PACER REPORT. Understanding Advance Care Planning within the South Asian Community

Transcription

1 PACER REPORT Understanding Advance Care Planning within the South Asian Community Rashika Kalia, Rooh-Afza Khan, Cyrene Banerjee, Nadia Asghar, and Debbie Boulton Primary Investigator: Jessica Simon PaCER Supervisors: Nancy Marlett & Svetlana Shklarov For the Advance Care Planning and Goals of Care, Calgary Zone, Alberta Health Services and Division of Palliative Medicine, University of Calgary January 2015 Acknowledgement: This study was funded through an Alberta Innovates Health Solutions Collaborative Research and Innovation Opportunities (AIHS CRIO) Program Grant: Advance Care Planning and Goals of Care Alberta: A population Based Knowledge Translation Intervention Study.

2 Understanding Advance Care Planning within the South Asian Community 2 Table of Contents Introduction...3 Background and Context Method Patient and Community Engagement Research (PaCER) Framework...4 Ethics Approval...5 Language Expertise Recruitment...5 Data Collection and Analysis...6 SET Focus Group...6 COLLECT Phase...7 REFLECT Focus Group...8 Results Learnings from SET Focus Group Learnings from COLLECT Family Interviews combined with Set Focus Group...16 Learnings from REFLECT Focus Group..24 Discussion Recommendations Conclusion References Appendix 1. Narrative Interview and Story Analysis Guide Appendix 2. Map of South Asia..34 List of Tables Table 1. Research Participants Table 2. Scripts Categorized by ACP Understandings List of Figures Figure 1. Steps in PaCER Method....5 Figure 2. Different Understandings of ACP 13 Figure 3. Power Differentials within South Asian Communities...15

3 Understanding Advance Care Planning within the South Asian Community 3 Understanding Advance Care Planning within the South Asian Community Introduction Healthcare advances have resulted in a dilemma that profoundly challenges our human values: life can be supported beyond a time when people are capable of speaking for themselves about what care they want to receive. When we lose the capacity to inform our own medical decisions others make them on our behalf, which increases complexity who knows/defines what I want and what is best for me? The major issue for our time, with increasing chronic disease prevalence, cancer, and an aging population, is providing medically appropriate care that is congruent with each patient s wishes and more broadly, societal values, particularly at end of life. It really matters that patients and their families have conversations about preferences for end of life care, and that their health care providers are engaged in those conversations. Understanding this novel social issue within a rich socio-cultural context like Alberta means seeking to explore multiple perspectives. People identifying with a South Asian community are a major and growing presence in Alberta and can provide a diverse, yet distinct, socio-cultural lens through which to view the issue. This PaCER research study was designed to provide patient and family perspectives on Advance Care Planning (ACP) within the South Asian community by engaging the community in exploring the concept of Advance Care Planning. Background and Context Advance Care Planning (ACP) is a process of reflection on and communication of a person s future healthcare preferences. Best viewed as a process, not an event, ACP encourages ongoing dialogue between a patient, his or her family, and the health care team that can guide medical decision-making, even when a person becomes incapable of consenting to or refusing healthcare. ACP has been associated with improved adherence to patient wishes, improved patient quality of life and death, less stress and bereavement for families, and less resourceintensive treatment at the end of life (Wright et al., 2008; Zhang et al., 2009; Mack et al., 2010). However, currently only a low percentage of Canadians engage in ACP, making it an important health service target (Harris/Decima Inc., 2013). There is increasing recognition that participation in ACP by visible minorities is especially poor (Con, 2008). Although limited, the literature suggests that visible minority perspectives toward ACP and end-of-life care may differ from Western or Caucasian cultures (Gatrad et al, 2003; Gurm et al, 2008; Sharma et al, 2011). At its core, ACP is rooted in Western bioethics and places a high value on patient autonomy, informed decision making, and truth telling. In contrast, in many non-western cultures, decision-making may be shared across the extended family, partial

4 Understanding Advance Care Planning within the South Asian Community 4 disclosure or ambiguity may be preferred (e.g., growth or cyst rather than cancer ), and terminal illness may be viewed as God s wish and part of the law of karma (Sharma et al, 2011). Thus ACP may be a foreign concept since death is not discussed or planned for. The South Asian ethnic group (e.g. East Indian, Pakistani, and Sri Lankan, see Appendix 2) is the largest visible minority group in Canada (Statistics Canada 2013). Very little research has been published relating to old age and end-of-life issues for immigrants in general and South Asian immigrants in particular. Most work on end-of-life decision making that has focused on ethnic Asian groups has dealt with other subgroups, mainly Chinese, Japanese, Korean and Vietnamese populations (Braun & Browne, 1998). More information is urgently needed on how best to approach ACP within the South Asian community. This study aimed at achieving the following objectives: 1) To gain an understanding of the barriers and facilitators to participating in ACP from the perspective of individuals who identify with the South Asian community; and 2) to determine the ways in which members of the South Asian community would like to engage in ACP. Method Patient and Community Engagement Research (PaCER) Framework This research study was undertaken by a team of researchers who are members of the South Asian community and graduates of the Patient and Community Engagement Research Program (PaCER). PaCER is part of the O Brien Institute for Public Health in the Cumming School of Medicine at the University of Calgary, supported by Alberta Health Services. Academically, it is also part of the Community Rehabilitation and Disability Studies in the department of Community Health Sciences at the University of Calgary. The PaCER mandate is to provide research development, supports and services to health researchers and teams, research foundations and Alberta Health Services and health care providers interested in adopting patient and community engagement methods as part of their research and planning processes. PaCER achieves this by teaching patients, caregivers and community members to become skilled in engaging other patients, caregivers and communities in research and, upon graduation, making PaCER researches available to health care and research clients. The PaCER method of SET, COLLECT, and REFLECT (Figure 1) has been described and tested by Marlett and Emes (2010). The PaCER method involves a distinct procedural structure built on peer-to-peer inquiry by researchers with shared experiences. The procedures are designed in such a way that research participants are meaningfully engaged at all research stages and become an active part of the process, not merely subjects.

5 Understanding Advance Care Planning within the South Asian Community 5 SET set the direction of the study together with participants COLLECT collect and analyse data: field work, focus groups, narratives, or questionnaires REFLECT reflect on findings together with participants Figure 1. Steps in PaCER Method. Ethics Approval This study has been approved by the University of Calgary Conjoint Health Research Ethics Board Ethics ID: REB Language Expertise Our PaCER research team included women who self-identify as members of the South Asian community in Alberta and are fluent in Punjabi, Hindi and Urdu languages, and thus we were able to collect data in the participants' preferred languages. The bilingual researchers analyzed the data recorded in the participants' languages and conveyed the analysis in English. Recruitment Recruitment Criteria We engaged participants with varying cultural backgrounds who self-identified with the South Asian community. The recruitment criteria were: Age over 18 years Speak fluent Punjabi, Hindi and/or Urdu, or English-speaking family members who can also speak and/or understand Punjabi, Hindi or Urdu Consent to participate in focus groups and/or conversations with a PACER researcher. Recruitment Strategies We recruited participants from the South Asian community by displaying posters at community places of worship (e.g., Temples, Mosques, Gurdwara) and community centres (e.g., Dashmesh Culture Centre, Islamic Centre & Swati's Senior Group), through announcements by community leaders at the end of religious ceremonies, and through word of mouth by the PaCER research team in the community. After the SET focus group, we recruited participants by placing an announcement on the local South Asian radio station Red FM The PaCER research team

6 Understanding Advance Care Planning within the South Asian Community 6 broadcast a short informal discussion about ACP, providing the community with the information about the project and the context of ACP in Canada. We recruited additional participants via this broadcast, which also allowed members of the community to ask more questions about ACP. Word of mouth and the local radio announcement were the most effective methods for recruiting participants. Data Collection and Analysis In accordance with the standard PaCER procedures, we collected and analyzed data in three phases. 1. SET Focus Group: The purpose of the SET focus group is to "set the direction and goals for the study" (Marlett and Emes, 2010, p. 178). We conducted a focus group at the Ahmadia Community Centre and engaged 15 participants who were members of three South Asian communities: Hindu, Sikh and Muslim. To respect the cultural norms of the South Asian society, we invited only women to participate in the SET focus group. We asked participants how they defined the concept of ACP, but found that many participants did not have a clear understanding of what ACP meant. After the PaCER facilitator explained the concept of ACP, one PaCER started the discussion by sharing her own personal story. She opened the conversation by saying that she did not know anything about ACP until her family was hit by the cancer bus. She continued: Having recently migrated to Canada, and being in perfect health thus far, 'death' was something I simply could not wrap my head around until it actually happened. My son and I were only committed to 'life' with our husband and father, and death was never an option. There is a school of thought that believes that we are the co-creators of our life, agents who have the power to manifest what happens to us. We did not wish to err by indulging in 'negative' thought. We erred instead on hope, joy, and on being together. We did not wish to die daily, no matter what we were told. We chose to die only once. We then asked the participants the following questions: Tell us about a time when a loved one was unable to make their own medical decisions. Was there anybody to help? What helped you get through this? What would you have liked to happen? Who would initiate or start a conversation about health plans in your family? How and when?

7 Understanding Advance Care Planning within the South Asian Community 7 The discussion took place in Punjabi and Urdu, which we translated into English on the flip chart notes. One researcher acted as the process recorder and noted all the interactions between the participants and researchers. After the discussion, the PaCER researchers summarized the key ideas and themes that participants had talked about. We then discussed the COLLECT stage of the research and asked the group for their input in developing the interview guide for the family interviews. The data collected at this stage, as well as our observations of the group process, were analyzed and used to refine the questions for the COLLECT phase of the project. We constructed the following plan to initiate the conversations in the family interviews (see Appendix 1): First, one of the PaCER peer researcher would share a story around ACP. Then, these questions would follow: What would you have done if something similar were to happen in your family? What have you done around ACP? Why or why not? Possible prompts: What would have helped you in the situation? What would be most difficult? 2. COLLECT Phase: We conducted family interviews in the COLLECT phase to better understand family perspectives on ACP. As members of the South Asian community, we understood the importance of family conversations when making difficult decisions around one s health. Based on our personal experiences with our own families, we felt that participants would only open up and share their perspectives about ACP if family members were gathered together. The South Asian community is known for having strong family ties where the family is part of decision-making when it comes to health care. Conducting family interviews also provided men with an opportunity to be part of the discussion about ACP and provided us with a better insight as to how families perceive ACP. The concepts of individuality and autonomy within South Asian cultures differ from these concepts in the Western cultures, and often the most senior member of the patient s family or the eldest son makes healthcare decisions for the family. By interviewing the family, we hoped to discover whether or not family members were aware of individuals health wishes. We conducted eight family interviews with a total of 23 participants. Each of the interviews took place in the family s residence, were facilitated by pairs of PaCERs, and were conducted in the participants first language (Punjab, Hindi or Urdu). Five family interviews were conducted with members from the Muslim Community and three from the Sikh Community. Thirteen women and ten men were interviewed. The age of the participants ranged from 22 to 72, with two participants over the age of 65.

8 Understanding Advance Care Planning within the South Asian Community 8 We began each interview with one PaCER sharing a story that captured the key aspects of ACP. We than asked the participants what would they have done if something similar were to happen in their family. As these family conversations started with a telling of a story, the participants also naturally shared their thoughts in the form of many stories about their own situations, their families, friends and communities. It was through the stories that the interview participants were trying to make sense of how the idea of ACP fit with their health and community realities. We were prepared for this turn of storytelling as a result of our earlier study with the members of the same communities (see the report on the study Oh Canada! Experience of OA Surgery, Kalia, Khan, et al, 2013). This was the first time we conducted research interviews in family settings, but the telling of stories emerged as a natural tool of sharing the ideas on a complex issue of ACP within the context of the community traditions and practices. Therefore, we decided to analyze the interview data using narrative techniques, to uncover the meaning of many diverse stories through identifying common general scripts recognizable patterns that play out in similar ways throughout many stories recounted by different storytellers, or the same storyteller. Bruner (1990) explained scripts as the canonical events which introduce the meaning, or frame of a story. Labov and Waletzky (1967) defined scripts as the referential core of personal narratives. The interviews were audio taped and transcribed. We analyzed the transcripts identifying general scripts based on the families stories, and the emerging narratives were clustered according to the narrative analysis method (Marlett & Emes, 2010). These scripts were discussed at the REFLECT focus group with members from the South Asian community. 3. REFLECT Focus Group: We conducted the REFLECT focus group by hosting a community forum that was open to the members of the South Asian community. We chose this format so that we could share our findings from the SET and COLLECT phases of the project, and allow community members a chance to validate the findings, analyze the emerging themes together with the researchers, provide feedback, and suggest ways to openly discuss ACP within the community. Forum participants had not participated in the earlier phases of the project and had not been exposed to the previous findings from the SET and COLLECT phases. To advertise the forum, we distributed posters throughout the community centers, and also used word of mouth. The word of mouth strategy appeared to be most effective, and the majority of participants were recruited through PaCERs personal contacts in the community. Holding a community forum also increased our level of engagement with the South Asian community. In general, this community is not very active in participating in research and we wanted to initiate change by using this project as a stepping stone. The forum allowed us to inform and educate the community about ACP, and made members of the community feel included and validated when making health changes.

9 Understanding Advance Care Planning within the South Asian Community 9 The community forum was held at The Genesis Centre of Community Wellness in northeast Calgary. This central location was convenient and accessible for members of the community, as many South Asians reside near this area. Full anonymity was guaranteed to the participants. In the forum, we did not record participants names or any identifying information; we documented only the general reflections and reactions to the presented information. Nineteen participants attended the community forum. We first introduced the concept of ACP to participants and then split into four small groups, with each group being facilitated by a PaCER. The PaCERs provided context about the particular script to be discussed; then members of the group discussed the script. After 20 minutes, the PaCER would move to the next group for discussion, so by the end of the morning, each group had discussed all of the scripts. The small group size helped ensure that all participants were actively involved in voicing their thoughts and suggestions about ACP. Following the small group discussions, we had an interactive lunch with four members of the AHS (ACP and Goals of Care team, Calgary Zone) and research (ACP CRIO) team from the University of Calgary. After lunch the PaCERs presented the key findings of the study. We then allowed everyone the opportunity to express his or her thoughts and ideas as to how ACP could be encouraged within the community. We observed that the participants were eager to voice their suggestions as to how ACP could be included and understood within the South Asian community, and the discussion was active with significant cross talk between participants. Many suggestions and themes seemed to intersect. Community members recommended many creative and thoughtful ideas as to how Alberta Health Services should implement ACP, not only within the South Asian community, but across other communities. We included most of these reflections in the Recommendations section of this Report. At the end of the scheduled time, many participants were still actively engaged in discussion and were not ready for the discussion to end. All of the participants reported being happy and satisfied with the forum. Results The research study included 57 participants: 15 in the SET focus group, 23 in the COLLECT family interviews, and 19 in the REFLECT focus group.

10 Understanding Advance Care Planning within the South Asian Community 10 Table 1. Research Participants. Participants Gender Age Language SET Focus Group: 15 participants 1 F - Urdu 2 F 34 Urdu 3 F 25 Punjabi 4 F 46 Hindi, Punjabi 5 F 86 Punjabi 6 F 32 Urdu 7 F 73 Hindi, Urdu 8 F 40 Urdu, Punjabi 9 F 45 Urdu 10 F 30 Urdu, Punjabi 11 F 42 Urdu, Punjabi 12 F 22 Urdu 13 F 64 Urdu, Punjabi 14 F 40 Urdu 15 F 68 Hindi, Punjabi COLLECT Family Interviews (eight family interviews = 23 participants) 1 M 33 Urdu 2 F 29 Urdu 3 M 72 Urdu 4 F 68 Urdu 5 F 47 Punjabi 6 M 22 Punjabi 7 M 52 Punjabi 8 M 37 Urdu 9 F 31 Urdu

11 Understanding Advance Care Planning within the South Asian Community M 31 Punjabi/ Hindi 11 F 26 Punjabi 12 F 53 Urdu, Bengali 13 M 64 Urdu 14 M 36 Urdu, Punjabi, Hindi 15 F 56 Urdu, Punjabi, Hindi 16 M 60 Urdu, Punjabi 17 F 26 Urdu, Punjabi, Hindi 18 F 44 Urdu 19 M 40 Urdu, Pashto 20 F 39 Urdu 21 F 26 Punjabi 22 F - Punjabi 23 F - Punjabi, Hindi REFLECT Community Forum: 19 participants Note: Full anonymity was guaranteed to Forum participants. No names or other identifying information were recorded. The findings are reported below in three groupings: SET, COLLECT and REFLECT. We chose this structure of reporting the results because it describes the evolution of the results that were obtained in each phase of the study, and reflects how each phase of the PaCER method sets the stage, lays the groundwork, and informs the next step. Learnings from SET Focus Group Three main learnings emerged from the SET focus group. 1. Importance of language. One of the key learnings that emerged from the SET focus group was the importance of language when talking about ACP. We observed that participants had a difficult time understanding the meaning of ACP. We learned that the concept of ACP does not directly translate into Hindi, Punjabi or Urdu. After analyzing the flip chart notes and process recording notes from the SET focus group, we discovered that the concept of ACP does not exist within the community and is very foreign to community members. Although we tried to translate the concept of ACP during the focus group, our explanation of ACP was interpreted as an expression that is perceived on an individual

12 Understanding Advance Care Planning within the South Asian Community 12 basis and that depends on a person s life experiences. For example, we observed that participants who had some sort of experience relevant to ACP were more reserved in the discussion compared to those who were learning about it for the first time. To ensure that the meaning of ACP was not lost in the translation we had to make sure we used the right words. We practiced this through discussions with our own families and friends, and found the more we spoke about it, the easier it became for us to translate and define ACP without losing the context. In many cases we caught ourselves saying ACP in English because we could not find other words to use. We realized how difficult it must have been for community members to grasp the concept of ACP, since there are no words for the exact, literal translation of Advance Care Planning into Hindi, Punjabi or Urdu. In addition, there was no historical or health service context familiar to the participants that we could use to describe examples or represent ACP. There are few relevant mental models within the participants familiar practices that could be helpful in communicating the concept. We wanted to find a way to discuss ACP in a way that would allow participants to not only understand ACP, but also to be able to voice their opinions. We relied on vignettes to set the stage and engage participants, inviting individuals to share their own personal narratives in a similar matter, but with their own perspective of ACP. We realized how critical language is when it comes to expressing one s thoughts and ideas. Many participants relied on personal stories when talking about ACP. We heard many stories about older family members who were sick and how the family decided what to do next. Often the discussion focused on the family dynamics regarding who had the final say if something were to happen to a family member. Participants also shared their religious views around ACP: they expressed the opinion that if something were to happen to them, they would expect God to take care of it, and that whatever is meant to happen will happen, because it is God s plan. Our thematic analysis of the focus group discussion revealed that participants talked about things that made sense to them in the context of ACP. We realized that participants were telling us about their natural perceptions and ways of living through difficult decisions within their particular cultural environment. We also understood that the language of stories was most appropriate and functional for this purpose. Overall, we learned that individuals used personal stories as means to express themselves when they didn t have exact words in their language that would match the Western concept of ACP. In turn, these stories captured the underlying issues that influenced one s perspective on ACP. 2. Different understandings of ACP. The second key learning from the SET focus group was that the meaning of ACP varied from individual to individual based on their personal

13 Understanding Advance Care Planning within the South Asian Community 13 understanding of the issues. This understanding was shaped by the individual s personal experiences and how they were viewed. We initiated the focus group discussion by sharing our own personal stories, which made it easier for the participants to share their life experiences without any hesitation. The participants shared their personal experiences via stories to make sense of the foreign concept presented to them as ACP. After analyzing the personal stories, we discovered that individuals have different understandings of ACP. Some of common understandings that emerged are presented in Figure 2. ACP LANGUAGE OLD & SICK PULLLING THE PLUG ORGAN DONATION DOCTORS WEALTH/ WILLS Figure 2. Different Understandings of ACP. Old and Sick. Many participants associated ACP with older individuals who were ill and required support from the family. One participant shared a story about her sick mother in law who was hospitalized and on life support: Prior to my mother in law getting sick, we never really thought about her end of life decisions or even knew what Advance Care was. Pulling the Plug. Within the South Asian community difficult decisions, such as pulling the plug, were often made collectively within the family. However, it was usually the spouse or the oldest child who had the final say: My husband being the oldest son had to make the decision if we wanted to take her off life support.

14 Understanding Advance Care Planning within the South Asian Community 14 Organ Donation. Since there were so many different religions and beliefs within the group, each participant held an individual view about organ donation: My situation with my son has changed my perspective on my organ donation, I am open to it now. Doctors. Another common interpretation of ACP was that the doctors have authority when making end of life decisions. Doctors were viewed with high regard due to the participants personal beliefs from their home country: I can openly talk to my doctor since I don t have a language barrier unlike my parents. Wealth/Wills. The majority of the participants associated ACP with wills, and they believed securing their assets was a key component when making end of life decisions. For example, in the Ahmadi community, it is mandatory for everyone to have a will prepared once they reach the age of majority. The aspect of will illustrated that there was a strong belief that having your wealth in order prepared them for the worst: Many people don t include their health decisions in their Will, it s all about who gets what. An underlying influence among all these categories was the family. Families tended to play a key role when making important decisions, such as whether or not to be organ donors, when to pull the plug, and where to keep the elders when they are sick. We discovered this rich information because participants shared their perspectives about ACP through the stories. We learned that, in order to understand the meaning of ACP, people used stories and shared experiences as tools to grasp this concept. 3. Power differentials. When we analyzed our SET focus group data, we discovered that many discussions were related to power differentials, which included power within the community, power within doctor family relationships, and power within families. These power differentials played a key role regarding ACP, influenced the individual s ability to make end of life decisions, and created a natural dependency on others.

15 Understanding Advance Care Planning within the South Asian Community 15 FAMILY CULTURE POWER DIFFERENTIALS RELIGIOUS FIGURES HEALTHCARE PROVIDERS Figure 3. Power Differentials within South Asian Communities. A common cultural value among the South Asian Communities was strong family ties and the centrality of family. However, within families, there was a power differential between family members. In most cases, the oldest male (a father, uncle, brother, son or husband) was responsible for making all important decisions. This tenet was reinforced during the SET focus group, as participants shared their stories around ACP. One participant with an ill mother-inlaw stated, Since my husband was the eldest son, he was automatically responsible for taking care of her. The power differential within the families was a naturally understood concept and was a traditional norm from the participants homelands. Another power differential that impacted the community was the relationship with health professionals. Community members had a high regard for health providers when making end of life decisions, and the doctor was given authority when it came to decision making. This is a common practice in South Asia, where the doctor s professional opinion is highly valued. Families were strongly influenced by doctors and may have settled with a certain treatment even though they may not have personally agreed with the treatment: In our community doctors advice is highly valued and respected some consider them as God. There was also a power differential within the South Asian community itself. Members who were considered power figures, such as priests or politicians, were highly respected within the community. These figures were the go to people when discussing important issues or trying to

16 Understanding Advance Care Planning within the South Asian Community 16 bring awareness: It would be beneficial if more seminars happened at the temples because people tend to pay more attention to the priests and take them seriously instead of us or you. We used the analysis of the SET data to refine the next stage of our study. As mentioned earlier, due to location and respect for cultural norms, our SET focus group included only women, so during the SET phase we felt we were only hearing one side of the story. We wanted to address this shortcoming in the COLLECT phase by gathering the men s point of view. The SET information helped us form the guiding and probing questions for narrative interviews in the COLLECT phase of the study and also allowed us to get input from family members. Learnings from COLLECT Family Interviews Combined with SET Focus Group Using the eight transcribed family interviews, we identified similarities in the participants stories and identified seven preliminary themes. Each theme was plotted in the story analysis chart (Appendix 1), which facilitated the organization and development of scripts. We combined these initial scripts with information from the SET focus group findings, and further refined the preliminary scripts into six key scripts, which overlapped naturally with the story categories from the SET focus group (Table 2). 1. Foreign Ideas: "When I don't know much about a new foreign idea, I simply cannot make any decisions, and then I ask for more information so I can deal with it." Almost all the families we interviewed were unaware of ACP. It appeared to be a new concept, which they found difficult to grasp, for example, some families associated ACP with wills. When we tried to explain the term, we discovered that there was no literal translation that could define ACP. This script illustrates how members of the South Asian community perceive ideas and concepts that are new to them, such as ACP. Prior to their involvement in this research project, members from the community were oblivious to ACP, and claimed to have not heard about it. One participant stated, It is not a trend in our society to discuss ACP, it is so alien to their minds. One participant was under the impression that his will covered him for his health decisions: Honestly, in my community, I have seen very few people asking for a will, let alone a personal directive. Since ACP is a health related concept, many participants were surprised that their family physicians never discussed it with them. This surprise arose from the fact that many participants considered their physicians as their primary source when accessing health related information. One participant stated, We have never heard about ACP before, even our doctors have never told us anything about it. Those who understood this concept felt that the healthcare system should take more initiative in educating and informing the community

17 Understanding Advance Care Planning within the South Asian Community 17 around ACP: Alberta Health Care should write a letter asking and telling them their legal rights about their health decisions because we take them seriously like Revenue Canada. Another participant felt the healthcare system should create more dialogue around this sensitive topic: If healthcare tell us, we will be more comfortable to discuss with them, instead of our family. On the other hand, some members from the community felt that physicians have no time to talk about ACP. This opinion was based on their personal experience with the healthcare system, where they felt that health providers were always on the go. 2. Cultural Norms: When anyone in the family is faced with a difficult situation, everyone intuitively knows what their role is and what to do, and then right decisions are just made without us planning ahead. This script outlines the cultural aspects that are involved when it comes to the individual s health, particularly around ACP. A key cultural aspect valued within the South Asian community is close family ties. Families played an integral role when making any important decisions, such as one s health. One participant stated, We have a good value system within our families and they are not worried that their families will not take care of them. Within the community, there was a common belief that if someone in the family got sick, especially the elderly, then everyone would actively participate in their care. Even the kids should be involved, stated the parent of a teenager. Thus, when families were asked who they would designate as their personal directive, many replied, My family will make my health decisions, but we have not talked about it. Others said, They are not concerned about their health [because] they have more family ties and believe that family would make the decision for them. There was a common understanding among the community members that, if something were to happen to the parents, then their children would naturally take care of them, preferably their sons: I have not met anyone whose parents are in old folks homes, everyone is well taken care [of]. This belief has to do with the community s strong cultural values when it comes to parents and their relationship with their children. One participant stated, I told my doctor that I have kids who will take care of me and I am comfortable with them I don t need home care. ACP was perceived as a sensitive topic and it was difficult for families to have an open discussion around ACP, because of the emotional attachment: Kids and families get emotional when death is discussed. The South Asian community members were not comfortable talking about the what ifs around their health: I can confidently say that not even 2% of the people back home talk about the what if something were to happen to me and what would happen, etc. Health professionals from the South Asian community felt more comfortable talking about ACP with their patients than with their families. One participant who was a doctor stated, I talked about it with my patients but didn t discuss about it with my family. However, if we want to discuss with family and parents, it would be very short and casual.

18 Understanding Advance Care Planning within the South Asian Community 18 The cultural norms of the South Asian community prohibited implicit concerns to be expressed verbally. For example, it would be considered inappropriate for a son or daughter to discuss issues of death and dying with parents. Usually that responsibility lay on the shoulders of the eldest son, as they involuntarily or voluntarily became the head of the family in the parents absence. We discovered that there was a clear pattern of cultural preservation of looking after their elders if faced with end of life care, but found that the younger generation had different views regarding ACP in their parents. In their opinion, one should be allowed to speak out directly when planning end of life care decisions. Overall, culture played a significant role when it came to ACP. We discovered many common beliefs and values embedded within the South Asian community that impacted the way individuals perceived ACP. Participants expressed the common belief that all roles and decisions were already in place so they didn t need to bother planning the what ifs around their health. 3. Don t Talk about That: When I anticipate any unfortunate scenario, I am immediately told to shut up and not to dwell upon it, so we don t prepare for problems, we just face them. People in the South Asian community did not like to hear that something bad might happen to them or their family members. These beliefs might be considered as superstition, as within South Asian communities omens are also taken into consideration, which could be seen as a form of denial when it comes to ACP. We observed that in the South Asian community denial or superstition related to health was an important reason why ACP was not discussed: Our community is either shy or scared to talk about their health concerns. Elderly people who have been diagnosed with heart disease often felt that they were still healthy, because their condition was not visible and therefore, it was harder for them to accept that they had a disease. In contrast, they thought individuals with cancer or visible disabilities were the real unhealthy people. We don t like to think that anything will happen to us and, therefore, fail to plan our health decisions. Many participants felt that talking about the positive would lead to a healthier life. Among families within the South Asian community, we observed that cultural norms prevented people from talking about negative topics, such as deterioration of one s health. If you talked about bad things, those bad things would happen, such as you falling ill when you are perfectly healthy: You never think about it, as everyone seems healthy. Many members of the South Asian communities followed or believed in superstitions, and not talking negatively was one of them. They felt that focusing on the positive would result in positive outcomes. Do not

19 Understanding Advance Care Planning within the South Asian Community 19 talk about the bad things, only talk positive and talk about life and paradise. However, if the negative was discussed, then that would result in negative outcomes: We don t plan for death and it is not discussed in our family. We are brought up in such a way that death is not discussed. Many participants felt that talking about the positive would lead to a healthier life. Based on this belief, many of the families strongly viewed that the topic of ACP was a negative one. Therefore, they were reluctant to discuss this topic and felt that they would cross that bridge when and if they come to it: We don t prepare for problems, we just face them. 4. Leave it to God: Whenever I am faced with hardships, I turn to God and then I feel peace and contentment. When making a critical decision for themselves or their loved ones, most participants were dependent on their religious beliefs: God played a big factor when they made health care decisions. Participants strongly believed that God would take care of everything if they were to fall ill or something bad was to happen. Most participants in this study tended to be fatalistic when it came to the management of their health and death. Their attitude was that one has to surrender to the higher wills of God and to let Him take care of us as He deems fit. Faith in God is a strong factor due to which we don t take care of our death and health plans, said one participant, while another emphasized, God is the One who helps us in every step of our life. He created our body and He helps us in our decision for life. He has strong impact on our decision. This God-dependency often led to a laissez-faire attitude, with many major life decisions being influenced by religious considerations. However, not everyone agreed with this view. Some participants expressed their opinion that an over-emphasis on God was concealing an underlying lack of knowledge about their religion and tunnel vision: Our people don t know about their religion and are narrow minded. They don t have all the information before making a decision. Another said, I believe in science and technology, and don t let religion come in the way when making decisions. As part of a large community in Canada, many participants emphasized that AHS should be aware of religious beliefs because there is a lot of overlap among the common South Asian religions. Some people felt that before embarking on educating the South Asian population, health care providers should be aware of the individual s religious beliefs. While knowledge about ACP was virtually non-existent, most participants had a very good understanding of organ donation. Despite contradictory opinions, a surprising number of individuals had given thought to organ donation when confronted with the death of a loved one. A couple that had lost their son, although divided in their views on this matter, had raised

20 Understanding Advance Care Planning within the South Asian Community 20 this difficult and most painful subject. The wife s view sprang from the influence of her own family, which was rooted in faith. The husband, on the other hand, wanted to donate his son s organs: My wife goes with religion too much. I wanted to donate his organs but she was influenced not to by her family we need to answer back to Allah as He created us. When making a decision about critical organ donation, some people tried to find a solution within religious beliefs: Our religious beliefs come in the way when it comes to organ donation. and We are ready to take organs but are not willing to give them because when we die all of our body parts should be with us. We don t plan about death and severe health conditions as we believe it is not in our control. Discussing and preparing for it puts us in control rather than God and the higher power. 5. Too Busy with Life: I am so busy with making a living in Canada that I have no time to think of anything else that might be important in my life. The participants had emigrated from South Asia to Canada with the hope of improving their lives and building a sustainable future for their families. Most people arriving in Canada were faced with strong cultural differences. As a result, they had a difficult time integrating into the Canadian culture, especially when it came to health. They focused on the tangible goals of building a house, getting their children a good education, and acquiring all the other necessities and luxuries. They felt they were healthy as long as they were able to work and provide for their families. They did not discuss ACP, because it was something that was not foreseen. Discussing ACP would mean stopping the current flow of events in their busy lives and worrying about something that may or may not happen. In order to fit in, acculturate into a new society, and reinvent themselves for the purpose of merging with the mainstream workforce, many immigrants had to repeat their degrees or validate their diplomas. South Asian immigrants, immersed in economic issues, placed top emphasis on Canadian education for their offspring, as a way to secure their future. Overwhelmed with these two priorities, the simple management of their daily existence became an inordinate struggle for young families. There are so many challenges here, that sometimes I forget my name, or I wake up at 5 am and come home tired, have to cook, eat, etc. The issue of ACP was particularly neglected in the context of immigration challenges, since it was also a completely alien concept and thus there was simply no call to attend to it. Unlike inheritances of property and, surprisingly, the donation of organs, ACP was perceived as very remote. Both wills and organ donation appeared to be widely understood. However, ACP was an entirely neglected issue: I was too busy with my work to plan my personal directive prior to my surgery, and How will we have this thought in our mind when we are having this life stress?

21 Understanding Advance Care Planning within the South Asian Community 21 Human beings may have a natural reticence to talk about painful decisions, especially when they cannot be visualized and people are healthy: this was not the time when immigrant families could conceive of any terminal or chronic illness. There was simply no way to cope with these foreign and also disturbing ideas right now. It was for this reason that, as we heard time and time again, we are too busy to think about ACP. Most participants tended to focus on what was tangible and could be passed on to the next generation. Intangible ideas are vague and distant, compared to the urgency of building a house, supporting their families back home, and ensuring their children get a good start in Canada all the things for which they left their homes countries. If ACP was discussed with them, it seemed like an irrelevant and remote foreign idea that would stop the current flow of things, and burden them with the additional worry about something that may or may not happen, as well as take valuable time away from making their dream a reality: Decisions are different when one is an immigrant. 6. Wealth versus Health: When I fall ill, I make sure that my finances are in order, so that my family doesn t fight over it. This script focused on the conflict between wealth and health, and which one was more important among members of South Asian communities. When it came to end of life health decisions, many participants were more worried about their wealth than their health. One participant stated, Many people don t include their health decisions in their will, it s all about who gets what. They have often discussed and allocated who will get what within their family if something were to happen to them. This was often not the case when it came to ACP. People felt that, by talking about their assets, they were prepared to face the worse, not realizing that it had nothing to do with their health or advance care planning: What would happen if something happens to me, do we have to write a will? What will happen to my bank account? Since many of the study participants had immigrated to Canada, they were more worried about their property than their health. This belief may be influenced by the health care system in their home country, which is financially driven. Some participants considered their family as their personal wealth, because they had invested so much of their time ingraining their beliefs and values. Perhaps this is the reason that many of the older participants claimed they are not concerned about their health because they believe that they have more family ties and that family would make the decision for them when it is time or need to do so. Through the interviews, we discovered that many of the participants were able to handle crises. However, many did not pay much attention to the preventive aspects of health and ACP. All too often, care was fragmented, unplanned, and uncoordinated, regardless of the South Asian

22 Understanding Advance Care Planning within the South Asian Community 22 patient's economic status. There was a common understanding among the participants that It is better to have a will to avoid conflict between families. Although families were painfully aware that increasing attention should be paid to health and end of life decision making, they found it difficult to choose whether to spend their efforts on writing a will or to work on the planning of end of life decisions. When asked whether they had heard about ACP, most participants answered that they had prepared a will, and only one participant who is a lawyer mentioned personal directive. Some participants mentioned that wealth is important for maintaining one s health, and the issues of life insurance and extended health insurance were also brought up. However, generally the priorities were set towards having one s financial arrangements in order: One should have funeral insurance and will. Overall, we discovered that many families considered their wealth more important (or more immediate) than their health. Knowing that their finances were in order assured them that, if something were to happen to them, they had been successful in planning for the worse. People felt that by taking care of their assets they were prepared to face the worst. Table 2. Scripts Categorized by ACP Understandings. Old and Sick Pulling the Plug Organ Donation Doctors Wealth / Wills Foreign Ideas There is not enough money left over to pay for extended medical or life insurance. We cannot take away someone s life. God brought us into this world and we need to go back to him intact, with all our organs with us. Doctors are not God. Wealth decisions are more important than health decisions. Cultural Norms We see our forefathers take care of their elderly and we do it automatically It is an unspoken family bond that we shall be taken care of by our families. This is always a difficult decision and we are divided on this issue End-of-life decisions are left to our families. We want to donate our organs but need to be informed how to do this. Doctors views are important and we should not ignore them. We are more worried about our property than our health.

23 Understanding Advance Care Planning within the South Asian Community 23 Don t Talk about That We cannot speak of bad things or else we shall make them happen We do not think of this, although it would be helpful if we did. It would avoid family disputes at painful times. Our family is divided on this. I want to donate my organs but my wife who is religious, does not. The older family members, especially males, have more authority than what the doctors say. I entrust my family to carry out my wishes. Leave it to God We don t plan about death and severe health conditions as we believe it s not in your control and discussing and preparing for it puts you in control rather than God and the higher power. According to our religion we have to preserve life until the end. We are ready to take organs, but not to give them. All our body parts should be with us when we die. Doctors cannot hear God. We have to make our wishes known in advance. God is the one who makes the final decision as to when it s time to go. Too Busy with Life Never took it very seriously as our priorities are education and economics. It is not taboo these days but it s just that no one has time to talk about it. I am so stressed I cannot think of such things. I was too busy with work to plan my personal directive prior to my surgery. Decision is different when you are a new immigrant. Wealth vs. Health One should have funeral insurance and will. I don t want to be hooked up on a machine when my time comes to go. I would like to donate my organs if something were to happen. Many people don t include their health decisions in their will, it s all about who gets what.

24 Understanding Advance Care Planning within the South Asian Community 24 Learnings from Reflect Focus Group For the REFLECT focus group, we held a community forum. After we presented our findings from the COLLECT phase, we observed that people were more open and receptive to the idea of ACP. They were genuinely interested in knowing what was presented earlier and were impatient to share their own thoughts and ideas about improving ACP. They shared a number of suggestions as how to enhance the system of AHS to better engage with the South Asian community members. The round table talk on each script provided an outlet and flight of ideas and suggestions. The groups were vocal in their thoughts, were forthright and expressive when making suggestions, and didn t hold back. They shared their own stories about ACP and end of life decision-making, and discussed how they would react or prepare if anything happened to them. The following are the three key categories that emerged from the REFLECT stage. 1. Got it!!! We were amazed to witness that, after we introduced ACP and our purpose for gathering, participants immediately understood and shared their excitement by saying, Such a great thing we are doing by bringing this awareness and that more should be done. 2. Consolidation of experiences around end of life We observed that the group learned a lot from each other by listening to each other s experiences. Like a family, all of them shared each other s empathies and sympathies. Similar to a family, their suggestions and comments became one voice. Regardless of belonging to different cultures and religions, but through the same language of expression (Hindi, Punjabi, Urdu, and English), forum participants engaged in a sharing of knowledge, feelings, grievances and ideas. This sharing was an important fact to consider and a strong facilitator of the group s learning, given the cross-cultural and religious differences among the participants in the South Asian community. 3. Community capacity In the community forum we had an opportunity to observe the interactions among the participants, and to have a rich input of ideas by people who represent the South Asian community. Our observations and analysis revealed that this is an articulate community of people who are actively engaged in their health and willing to explore and implement new ideas. It became evident to us that there is a strong community capacity to integrate health practices such as ACP, which have been foreign to the community members, but are now seen as helpful. Along with being open to new ideas, participants demonstrated the community s strong

25 Understanding Advance Care Planning within the South Asian Community 25 connection with their traditional values and established community norms. We interpreted this connection as a basic asset that can contribute to this community s capacity to integrate a process of facilitating health decisions. With the strong family traditions, close communal ties, and the high level of responsibility people feel for each other, healthy practices can be naturally embedded within the community. Considering the importance of the cultural environment, it is crucial that we understand the South Asian culture and build on the families and communities capacity when creating awareness on health issues or trying to implement new ideas. It is important to use the capacities within the community to build a model that will help create more dialogue around ACP. One of the observations during the community forum was the high level of community member s participation, their openness and receptiveness to new ideas. The forum facilitated an environment where people felt that their views were valued and acknowledged. In this environment participants felt in control of the process, and therefore readily offered their suggestions, knowing that their basic values were understood and accepted. From this process we learned that change can be more effective and sustainable if it is initiated within the community and implemented by community members themselves, based on their existing cultural practices and norms. Discussion This patient engagement research study allowed us to obtain a better understanding of Advance Care Planning within the South Asian community. We achieved a better understanding because of the active participation from members of the community, who helped to set the stage for each step of the study. Community members were eager to vocalize and share their personal experiences around ACP. These stories became a major contribution to our findings. Not only were we able to uncover barriers that individuals and families may encounter when planning end of life care, but we gained valuable insights into the South Asian community. Language was a major challenge, both in terms of explaining the concept to participants, and in allowing participants to express their personal views. However, as our research method evolved based on the learning from the previous steps, we were able to overcome this challenge. We found that individuals felt comfortable sharing their thoughts about ACP in the form of a story or a script. These scripts allowed us to understand the community s perspective on ACP. One key aspect that emerged from this research project was the richness and strength of culture that exists within the South Asian community. As members of the community, we had expected that various cultural factors would influence individual s perspective on ACP. However, we did not realize how important culture was for the community members until we

26 Understanding Advance Care Planning within the South Asian Community 26 analyzed the data. Even though the scripts captured the cultural essence that is valued among the community, it wasn t until the end of the study that we realized that culture is the heart of the community. The majority of the community members identified themselves with their cultural beliefs and values, which may have included their strong connection with God and strong family ties. For some, these cultural beliefs may be considered as a barrier when making important decisions, such as ACP. However, within the community, these values are viewed as gems that are priceless, which led us to conclude that people s reliance on cultural and community norms should be rather considered as an asset and a powerful facilitator of natural decision making processes. Therefore, it is crucial that we understand the South Asian culture and build on this strength when creating awareness on health issues. As members of the South Asian communities, we have re-discovered the value of culture within these communities. We have realized the importance of building on this culture and using it to our advantage when engaging members of the community in health. It is important to use the capacities within the community to build a model that will help create more dialogue around ACP. The changes that should take place need to be naturally embedded within the community. We also discovered tactics that are commonly used when engaging members of the community in research. The importance of attire within the South Asian community is a key engaging factor. During the family interviews, one of the researchers would always wear traditional stylish clothing, and participants would always compliment her. This became a common conversation starter, which would ease both parties into the discussion. As in other communities, food brings people together. We witnessed that many key discussions happened when people were eating and enjoying themselves. Reflecting back on the research, we realize that we have made many new discoveries, not only as researchers, but also as members of the South Asian community. When we embarked on this project, we were interested in obtaining insight into the community and their understanding about ACP. As the project progressed, we learned that not only there is a lack of understanding of the concept of ACP, but also there is a shortage of resources available for community members to access when planning their end of life health decisions. Despite the challenges and limitations, as a result of this research we had the opportunity to engage with the South Asian community and obtain valuable information about the community s perceptions of ACP. We have included participant comments throughout the report to engage the reader and to present a realistic view of the various situations that patients and their family members may have to consider while preparing for Advance Care Planning.

27 Understanding Advance Care Planning within the South Asian Community 27 Recommendations We have grouped our recommendations into three categories: 1) methodological considerations, 2) building on community capacities, and 3) involving health care professionals in ACP discussions. 1. Methodological Considerations The following are the key recommendations we would suggest to other researchers who are engaging patients and families belonging to a specific community. a) Adapt the research method if necessary. We adapted the PaCER method to accommodate South Asian cultural norms by conducting family interviews, which facilitated the collection of rich and detailed data. Family interviews allowed us to tap into the South Asian culture and we learned the importance of family dynamics when discussing a complex concept, such as ACP. We also adapted the PaCER method by conducting a community forum for the REFLECT focus group, which allowed us to inform and engage the community at large. b) Utilize researchers who are members of the community. It is important that the researchers who are carrying out the study are members of that particular community. Membership created a positive relationship between the researchers and the participants by establishing common ground between the two groups. We discovered that having a member from one of the three South Asian communities made it easier for the families to identify with and relate to the researchers. Because we were members of the South Asian community, we were already aware of certain cultural norms before conducting the interviews. We knew that family played an integral role when making important decisions, and, due to our personal connections, did not have any trouble recruiting families for the interviews. This passport into the community gave us access that external researchers may have had difficulty in attaining: families trusted us and were comfortable sharing their personal experiences and stories regarding ACP. c) Be creative and flexible in data collection. When conducting research in foreign languages, we would advise researchers use the appropriate language to capture the concept and adapt their method when challenged with language translation. In our study, we struggled with expressing the idea of ACP within the South Asian community, because the words Advance Care Planning did not directly translate into the primary South Asian languages. During the SET focus group, we discovered the majority of the participants were using personal stories to express their perspectives on ACP. As a result, we decided to use vignettes when talking to families, which allowed them to better grasp this concept and eased them into relating their own personal narratives. Therefore, we emphasize the

28 Understanding Advance Care Planning within the South Asian Community 28 imperative of adapting language and research methods when engaging patients and families using their native languages. 2. Recognize and Build on Community Capacities The South Asian community is a vocal community of people who are actively engaged in their own health. Their capacity became evident to us throughout the study when community members spoke about their views regarding ACP. Given the education and sophistication levels within the community around health, we wanted to find ways to capitalize on the community capacities that already existed. The following are some of the key recommendations made by participants. a) Inform the community through forums and seminars. Most participants said that the concept of ACP was foreign to them. They had never heard about ACP, which made it difficult for them to think about a concept that did not translate into their language. As a result, many participants recommended that, before they could think about their health wishes, it would be beneficial for them to have some background information regarding ACP. Participants suggested this information could be provided via seminars and forums within the community. These seminars should held in their native languages and could take place at various religious institutions and community centres. Many members of the South Asian community go to the temple or mosque as part of their daily routine, and they use these institutions to obtain information about community events. Using these locations to initiate conversations and discussions about ACP would be more effective than handing out pamphlets or brochures. In our experience, the community forum provided a valuable platform to effectively engage large groups of people and empower them to take responsibility and control over the issue. The format of the community forum facilitated open discussions where community members felt included and validated with regard to important issues. Many thoughtful and creative ideas emerged in our community forum that might be considered for other communities as well. Our participants suggested that information sessions and community forums in different parts of the city would be an excellent way to inform other Calgarians about ACP. b) Involve religious leaders in ACP discussions. South Asians are naturally reluctant to talk about death, because they believe discussing death will precipitate the event. This belief is associated with their faith that God will take care of everything if something bad were to happen to their family. However, they are predisposed to societal influences, which place religious leaders at top of the social hierarchy, followed by politicians and businessmen. Above all of these societal influences, the South Asian community considers doctors as the most trusted influences when it comes to their health. These

29 Understanding Advance Care Planning within the South Asian Community 29 officials are trusted, listened to, and followed explicitly. We suggest it is imperative to involve these leaders in ACP discussions to attain the fastest impact and to sustain ACP in South Asian communities. c) Respect cultural norms in ACP discussions. In South Asian communities, the family is the strongest tie and influences decisions within the community. While the oldest child or the male spouse is usually responsible for making all important decisions, all members of the family are respected and heard. Hence, conversations around ACP need to be multi-generational and include the entire family. In some communities, cultural norms of segregation may need to be respected, and conversations that are led by women and involve women only may better serve these groups. Cultural norms represent a positive potential to build upon, rather than a barrier to introducing healthy practices, as they are often perceived. Respecting cultural norms can help build on the strengths of the community. 3. Involve Health Care Professionals and Create Effective Means to Pass Information Participants offered suggestions about how health providers could take on an active role to introduce this concept to their community. Many participants also recommended that we build on the existing systems of distributing information to inform community members and implement ACP within the community a) Encourage doctors to initiate the discussion. Many participants reported that their community members have a tremendous respect and regard for medical professionals, and often hand over authority to their doctors when making final decisions. Many participants believed the conversation around ACP should be initiated by healthcare providers. Because ACP is a sensitive topic, many participants said they felt more comfortable talking with their doctors about end of life planning, instead of their friends and family. These recommendations indicate that ACP should be integrated into the health care system, such that all people are required, or actively invited to document their end of life decisions. Health providers should naturally embed the general discussion about end of life within the community. These discussions could be initiated at the primary care level, since majority of the community members have family physicians. Discussion with primary care physicians would provide people with the opportunity to ask questions and enable them to obtain information which they could pass along to their friends and family. Because South Asian community members highly regard health professionals, primary care physicians would be the ideal first point of contact in discussions regarding ACP.

30 Understanding Advance Care Planning within the South Asian Community 30 b) Translate information materials. Participants suggested that a form in various languages be distributed within the community, door to door, or at doctor s offices and registries. They recommended the form be mandatory for everyone to complete. This information could then be documented under each individual s health number, so that if something happened, the information could be quickly accessed. One participant suggested that people could complete a questionnaire on an ipad while waiting at the doctor s office. c) Use technology. One participant recommended that an online checklist be developed. This checklist would ask a series of questions around ACP and would be sent directly to Alberta Health Services. Based on the individual s responses, the software would automatically write the individual s advance care plan for them. People would update their responses annually. This information could easily be accessible to medical professionals during a health crisis where the individual cannot speak English, for example, an EMS team could access a patient s record and know how they want to be cared for. d) Use existing systems to normalize receipt of information about ACP. One participant suggested that there should be an option when you get your license renewed to include your end of life decisions. This particular application would be updated every time the individual renews their license. Not only would the ACP information be attached with the license, but it would encourage people to complete the forms. It was also suggested that information about ACP should regularly be sent out with important government letters such as tax returns or property tax letters. This would ensure that people are constantly being informed about ACP. Conclusion As the South Asian population continues to grow old in Canada and use the health care services available here, there is a need to address the specific needs of this population. However, literature and educational material, especially on issues of understanding Advance Care Planning among South Asians, is limited. We hope that this research report will contribute to building the knowledge about the South Asian community and their understanding of ACP.

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33 Understanding Advance Care Planning within the South Asian Community 33 Appendix 1. Narrative Interview and Story Analysis Guide (the COLLECT stage) Information about the interviewees Names of PaCER Researchers Interview questions: Share a story around ACP What would you have done if something similar were to happen in your family? What have you done around ACP? Why or why not? Possible prompts: What would have helped you in the situation? What would be most difficult? Story Analysis Title Story Context Plot (Triggers; strategies) Outcomes/Consequences/Lessons (PER Researchers' summary) Storyteller's reaction to telling the story/what they learned: Your reaction to the story, what you learned:

34 Understanding Advance Care Planning within the South Asian Community 34 Appendix 2. The Map of South Asia Source: