956809 research-article2020
PMJ0010.1177/0269216320956809Palliative MedicineLou et al.
Original Article
Exploring the meaning of dignity at end of life for Chinese Canadians caregivers: A qualitative cross-cultural study
Palliative Medicine 1–9 © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions https://doi.org/10.1177/0269216320956809 DOI: 10.1177/0269216320956809 journals.sagepub.com/home/pmj
Cindy Lou1 , Kelvin Lou2 and Julia Ridley1
Abstract Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study’s objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects’ acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author’s knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.
Keywords Palliative care, dignity model, Chinese Canadians, immigrants, filial piety, qualitative study, caregivers, cross-cultural care What is already known about the topic? •• Chochinov et al. (2002) developed an empiric Dignity Model which identifies physical and psychosocial issues impacting dignity at end of life. •• Studies done among Chinese cultural groups in Asia have shown that the themes from the empiric Dignity model are broadly supported. •• Studies done among Chinese cultural groups show that family relationships and the Confucian virtue of filial piety is a significant contributor to dignity at end of life. What does this paper add? •• The themes of the empiric Dignity Model are broadly supported in a Chinese Canadian immigrant population. •• Acculturation after immigration to Canada led to an evolution of subject’s perspectives influenced by both traditional Confucian and Western values.
1Division
of Palliative Care, Department of Medicine, The University of British Columbia, Vancouver, BC, Canada 2Department of Medicine, The University of British Columbia, Vancouver, BC, Canada
Corresponding author: Cindy Lou, Division of Palliative Care, Department of Medicine, The University of British Columbia, St. John Hospice, 6389 Stadium Road, Vancouver, BC V6T 1Z4, Canada. Email: [email protected]
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•• The role of the Chinese value of filial piety can be interpreted and applied differently by Chinese Canadian substitute medical decision makers and may be influenced by the concept of autonomy, a central value in Western medicine. Implication for practice •• Dignity conserving care for Chinese Canadians can be strengthened with practical interventions such as providing culturally familiar foods and strategies that promote familial bonds and communication. •• Increasing awareness for clinicians of how traditional Chinese values as well as acculturation after immigration may give the Chinese Canadian population perspectives that are unique from Caucasian Canadians or Chinese living in Asia. •• Findings indicate the need for further research to explore how dignity affirming care can be provided in a cross-cultural setting.
Introduction Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life.1–3 Chochinov et al. (2002) developed an empiric Dignity Model which identifies physical and psychosocial issues impacting dignity at end of life.4 The Chochinov empiric Dignity Model identifies three categories and associated subthemes which interact with one another to determine a patient’s sense of dignity: Illness related concerns, Dignity Conserving Repertoire and Social Dignity Inventory (Figure 1). Studies on the empirical Dignity Model have provided an approach to understanding how patients face terminal disease and a framework to help systematically implement dignity conserving care. It has also led to the development of Dignity Therapy, a psychotherapy tested in randomized controlled trials, and shown to improve quality of life, sense of dignity and be helpful to the patient’s family.3 Subsequent studies of the Dignity Model have looked at its generalizability to palliative patients in different cultural groups. The application of the dignity model to Chinese patients has been studied by researchers in Hong Kong and Taiwan.5,6 Ho & Chan et al. (2013) found that the three categories of the dignity model were broadly supported among Chinese palliative patients. Additionally, new themes emerged including the importance of strengthening bonds across generations (transgenerational unity) and passing on values to the next generation (moral transcendence).5 Li et al. (2014) found that family relationships were a significant contributor to dignity at end of life, in particular having filial children was felt to be honorable and affirmed one’s social role in life.6 These studies suggest that within a Chinese cultural context, the expression of the Confucian virtue of filial piety is a significant contributor to dignity at end of life. The tenant of filial piety has been described as children being obedient to parents, showing respect and caring for parents whether sick or healthy.7 Chan et al. (2012) argues that understanding the challenges of family care giving among Confucian heritage cultures is not be possible without appreciating the ethic of filial piety.8
While previous studies in Asia have explored the generalisability of the empiric Dignity model within an Eastern paradigm there is a lack of studies on the conception of dignity for immigrant populations in multicultural societies. An immigrant from an Asian country who now resides in a Western culture would be exposed to and impacted by both Western and Asian values. The Canadian province of British Columbia and its metropolitan area of Greater Vancouver is a multicultural and ethnically diverse society. According to Statistics Canada’s 2016 census, people of Chinese ethnic origin represented 20% of the population in Greater Vancouver. Acculturation, a process of social, psychological and cultural changes that results from blending between cultures, has been shown to impact the perspectives on end of life care in Chinese living in Western societies.9 Palliative care studies have shown that Chinese in Western countries hold certain views similar to those of “host country” while preserving certain traditional values.10 A Canadian report on cross-cultural advance care planning prepared by Con (2008) demonstrated that acculturation impacted how strongly immigrants held on to traditional beliefs.11 Chinese Canadians have unique healthcare needs and beliefs that may be distinct from Caucasian Canadians as well as Chinese living in Asia. The purpose of this study is to explore the generalisability of the empiric Dignity Model to Chinese Canadians and explore how dignity is mediated by the interplay of Western and Asian influences in a multicultural society.
Methods Design A qualitative approach was adopted.
Sampling Data was collected from community focus group interviews between May to October 2018. Focus groups allow the telling of individual stories and the opportunity to explore how these stories are discussed through interactions of group member from the same community. This method of data collection is utilized to investigate complex
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Figure 1. Chochinov’s empiric Dignity Model (used with permission from Dr. Harvey Chochinov).
behaviors and motivations and is exploratory in nature.12 As this is the first study to elicit opinions and perceptions in dignity at end of life from Chinese Canadians, focus group interviews would be helpful to collect a breadth of perspectives in this diverse community. Purposeful sampling was employed to recruit participants from Chinese speaking organizations in the Greater Vancouver area of British Columbia, Canada. We aimed to recruit Chinese participants from diverse backgrounds by contacting numerous groups including seniors’ centers, volunteer groups, Christian and Buddhist faith organizations. Organization leaders contacted members who were willing to participate. Subjects were eligible if they were Chinese born outside of Canada, had been in Canada for a minimum of 5 years, were at least 40 years of age, a permanent residents/citizen of Canada, and spoke Cantonese or Mandarin. The inclusion criteria included minimum time of immigration to Canada as this may impact the degree of acculturation.
consider the hypothetical situation of their own end of life and share their thoughts about dignity in that situation. 31 Chinese Canadians were interviewed in three focus groups using Mandarin and Cantonese. Three community groups volunteered to be part of the focus groups. Three individual focus groups were held with each community group, in the community setting where the groups normally met. An anonymous demographic data questionnaire was completed by each participant prior to the focus group. Participants were asked to not use their own names, the community organizations’ name, or that of the other participants during the recorded focus group interviews to maintain participant anonymity. Focus groups lasted 60–90 minutes and were audio recorded on a password protected device. Interviews were translated and transcribed. To try to ensure inclusion of Chinese Canadians from various demographics focus group was conducted in English, Cantonese and Mandarin.
Data collection
Data analysis
We developed a semi structured interview guide for the focus groups. The interview questions included the eight questions (Supplemental Appendix 1) used to develop the empiric Dignity Model.4 Based on the studies of the Dignity Model applied to Chinese speaking countries, five original questions were developed focusing on family relationships (Supplemental Appendix 1). In answering the questions participants were asked to consider the terminal illness experience of loved ones and those they have cared for in the past. They were also asked to
We employed template analysis, which uses both inductive and deductive approaches, to identify codes and themes.13 A preliminary code framework was developed based on the priori themes derived from the empiric Dignity Model4 as well as the Dignity Model Studies applied to Chinese speaking countries.5,6 We augmented this framework with new themes that arose from focus group interviews. Nvivo 12 was used to analyze the transcripts and organize codes. To address issues of rigor and trustworthiness all three authors independently coded
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4 Table 1. Demographics. Group 1 Group 2 (n = 5) (n = 12)
Group 3 (n = 14)
Mean
Mean Age (years) 59 53 66 58 Origin Mainland China 2 4 1 Hong Kong 3 8 11 Other 0 0 2 Time in Canada (years) 22 18 28 22 First language Cantonese 5 9 14 Mandarin 0 3 0 Religious beliefs Christian 5 4 14 Catholic 0 2 0 Buddhism 0 1 0 Other or None 0 5 0 Involved in making health care decisions for seriously ill family members in the past Yes 4 6 6 No 0 5 7 Not answered 1 1 1
the first focus group interview and coding was compared to reconcile discrepancies and to develop a consensus for the initial coding framework. The remaining two focus group interviews were coded by CL and KL with constant discussion and comparison. Conceptual saturation was achieved after the third focus group.
Ethical considerations Research ethics approval was granted by University of British Columbia Ethics Board and Fraser Health Research Ethics Board (Approved February 14 2018 Reference ID H17-032015). Participants of the study provided written consent.
Results Characteristics of the 31 participants are shown in Table 1. Their age ranged from 42 to 78 with a mean age of 58. The majority of participants identified as being from China with cities including Beijing, Hong Kong and Macau. Cantonese was the most commonly spoken language and Christianity the most common religion. Time of immigration to Canada ranged from 7 to 44 years with the average being 22 years. Participants from focus group 1 are part of a Chinese volunteer service who provide companionship, driving to appointments and other services to patients. Participants from focus group 2 were recruited from a social service agency which operates a Chinese residential care home. The members of this focus group were part of the agency
and were providing care to patients either in a bedside or administrative role. Participants from focus group 3 were recruited from a Chinese speaking church and many spoke in context of their experience as family members. Many members in all three groups have been involved in caring for their own family members at end of life but only some have been involved in medical decision making (Table 1). The three thematic categories of the empiric Dignity model were broadly supported. Themes of family connectedness and the Confucian virtue of filial piety as identified by Ho&Chan et al.(2013) and Ho&Leung et al.(2013) in studies of dignity amongst the terminally ill in Hong Kong are also strongly relevant for Chinese Canadians.14
Illness related concerns Illness related concerns is the first major theme of the empiric Dignity Model, referring to factors affecting dignity that derive from the illness itself such as physical and psychological responses. Participants in all three focus groups expressed that the inability to carry out everyday activities would be a cause of distress for both the patient and their caregiver: I remember visiting a patient in palliative care, he couldn’t bathe, he couldn’t feed himself. . .He said to me “Si Mo” [Reverend/Pastor’s wife] “my body smells”. I assured him that it is okay that I don’t mind. At that moment my heart felt sour. . . I wanted to express my care but he was so worried about how his body was emanating a foul smell and he couldn’t do anything about it. (Volunteer group, Cantonese, female participant)
Psychological distress can come from medical uncertainty and death anxiety. Similar to the findings of Ho&Chan et al., 2013 our study participants expressed that involving patients in advance care planning and making a plan to reduce uncertainty helped strengthen a patient’s dignity: My mother was found to have uterine cancer at eighty-six. We tried to not let her know because she wouldn’t know how to handle it. My brother didn’t want to tell her. But I felt she should know and I told her. When she found out she wasn’t depressed at all in fact she was very optimistic. She said “if I had surgery things may be much worse than now. I may be lying in bed after, unable to walk and dependent on others. Right now, I feel well and however long this can last, I will accept and let things happen naturally, to accept reality. I can continue my life I don’t want surgery.” She felt this was her own decision and she could accept it. (Social service agency, Cantonese, female participant)
Dignity Conserving Repertoire According to Chochinov et al. (2002) the Dignity Conserving Repertoire of a patient includes their psychological makeup and spiritual outlook that shapes their
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孝 礼 知足 空 Xiào
Lǐ
Filial piety has been described as children being obedient to parents, showing respect and caring for parents whether sick or healthy (7). Confucius’ ethics stresses filial piety as the roots of humaneness and the foundation of human morality. (13) (14) Li is a key concept of Confucian moral philosophy. The word’s meaning includes ceremony, rites, decorum, courtesy, etiquette, and rules of propriety. (15) In its fullest sense Li connotes the sociopolitical order. (13) Contentment
Zhī zú
Buddhist concept of emptiness or void (16)
Kōng Figure 2. Key Chinese words used by focus group participants and their English translation.
response to crisis. The subthemes of Dignity Conserving Repertoire were broadly supported in our findings. In particular, autonomy, maintenance of pride, continuity of self, and role perseveration were important themes. Participants felt that being able to do something for themselves or others even when ill and to be seen as an individual apart from the illness helps bolster dignity: And, if there is something small that can be done the patient will feel a sense of reward. That will help with feeling dignified. Even if it is small like pouring water for someone, I will feel like I have dignity because I have value in life. Because I feel dignity and value are linked. (Volunteer group, Cantonese, female participant)
The subthemes of Acceptance and Seeking Spiritual Comfort, were referenced as sources of strength. Seeking spiritual comfort often came in the form of relying on the sovereignty of a higher power. One participant also described it as accepting “Kong,” a Buddhist concept of insight into emptiness (Figure 2): Faith is a good solution whether it is Christianity or Buddhism. It helps you understand that death is inevitable. One day you will go to heaven. But to truly see through this, to be “Kong”, is really hard. It is hard not to be influenced by the people around you at end of life. You can’t be completely without feeling. To see “Kong” in everything is not so easy when you are suffering. (Church group, Cantonese, male participant)
New themes of contentment and expressing thankfulness emerged as a dignity conserving attitude. Multiple participants cited that feeling thankful, and being able to reciprocate with courtesy and appreciation strengthened a positive sense of self. The Confucian concept of “Li” [courtesy] is raised (Figure 2): A lot of Chinese people try to be content, “Zhi Zhu Chang Le” [if you know contentment you will always be happy]. And I think “Li” [courtesy] is also important. Chinese people really care about courtesy and nurses appreciate it. So, with positive attitudes you get a positive attitude in return. (Volunteer group, Cantonese, female participant)
Social Dignity Inventory The category of Social Dignity Inventory references social issues and relationship dynamics that either bolster or erode dignity. It includes the subthemes of privacy boundaries, social support, care tenor, burden to others and aftermath concerns. The theme of care tenor, the tone of care that health care providers offer patients, was of utmost importance. Participants cite that when care providers not only cared about physical issues but also took the time to be attentive to a patient’s psychological and social needs, it made a significant impact on dignity. Culturally familiar foods came up consistently as an appreciated way of expressing care and attentiveness:
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6 I have been to a hospice where the cook tried to make some Chinese congee for a patient. This is an expression of care. He is a Caucasian cook! [participant laughs] He tried to do something the patient really wanted. (Volunteer group, Cantonese, female participant) I had a patient who wanted ... soy milk. The cook tried many types of soy milk. He asked me because I was Chinese and he couldn’t find the right kind. I told him which supermarket to go to. He really went to get that soy milk for that patient. The patient was so happy, he felt like he was important. Even if the cook couldn’t find it that would have been okay, but what matters was that he tried. The patient felt he was worthwhile. It is the “Sum Yi” [heart’s intent] that matters. (Volunteer group, Cantonese, female participant)
Filial piety Similar to studies of Ho & Chan et al. (2013)5 and Li et al. (2014),6 strong relationships with descendants were identified as a source of hope, meaning and pride for many patients. The social support and respect from children and grandchildren were a predominant theme. The impact of these transgenerational familial relationships seems to far exceed the significance of other social relationships: If the hospital doesn’t treat you well it’s not a good situation but not to the point where a patient wants to die. But it is much worse if things are not good with family. Some children never even visit their parents. Then what hope does the parent have? What is the point of living? For Chinese family support is the most important. Nurses, doctors, they are still only “wai ren” [outside people, people with whom one has no blood ties]. (Volunteer group, Cantonese, male participant) The care expressed by your children or grandchildren versus a cold attitude makes a huge difference. … Filial piety is deeply intertwined with our culture. Blood is thicker than water. Perhaps if we live for further generations in Canada things will change. But at this time filial piety is deeply intertwined with our values. (Church group, Cantonese, male participant)
Focus group members also discussed that elders may feel more dignified receiving care at home and from family members rather than in an institution by health care providers. In mainland China many elders want to be cared for at home and by family. If children show filial piety the elders will be happy, they don’t want to live in nursing home. But now people have less children and children are busy. The elder may agree to go to nursing home but their dignity is negatively impacted. (Social service agency group, Mandarin, female participant)
Participants also expressed a desire for resources to be provided to help facilitate the strengthening of familial bonds. This may be in the form of providing space for spending time with family or facilitating conversation that
allows the expression of forgiveness, gratitude and emotional closeness. I remember when my father was dying, it was just me at his bedside. I was an only child. I didn’t know what to say at his bedside. My father knew he was about to die he seemed to have given up; he didn’t have any hopes of reconciling relationships. At that moment I felt like I really needed someone in the middle to bring us closer so we have better memories of saying goodbye. (Volunteer group, Cantonese, female participant)
Filial piety and substitute medical decision making The desire for children to express and be perceived as filial, may have an impact on substitute medical decision making. In some cases, participants refer to feeling family pressure to choose more aggressive medical therapy for their parents. But other participants felt that respecting the patient’s decision is the best way to express filial piety. When my mother was end of life my brother and I knew what she wanted. But my mother’s siblings did not understand. They asked us ‘why didn’t you do more?’. This was so hurtful because if we did those things it would be against her wishes. At the end they respected our opinion because we are health care professionals but imagine if we were not, the pressure would have been even greater. (Social service agency group, Cantonese, female participant) Filial piety is a virtue. It has to do with respect and obeying the parent’s wishes. This is why I started planning in advance. I even picked the hymn and the color that I want people to wear [at subjects’ funeral]. My children will listen to me. To violate my wishes will crack my dignity. (Volunteer group, Cantonese, female participant)
Perception of cultural difference and acculturation Differences between Western and Chinese values were recognized. But often what were perceived as major cultural differences were in fact universal themes. For example, a participant identified a desire to be independent as a cultural value that prevents Chinese patients from asking for help. Independence, Autonomy and Control however are themes in the Dignity Model that have been found to be supported in studies in Eastern and Western Cultures. If Chinese people can do something themselves, they will do it. Otherwise they will owe someone a debt. This is a cultural issue that prevents them from seeking help. (Volunteer, Cantonese, female participant)
Participants acknowledged that their perspectives regarding dignity at end of life have evolved since immigrating to Canada. They recognized that their perspectives regarding
Lou et al. death are likely different than from their own parents’ generation or that of new immigrants: A lot of Chinese would feel like they are useless as they age. They may feel if they can’t take care of grandchildren anymore and if they can’t cook anymore then its time to leave [to die]. Whereas Caucasians think differently, they know how to live their lives well even without a spouse or children. Even if they have cancer and nothing further can be done, they will still do their best to live well they aren’t just waiting to die. (Church group, Cantonese, female participant) Coming to Canada I think a lot of us are more open[to thinking about end of life] and people are buying their own burial plots, that’s pretty common now (Church group, Cantonese, male participant)
Discussion To the knowledge of the authors, this is the first study to examine the empiric Dignity Model as applied to Chinese Canadians. A primary finding in our focus group was that the concept of dignity is influenced by culture and can evolve over time with exposure to new values via immigration. First generation Chinese Canadians have views that are uniquely moulded by both their cultural of origin as well as the Canadian culture. This is especially apparent in our group’s discussion of the Confucian value of filial piety which was a previously identified theme in studies in Hong Kong and Taiwan of the empiric Dignity Model.5,6 Our study shows that filial piety can be understood and applied differently in medical substitute decision and may be influenced by acculturation. One participant noted there was expectation from the extended family for children to advocate strongly for more aggressive medical interventions for their mother even thought the children knew it as not what their mother would have wanted. This particular interpretation of filial piety in medical decision was explored in a qualitative study looking at end of life perspectives of Chinese Canadians living in long term care.19 Previous studies in the Chinese population have found that there is a belief that to be filial is to protect parents’ health and a child who agrees to refusing life prolonging treatment for a parent may be in violation of filial piety.19,20 Other subjects in our study however felt that filial piety is expressed when children respected and carried out the parents’ medical goals of care. This prioritizing of the parent’s personal autonomy in medical decision making may reflect the influence of a Western paradigm on traditional Confucian perspectives. Similar to studies of the empiric Dignity Model carried out in Taiwan and Hong Kong, participants in our study noted the importance of attentive care from descendants in affirming dignity at end of life.5,6 Filial piety is a theme that does not fit completely under any one category of the
7 current empiric Dignity Model as it encompasses aspects of social support as well as dignity conserving perspectives such as role preservation and maintenance of pride. Overall the three main categories of the empiric Dignity Model were supported in our study. New themes of contentment and reciprocating kindness with courtesy emerged which participants attributed to the Chinese Values of “Zhi Zhu” [Contentment] and the Confucian principle of “Li” [Courtesy]. This attitude may be related to the empiric Dignity Model’s theme of maintaining normalcy, as expressing thanks and showing courtesy may be the only way a patient could feel they could reciprocate during acute illness. The themes of care tenor, spiritual comfort and filial piety had a unique manifestation in this immigrant population. The subthemes of care tenor were expressed strongly in the form of food. Participants observed that Chinese Canadians admitted to hospital or hospice were pleasantly surprised when special effort was made to provide them with culturally familiar foods. The effort by the care provider to inquire about and prepare the patient’s preferred food represented to the patient a sense of being cared for and respected. In regards to spiritual surrender and seeking spiritual comfort many of our Chinese study participants had adopted Christian beliefs. However, participants referenced their Buddhist and Confucian roots as well in facing end of life. The Buddhist notion of “Kong” and the Christian notions of trusting in God’s may both play a part in participants’ hybrid world view. Finally, many participants were insightful of how the Canadian culture were impacting their pre-existing views on end of life. They recognized that the blending of Eastern and Western values has given them perspectives that are different from their parents. However there remains a perception that there is a significant difference between themselves and the Canadian culture in which they live. The subjects raised multiple examples where the perception of cultural difference was a barrier to seeking medical care. The perception of the degree of difference may often be exaggerated. What was felt to be cultural idiosyncrasies such as a strong desire for independence and privacy were in fact universal themes found across different cultural groups.
Implications for practice This is the first study to look at the perception of dignity at end of life for a Chinese immigrant population living in Canada and has important implications for clinicians providing cross cultural care in multicultural communities. Our findings suggest that certain practical interventions may strengthen Chinese Canadian patients and their families’ sense of dignity at end of life. This could include giving patients a choice of culturally familiar foods in meal
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8 plans. As clearly conveyed by our subjects’ anecdotes the culturally appropriate foods were appreciated not only because of their familiar and comforting tastes but because it represented to the patient that they were significant enough for a care provider to put extra thought into their preferences. Knowing the importance of transgenerational family relationships, health care providers may explore the patients’ relationships with their family and offer support to facilitate strengthening of these bonds. One subject in our study expressed that it was difficult to communicate with her father at end of life and wished there was someone who could be a facilitator to help bridge that gap in communication. Further study could explore culturally appropriate interventions to facilitate more dialogue at end of life between family members. Our findings reinforce the importance of health care providers understanding that immigrant patients and their families may hold values influenced by both their culture of origin and their current host culture. While it may be important for children to express filial piety, how this is expressed in substitute medical decision making can greatly vary. Certain traditional interpretations of filial piety may lead to substitute decision makers to lean towards advocating for aggressive and invasive medical interventions, but the evolution of the understanding of filial piety may lead children to feel that being filial means respecting the parents’ autonomy. Our study affirms the findings in current cross-cultural health care literature that culture is not static and immigrant beliefs are often blended and evolving.21 Chinese Canadians are a diverse and heterogenous group, and individuals need to be understood beyond cultural stereotypes. Open communication and acknowledgment of potential differences in perspectives between patient, family and health care providers is critical in providing quality cross-cultural care. Our findings also highlight the need to address that patients’ own perceived cultural differences may be acting as a barrier for them to seek out care. Proactively addressing these concerns may help alleviate anxiety patients feel about engaging in the health care system.
Limitations and future research directions This study reflects the experience and perspective of a small number of Chinese Canadians living in a large metropolitan area in Greater Vancouver, British Columbia. While their perspectives provide insight into the perception, values and understanding of this population they cannot be generalizable to all Chinese Canadians. Chinese Canadians are not a monolithic group and views of individuals will vary based on factors such as region, education, faith and time of immigration. This study explores the perspectives of Chinese Canadians in the community who are healthy but may
have had experiences with end of life patients in their volunteering, work or families. Anecdotal and research evidence have found Chinese patients to have strong preferences for family decision making in health care.21 Therefore, it is important to understand not only the patient’s perspective on dignity at end of life but also the perspective of the family and community from which they came. However, a patient’s perspective may significantly change when critically ill and further study is needed to explore the generalizability of these themes to critically ill Chinese Canadians. A focus group format was used to get a breadth of opinions from this heterogenous demographic as this is the first study looking at the empiric Dignity Model applied to Chinese Canadians. Future research would benefit from deepening this understanding through individual lived experience interviews.
Conclusion Our study has shown that the empiric Dignity Model is applicable to the Chinese Canadian population. What is unique regarding this study is the demonstration of how the interplay of traditional Chinese values, acculturation and the perception of cultural differences influence the expression of the main components of the empiric Dignity Model. The role these findings have in palliative literature is a deepening of the concept of patient centered care in cross-cultural setting. It reinforces the importance of not viewing a whole cultural group as a monolith, while still appreciating the unique cultural aspects of a patient. It is also a reminder that the concept of dignity is an ever fluid idea and that to deliver quality palliative care, one must also perpetually adapt and listen with empathy. Authors’ contributions All three authors contributed to the design, analysis, and editing of the paper. The final version of the paper has been approved by all three authors.
Data management and sharing Audio files, transcriptions and coding schemes can be acquired by contacting Dr. Cindy Lou at [email protected]
Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
ORCID iD Cindy Lou
https://orcid.org/0000-0001-8430-886X
Lou et al. Supplemental material Supplemental material for this article is available online.
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PMJ0010.1177/0269216320956809Palliative MedicineLou et al.
Original Article
Exploring the meaning of dignity at end of life for Chinese Canadians caregivers: A qualitative cross-cultural study
Palliative Medicine 1–9 © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions https://doi.org/10.1177/0269216320956809 DOI: 10.1177/0269216320956809 journals.sagepub.com/home/pmj
Cindy Lou1 , Kelvin Lou2 and Julia Ridley1
Abstract Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study’s objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects’ acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author’s knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.
Keywords Palliative care, dignity model, Chinese Canadians, immigrants, filial piety, qualitative study, caregivers, cross-cultural care What is already known about the topic? •• Chochinov et al. (2002) developed an empiric Dignity Model which identifies physical and psychosocial issues impacting dignity at end of life. •• Studies done among Chinese cultural groups in Asia have shown that the themes from the empiric Dignity model are broadly supported. •• Studies done among Chinese cultural groups show that family relationships and the Confucian virtue of filial piety is a significant contributor to dignity at end of life. What does this paper add? •• The themes of the empiric Dignity Model are broadly supported in a Chinese Canadian immigrant population. •• Acculturation after immigration to Canada led to an evolution of subject’s perspectives influenced by both traditional Confucian and Western values.
1Division
of Palliative Care, Department of Medicine, The University of British Columbia, Vancouver, BC, Canada 2Department of Medicine, The University of British Columbia, Vancouver, BC, Canada
Corresponding author: Cindy Lou, Division of Palliative Care, Department of Medicine, The University of British Columbia, St. John Hospice, 6389 Stadium Road, Vancouver, BC V6T 1Z4, Canada. Email: [email protected]
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•• The role of the Chinese value of filial piety can be interpreted and applied differently by Chinese Canadian substitute medical decision makers and may be influenced by the concept of autonomy, a central value in Western medicine. Implication for practice •• Dignity conserving care for Chinese Canadians can be strengthened with practical interventions such as providing culturally familiar foods and strategies that promote familial bonds and communication. •• Increasing awareness for clinicians of how traditional Chinese values as well as acculturation after immigration may give the Chinese Canadian population perspectives that are unique from Caucasian Canadians or Chinese living in Asia. •• Findings indicate the need for further research to explore how dignity affirming care can be provided in a cross-cultural setting.
Introduction Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life.1–3 Chochinov et al. (2002) developed an empiric Dignity Model which identifies physical and psychosocial issues impacting dignity at end of life.4 The Chochinov empiric Dignity Model identifies three categories and associated subthemes which interact with one another to determine a patient’s sense of dignity: Illness related concerns, Dignity Conserving Repertoire and Social Dignity Inventory (Figure 1). Studies on the empirical Dignity Model have provided an approach to understanding how patients face terminal disease and a framework to help systematically implement dignity conserving care. It has also led to the development of Dignity Therapy, a psychotherapy tested in randomized controlled trials, and shown to improve quality of life, sense of dignity and be helpful to the patient’s family.3 Subsequent studies of the Dignity Model have looked at its generalizability to palliative patients in different cultural groups. The application of the dignity model to Chinese patients has been studied by researchers in Hong Kong and Taiwan.5,6 Ho & Chan et al. (2013) found that the three categories of the dignity model were broadly supported among Chinese palliative patients. Additionally, new themes emerged including the importance of strengthening bonds across generations (transgenerational unity) and passing on values to the next generation (moral transcendence).5 Li et al. (2014) found that family relationships were a significant contributor to dignity at end of life, in particular having filial children was felt to be honorable and affirmed one’s social role in life.6 These studies suggest that within a Chinese cultural context, the expression of the Confucian virtue of filial piety is a significant contributor to dignity at end of life. The tenant of filial piety has been described as children being obedient to parents, showing respect and caring for parents whether sick or healthy.7 Chan et al. (2012) argues that understanding the challenges of family care giving among Confucian heritage cultures is not be possible without appreciating the ethic of filial piety.8
While previous studies in Asia have explored the generalisability of the empiric Dignity model within an Eastern paradigm there is a lack of studies on the conception of dignity for immigrant populations in multicultural societies. An immigrant from an Asian country who now resides in a Western culture would be exposed to and impacted by both Western and Asian values. The Canadian province of British Columbia and its metropolitan area of Greater Vancouver is a multicultural and ethnically diverse society. According to Statistics Canada’s 2016 census, people of Chinese ethnic origin represented 20% of the population in Greater Vancouver. Acculturation, a process of social, psychological and cultural changes that results from blending between cultures, has been shown to impact the perspectives on end of life care in Chinese living in Western societies.9 Palliative care studies have shown that Chinese in Western countries hold certain views similar to those of “host country” while preserving certain traditional values.10 A Canadian report on cross-cultural advance care planning prepared by Con (2008) demonstrated that acculturation impacted how strongly immigrants held on to traditional beliefs.11 Chinese Canadians have unique healthcare needs and beliefs that may be distinct from Caucasian Canadians as well as Chinese living in Asia. The purpose of this study is to explore the generalisability of the empiric Dignity Model to Chinese Canadians and explore how dignity is mediated by the interplay of Western and Asian influences in a multicultural society.
Methods Design A qualitative approach was adopted.
Sampling Data was collected from community focus group interviews between May to October 2018. Focus groups allow the telling of individual stories and the opportunity to explore how these stories are discussed through interactions of group member from the same community. This method of data collection is utilized to investigate complex
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Figure 1. Chochinov’s empiric Dignity Model (used with permission from Dr. Harvey Chochinov).
behaviors and motivations and is exploratory in nature.12 As this is the first study to elicit opinions and perceptions in dignity at end of life from Chinese Canadians, focus group interviews would be helpful to collect a breadth of perspectives in this diverse community. Purposeful sampling was employed to recruit participants from Chinese speaking organizations in the Greater Vancouver area of British Columbia, Canada. We aimed to recruit Chinese participants from diverse backgrounds by contacting numerous groups including seniors’ centers, volunteer groups, Christian and Buddhist faith organizations. Organization leaders contacted members who were willing to participate. Subjects were eligible if they were Chinese born outside of Canada, had been in Canada for a minimum of 5 years, were at least 40 years of age, a permanent residents/citizen of Canada, and spoke Cantonese or Mandarin. The inclusion criteria included minimum time of immigration to Canada as this may impact the degree of acculturation.
consider the hypothetical situation of their own end of life and share their thoughts about dignity in that situation. 31 Chinese Canadians were interviewed in three focus groups using Mandarin and Cantonese. Three community groups volunteered to be part of the focus groups. Three individual focus groups were held with each community group, in the community setting where the groups normally met. An anonymous demographic data questionnaire was completed by each participant prior to the focus group. Participants were asked to not use their own names, the community organizations’ name, or that of the other participants during the recorded focus group interviews to maintain participant anonymity. Focus groups lasted 60–90 minutes and were audio recorded on a password protected device. Interviews were translated and transcribed. To try to ensure inclusion of Chinese Canadians from various demographics focus group was conducted in English, Cantonese and Mandarin.
Data collection
Data analysis
We developed a semi structured interview guide for the focus groups. The interview questions included the eight questions (Supplemental Appendix 1) used to develop the empiric Dignity Model.4 Based on the studies of the Dignity Model applied to Chinese speaking countries, five original questions were developed focusing on family relationships (Supplemental Appendix 1). In answering the questions participants were asked to consider the terminal illness experience of loved ones and those they have cared for in the past. They were also asked to
We employed template analysis, which uses both inductive and deductive approaches, to identify codes and themes.13 A preliminary code framework was developed based on the priori themes derived from the empiric Dignity Model4 as well as the Dignity Model Studies applied to Chinese speaking countries.5,6 We augmented this framework with new themes that arose from focus group interviews. Nvivo 12 was used to analyze the transcripts and organize codes. To address issues of rigor and trustworthiness all three authors independently coded
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4 Table 1. Demographics. Group 1 Group 2 (n = 5) (n = 12)
Group 3 (n = 14)
Mean
Mean Age (years) 59 53 66 58 Origin Mainland China 2 4 1 Hong Kong 3 8 11 Other 0 0 2 Time in Canada (years) 22 18 28 22 First language Cantonese 5 9 14 Mandarin 0 3 0 Religious beliefs Christian 5 4 14 Catholic 0 2 0 Buddhism 0 1 0 Other or None 0 5 0 Involved in making health care decisions for seriously ill family members in the past Yes 4 6 6 No 0 5 7 Not answered 1 1 1
the first focus group interview and coding was compared to reconcile discrepancies and to develop a consensus for the initial coding framework. The remaining two focus group interviews were coded by CL and KL with constant discussion and comparison. Conceptual saturation was achieved after the third focus group.
Ethical considerations Research ethics approval was granted by University of British Columbia Ethics Board and Fraser Health Research Ethics Board (Approved February 14 2018 Reference ID H17-032015). Participants of the study provided written consent.
Results Characteristics of the 31 participants are shown in Table 1. Their age ranged from 42 to 78 with a mean age of 58. The majority of participants identified as being from China with cities including Beijing, Hong Kong and Macau. Cantonese was the most commonly spoken language and Christianity the most common religion. Time of immigration to Canada ranged from 7 to 44 years with the average being 22 years. Participants from focus group 1 are part of a Chinese volunteer service who provide companionship, driving to appointments and other services to patients. Participants from focus group 2 were recruited from a social service agency which operates a Chinese residential care home. The members of this focus group were part of the agency
and were providing care to patients either in a bedside or administrative role. Participants from focus group 3 were recruited from a Chinese speaking church and many spoke in context of their experience as family members. Many members in all three groups have been involved in caring for their own family members at end of life but only some have been involved in medical decision making (Table 1). The three thematic categories of the empiric Dignity model were broadly supported. Themes of family connectedness and the Confucian virtue of filial piety as identified by Ho&Chan et al.(2013) and Ho&Leung et al.(2013) in studies of dignity amongst the terminally ill in Hong Kong are also strongly relevant for Chinese Canadians.14
Illness related concerns Illness related concerns is the first major theme of the empiric Dignity Model, referring to factors affecting dignity that derive from the illness itself such as physical and psychological responses. Participants in all three focus groups expressed that the inability to carry out everyday activities would be a cause of distress for both the patient and their caregiver: I remember visiting a patient in palliative care, he couldn’t bathe, he couldn’t feed himself. . .He said to me “Si Mo” [Reverend/Pastor’s wife] “my body smells”. I assured him that it is okay that I don’t mind. At that moment my heart felt sour. . . I wanted to express my care but he was so worried about how his body was emanating a foul smell and he couldn’t do anything about it. (Volunteer group, Cantonese, female participant)
Psychological distress can come from medical uncertainty and death anxiety. Similar to the findings of Ho&Chan et al., 2013 our study participants expressed that involving patients in advance care planning and making a plan to reduce uncertainty helped strengthen a patient’s dignity: My mother was found to have uterine cancer at eighty-six. We tried to not let her know because she wouldn’t know how to handle it. My brother didn’t want to tell her. But I felt she should know and I told her. When she found out she wasn’t depressed at all in fact she was very optimistic. She said “if I had surgery things may be much worse than now. I may be lying in bed after, unable to walk and dependent on others. Right now, I feel well and however long this can last, I will accept and let things happen naturally, to accept reality. I can continue my life I don’t want surgery.” She felt this was her own decision and she could accept it. (Social service agency, Cantonese, female participant)
Dignity Conserving Repertoire According to Chochinov et al. (2002) the Dignity Conserving Repertoire of a patient includes their psychological makeup and spiritual outlook that shapes their
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孝 礼 知足 空 Xiào
Lǐ
Filial piety has been described as children being obedient to parents, showing respect and caring for parents whether sick or healthy (7). Confucius’ ethics stresses filial piety as the roots of humaneness and the foundation of human morality. (13) (14) Li is a key concept of Confucian moral philosophy. The word’s meaning includes ceremony, rites, decorum, courtesy, etiquette, and rules of propriety. (15) In its fullest sense Li connotes the sociopolitical order. (13) Contentment
Zhī zú
Buddhist concept of emptiness or void (16)
Kōng Figure 2. Key Chinese words used by focus group participants and their English translation.
response to crisis. The subthemes of Dignity Conserving Repertoire were broadly supported in our findings. In particular, autonomy, maintenance of pride, continuity of self, and role perseveration were important themes. Participants felt that being able to do something for themselves or others even when ill and to be seen as an individual apart from the illness helps bolster dignity: And, if there is something small that can be done the patient will feel a sense of reward. That will help with feeling dignified. Even if it is small like pouring water for someone, I will feel like I have dignity because I have value in life. Because I feel dignity and value are linked. (Volunteer group, Cantonese, female participant)
The subthemes of Acceptance and Seeking Spiritual Comfort, were referenced as sources of strength. Seeking spiritual comfort often came in the form of relying on the sovereignty of a higher power. One participant also described it as accepting “Kong,” a Buddhist concept of insight into emptiness (Figure 2): Faith is a good solution whether it is Christianity or Buddhism. It helps you understand that death is inevitable. One day you will go to heaven. But to truly see through this, to be “Kong”, is really hard. It is hard not to be influenced by the people around you at end of life. You can’t be completely without feeling. To see “Kong” in everything is not so easy when you are suffering. (Church group, Cantonese, male participant)
New themes of contentment and expressing thankfulness emerged as a dignity conserving attitude. Multiple participants cited that feeling thankful, and being able to reciprocate with courtesy and appreciation strengthened a positive sense of self. The Confucian concept of “Li” [courtesy] is raised (Figure 2): A lot of Chinese people try to be content, “Zhi Zhu Chang Le” [if you know contentment you will always be happy]. And I think “Li” [courtesy] is also important. Chinese people really care about courtesy and nurses appreciate it. So, with positive attitudes you get a positive attitude in return. (Volunteer group, Cantonese, female participant)
Social Dignity Inventory The category of Social Dignity Inventory references social issues and relationship dynamics that either bolster or erode dignity. It includes the subthemes of privacy boundaries, social support, care tenor, burden to others and aftermath concerns. The theme of care tenor, the tone of care that health care providers offer patients, was of utmost importance. Participants cite that when care providers not only cared about physical issues but also took the time to be attentive to a patient’s psychological and social needs, it made a significant impact on dignity. Culturally familiar foods came up consistently as an appreciated way of expressing care and attentiveness:
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6 I have been to a hospice where the cook tried to make some Chinese congee for a patient. This is an expression of care. He is a Caucasian cook! [participant laughs] He tried to do something the patient really wanted. (Volunteer group, Cantonese, female participant) I had a patient who wanted ... soy milk. The cook tried many types of soy milk. He asked me because I was Chinese and he couldn’t find the right kind. I told him which supermarket to go to. He really went to get that soy milk for that patient. The patient was so happy, he felt like he was important. Even if the cook couldn’t find it that would have been okay, but what matters was that he tried. The patient felt he was worthwhile. It is the “Sum Yi” [heart’s intent] that matters. (Volunteer group, Cantonese, female participant)
Filial piety Similar to studies of Ho & Chan et al. (2013)5 and Li et al. (2014),6 strong relationships with descendants were identified as a source of hope, meaning and pride for many patients. The social support and respect from children and grandchildren were a predominant theme. The impact of these transgenerational familial relationships seems to far exceed the significance of other social relationships: If the hospital doesn’t treat you well it’s not a good situation but not to the point where a patient wants to die. But it is much worse if things are not good with family. Some children never even visit their parents. Then what hope does the parent have? What is the point of living? For Chinese family support is the most important. Nurses, doctors, they are still only “wai ren” [outside people, people with whom one has no blood ties]. (Volunteer group, Cantonese, male participant) The care expressed by your children or grandchildren versus a cold attitude makes a huge difference. … Filial piety is deeply intertwined with our culture. Blood is thicker than water. Perhaps if we live for further generations in Canada things will change. But at this time filial piety is deeply intertwined with our values. (Church group, Cantonese, male participant)
Focus group members also discussed that elders may feel more dignified receiving care at home and from family members rather than in an institution by health care providers. In mainland China many elders want to be cared for at home and by family. If children show filial piety the elders will be happy, they don’t want to live in nursing home. But now people have less children and children are busy. The elder may agree to go to nursing home but their dignity is negatively impacted. (Social service agency group, Mandarin, female participant)
Participants also expressed a desire for resources to be provided to help facilitate the strengthening of familial bonds. This may be in the form of providing space for spending time with family or facilitating conversation that
allows the expression of forgiveness, gratitude and emotional closeness. I remember when my father was dying, it was just me at his bedside. I was an only child. I didn’t know what to say at his bedside. My father knew he was about to die he seemed to have given up; he didn’t have any hopes of reconciling relationships. At that moment I felt like I really needed someone in the middle to bring us closer so we have better memories of saying goodbye. (Volunteer group, Cantonese, female participant)
Filial piety and substitute medical decision making The desire for children to express and be perceived as filial, may have an impact on substitute medical decision making. In some cases, participants refer to feeling family pressure to choose more aggressive medical therapy for their parents. But other participants felt that respecting the patient’s decision is the best way to express filial piety. When my mother was end of life my brother and I knew what she wanted. But my mother’s siblings did not understand. They asked us ‘why didn’t you do more?’. This was so hurtful because if we did those things it would be against her wishes. At the end they respected our opinion because we are health care professionals but imagine if we were not, the pressure would have been even greater. (Social service agency group, Cantonese, female participant) Filial piety is a virtue. It has to do with respect and obeying the parent’s wishes. This is why I started planning in advance. I even picked the hymn and the color that I want people to wear [at subjects’ funeral]. My children will listen to me. To violate my wishes will crack my dignity. (Volunteer group, Cantonese, female participant)
Perception of cultural difference and acculturation Differences between Western and Chinese values were recognized. But often what were perceived as major cultural differences were in fact universal themes. For example, a participant identified a desire to be independent as a cultural value that prevents Chinese patients from asking for help. Independence, Autonomy and Control however are themes in the Dignity Model that have been found to be supported in studies in Eastern and Western Cultures. If Chinese people can do something themselves, they will do it. Otherwise they will owe someone a debt. This is a cultural issue that prevents them from seeking help. (Volunteer, Cantonese, female participant)
Participants acknowledged that their perspectives regarding dignity at end of life have evolved since immigrating to Canada. They recognized that their perspectives regarding
Lou et al. death are likely different than from their own parents’ generation or that of new immigrants: A lot of Chinese would feel like they are useless as they age. They may feel if they can’t take care of grandchildren anymore and if they can’t cook anymore then its time to leave [to die]. Whereas Caucasians think differently, they know how to live their lives well even without a spouse or children. Even if they have cancer and nothing further can be done, they will still do their best to live well they aren’t just waiting to die. (Church group, Cantonese, female participant) Coming to Canada I think a lot of us are more open[to thinking about end of life] and people are buying their own burial plots, that’s pretty common now (Church group, Cantonese, male participant)
Discussion To the knowledge of the authors, this is the first study to examine the empiric Dignity Model as applied to Chinese Canadians. A primary finding in our focus group was that the concept of dignity is influenced by culture and can evolve over time with exposure to new values via immigration. First generation Chinese Canadians have views that are uniquely moulded by both their cultural of origin as well as the Canadian culture. This is especially apparent in our group’s discussion of the Confucian value of filial piety which was a previously identified theme in studies in Hong Kong and Taiwan of the empiric Dignity Model.5,6 Our study shows that filial piety can be understood and applied differently in medical substitute decision and may be influenced by acculturation. One participant noted there was expectation from the extended family for children to advocate strongly for more aggressive medical interventions for their mother even thought the children knew it as not what their mother would have wanted. This particular interpretation of filial piety in medical decision was explored in a qualitative study looking at end of life perspectives of Chinese Canadians living in long term care.19 Previous studies in the Chinese population have found that there is a belief that to be filial is to protect parents’ health and a child who agrees to refusing life prolonging treatment for a parent may be in violation of filial piety.19,20 Other subjects in our study however felt that filial piety is expressed when children respected and carried out the parents’ medical goals of care. This prioritizing of the parent’s personal autonomy in medical decision making may reflect the influence of a Western paradigm on traditional Confucian perspectives. Similar to studies of the empiric Dignity Model carried out in Taiwan and Hong Kong, participants in our study noted the importance of attentive care from descendants in affirming dignity at end of life.5,6 Filial piety is a theme that does not fit completely under any one category of the
7 current empiric Dignity Model as it encompasses aspects of social support as well as dignity conserving perspectives such as role preservation and maintenance of pride. Overall the three main categories of the empiric Dignity Model were supported in our study. New themes of contentment and reciprocating kindness with courtesy emerged which participants attributed to the Chinese Values of “Zhi Zhu” [Contentment] and the Confucian principle of “Li” [Courtesy]. This attitude may be related to the empiric Dignity Model’s theme of maintaining normalcy, as expressing thanks and showing courtesy may be the only way a patient could feel they could reciprocate during acute illness. The themes of care tenor, spiritual comfort and filial piety had a unique manifestation in this immigrant population. The subthemes of care tenor were expressed strongly in the form of food. Participants observed that Chinese Canadians admitted to hospital or hospice were pleasantly surprised when special effort was made to provide them with culturally familiar foods. The effort by the care provider to inquire about and prepare the patient’s preferred food represented to the patient a sense of being cared for and respected. In regards to spiritual surrender and seeking spiritual comfort many of our Chinese study participants had adopted Christian beliefs. However, participants referenced their Buddhist and Confucian roots as well in facing end of life. The Buddhist notion of “Kong” and the Christian notions of trusting in God’s may both play a part in participants’ hybrid world view. Finally, many participants were insightful of how the Canadian culture were impacting their pre-existing views on end of life. They recognized that the blending of Eastern and Western values has given them perspectives that are different from their parents. However there remains a perception that there is a significant difference between themselves and the Canadian culture in which they live. The subjects raised multiple examples where the perception of cultural difference was a barrier to seeking medical care. The perception of the degree of difference may often be exaggerated. What was felt to be cultural idiosyncrasies such as a strong desire for independence and privacy were in fact universal themes found across different cultural groups.
Implications for practice This is the first study to look at the perception of dignity at end of life for a Chinese immigrant population living in Canada and has important implications for clinicians providing cross cultural care in multicultural communities. Our findings suggest that certain practical interventions may strengthen Chinese Canadian patients and their families’ sense of dignity at end of life. This could include giving patients a choice of culturally familiar foods in meal
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8 plans. As clearly conveyed by our subjects’ anecdotes the culturally appropriate foods were appreciated not only because of their familiar and comforting tastes but because it represented to the patient that they were significant enough for a care provider to put extra thought into their preferences. Knowing the importance of transgenerational family relationships, health care providers may explore the patients’ relationships with their family and offer support to facilitate strengthening of these bonds. One subject in our study expressed that it was difficult to communicate with her father at end of life and wished there was someone who could be a facilitator to help bridge that gap in communication. Further study could explore culturally appropriate interventions to facilitate more dialogue at end of life between family members. Our findings reinforce the importance of health care providers understanding that immigrant patients and their families may hold values influenced by both their culture of origin and their current host culture. While it may be important for children to express filial piety, how this is expressed in substitute medical decision making can greatly vary. Certain traditional interpretations of filial piety may lead to substitute decision makers to lean towards advocating for aggressive and invasive medical interventions, but the evolution of the understanding of filial piety may lead children to feel that being filial means respecting the parents’ autonomy. Our study affirms the findings in current cross-cultural health care literature that culture is not static and immigrant beliefs are often blended and evolving.21 Chinese Canadians are a diverse and heterogenous group, and individuals need to be understood beyond cultural stereotypes. Open communication and acknowledgment of potential differences in perspectives between patient, family and health care providers is critical in providing quality cross-cultural care. Our findings also highlight the need to address that patients’ own perceived cultural differences may be acting as a barrier for them to seek out care. Proactively addressing these concerns may help alleviate anxiety patients feel about engaging in the health care system.
Limitations and future research directions This study reflects the experience and perspective of a small number of Chinese Canadians living in a large metropolitan area in Greater Vancouver, British Columbia. While their perspectives provide insight into the perception, values and understanding of this population they cannot be generalizable to all Chinese Canadians. Chinese Canadians are not a monolithic group and views of individuals will vary based on factors such as region, education, faith and time of immigration. This study explores the perspectives of Chinese Canadians in the community who are healthy but may
have had experiences with end of life patients in their volunteering, work or families. Anecdotal and research evidence have found Chinese patients to have strong preferences for family decision making in health care.21 Therefore, it is important to understand not only the patient’s perspective on dignity at end of life but also the perspective of the family and community from which they came. However, a patient’s perspective may significantly change when critically ill and further study is needed to explore the generalizability of these themes to critically ill Chinese Canadians. A focus group format was used to get a breadth of opinions from this heterogenous demographic as this is the first study looking at the empiric Dignity Model applied to Chinese Canadians. Future research would benefit from deepening this understanding through individual lived experience interviews.
Conclusion Our study has shown that the empiric Dignity Model is applicable to the Chinese Canadian population. What is unique regarding this study is the demonstration of how the interplay of traditional Chinese values, acculturation and the perception of cultural differences influence the expression of the main components of the empiric Dignity Model. The role these findings have in palliative literature is a deepening of the concept of patient centered care in cross-cultural setting. It reinforces the importance of not viewing a whole cultural group as a monolith, while still appreciating the unique cultural aspects of a patient. It is also a reminder that the concept of dignity is an ever fluid idea and that to deliver quality palliative care, one must also perpetually adapt and listen with empathy. Authors’ contributions All three authors contributed to the design, analysis, and editing of the paper. The final version of the paper has been approved by all three authors.
Data management and sharing Audio files, transcriptions and coding schemes can be acquired by contacting Dr. Cindy Lou at [email protected]
Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
ORCID iD Cindy Lou
https://orcid.org/0000-0001-8430-886X
Lou et al. Supplemental material Supplemental material for this article is available online.
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