care has prompted a trend toward palliative care delivered in the home.1-3 Palliative home care is socially negotiated because the care, although directed toward dying care recipients, changes the routine of others in affected households as well. The goals of home health care providers (HCPs) are complimentary but different from those of the care recipient and family, which involves ongoing negotiation of care plans and activities.4 Since Canada is an ethnoculturally diverse nation, coordination and negotiation of care-related goals and activities may be further complicated by dissimilar ethnic or cultural backgrounds, especially if there are language barriers. Chinese immigrants make up one of the largest minority groups in Canada.5 There is a growing segment of Chinese immigrants older than 65 years of age living in Canada,6 and the risk of developing cancer increases with age.7 Thus, in this article, we highlight the palliative home care experiences of Chinese Canadian immigrants with advanced cancer. Just as migrants have negotiated journeys that take them from one home to another in new countries, death is another journey that migrants must eventually navigate as well. These journeys involve unfamiliar terrain but are accomplished by drawing on biographically accumulated knowledge, experiences, and assumptions that may even link multiple meanings
of home for immigrants. Care recipients and family caregivers must negotiate care with palliative care providers, but more profoundly, all must negotiate a process of dying that accommodates various purposes and meanings of home. Thus, the home is a contentious site because it is not always a peaceful place for dying but is a space that houses multiple and competing interests.8 This article shares findings from a study that examined the meanings of home and negotiations of care between Chinese immigrants receiving palliative home care, their family caregivers, and home HCPs and relates to a pervious article that examined the encroachment of palliative home care into Chinese immigrant homes and the ways they resisted this intrusion.9 Thus, in this article, the focus is on the
1
School of Nursing, York University, North York, Ontario, Canada Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada 3 Ontario Cancer Institute, Princess Margaret Hospital, Toronto, Ontario, Canada 4 Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto, Ontario, Canada 2
Corresponding Author: Lisa Seto Nielsen, RN, PhD, Faculty of Health, School of Nursing, York University, HNES 310, 4700 Keele Street, Toronto, Ontario, Canada M3J 1P3. Email: [email protected]
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discursive tensions present in home care policies when providing palliative home care to Chinese immigrants.
Background Chinese immigrants and place of death. The first large-scale migration of Chinese to Canada began in 1858 but it should be noted that the historical context of Chinese migration to Canada is characterized by institutional racism as the Canadian government enacted legislations and enforced policies, such as the Chinese Immigration Act, 1923, which sought to control, limit, and stop the migration of Chinese people to Canada.10,11 Although the law was finally repealed in 1947,10 the legacy of discriminatory policies may influence Chinese immigrants’ beliefs about health and illness, access to care, and experiences of dying at home. Issues of racialization and health disparities continue to be a concern for immigrants as seen in the discrimination and harassment of Chinese and Asian immigrants during the outbreak of severe acute respiratory syndrome and the racial discourse of tuberculosis in Canada.12,13 The emphasis needs to shift beyond merely exploring beliefs about death and dying to incorporate the geopolitical forces that shape people’s experiences.9 Population-based statistics show an overall trend toward a decline in cancer deaths in hospitals and a gradual increase in home deaths across Canada,14-16 but there is no known statistical data on home death rates for Chinese immigrants. Anecdotally, there is a perception that Chinese immigrants do not prefer to die at home. This is in direct tension with the growing emphasis on supporting home deaths. The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is a common assumption that dying at home is not the preferred option.17-20 These assumptions, among others, build stereotypes about the Chinese immigrant population and fail to recognize marked differences within this immigrant group. Ethnic variation in preference for place of death has been reported in a number of quantitative studies examining place of death in the United States21-24 and United Kingdom.25 These studies generally reported that individuals of Asian and Chinese descent were less likely to prefer a home death and/or less likely to die at home.23,25,26 It is important to be critical of how these findings may be interpreted, as they may inadvertently blame culture for some people’s inability to die at home. Although it may appear that ethnocultural minority groups are less likely to die at home, it does not mean that culture or ethnicity is the cause of the phenomenon; thus, it is important not to attribute causality where at best an association can only be established. Intersection of home care and palliative care in Canada. Home care is one of the fastest growing components of the health care system in Canada.3 This growth has been attributed to the changes in demographic and life expectancy rates of Canadians and has resulted in an ‘‘aging in place’’ health services delivery policy.2,27,28 The relocation of health care into homes and out of institutions has been attributed to health care ‘‘reforms’’ that
have been characterized by fiscal constraints, cost efficiency, decline in the economy, and cost-saving attempts.29,30 There has been a corresponding increase in the range and intensity of services outside of hospitals, including home-based palliative care. Thus, end-of-life care networks in the community have been developed to support and implement service delivery models to integrate and improve palliative care in the home but no integrated programs have been developed to service the immigrant population.31,32
Theory Postcolonial Theory In this study, the analysis engaged a postcolonial lens to adopt a critical conceptualization of culture that helped to deepen thinking and understanding of Chinese immigrant experiences of palliative home care. Similar to other critical perspectives, postcolonial theory is concerned with decentering knowledge and power to recenter and shift focus on those who have been historically marginalized and silenced.33-35 This shift opens space for drawing attention to subjugated knowledges and to tease out what Anderson et al theorize as contextual knowledge.33 Contextual knowledge refers to knowledge constructed in the context of individual experiences and informs us of how social positions contribute to marginalization and inequities.33 By understanding the meaning and context of how inequities manifest in health care, we can begin to challenge dominant discourses permeated with cultural essentialism, which assigns similar attributes to all members of a group.33 Rather than focusing on stereotypical discourses of cultural beliefs and taboos, research with a critical framework seeks contextual knowledge in order to illuminate the economic, political, and sociohistorical conditions that contribute to people’s experiences of health and illness. Hybridity. Postcolonial scholars conceptualize hybridity as a way to challenge essentialism, the false assumption that members of a group or category are defined exclusively by one or several key characteristics.36 Bhabha writes that migrants negotiate their identity in-between the old and the new spaces, which he calls the Third Space where newness emerges.37 This newness represents the hybrid of culture that emerges when the migrant’s cultural beliefs (old) intermingle with the beliefs of the society they are now trying to integrate with (new). It is in the intercultural exchanges where hybridity has become significant in health care encounters, because this is where the culture of medicine collides with patients’ ways of knowing and being. It should be noted that some scholars warn against being carried away by the ‘‘antiessentialist euphoria’’ associated with hybridity, urging attentiveness to ‘‘real-life experiences of living ‘between culture,’ not as a romanticized concept but as a challenging and at times painful negotiation between attitudes and values that are resistant to merging.’’38(p194) As an analytic tool, hybridity forefronts learning from participants and being flexible in understanding which meanings are resistant to
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374 Table 1. Demographics of Care Recipients. Case Case Case Case Case
1 2 3 4
Care recipient
Sex
Cancer site
CR1 CR2 CR3 CR4
F M M F
Lung Liver Brain Lung
Primary family caregivers Spouse Spouse Spouse Spouse
(CG1) (CG2) (CG3); adult child (CG3S) (CG4)
Home care nurse HCP1 HCP2 HCP2 HCP3
Abbreviations: F, female; M, male; CG, caregiver; HCP, health care provider.
merging within, for example, daily activities and interactions related to palliative home care for immigrant families. Home as the Third Space. The Third Space is not an actual physical place but, in this study, is conceptualized within Chinese immigrant care recipients’ homes where care recipients occupy the space in-between living and dying. The home is both a site of palliative services and activities of daily living. It is in the interactions and exchanges between Chinese immigrants with advanced cancer, family caregivers, and home HCPs where cultural differences collide in the domestic sphere during palliative home care and where the threshold of home as the Third Space becomes apparent. Thus, the home, conceptualized as the Third Space, becomes the border zone where migrants must contend with cultural differences and where culture’s hybridity emerges to disrupt dominant discourses.37,39
Methodology and Methods Ethical approval was obtained from participating institutions’ research ethics boards. A focused ethnographic study was conducted and drew on the tenets of postcolonial theory to examine how palliative home care was negotiated within the shifting context and meanings of home for Chinese immigrants with advanced cancer, their family caregivers, and HCPs. The study took place in a diverse, urban centre in Ontario, Canada. The methodology, methods, data analysis, and participant description have been reported in detail in the aforementioned article.9
Results In summary, 2 male and 2 female care recipients with advanced cancer receiving palliative home care, ranging in age between 50 and 80 years, were recruited (see Table 1). All care recipients identified their spouses as their main caregivers. Along with the 11 key informants (KI), these 4 cases consisted of 12 individuals that contributed to a rich description of the experiences of dying at home for Chinese immigrants and represented a robust sample. The care recipients in the study had been classified as palliative between 2 and 7 years. The term palliative usually refers to patients with shorter survival rates; it is important to emphasize that while this study population may not be typical, in that they were not actively dying but stable, this also made them more receptive to participating in the study. There are few studies that engage palliative home care patients, especially immigrants, and so this is viewed as a strength of the study. As well, this sample points to the ambiguity of prognosis patients with terminal
cancer often face and adds to the complexity this sample had to contend with when negotiating and navigating palliative care in the home.
Negotiating Care Three key themes came up frequently among participants: (1) the many facets of taboo; (2) discursive tensions; and (3) rethinking language barriers. The many facets of taboo. There was a pervasive assumption among many of the key informants and HCPs that death was a taboo topic and that dying at home was not the preferred option for Chinese Canadian immigrant care recipients. A home care case manager, who was also a Chinese immigrant, admitted that she did not believe that Chinese care recipients wanted to die at home because of a superstition: If they die at home, their home cannot be re-sell (KI1). Many key informants and HCPs shared similar stories of caring for Chinese immigrants receiving palliative home care. Often they felt that Chinese immigrant care recipients wanted to be cared for at home until they were actively dying, at which time, they wanted to be transferred to a palliative unit or hospice where the actual death would take place. Through these experiences, HCPs implicitly inferred it was a cultural belief that Chinese immigrants did not want to die at home. Discussing and planning for end-of-life care did occur for some Chinese immigrant families. This care recipient had stage 4 lung cancer and shared how she had to reconcile her desire for a home death along with her understanding of the supports available, especially the strain it would place on her husband as her main caregiver. There were multiple intersecting considerations she had to take into account as she planned for end-oflife care. She explained: In fact at the very beginning, I don’t want to die at home. I want to go into the hospital to have palliative care. But my son and my daughter-in-law, they were so strong about being at home . . . So, I do understand now that if I opt to stay at home, I will have all of this support. But still after I think about it, that is not enough. And I talk to my son and daughter-in-law, just me and dad in this apartment, even with all those support—that is not enough . . . So my decision is that I will opt to spend my last days in the palliative care unit. (CR1)
Although her final decision to not die at home could be construed as a cultural belief, it went beyond that and was seen
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in the hybrid and negotiated aspect of her decision could be seen in her rationalization. She recognized the multiple, and often, competing considerations she held and had to put it together in a way that would result in a satisfactory path to her last days. Although her discussions with her son and daughterin-law may indicate an openness to planning for her death, there evidently was something not being discussed—she was concerned that she would not receive the care required in the final stages and that she did not want to rely too heavily on her family. In this sense, she was silenced and there was subjugation of knowledge, fears, and anxieties. Similarly, a community palliative nursing consultant also speculated that some Chinese immigrant care recipients were silenced in expressing their desire to die at home because they feared burdening their family members. Simply put, he stated of Chinese immigrant care recipients: Almost all of them, they don’t want to be burden to the family (KI5). Although HCPs conveyed a belief that Chinese immigrants did not want to die at home because of superstitions associated with the home, it may actually be that care recipients were choosing to die in hospitals, palliative units, and hospices to avoid imposing on family members. Some HCPs also felt that the preference to die in a hospital was more than just a cultural taboo. A home care nurse, who was an immigrant from Hong Kong, explained: From my sense, I don’t think they 100% understand what is the palliative care for them . . . In China or in Hong Kong, we don’t have the home care. If you feel sick, you will stay in hospital. If you’re okay, you recover, then you go home. (KI7)
This HCP understood that there was a difference between the Canadian health care system and that of their country of origin. The understanding that illness and dying were treated differently within the two health care systems resulted in this nurse’s interpretation that Chinese immigrants may have a different understanding of palliative home care. Participants had to negotiate multiple, intersecting considerations to address the issue of dying at home. Thus, it was too simplistic to attribute the refusal to die at home as a cultural taboo. Stereotypes could be perpetuated by superficial observations rather than through a careful exploration for the logics behind the lack of willingness to die at home. Without probing further, Chinese immigrants are silenced in expressing their pragmatic, contextual concerns for dying at home. Discursive tensions. All HCPs seemed to struggle to reconcile the discourses of patient-centered care and cultural competence. Health care providers had difficulties in explaining how these seemingly compatible discourses actually worked together in practice. One HCP talked about strategies for negotiating through tense, often confusing encounters within palliative home care. This community palliative nursing consultant explained that she tried to come to know care recipients’ and families’ preferences and expectations, and how this aligned with her role as a HCP. She recognized that, regardless of
ethnocultural background, some issues at end of life were the same for most care recipients: I never had a clear vision because I saw so many different variations. You know everything from the extreme example in my mind was a daughter, I actually was yelled at by a daughter on the telephone for talking openly in front of her dad who was the patient, ‘‘Don’t you know Chinese people don’t like to talk about dying?’’ To a [Chinese] family sitting around the table and welcoming and being very open with me and doing very active decision-making and planning. . . . I am always reluctant to make big statements about any culture because you see so much variation. (KI8)
Her anecdotes appear to contradict but that is an apparent property of hybridity. The aim of negotiation was to reconcile the irreconcilable, and HCPs had to rationalize and make sense of their struggles with this task. Her contradictory statements indicated the complexity for HCPs of blending together knowledge, experiences, perceptions, and assumptions to bring reason to their actions and approaches to care. These rationalizations were often messy because practice was messy. More simply, when asked whether there were differences in working with Chinese immigrants and other ethnocultural groups, HCP1 was adamant in her response: There is no difference. You’re dealing with a dying patient. (HCP1). In reconciling her knowledge of culture and her role as a palliative home care nurse, she implied that there were prominent end-of-life care needs and concerns for care recipients that took precedence over culture. The shared experience of dying from cancer precluded culture, ethnicity, race, and religion. Evidently, the discursive tensions were not as apparent with care recipients and family caregivers because they were not working between the same practice discourses but they were working between cultural differences. In contrast to the struggles of HCPs, care recipients and caregivers were able to more seamlessly describe the reconciliation of cultural differences, especially the potential contradictions of combining traditional Chinese medicine with Western medical approaches to pain and symptom management for their advanced cancer. CR3, who had stage 4 brain cancer, often referred to books on traditional Chinese medicine for remedies to his ailments. He shared his experience with chemotherapy and managing side effects: So I would have to go to the hospital and see the doctor for checkups because there were a couple of things that I didn’t have: I wasn’t vomiting, I wasn’t dizzy, and I didn’t have pain. Because you know what I did, I would take raw ginger. As soon as I felt something in my throat, I would take a piece of raw ginger and put it in my mouth and chew. It is good for preventing nausea. (CR3, translated)
CR3 seamlessly integrated this knowledge into his symptom management regimen. This knowledge was pragmatically enfolded into his chemotherapy routine. CR3 felt knowledgeable and comfortable with combining traditional Chinese medicine and his Western medical regimen to suit his symptomatic needs. Thus, the discursive tension between traditional Chinese
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376 medicine and Western medicine was most discomforting for HCPs. Rethinking language barriers. Most Chinese immigrant care recipients and their family caregivers who did not speak English relied heavily on either professional interpreters or Englishspeaking family members to help them navigate doctor’s appointments. Care recipients and families were resilient in the ways they addressed language barriers. They often developed sophisticated approaches to work around language barriers. The ways in which care recipients and family caregivers addressed language barriers showed how tacit knowledge surfaced and was blended within the everyday. These hybrid approaches were borne out of necessity. For instance, this caregiver devised a way to help his father deal with the anxiety of filling out English-language forms at medical appointments so that he would not have to take time off work to accompany his father to every appointment: So, for example, I have to take him to get an magnetic resonance imaging (MRI), which was every month. He wouldn’t know how to fill out the form before going there, but it’s the same type of things. So to make it easier on him and my mom, I basically just go through it with him, check off the stuff that’s supposed to be checked off and do a copy for him and then he can do it himself. (CG3S)
Family caregivers, who spoke English, were depended upon as translators and felt the burden of being available to help interpret for their ill family member. Many of these family caregivers had to negotiate between strategies that took into account competing demands so that the care recipient would not be abandoned due to lack of communication abilities while at the same time fulfilling caregivers’ commitments to employment and their own families as well. Too often, a language barrier is seen as a hindrance to communication in the clinical encounter, but in actuality, it had a cascading effect which required effective negotiation and management in many facets of life. Most HCPs also talked about the issues of working with care recipients and families who did not speak English. Health care providers felt that being able to communicate was crucial to providing good palliative home care. The HCPs who did not speak Cantonese or Mandarin explained the difficulties in providing palliative home care to non-English speaking Chinese immigrant care recipients. This palliative home care physician explained: . . . I think when you then introduce a layer of linguistic or cultural difference into that mix, you then have another layer of complications. Some agencies will try and make an effort, for instance, if you have a palliative client and family who speak only Cantonese or speak only Mandarin, they will try and match the nurse. . . . But sometimes their language capability doesn’t translate into their clinical capabilities so you might have a clinically more capable nurse in palliative care who can’t speak Cantonese or Mandarin, or you get a Cantonese-assigned nurse who has no interest or experience in palliative care. (KI10)
This palliative physician aptly noted that while it seemed logical to match language capability between home care nurses and care recipients, this practice did not always result in the best care. Furthermore, provider narratives alluded to the real challenges of working with language differences and demonstrated the tacit knowledge of language barriers. This home care nurse explained that although she was Chinese and had been matched with a Chinese patient, resolution of the language barrier was mostly assumed. She admitted that communication between her and the care recipient was often difficult: They think they can speak Mandarin but the way she speaks Mandarin, I thought she was speaking Cantonese. Half the time I don’t understand . . . it’s really a language barrier because when I explain something to her, she will say, ‘‘Yeah, yeah I know’’ but in the end she would do something that’s different. (HCP2)
The logics of matching for linguistic ability did not work in this case, and thus, the language barrier became silenced and subjugated. What became clear was that home care nurses and care recipients were not necessarily being matched for linguistic similarities, but rather for assumed cultural and racial similarities. These complicated interpretations shed a critical light on the notion of matching for language. Language is one way in which knowledge is conveyed, and so the inability to express their way of knowing in a mutually understood language meant that care recipients’ and caregivers’ knowledge were silenced. Hence, the issues of communication went beyond just a language barrier.
Discussion Decentering to Recenter: Negotiating the Discourse of Cultural Difference in Palliative Home Care The findings point to some salient features of palliative home care, which HCPs must contend with in practice. The HCPs did not discriminate that the taboo of dying at home was exclusively a characteristic of Chinese immigrants with advanced cancer as they discussed the silence around death in relation to other immigrant groups as well; yet that stereotype persisted strongly with reference to Chinese immigrants among HCPs. At the same time, HCPs were conscious that end-of-life issues are just that, issues for people that are dying regardless of their ethnic background. In a qualitative synthesis conducted by Bosma et al on cultural conceptualizations of palliative care, the authors concluded that the scope of palliative care was relatively generic across cultures.40 In fact, they found that there were more similarities than differences between ethnocultural groups’ understandings of what palliative care should address and entail.40 Thus, it is important to understand that while these findings were discussed in relation to Chinese immigrants, the HCPs recognized that these findings and the discussion may be relevant for all immigrants facing a terminal cancer prognosis. Because they worked in the domain of someone else’s home, home care nurses were acutely sensitive to cultural
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differences, which contributed to their difficulties in service provision as they observed contradictions and ambiguity in their expectations and what they encountered in providing palliative home care to Chinese immigrants. The significance of patient-centered care and cultural competence to quality palliative care has been noted in the existing literature.20,41-45 The emphasis on patient-centered care in palliative care was seen to be in conflict with a simultaneous emphasis on culturally competent care for HCPs in this study. Although the two discourses should, in theory, work together to get at the individual beliefs and goals of the care recipient, this was not necessarily how the combination played out in practice. The core of both cultural competence and patient-centered care is the need to see the patient as a unique person,46 and in order to deliver care that recognizes the individuality of the patient, the cultural diversity of patients’ perspectives must also be accounted for. The argument may seem logical enough, but it lacks critical interpretation of how HCPs interpret culture and how these interpretations manifest in practice. The difficulty lies in the fact that when we ask HCPs to be culturally competent, we are asking them to be knowledgeable and aware of a shared cultural belief system while at the same time insisting that they may be patient-centered and continually place the individuality of the patient first. There is a mismatch between the discourses because categorizing and positioning a patient as having shared cultural beliefs is counterproductive to understanding and working with individuality. Kemp argues that ‘‘applying generalizations to all people from a culture is stereotyping.’’42(p45) Although this may be a valid point, we cannot discount that stereotypes do exist and they may exist for no other reason than as a persistent shared belief among many people. If patient-centered care includes striving to understand the cultural beliefs of a care recipient, then we must acknowledge that part of our understanding may come from potentially stereotypical generalizations. Thus, in recognizing that HCPs are not exempt from holding stereotypes, the contradictions in providing palliative home care to immigrants may be less problematic and we can actually begin to deconstruct what a stereotype may look like in practice. The observation that matching care recipients and HCPs for language did not always benefit the care recipient shed light on how cultural essentialism worked in tandem with the conflation of culture, race, ethnicity, and language. Although care recipients may be matched with a nurse that spoke the same language, that nurse may not be as experienced with providing palliative home care. In fact, this informal policy of matching for language/race often created practice discord for home care nurses as language was narrowly defined and did not always account for the nuances in language (ie, dialects). It is through a postcolonial lens that we can see how the interchangeable use of culture, race, ethnicity, and language has significant ramifications to the provision and receipt of palliative home care. By decentering how culture has been traditionally used, we can recenter practice on a more critical understanding and transparent use of culture that acknowledges the insidious persistence of race in health care. Often standardized forms and practice policies do not account for the contextual
variations between care recipients within practice settings, thus resulting in incongruous and misleading practices, such as matching for language/race. In addition, care recipients indicated that their decisions about place of care and place of death were contextually informed and not based on taboos about death in the home; their narratives helped to recenter knowledge back to the contextual and the situational.
Reconsidering Negotiation Negotiation became a tenuous term for HCPs when providing end-of-life care in the home. According to West and Olson, negotiation is often superficially constructed as a civilized strategy to reach consensus and maintain the status quo, but they offer a more critical perspective of negotiation as a liberating opportunity to grapple and work through differences.47 West and Olson see negotiation as analogous to hybridity because both are related to cultural translation, rearticulation, and enactment of change.47 This critical and liberating conceptualization of negotiation highlights the complexity of hybridity and palliative home care while remaining sensitive to participants’ efforts to reposition themselves to achieve their palliative care goals. Many of the care recipients used traditional Chinese medicine in conjunction with what was prescribed by their oncologists. Although the use of traditional Chinese medicine was a source of concern for HCPs, care recipients often spoke confidently and knowledgeably about the benefits of traditional Chinese medicine and Eastern philosophies of health and illness. In this way, care recipients negotiated a hybridized approach to pain and symptom management and squarely recentered knowledge of cancer and of their own bodies back within their own domain.
Strengths and Limitations The challenges of recruiting palliative patients into research, and in particular home care research, has been noted in the literature48; thus, a strength of this study was the inclusion of care recipients who were currently receiving palliative home care rather than retrospectively interviewing family caregivers who had provided care to a dying family member. Although care recipients facing terminal cancer are considered a vulnerable population, Kristjanson et al argue that dying persons are still considered autonomous beings that have the right to decide whether to participate in research.49 Furthermore, a postcolonial lens involves illuminating the subjugated knowledge of marginalized groups, which underscores the ethical mandate to offer patients with advanced cancer the choice to participate in research. Although the findings may not be generalizable, they do provide insight into the not-sowell-understood experiences of Chinese immigrants with advanced cancer managing palliative care in the community.
Implications and Conclusion Training on cultural competence needs to move away from models that portray cultural beliefs and practices as shared,
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378 fixed patterns and take into account the complicated reality of everyday care provision.44 Engebretson et al also contend that clinical application of cultural competence to care is difficult for HCPs because of the lack of conceptual clarity, especially ‘‘essentializing culture to race and ethnicity.’’50(p172) The findings from this study point to the need for a critical perspective in cultural competence that acknowledges that HCPs may hold assumptions and that these assumptions are best worked through when they are transparent and openly discussed. Admittedly, this is difficult because most people are not usually aware of their assumptions. Thus, in addressing the discursive tensions between patientcentered care and cultural competence, the message in practice, policy, and education should be clear in its simplicity that HCPs try to understand personal beliefs regardless of country of origin, race, or ethnocultural background. One of the immediate policy changes that must take place to positively affect practice is to address and reconsider the matching of home care nurses and care recipients based on what appears to be language, but in actuality, is race. The current approach to matching oversimplifies culture and does not always recognize the heterogeneity of Chinese immigrants. Matching for language also ignores the significant point that in spite of ethnocultural background, care recipients and family caregivers wanted home care nurses who were proficient and knowledgeable about palliative care. As Bosma et al point out, the basic needs at end-of-life cut across assumed cultural beliefs40; therefore, matching for language may not always result in optimal care being offered to Chinese immigrant care recipients. This study highlights the complexity of palliative home care and the meanings associated with dying at home for Chinese Canadian immigrants. Postcolonial theory offered a critical and reflexive approach to understand how meanings of home conditioned negotiations of care between Chinese immigrants receiving palliative home care, family caregivers, and HCPs. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. Authors’ Note Actual work was done at Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Toronto, Ontario, Canada M5T 1P8.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
Supplemental Material The online supplement is available at http://ajh.sagepub.com/ supplemental.
References 1. Guerriere DN, Zagorski B, Fassbender K, Masucci L, Librach L, Coyte PC. Cost variations in ambulatory and home-based palliative care. Palliat Med. 2010;24(5):523-532. 2. Lilly MB, Laporte A, Coyte PC. Do they care too much to work? The influence of caregiving intensity on the labour force participation of unpaid caregivers in Canada. J Health Econ. 2010;29(6):895-903. 3. Romanow R. Commission on the future of health care in Canada. http://publications.gc.ca/collections/Collection/CP32-85-2002E. pdf. Published November 2002. Accessed October 25, 2013. 4. Oresland S, Maata S, Norberg A, Jorgensen MW, Lutzen K. Nurses as guests or professionals in home health care. Nurs Ethics. 2008;15(3):371-383. 5. Statistics Canada. Visible minority groups, 2006 counts, for Canada, provinces, territories. Statistics Canada. http://www12. statcan.gc.ca/census-recensement/2006/dp-pd/tbt/Rp-eng.cfm? TABID¼1&LANG¼E&A¼R&APATH¼3&DETAIL¼0&DIM¼ 3&FL¼A&FREE¼0&GC¼01&GID¼837928&GK¼1&GRP¼ 1&O¼D&PID¼92338&PRID¼0&PTYPE¼88971,97154&S¼0& SHOWALL¼0&SUB¼0&Temporal¼2006&THEME¼80&VID¼ 14473&VNAMEE¼&VNAMEF¼&D1¼0&D2¼0&D3 ¼0&D4¼ 0&D5¼0&D6¼0. Published April 2008. Accessed October 25, 2013. 6. Statistics Canada. Visible minority groups, generation status, age groups, and sex for the population 15 years and over of Canada, provinces, territories, census metropolitan areas, 2006 census. Statistics Canada. http://www12.statcan.gc.ca/census-recensement/ 2006/dp-pd/tbt/Rp-eng.cfm?LANG¼E&APATH¼3&DET AIL¼ 0&DIM¼0&FL¼A&FREE¼0&GC¼0&GID¼0&GK¼0&GRP¼ 1&PID¼92337&PRID¼0&PTYPE¼88971,97154&S¼0 & SHOWALL¼0&SUB¼0&Temporal¼2006&THEME¼80&VID¼ 0&VNAMEE¼&VNAMEF¼. Published April 2008. Accessed October 25, 2013. 7. Canadian Cancer Society. What is a risk factor? Age. Canadian Cancer Society. http://www.cancer.ca/en/cancer-information/ cancer-101/what-is-a-risk-factor/age/?region¼on. Published 2013. Accessed October 25, 2013. 8. Douglas M. The idea of a home: a kind of space. Soc Res. 1991; 58(1):288-307. 9. Seto Nielsen L, Angus JE, Gastaldo D, Howell D, Husain A. Maintaining distance from a necessary intrusion: a postcolonial perspective on dying at home for Chinese immigrants in Toronto, Canada. Eur J Oncol Nurs. 2013;17(5):649-656. 10. Li P. Chinese in Canada. 2nd ed. Toronto, Ontario: Oxford University Press; 1998. 11. Liu X-F, Norcliffe G. Closed windows, open doors: geopolitics and post-1949 mainland Chinese immigration to Canada. Can Geogr. 1996;40(4):306-319. 12. Leung C, Guan J. Yellow peril revisited: impact of SARS on the Chinese and Southeast Asian Canadian Communities. http:// www.ccnc.ca/sars/SARSReport.pdf. Published June 2004. Accessed October 25, 2013. 13. Reitmanova S, Gustafson DL. Exploring the mutual constitution of racializing and medicalizing discourses of immigrant Tuberculosis in the Canadian press. Qual Health Res. 2012;22(7):911-920.
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14. Burge F, Lawson B, Johnston G. Trends in the place of death of cancer patients, 1992-1997. Can Med Assoc J. 2003;168(3):265-270. 15. Neutel CI, Bishop ML, Harper SD, Gaudette LA. Proportion of cancer deaths occurring in hospital, Canada, 1994-2000. Can J Public Health. 2005;96(4):264-268. 16. Wilson DM, Truman CD, Thomas R, et al. The rapidly changing location of death in Canada, 1994-2004. Soc Sci Med. 2009; 68(10):1752-1758. 17. Braun KL, Nichols R. Death and dying in four Asian American cultures: a descriptive study. Death Stud. 1997;21(4):327-359. 18. Wong MS, Chan SW-C. The experiences of Chinese family members of terminally ill patients—a qualitative study. J Clin Nurs. 2007;16(12):2359-2364. 19. Yick AG, Gupta R. Chinese cultural dimensions of death, dying, and bereavement: focus group findings. J Cult Divers. 2002;9(2): 32-43. 20. Payne S, Chapman A, Holloway M, Seymour JE, Chau R. Chinese community views: promoting cultural competence in palliative care. J Palliat Care. 2005;21(2):111-116. 21. Bruera E. Ethical issues in palliative care research. J Palliat Care. 1994;10(3):7-9. 22. Colon M, Lyke J. Comparison of hospice use and demographics among European Americans, African Americans, and Latinos. Am J Hosp Palliat Care. 2003;20(3):182-190. 23. Enguidanos S, Yip J, Wilber K. Ethnic variation in site of death of older adults dually eligible for medicaid and medicare. J Am Geriatr Soc. 2005;53(8):1411-1416. 24. Weitzen S, Teno JM, Fennell M, Mor V. Factors associated with site of death: a national study of where people die. Med Care. 2003;41(2):323-335. 25. Coupland VH, Madden P, Jack RH, Moller H, Davies EA. Does place of death from cancer vary between ethnic groups in South East England? Palliat Med. 2011;25(4):314-322. 26. Seymour J, Payne S, Chapman A, Holloway M. Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Sociol Health Illn. 2007;29(6): 872-890. 27. Abelson J, Gold ST, Woodward C, O’Connor D, Hutchison B. Managing under managed community care: the experiences of clients, providers and managers in Ontario’s competitive home care sector. Health Policy. 2004;68(3):359-372. 28. Masucci L, Guerriere DN, Cheng R, Coyte PC. Determinants of place of death for recipients of home-based palliative care. J Palliat Care. 2010;26(4):279-286. 29. Randall GE, Williams AP. Exploring limits to market-based reform: managed competition and rehabilitation home care services in Ontario. Soc Sci Med. 2006;62(7):1594-1604. 30. Williams AM. Restructuring home care in the 1990s: geographical differentiation in Ontario, Canada. Health Place. 2006;12(2): 222-238. 31. Dudgeon DJ, Vaitonis V, Seow H, King S, Angus H, Sawka C. Ontario, Canada: using networks to integrate palliative care province-wide. J Pain Sympt Manage. 2007;33(5):640-644. 32. Seow H, King S, Vaitonis V. The impact of Ontario’s end-of-life strategy on end-of-life care in the community. Healthc Q. 2008; 11(1):56-62.
33. Anderson JM, Rodney P, Reimer-Kirkham S, Browne AJ, Khan KB, Lynam J. Inequities in health and healthcare viewed through the ethical lens of critical social justice: contextual knowledge for the global priorities ahead. Adv Nurs Sci. 2009;32(4):282-294. 34. Narayan U, Harding S. Introduction. In: Narayan U, Harding S eds. Decentering the Center. Bloomington, IN: Indiana University Press; 2000:i-xvi. 35. Tuhiwai Smith L. Decolonizing Methodology. London, UK: ZED Books; 1999. 36. Ashcroft B, Griffiths G, Tiffin H. Postcolonial Studies: The Key Concepts. 2nd ed. London, UK: Routledge; 2007. 37. Bhabha H. The Location of Culture. London, UK: Routledge; 2004/1994. 38. Spence S. Race and Ethnicity: Culture, Identity and Representation. London, UK: Routledge; 2006. 39. Kalscheuer B. Encounters in the third space: links between intercultural communication theories and postcolonial approaches. In: Ikas K, Wagner G, eds. Communicating in the Third Space. New York, NY: Routledge; 2009:26-48. 40. Bosma H, Apland L, Kazanjian A. Cultural conceptualizations of hospice palliative care: more similarities than differences. Palliat Med. 2010;24(5):510-522. 41. Feser L, Bernard CB. Enhancing cultural competence in palliative care: perspective of an elderly Chinese community in Calgary. J Palliat Care. 2003;19(2):133-139. 42. Kemp C. Cultural issues in palliative care. Semin Oncol Nurs. 2005;21(1):44-52. 43. Ngo-Metzger Q, August KJ, Srinivasan M, Liao S, Meyskens FL. End-of-life care: guidelines for patient-centered communication. Am Fam Physician. 2008;77(2):167-174. 44. Owens A, Randhawa G. ‘It’s different from my culture; they’re very different’: providing community-based ‘culturally competent’ palliative care for South Asian people in the UK. Health Soc Care Community. 2004;12(5):414-421. 45. Yedidia M. Transforming doctor–patient relationships to promote patient-centered care: lessons from palliative care. J Pain Symptom Manage. 2007;33(1):40-57. 46. Beach MC, Saha S, Cooper LA. The role and relationship of cultural competence and patient-centeredness in health care quality. The Commonwealth Fund. http://www.commonwealthfund.org/ Publications/Fund-Reports/2006/Oct/The-Role-and-Relationshipof-Cultural-Competence-and-Patient-Centeredness-in-HealthCare-Quality.aspx. Published October 2006. Accessed October 25, 2013. 47. West T, Olson GA. Rethinking negotiation in composition studies. JAC. 1999;19(2):241-251. 48. Ewing G, Rogers M, Barclay S, McCabe J, Martin A, Todd C. Recruiting patients into a primary care based study of palliative care: why is it so difficult? Palliat Med. 2004;18(5):452-459. 49. Kristjanson LJ, Hanson EJ, Balneaves L. Research in palliative care populations: ethical issues. J Palliat Care. 1994;10(3): 10-15. 50. Engebretson J, Mahoney J, Carlson ED. Cultural competence in the era of evidence-based practice. J Prof Nurs. 2008;24(3): 172-178.
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Patient-Centered Care or Cultural Competence: Negotiating Palliative Care at Home for Chinese Canadian Immigrants
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 372-379 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114527338 ajhpm.sagepub.com
Lisa Seto Nielsen, RN, PhD1, Jan E. Angus, RN, PhD2, Doris Howell, RN, PhD2,3, Amna Husain, MD4, and Denise Gastaldo, RN, PhD2
Abstract The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home. Keywords patient-centered care, cultural competence, palliative care, home care, Chinese immigrants, negotiation, postcolonial theory, hybridity
Introduction In Canada, the growth in demand for home-based care has prompted a trend toward palliative care delivered in the home.1-3 Palliative home care is socially negotiated because the care, although directed toward dying care recipients, changes the routine of others in affected households as well. The goals of home health care providers (HCPs) are complimentary but different from those of the care recipient and family, which involves ongoing negotiation of care plans and activities.4 Since Canada is an ethnoculturally diverse nation, coordination and negotiation of care-related goals and activities may be further complicated by dissimilar ethnic or cultural backgrounds, especially if there are language barriers. Chinese immigrants make up one of the largest minority groups in Canada.5 There is a growing segment of Chinese immigrants older than 65 years of age living in Canada,6 and the risk of developing cancer increases with age.7 Thus, in this article, we highlight the palliative home care experiences of Chinese Canadian immigrants with advanced cancer. Just as migrants have negotiated journeys that take them from one home to another in new countries, death is another journey that migrants must eventually navigate as well. These journeys involve unfamiliar terrain but are accomplished by drawing on biographically accumulated knowledge, experiences, and assumptions that may even link multiple meanings
of home for immigrants. Care recipients and family caregivers must negotiate care with palliative care providers, but more profoundly, all must negotiate a process of dying that accommodates various purposes and meanings of home. Thus, the home is a contentious site because it is not always a peaceful place for dying but is a space that houses multiple and competing interests.8 This article shares findings from a study that examined the meanings of home and negotiations of care between Chinese immigrants receiving palliative home care, their family caregivers, and home HCPs and relates to a pervious article that examined the encroachment of palliative home care into Chinese immigrant homes and the ways they resisted this intrusion.9 Thus, in this article, the focus is on the
1
School of Nursing, York University, North York, Ontario, Canada Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada 3 Ontario Cancer Institute, Princess Margaret Hospital, Toronto, Ontario, Canada 4 Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto, Ontario, Canada 2
Corresponding Author: Lisa Seto Nielsen, RN, PhD, Faculty of Health, School of Nursing, York University, HNES 310, 4700 Keele Street, Toronto, Ontario, Canada M3J 1P3. Email: [email protected]
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discursive tensions present in home care policies when providing palliative home care to Chinese immigrants.
Background Chinese immigrants and place of death. The first large-scale migration of Chinese to Canada began in 1858 but it should be noted that the historical context of Chinese migration to Canada is characterized by institutional racism as the Canadian government enacted legislations and enforced policies, such as the Chinese Immigration Act, 1923, which sought to control, limit, and stop the migration of Chinese people to Canada.10,11 Although the law was finally repealed in 1947,10 the legacy of discriminatory policies may influence Chinese immigrants’ beliefs about health and illness, access to care, and experiences of dying at home. Issues of racialization and health disparities continue to be a concern for immigrants as seen in the discrimination and harassment of Chinese and Asian immigrants during the outbreak of severe acute respiratory syndrome and the racial discourse of tuberculosis in Canada.12,13 The emphasis needs to shift beyond merely exploring beliefs about death and dying to incorporate the geopolitical forces that shape people’s experiences.9 Population-based statistics show an overall trend toward a decline in cancer deaths in hospitals and a gradual increase in home deaths across Canada,14-16 but there is no known statistical data on home death rates for Chinese immigrants. Anecdotally, there is a perception that Chinese immigrants do not prefer to die at home. This is in direct tension with the growing emphasis on supporting home deaths. The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is a common assumption that dying at home is not the preferred option.17-20 These assumptions, among others, build stereotypes about the Chinese immigrant population and fail to recognize marked differences within this immigrant group. Ethnic variation in preference for place of death has been reported in a number of quantitative studies examining place of death in the United States21-24 and United Kingdom.25 These studies generally reported that individuals of Asian and Chinese descent were less likely to prefer a home death and/or less likely to die at home.23,25,26 It is important to be critical of how these findings may be interpreted, as they may inadvertently blame culture for some people’s inability to die at home. Although it may appear that ethnocultural minority groups are less likely to die at home, it does not mean that culture or ethnicity is the cause of the phenomenon; thus, it is important not to attribute causality where at best an association can only be established. Intersection of home care and palliative care in Canada. Home care is one of the fastest growing components of the health care system in Canada.3 This growth has been attributed to the changes in demographic and life expectancy rates of Canadians and has resulted in an ‘‘aging in place’’ health services delivery policy.2,27,28 The relocation of health care into homes and out of institutions has been attributed to health care ‘‘reforms’’ that
have been characterized by fiscal constraints, cost efficiency, decline in the economy, and cost-saving attempts.29,30 There has been a corresponding increase in the range and intensity of services outside of hospitals, including home-based palliative care. Thus, end-of-life care networks in the community have been developed to support and implement service delivery models to integrate and improve palliative care in the home but no integrated programs have been developed to service the immigrant population.31,32
Theory Postcolonial Theory In this study, the analysis engaged a postcolonial lens to adopt a critical conceptualization of culture that helped to deepen thinking and understanding of Chinese immigrant experiences of palliative home care. Similar to other critical perspectives, postcolonial theory is concerned with decentering knowledge and power to recenter and shift focus on those who have been historically marginalized and silenced.33-35 This shift opens space for drawing attention to subjugated knowledges and to tease out what Anderson et al theorize as contextual knowledge.33 Contextual knowledge refers to knowledge constructed in the context of individual experiences and informs us of how social positions contribute to marginalization and inequities.33 By understanding the meaning and context of how inequities manifest in health care, we can begin to challenge dominant discourses permeated with cultural essentialism, which assigns similar attributes to all members of a group.33 Rather than focusing on stereotypical discourses of cultural beliefs and taboos, research with a critical framework seeks contextual knowledge in order to illuminate the economic, political, and sociohistorical conditions that contribute to people’s experiences of health and illness. Hybridity. Postcolonial scholars conceptualize hybridity as a way to challenge essentialism, the false assumption that members of a group or category are defined exclusively by one or several key characteristics.36 Bhabha writes that migrants negotiate their identity in-between the old and the new spaces, which he calls the Third Space where newness emerges.37 This newness represents the hybrid of culture that emerges when the migrant’s cultural beliefs (old) intermingle with the beliefs of the society they are now trying to integrate with (new). It is in the intercultural exchanges where hybridity has become significant in health care encounters, because this is where the culture of medicine collides with patients’ ways of knowing and being. It should be noted that some scholars warn against being carried away by the ‘‘antiessentialist euphoria’’ associated with hybridity, urging attentiveness to ‘‘real-life experiences of living ‘between culture,’ not as a romanticized concept but as a challenging and at times painful negotiation between attitudes and values that are resistant to merging.’’38(p194) As an analytic tool, hybridity forefronts learning from participants and being flexible in understanding which meanings are resistant to
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374 Table 1. Demographics of Care Recipients. Case Case Case Case Case
1 2 3 4
Care recipient
Sex
Cancer site
CR1 CR2 CR3 CR4
F M M F
Lung Liver Brain Lung
Primary family caregivers Spouse Spouse Spouse Spouse
(CG1) (CG2) (CG3); adult child (CG3S) (CG4)
Home care nurse HCP1 HCP2 HCP2 HCP3
Abbreviations: F, female; M, male; CG, caregiver; HCP, health care provider.
merging within, for example, daily activities and interactions related to palliative home care for immigrant families. Home as the Third Space. The Third Space is not an actual physical place but, in this study, is conceptualized within Chinese immigrant care recipients’ homes where care recipients occupy the space in-between living and dying. The home is both a site of palliative services and activities of daily living. It is in the interactions and exchanges between Chinese immigrants with advanced cancer, family caregivers, and home HCPs where cultural differences collide in the domestic sphere during palliative home care and where the threshold of home as the Third Space becomes apparent. Thus, the home, conceptualized as the Third Space, becomes the border zone where migrants must contend with cultural differences and where culture’s hybridity emerges to disrupt dominant discourses.37,39
Methodology and Methods Ethical approval was obtained from participating institutions’ research ethics boards. A focused ethnographic study was conducted and drew on the tenets of postcolonial theory to examine how palliative home care was negotiated within the shifting context and meanings of home for Chinese immigrants with advanced cancer, their family caregivers, and HCPs. The study took place in a diverse, urban centre in Ontario, Canada. The methodology, methods, data analysis, and participant description have been reported in detail in the aforementioned article.9
Results In summary, 2 male and 2 female care recipients with advanced cancer receiving palliative home care, ranging in age between 50 and 80 years, were recruited (see Table 1). All care recipients identified their spouses as their main caregivers. Along with the 11 key informants (KI), these 4 cases consisted of 12 individuals that contributed to a rich description of the experiences of dying at home for Chinese immigrants and represented a robust sample. The care recipients in the study had been classified as palliative between 2 and 7 years. The term palliative usually refers to patients with shorter survival rates; it is important to emphasize that while this study population may not be typical, in that they were not actively dying but stable, this also made them more receptive to participating in the study. There are few studies that engage palliative home care patients, especially immigrants, and so this is viewed as a strength of the study. As well, this sample points to the ambiguity of prognosis patients with terminal
cancer often face and adds to the complexity this sample had to contend with when negotiating and navigating palliative care in the home.
Negotiating Care Three key themes came up frequently among participants: (1) the many facets of taboo; (2) discursive tensions; and (3) rethinking language barriers. The many facets of taboo. There was a pervasive assumption among many of the key informants and HCPs that death was a taboo topic and that dying at home was not the preferred option for Chinese Canadian immigrant care recipients. A home care case manager, who was also a Chinese immigrant, admitted that she did not believe that Chinese care recipients wanted to die at home because of a superstition: If they die at home, their home cannot be re-sell (KI1). Many key informants and HCPs shared similar stories of caring for Chinese immigrants receiving palliative home care. Often they felt that Chinese immigrant care recipients wanted to be cared for at home until they were actively dying, at which time, they wanted to be transferred to a palliative unit or hospice where the actual death would take place. Through these experiences, HCPs implicitly inferred it was a cultural belief that Chinese immigrants did not want to die at home. Discussing and planning for end-of-life care did occur for some Chinese immigrant families. This care recipient had stage 4 lung cancer and shared how she had to reconcile her desire for a home death along with her understanding of the supports available, especially the strain it would place on her husband as her main caregiver. There were multiple intersecting considerations she had to take into account as she planned for end-oflife care. She explained: In fact at the very beginning, I don’t want to die at home. I want to go into the hospital to have palliative care. But my son and my daughter-in-law, they were so strong about being at home . . . So, I do understand now that if I opt to stay at home, I will have all of this support. But still after I think about it, that is not enough. And I talk to my son and daughter-in-law, just me and dad in this apartment, even with all those support—that is not enough . . . So my decision is that I will opt to spend my last days in the palliative care unit. (CR1)
Although her final decision to not die at home could be construed as a cultural belief, it went beyond that and was seen
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in the hybrid and negotiated aspect of her decision could be seen in her rationalization. She recognized the multiple, and often, competing considerations she held and had to put it together in a way that would result in a satisfactory path to her last days. Although her discussions with her son and daughterin-law may indicate an openness to planning for her death, there evidently was something not being discussed—she was concerned that she would not receive the care required in the final stages and that she did not want to rely too heavily on her family. In this sense, she was silenced and there was subjugation of knowledge, fears, and anxieties. Similarly, a community palliative nursing consultant also speculated that some Chinese immigrant care recipients were silenced in expressing their desire to die at home because they feared burdening their family members. Simply put, he stated of Chinese immigrant care recipients: Almost all of them, they don’t want to be burden to the family (KI5). Although HCPs conveyed a belief that Chinese immigrants did not want to die at home because of superstitions associated with the home, it may actually be that care recipients were choosing to die in hospitals, palliative units, and hospices to avoid imposing on family members. Some HCPs also felt that the preference to die in a hospital was more than just a cultural taboo. A home care nurse, who was an immigrant from Hong Kong, explained: From my sense, I don’t think they 100% understand what is the palliative care for them . . . In China or in Hong Kong, we don’t have the home care. If you feel sick, you will stay in hospital. If you’re okay, you recover, then you go home. (KI7)
This HCP understood that there was a difference between the Canadian health care system and that of their country of origin. The understanding that illness and dying were treated differently within the two health care systems resulted in this nurse’s interpretation that Chinese immigrants may have a different understanding of palliative home care. Participants had to negotiate multiple, intersecting considerations to address the issue of dying at home. Thus, it was too simplistic to attribute the refusal to die at home as a cultural taboo. Stereotypes could be perpetuated by superficial observations rather than through a careful exploration for the logics behind the lack of willingness to die at home. Without probing further, Chinese immigrants are silenced in expressing their pragmatic, contextual concerns for dying at home. Discursive tensions. All HCPs seemed to struggle to reconcile the discourses of patient-centered care and cultural competence. Health care providers had difficulties in explaining how these seemingly compatible discourses actually worked together in practice. One HCP talked about strategies for negotiating through tense, often confusing encounters within palliative home care. This community palliative nursing consultant explained that she tried to come to know care recipients’ and families’ preferences and expectations, and how this aligned with her role as a HCP. She recognized that, regardless of
ethnocultural background, some issues at end of life were the same for most care recipients: I never had a clear vision because I saw so many different variations. You know everything from the extreme example in my mind was a daughter, I actually was yelled at by a daughter on the telephone for talking openly in front of her dad who was the patient, ‘‘Don’t you know Chinese people don’t like to talk about dying?’’ To a [Chinese] family sitting around the table and welcoming and being very open with me and doing very active decision-making and planning. . . . I am always reluctant to make big statements about any culture because you see so much variation. (KI8)
Her anecdotes appear to contradict but that is an apparent property of hybridity. The aim of negotiation was to reconcile the irreconcilable, and HCPs had to rationalize and make sense of their struggles with this task. Her contradictory statements indicated the complexity for HCPs of blending together knowledge, experiences, perceptions, and assumptions to bring reason to their actions and approaches to care. These rationalizations were often messy because practice was messy. More simply, when asked whether there were differences in working with Chinese immigrants and other ethnocultural groups, HCP1 was adamant in her response: There is no difference. You’re dealing with a dying patient. (HCP1). In reconciling her knowledge of culture and her role as a palliative home care nurse, she implied that there were prominent end-of-life care needs and concerns for care recipients that took precedence over culture. The shared experience of dying from cancer precluded culture, ethnicity, race, and religion. Evidently, the discursive tensions were not as apparent with care recipients and family caregivers because they were not working between the same practice discourses but they were working between cultural differences. In contrast to the struggles of HCPs, care recipients and caregivers were able to more seamlessly describe the reconciliation of cultural differences, especially the potential contradictions of combining traditional Chinese medicine with Western medical approaches to pain and symptom management for their advanced cancer. CR3, who had stage 4 brain cancer, often referred to books on traditional Chinese medicine for remedies to his ailments. He shared his experience with chemotherapy and managing side effects: So I would have to go to the hospital and see the doctor for checkups because there were a couple of things that I didn’t have: I wasn’t vomiting, I wasn’t dizzy, and I didn’t have pain. Because you know what I did, I would take raw ginger. As soon as I felt something in my throat, I would take a piece of raw ginger and put it in my mouth and chew. It is good for preventing nausea. (CR3, translated)
CR3 seamlessly integrated this knowledge into his symptom management regimen. This knowledge was pragmatically enfolded into his chemotherapy routine. CR3 felt knowledgeable and comfortable with combining traditional Chinese medicine and his Western medical regimen to suit his symptomatic needs. Thus, the discursive tension between traditional Chinese
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376 medicine and Western medicine was most discomforting for HCPs. Rethinking language barriers. Most Chinese immigrant care recipients and their family caregivers who did not speak English relied heavily on either professional interpreters or Englishspeaking family members to help them navigate doctor’s appointments. Care recipients and families were resilient in the ways they addressed language barriers. They often developed sophisticated approaches to work around language barriers. The ways in which care recipients and family caregivers addressed language barriers showed how tacit knowledge surfaced and was blended within the everyday. These hybrid approaches were borne out of necessity. For instance, this caregiver devised a way to help his father deal with the anxiety of filling out English-language forms at medical appointments so that he would not have to take time off work to accompany his father to every appointment: So, for example, I have to take him to get an magnetic resonance imaging (MRI), which was every month. He wouldn’t know how to fill out the form before going there, but it’s the same type of things. So to make it easier on him and my mom, I basically just go through it with him, check off the stuff that’s supposed to be checked off and do a copy for him and then he can do it himself. (CG3S)
Family caregivers, who spoke English, were depended upon as translators and felt the burden of being available to help interpret for their ill family member. Many of these family caregivers had to negotiate between strategies that took into account competing demands so that the care recipient would not be abandoned due to lack of communication abilities while at the same time fulfilling caregivers’ commitments to employment and their own families as well. Too often, a language barrier is seen as a hindrance to communication in the clinical encounter, but in actuality, it had a cascading effect which required effective negotiation and management in many facets of life. Most HCPs also talked about the issues of working with care recipients and families who did not speak English. Health care providers felt that being able to communicate was crucial to providing good palliative home care. The HCPs who did not speak Cantonese or Mandarin explained the difficulties in providing palliative home care to non-English speaking Chinese immigrant care recipients. This palliative home care physician explained: . . . I think when you then introduce a layer of linguistic or cultural difference into that mix, you then have another layer of complications. Some agencies will try and make an effort, for instance, if you have a palliative client and family who speak only Cantonese or speak only Mandarin, they will try and match the nurse. . . . But sometimes their language capability doesn’t translate into their clinical capabilities so you might have a clinically more capable nurse in palliative care who can’t speak Cantonese or Mandarin, or you get a Cantonese-assigned nurse who has no interest or experience in palliative care. (KI10)
This palliative physician aptly noted that while it seemed logical to match language capability between home care nurses and care recipients, this practice did not always result in the best care. Furthermore, provider narratives alluded to the real challenges of working with language differences and demonstrated the tacit knowledge of language barriers. This home care nurse explained that although she was Chinese and had been matched with a Chinese patient, resolution of the language barrier was mostly assumed. She admitted that communication between her and the care recipient was often difficult: They think they can speak Mandarin but the way she speaks Mandarin, I thought she was speaking Cantonese. Half the time I don’t understand . . . it’s really a language barrier because when I explain something to her, she will say, ‘‘Yeah, yeah I know’’ but in the end she would do something that’s different. (HCP2)
The logics of matching for linguistic ability did not work in this case, and thus, the language barrier became silenced and subjugated. What became clear was that home care nurses and care recipients were not necessarily being matched for linguistic similarities, but rather for assumed cultural and racial similarities. These complicated interpretations shed a critical light on the notion of matching for language. Language is one way in which knowledge is conveyed, and so the inability to express their way of knowing in a mutually understood language meant that care recipients’ and caregivers’ knowledge were silenced. Hence, the issues of communication went beyond just a language barrier.
Discussion Decentering to Recenter: Negotiating the Discourse of Cultural Difference in Palliative Home Care The findings point to some salient features of palliative home care, which HCPs must contend with in practice. The HCPs did not discriminate that the taboo of dying at home was exclusively a characteristic of Chinese immigrants with advanced cancer as they discussed the silence around death in relation to other immigrant groups as well; yet that stereotype persisted strongly with reference to Chinese immigrants among HCPs. At the same time, HCPs were conscious that end-of-life issues are just that, issues for people that are dying regardless of their ethnic background. In a qualitative synthesis conducted by Bosma et al on cultural conceptualizations of palliative care, the authors concluded that the scope of palliative care was relatively generic across cultures.40 In fact, they found that there were more similarities than differences between ethnocultural groups’ understandings of what palliative care should address and entail.40 Thus, it is important to understand that while these findings were discussed in relation to Chinese immigrants, the HCPs recognized that these findings and the discussion may be relevant for all immigrants facing a terminal cancer prognosis. Because they worked in the domain of someone else’s home, home care nurses were acutely sensitive to cultural
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differences, which contributed to their difficulties in service provision as they observed contradictions and ambiguity in their expectations and what they encountered in providing palliative home care to Chinese immigrants. The significance of patient-centered care and cultural competence to quality palliative care has been noted in the existing literature.20,41-45 The emphasis on patient-centered care in palliative care was seen to be in conflict with a simultaneous emphasis on culturally competent care for HCPs in this study. Although the two discourses should, in theory, work together to get at the individual beliefs and goals of the care recipient, this was not necessarily how the combination played out in practice. The core of both cultural competence and patient-centered care is the need to see the patient as a unique person,46 and in order to deliver care that recognizes the individuality of the patient, the cultural diversity of patients’ perspectives must also be accounted for. The argument may seem logical enough, but it lacks critical interpretation of how HCPs interpret culture and how these interpretations manifest in practice. The difficulty lies in the fact that when we ask HCPs to be culturally competent, we are asking them to be knowledgeable and aware of a shared cultural belief system while at the same time insisting that they may be patient-centered and continually place the individuality of the patient first. There is a mismatch between the discourses because categorizing and positioning a patient as having shared cultural beliefs is counterproductive to understanding and working with individuality. Kemp argues that ‘‘applying generalizations to all people from a culture is stereotyping.’’42(p45) Although this may be a valid point, we cannot discount that stereotypes do exist and they may exist for no other reason than as a persistent shared belief among many people. If patient-centered care includes striving to understand the cultural beliefs of a care recipient, then we must acknowledge that part of our understanding may come from potentially stereotypical generalizations. Thus, in recognizing that HCPs are not exempt from holding stereotypes, the contradictions in providing palliative home care to immigrants may be less problematic and we can actually begin to deconstruct what a stereotype may look like in practice. The observation that matching care recipients and HCPs for language did not always benefit the care recipient shed light on how cultural essentialism worked in tandem with the conflation of culture, race, ethnicity, and language. Although care recipients may be matched with a nurse that spoke the same language, that nurse may not be as experienced with providing palliative home care. In fact, this informal policy of matching for language/race often created practice discord for home care nurses as language was narrowly defined and did not always account for the nuances in language (ie, dialects). It is through a postcolonial lens that we can see how the interchangeable use of culture, race, ethnicity, and language has significant ramifications to the provision and receipt of palliative home care. By decentering how culture has been traditionally used, we can recenter practice on a more critical understanding and transparent use of culture that acknowledges the insidious persistence of race in health care. Often standardized forms and practice policies do not account for the contextual
variations between care recipients within practice settings, thus resulting in incongruous and misleading practices, such as matching for language/race. In addition, care recipients indicated that their decisions about place of care and place of death were contextually informed and not based on taboos about death in the home; their narratives helped to recenter knowledge back to the contextual and the situational.
Reconsidering Negotiation Negotiation became a tenuous term for HCPs when providing end-of-life care in the home. According to West and Olson, negotiation is often superficially constructed as a civilized strategy to reach consensus and maintain the status quo, but they offer a more critical perspective of negotiation as a liberating opportunity to grapple and work through differences.47 West and Olson see negotiation as analogous to hybridity because both are related to cultural translation, rearticulation, and enactment of change.47 This critical and liberating conceptualization of negotiation highlights the complexity of hybridity and palliative home care while remaining sensitive to participants’ efforts to reposition themselves to achieve their palliative care goals. Many of the care recipients used traditional Chinese medicine in conjunction with what was prescribed by their oncologists. Although the use of traditional Chinese medicine was a source of concern for HCPs, care recipients often spoke confidently and knowledgeably about the benefits of traditional Chinese medicine and Eastern philosophies of health and illness. In this way, care recipients negotiated a hybridized approach to pain and symptom management and squarely recentered knowledge of cancer and of their own bodies back within their own domain.
Strengths and Limitations The challenges of recruiting palliative patients into research, and in particular home care research, has been noted in the literature48; thus, a strength of this study was the inclusion of care recipients who were currently receiving palliative home care rather than retrospectively interviewing family caregivers who had provided care to a dying family member. Although care recipients facing terminal cancer are considered a vulnerable population, Kristjanson et al argue that dying persons are still considered autonomous beings that have the right to decide whether to participate in research.49 Furthermore, a postcolonial lens involves illuminating the subjugated knowledge of marginalized groups, which underscores the ethical mandate to offer patients with advanced cancer the choice to participate in research. Although the findings may not be generalizable, they do provide insight into the not-sowell-understood experiences of Chinese immigrants with advanced cancer managing palliative care in the community.
Implications and Conclusion Training on cultural competence needs to move away from models that portray cultural beliefs and practices as shared,
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378 fixed patterns and take into account the complicated reality of everyday care provision.44 Engebretson et al also contend that clinical application of cultural competence to care is difficult for HCPs because of the lack of conceptual clarity, especially ‘‘essentializing culture to race and ethnicity.’’50(p172) The findings from this study point to the need for a critical perspective in cultural competence that acknowledges that HCPs may hold assumptions and that these assumptions are best worked through when they are transparent and openly discussed. Admittedly, this is difficult because most people are not usually aware of their assumptions. Thus, in addressing the discursive tensions between patientcentered care and cultural competence, the message in practice, policy, and education should be clear in its simplicity that HCPs try to understand personal beliefs regardless of country of origin, race, or ethnocultural background. One of the immediate policy changes that must take place to positively affect practice is to address and reconsider the matching of home care nurses and care recipients based on what appears to be language, but in actuality, is race. The current approach to matching oversimplifies culture and does not always recognize the heterogeneity of Chinese immigrants. Matching for language also ignores the significant point that in spite of ethnocultural background, care recipients and family caregivers wanted home care nurses who were proficient and knowledgeable about palliative care. As Bosma et al point out, the basic needs at end-of-life cut across assumed cultural beliefs40; therefore, matching for language may not always result in optimal care being offered to Chinese immigrant care recipients. This study highlights the complexity of palliative home care and the meanings associated with dying at home for Chinese Canadian immigrants. Postcolonial theory offered a critical and reflexive approach to understand how meanings of home conditioned negotiations of care between Chinese immigrants receiving palliative home care, family caregivers, and HCPs. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. Authors’ Note Actual work was done at Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Toronto, Ontario, Canada M5T 1P8.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
Supplemental Material The online supplement is available at http://ajh.sagepub.com/ supplemental.
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