Health Communication

ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20

Managing Communication Tensions and Challenges During the End-of-Life Journey: Perspectives of Māori Kaumātua and Their Whānau John Oetzel, Mary Simpson, Kay Berryman, Tiwai Iti & Rangimahora Reddy To cite this article: John Oetzel, Mary Simpson, Kay Berryman, Tiwai Iti & Rangimahora Reddy (2015) Managing Communication Tensions and Challenges During the End-of-Life Journey: Perspectives of Māori Kaumātua and Their Whānau, Health Communication, 30:4, 350-360, DOI: 10.1080/10410236.2013.861306 To link to this article: http://dx.doi.org/10.1080/10410236.2013.861306

Published online: 06 Jun 2014.

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Date: 12 November 2015, At: 14:32

Health Communication, 30: 350–360, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2013.861306

Managing Communication Tensions and Challenges During the End-of-Life Journey: Perspectives of M¯aori Kaum¯atua and Their Wh¯anau

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John Oetzel and Mary Simpson Department of Management Communication University of Waikato

Kay Berryman Waikato-Tainui College for Research and Development

Tiwai Iti and Rangimahora Reddy Rauawaawa Kaum¯atua Charitable Trust

The purpose of this study is to explore the cultural practices and communication tensions perceived among M¯aori kaum¯atua (elders) and their wh¯anaunga (extended family) during the end-of-life journey. Further, the study aims to explore the manner in which the tensions are managed. The study was framed by relational dialectics theory and included interviews with 21 kaum¯atua and focus groups with 39 wh¯anau members. The study identified three cultural practices (dying at home, prayer, and song) that helped to build connection among the family members and also helped to connect the dying person to the spiritual world. Further, four communication tensions were noted: (a) autonomy and connection; (b) conflict and connection; (c) isolation and connection; and (d) balancing the needs of self and other. To manage these tensions, the following strategies were used: (a) coordination conversations; (b) inclusion in decision-making conversations; (c) emotional support within the wh¯anau; and (d) passing on lessons to the next generation.

Palliative (or end-of-life) care is the care of people dying from active, progressive, or other conditions that are not responsive to curative treatment. Such care aims to optimize an individual’s quality of life and support the individual’s family through the illness and after death. Palliative care is a significant health care issue especially in the context of aging populations. Communication among caregivers/family members and patients during the end-of-life journey is important and fraught with challenges. Caregivers are family members or friends who provide assistance without pay. Caregivers play a key role in providing end-of-life care, especially in the context that most people prefer to die at home (Lawrenson, Correspondence should be addressed to John Oetzel, Department of Management Communication, University of Waikato, Hamilton 3240, New Zealand. E-mail: [email protected]

Smyth, Kara, & Thompson, 2010; Sullivan et al., 2003). Caregivers are often ill-equipped to handle the physical and emotional strain of providing care, which results in tensions and challenges (Gysels, Pell, Straus, & Pool, 2011). Further, the end-of-life journey is stressful for all family members (Gysels et al., 2011) and involves a series of tensions and challenges (Young & Rodriguez, 2006). Managing these challenges also provides opportunities to connect in the final days of a loved one’s life (Keeley, 2007). Finally, these tensions and challenges are managed and negotiated within unique cultural contexts whose factors need to be considered (DeCourtney et al., 2010). The purpose of this study is to examine the communication tensions and challenges perceived among M¯aori kaum¯atua (respected elders aged 55 years and older) and their wh¯anaunga (extended family; often shortened to wh¯anau when referring to members of the wh¯anaunga)

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during the end-of-life journey. Further, the study aims to explore the ways in which tensions are managed. M¯aori are the indigenous people of New Zealand and represent a unique cultural community with rich histories, systems of meaning, and values. Thus, the study also explores cultural practices around death and dying within the extended family/caregiver context and uses this information to frame an understanding of managing the tensions. One distinctive component of M¯aori culture is the focus on collectivism, or group-oriented values and perspectives that apply to the larger extended family and not just the immediate family (Durie, 2003). This study can help to illuminate how a collective-oriented culture navigates the end-of-life journey. Given the strong collective orientation of M¯aori culture, the assumption might be that a focus on tensions and challenges is inappropriate because of the strong emphasis on harmony in such cultures (Durie, 2003). However, this assumption may be misguided, as the tensions and challenges are still relevant for M¯aori. In some ways, these tensions are more prevalent given the emphasis on caring for loved ones at home thus resulting in increased responsibilities for the extended family (Taskforce, 2010). Further, understanding these challenges and tensions helps to show health care workers and family members what they may face in order to help better navigate the end-of-life journey.

LITERATURE REVIEW This study centers on M¯aori culture and its practices and communication challenges for wh¯anau around the end-oflife journey. The literature review begins with a general overview of M¯aori cultural values and perspectives, including a brief overview of cultural perspectives toward death and health care utilization. We then provide a description of relational dialectics theory (RDT) and then briefly review literature on RDT within the health care context. Finally, we discuss specific caregiver communication challenges and tensions and communication approaches to manage tensions. ¯ Maori Culture M¯aori are the tangata whenua (people of the land) of ¯ Aotearoa (New Zealand). M¯aori share common values, customs, and perspective and yet are also a diverse set of iwi (tribes), hap¯u (subtribes or clans), and marae (local communities). In 1840, the Te Tiriti o Waitangi/Treaty of Waitangi (the Treaty) was signed in 1840 between the British crown and around 500 M¯aori chiefs (Orange, 1987). The Treaty made Aotearoa a British colony and provided equal rights to M¯aori as British citizens. Three versions of the Treaty—M¯aori, English, and English translation of M¯aori— resulted in discrepancies. The British signed the English version, while the M¯aori chiefs signed the M¯aori version. The history of colonization and the disputed Treaty frame

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the historical relationships of M¯aori and P¯akeh¯a (European New Zealanders). The M¯aori version of the treaty provides a strong framework for M¯aori to encourage self-determination in all aspects of life including health care. M¯aori tikanga (cultural values, principles, and practices) emphasize various relationships and agenda. Some of the central values include wh¯anaungatanga (kin relationships), taonga tuku iho (customs passed down the generations), tino rangatiratanga (self-determination), and kaupapa M¯aori (M¯aori philosophy or focus) (Simpson & Ake, 2010). Historically, wh¯anau members lived in close proximity to each other and shared in collective activities including caring for sick and dying elders (Taskforce, 2010). Changing economic and social structures (e.g., urbanization, globalization) have changed the relationships with wh¯anau living in different parts of the country, and even other countries, making collective activities difficult. However, most wh¯anau members maintain strong social connections and a close identification with iwi, hapu, and marae (Taskforce, 2010). Given the focus on taonga tuku iho, kaum¯atua are revered and valued. Kaum¯atua are critical because they are “carriers of culture, anchors for families, models for lifestyle, bridges to the future, guardians of heritage and role models for younger generations,” (Taskforce, 2010, p. 14). Thus, understanding kaum¯atua perspectives during the end-of-life journey has great influence on many facets of M¯aori culture. M¯aori perspectives toward the end-of-life journey center on balance, unity, and harmony (Ngata, 2005). Death, dying, and bereavement are central to life and the natural balance of life (MacLeod, 2008). The living and spiritual worlds are closely connected and the end-of-life journey is about making sure a person’s wairua (spirit) has balance, calm, and connection to the wh¯anau in order to assist it on its journey to the spirit world (Ngata, 2005). During the end-of-life journey, there is a need for connection to the wh¯anau (Bellamy & Gott, 2013; Ngata, 2005). Home is not only one’s residence, but also the iwi, hapu, and marae. For these reasons, some M¯aori avoid palliative care services unless they can be offered in the home. M¯aori tend to want to be hands-on in the care of loved ones during the end-of-life journey in order to ensure balance, unity, and harmony (Bellamy & Gott, 2013; Ngata, 2005). The valuing of kaum¯atua and changing social relationships, along with the perspectives about the end-of-life journey, provides a context for creating and understanding the communication challenges during the end-of-life journey. Finally, New Zealand has a public health system where citizens have access to free primary health and hospital care. The government contracts with private health organizations, such as charitable trusts, and for-M¯aori-by-M¯aori agencies to provide primary health services. Health organizations offer a range of mainstream and traditional healing practices. Palliative care is offered within the public hospitals, as well as by Hospice New Zealand, a charitable trust. M¯aori currently underutilize palliative care services

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even with more culturally relevant services now available (Minister of Health, 2007).

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Relational Dialectics Theory Relational dialectics theory (RDT) is often used as an umbrella framework for the study of dialectics. A dialectic is the interconnection of opposing tensions (Baxter & Braithwaite, 2007). The study of dialectics focuses on the tensions and challenges that influence communication relationships. RDT is framed by four assumptions: contradiction, totality, praxis, and change (Baxter, 2007). Contradiction is the major component of RDT (Baxter & Braithwaite, 2007) and involves opposites or mutual negation. Opposites can be complementary, mutually exclusive and exhaustive, or mutually exclusive and not exhaustive (Baxter & Braithwaite, 2007). Contradictions are unified in that tensions are interdependent. Finally, contradictions are dynamic in that they are negotiated and managed through interaction. Totality is the second assumption and refers to the larger context and all of the contradictions that exist in a particular situation (Baxter & Braithwaite, 2007). Multiple contradictions generally happen within specific relationships and contexts; these contradictions can be primary or secondary. Also, internal or external factors in the relationship can influence the contradiction (Baxter & Braithwaite, 2007). The third assumption is praxis. Praxis is the communication approaches for managing the dialectic and generally includes three categories: either-or, both-and, nonfunctional (Baxter & Braithwaite, 2007). Either-or strategies involve selecting one pole in the unified pair at a particular time (e.g., segmentation involves selecting one pole in a particular situation and the other pole in a different situation). Both-and strategies utilize creative strategies for approaches for attending to both poles simultaneously (e.g., integration is satisfying both poles at the same time). Nonfunctional approaches include ignoring the tension (e.g., denial focuses on wishing away one pole). The finale assumption is change. Dialectics are created, managed, and negotiated over time (Baxter, 2007). The most frequent change is a cyclical model where consideration to one tension at one time leads to pressure to address the opposite in the future (Baxter and Braithwaite, 2007). Further, dialectics are defined, redefined, and accentuated in various ways over time, resulting in ongoing change in relationships. In health care contexts, researchers have focused on the type of contradictions and the communication approaches used to manage these tensions (Considine & Miller, 2010; Dean & Oetzel, 2014). For example, Considine and Miller (2010) conducted a 5-month ethnographic study of hospice workers to explore the processes by which workers provide comfort during palliative care. The primary dialectic was the tension between leading and following in the discussions of spirituality at the end of life. The majority of workers

managed the dialectic by leading and following in different situations (i.e., segmentation) or by addressing multiple goals in the interaction (i.e., integration). In sum, RDT provides a framework for caregiver communication that includes tensions and challenges. The management of these tensions influences the satisfaction and quality of the end-of-life journey. The next section explores the context of caregiver communication and introduces some of the potential challenges. Challenges and Tensions in Caregiver Communication Caregivers of patients with serious chronic and lifethreatening conditions face a several challenges and tensions that come from outside and inside the family environment. Outside the environment, key issues include the lack of information and effective communication from physicians (Cherlin et al., 2005). For example, Cherlin et al. (2005) surveyed 218 family caregivers caring for patients with terminal cancer. The communication concerns included 21% not being told the illness could not be cured, 40% not being told of life expectancy, and 32% not being told about hospice. Within the family environment, studies identify the impact of caregiving on the caregiver (Gallagher-Thompson, Dal Canto, Jacob, & Thompson, 2001; MacLeod, 2011). For example, MacLeod (2011) examined the tensions experienced in caregiver/spousal relationships after a significant illness and found that roles and responsibilities change, life patterns of caring for self and other change, and new perceptions about life left to live emerge. Thus, the challenges and tensions for caregivers are broad and emerge through dynamic interaction over time. Older patients and palliative care recipients also report a concern for the burden placed on their extended family caregivers (DeCourtney et al., 2010; Gysels et al., 2011). For example, Young and Rodriguez (2006) interviewed 30 elderly veterans and found three tensions that they manage when considering their end-of-life care: (a) quality of life versus quantity of life, (b) benefits versus costs of treatment, and (c) control versus lack of control. In considering these tensions, the participants were cognizant of the impact on their families as well as on themselves. Managing Communication Challenges Negotiating the tensions and challenges for caregivers and patients is difficult and requires good communication skills and support networks. For example, Savundranayagam and Orange (2011) found that effective communication strategies were associated with less stress and relationship burden for caregivers of patients with Alzheimer’s disease. WittenbergLyles, Goldsmith, and Ragan (2011) examined the ways that narrative and communication related to the end-of-life journey for six families with a patient dying of cancer. They

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found that communication that reflected awareness of dying (as opposed to denying dying), embraced opportunities to plan for end-of-life care, and collaborated with family and caregivers led to a journey that was comforting for families. Another aspect of the managing of tensions can be social support and connection. Social support refers to information or actions that lead individuals to perceive that they are cared for or receive aid and comfort from others when they need it (MacGeorge, Feng, & Burleson, 2011). Several studies demonstrate the benefit of social support for addressing challenges and tension associated with caregiving. MacLeod, Skinner, and Low (2012) collected data from 39 caregivers for patients in end-of-life care. They found that the greatest needs for support were communication, emotional support, education, advocacy, and personal fatigue. Keeley (2007) interviewed 55 people who discussed their final conversations with a loved one who had died. She found five important functions of the conversations: confirmation of love, bolstering identity, validating spiritual beliefs, maintaining relationships, and moving toward reconciliation in the case of fractured relationships. Thus, social support and connection help to address tensions during the end-of-life journey. With this brief background of M¯aori culture and the review of literature on RDT, caregiver communication challenges/tensions, and managing tensions in mind, this study addresses three research questions: RQ1: What are the cultural practices toward the end-of-life journey for kaum¯atua and their wh¯anau? RQ2: What are the communication tensions that kaum¯atua and their wh¯anau identify during caregiving in the end-of-life journey? RQ3: What are the communication and support strategies used by kaum¯atua and their wh¯anau to manage communication tensions?

METHODS Two research approaches, kaupapa M¯aori and communitybased participatory research (CBPR), frame this study. A kaupapa M¯aori research approach (Tuhiwai Smith, 1999; Mane, 2009) offers kaum¯atua and wh¯anau opportunities to assess roles and expectations of each other and supports empowering interactions between generations, thereby preparing future generations. A kaupapa M¯aori approach provides a culturally appropriate method to research in the local context as it normalizes M¯aori worldviews and practises (Mane, 2009; Tuhiwai Smith, 1999). This approach insists that all of the researchers must be respectful of the Treaty, M¯aori language and culture, and the selfdetermination of M¯aori communities, including iwi, hapu, and marae (Tuhiwai Smith, 1999). CBPR was utilized to ensure that the research team stayed consistent with a kaupapa M¯aori approach. CBPR is

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a collaborative approach that equitably involves partners in the research process and recognizes the unique strengths that each partner brings (Wallerstein & Duran, 2006). We developed an advisory board consisting of 10 kaum¯atua and health care workers associated with a charitable trust that serves the needs of kaum¯atua. This group’s role was to ensure the cultural integrity of the research by providing oversight, guidance, and input into all the research methods, procedures, data-collection processes, and analysis undertaken by the research team (composed of university researchers, doctors, and community-based M¯aori researchers, including the principal investigator). Participants Participants included 21 kaum¯atua and 39 wh¯anau members. Individual interviews were conducted with 5 kaum¯atua (male elders) and 16 kuia (female elders; collectively referred to as kaum¯atua). Their average age was 68 years, and 19 were M¯aori, 1 P¯akeh¯a, and 1 Pasifika (Pacific Islands). Of the M¯aori kaum¯atua participants, 9 iwi, 20 hap¯u, and 20 marae were reported. The wh¯anau members, from 14 distinct wh¯anau groups, participated in 5 focus groups. Participants’ ages ranged from 32 to 85 years and included 30 females and 9 males, and 35 M¯aori and 4 non-M¯aori. Iwi, hap¯u, and marae affiliation information was not collected from wh¯anau members. All participants had experience in end-of-life care with a partner, close friend, or wh¯anau member. Data Collection We developed an interview guide and process that focused on providing safe space and cultural appropriateness for kaum¯atua to share their stories about direct and indirect experiences with palliative care. The interview guide was meant to be applied with flexibility (i.e., generally unstructured) and focused on encouraging kaum¯atua to tell their stories, which was acknowledged by our advisory board to be the most culturally appropriate way to gather valuable information from kaum¯atua. Interviews lasted on average of an hour and ranged from 45 to 90 minutes. As with the kaum¯atua interviews, we requested permission and guidance from an advisory board to ensure that processes were culturally appropriate and facilitated wh¯anau participation. We developed four provocative statements (wh¯anau need to know what is going on; only wh¯anau should care for wh¯anau; kanohi ki te kanohi [face-to-face] is the best approach; and wh¯anau and tikanga are the most important things) designed to enable wh¯anau to tell their stories about direct and indirect experiences with palliative care and the end-of-life journey in general, as well as promote discussion within the group. The provocative statements and question prompts were applied with flexibility and focused on getting wh¯anau to tell their stories. Focus groups were an average of 75 minutes.

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All of the research tools were developed to be kaum¯atua friendly (e.g., large font), including participant information sheets and consent forms, and open-ended questionnaires with prompts. The research team designed all information sheets and consent forms using te reo (language) M¯aori and English to offer choices to participants. Also, a kaum¯atua team member was present to facilitate interviews in te reo M¯aori in case participants requested it.

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Data Analysis The kaum¯atua interviews and wh¯anau hui/focus groups were transcribed and then analyzed using thematic analysis to identify patterns of meaning across the data (Braun & Clark, 2006). All analyses were completed by two researchers— one M¯aori and one P¯akeh¯a—to provide cultural-insider and -outsider approaches and a level of confirmation of the themes. Themes had to be agreed upon by both researchers for inclusion. There was great overlap between the coders with each coder offering one theme that the other had not initially identified. The coders discussed, clarified, and developed the themes. The research team and advisory board then reviewed the themes. Finally, the themes were shared with participants for validation. We invited participants to critique, change, or clarify the themes. The approach to the thematic analysis was an exploratory one with a cultural perspective at the center. The tensions, challenges, and dialectics emerged from the thematic analysis guided by a framework of relational dialectics. Our approach emphasized the reflection and respect toward the cultural perspectives that were offered by participants given the uniqueness of this group.

RESULTS Cultural Practices During the End-of-Life Journey The first research question focused on cultural practices reported by kaum¯atua and wh¯anau during the end-of-life journey. Participants identified a number of cultural practices during the process of dying that serve as markers of identity and are about connecting wh¯anau members with the person dying, as well as with each other. They also connect wh¯anau spiritually and physically and help to prepare the loved one for the next world. These practices include the importance of dying at home, karakia (prayer), and waiata (song). The first cultural practice is the desire to be at home— both close to wh¯anau and close to their iwi, hapu, and marae for the purpose of spiritual connections to the land. For example, Aroha talked about her perspective on receiving hospice care outside of the home when her mother was dying: “I’ve got a thing for [care] homes even though they get good care. But it, it’s different too. I suppose to having wh¯anau around you. I’d say my mother probably would

just deteriorate if she was in a [hospital].” For Aroha, care homes were negative as they would not allow a loved one to be connected to the wh¯anau. Kohu talked about her niece’s preference to die at home: “She was in Hospice and then she went home and she wanted to die at home.” For Kohu, being home meant being connected to the land and the wh¯anau. A final quote from Moana shows how the spirit, home, and wh¯anau are all connected together and reflects the importance of connection and why most participants want to die at home: “You know, you need, you need to have a wh¯anau to awhi (embrace/connect). And the warmth comes from everyone that’s there—you know, the wairua (spirit).” The second practice is karakia (prayer). Karakia was used by wh¯anau to care for the dying person and it assisted with the transition from this life to the next. This was particularly important when someone was close to death as karakia was part of protecting the person on his or her way to the next world. For example, Kala stated, “You are constantly praying, because you know there are people there; his t¯upuna (ancestors) are coming to get him.” The reality of this connection was particularly evident when Val talked about witnessing a dying person talking to people who had passed on: Mum would be talking and smiling and doing hand gestures her body language you can just fill in the gaps. . . . She would be having this conversation and you would just wish you were in the conversation with her then she would start laughing and you know wow! She’s having a grand old time—having a reunion.

These quotes illustrate the ease with which wh¯anau were able to talk about such experiences and the importance of karakia connecting the spiritual and material worlds. The third cultural practice was waiata (song). Wh¯anau members highlighted the role of waiata in managing pain and helping the dying person with their journey. Some wh¯anau members also talked of the dying person preferring to rely on waiata for pain management rather than morphine; they wanted to be present and lucid with their wh¯anau during their last hours and days, and not “out of it.” For example, Pare noted about caring for her brother: What they used to relieve that pain was to sing. And I would have to sing my brother’s song to him. Even though you could see the pain on his face, but you know when his song was sung to him, it soothed him a lot.

Waiata also served a spiritual purpose, as Erina noted, One of Mum’s cousins had arrived and . . . she said, “I’d like to go in and see mum on my own I would like to sing to her.” . . . It wasn’t long after the cousin had come out . . . that two of the sisters went up . . . they came out and said, “She is gone.” So for us it was a very spiritual, being spiritually involved with her journey.

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These examples show how waiata supports the dying person, wh¯anau, and others as they experience care in dying. Waiata are spiritually enriching and emotionally supportive.

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Communication Tensions During the End-of-Life Journey The second research question focused on communication tensions during the end-of-life journey. Those who are ill tend to think of these tensions in terms of how they are burdening their wh¯anau and also the challenges they face in their last days. Wh¯anau members tended not to think of these as burdens; rather, they framed them as responsibilities for caring for the ill person and also the larger wh¯anau who are helping to care for the emotional, physical, and spiritual needs of the ill person. These responsibilities can still be stressors and place various strains on caregivers, patients, and wh¯anau members. We present four communication tensions/challenges: (a) tino rangatiratanga and tino wh¯anaungatanga (autonomy and connection); (b) conflict and connection; (c) isolation and connection; and (c) balancing needs of self and other. Tension 1: Tino rangatiratanga and tino ¯ whanaungatanga. This tension represents a dialectical relationship between tino rangatiratanga (autonomy, self-determination) and tino wh¯anaungatanga (connections/relationships). The tension happens as kaum¯atua want to have love, support, and connection with their wh¯anau. They also want their mana (the supernatural force in a person), which is integral to tino rangatiratanga, to remain whole, as well as to maintain their self-respect, dignity, freedom, and respect from others. In terms of tino rangatiratanga, kaum¯atua want to be accorded dignity and respect. Hare noted that his father had been the head of the family and always was respected and listened to. When he was dying, he lost some of his mana and tino rangatiratanga because he was being told what to do and not being allowed to do things for himself. Mere (kuia) noted this feeling directly: “Don’t take away my rights. Yeah don’t take away my rights and as long as we still got it up here.” Kei pointed out this concern when caring for her brother: “What he wants is more important than what we want, you know. Like he said, ‘I’ve got to have some dignity.’ Well whatever you want bro that’s all we want too.” The quotes and stories support the importance of tino rangatiratanga or M¯aori values of self-determination and power. Wh¯anaungatanga is also a key M¯aori value and thus balancing the values of tino rangatiratanga and tino wh¯anaungatanga can be challenging and contradictory. Huia (kuia) noted the challenge in discussing her desires at the end of life: You wouldn’t want them [wh¯anau] to come in run in every half an hour to see if you’re alright. Once you know, they put me in a home that is really nice and go on with their life. . . .

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The good parts is to see the smile on the wh¯anau face to know that there is somebody around round them all the time you know.

Thus, Huia recognizes the dual concerns of autonomy and wanting to be around her wh¯anau. The challenge of this dialectic can also be seen in caring for a loved one. Thus, the dialectic of rangatiratanga and wh¯anaungatanga creates dilemmas and challenges for the ill person and the wh¯anau. Overall, kaum¯atua desire to keep their mana and self-respect, to be accorded dignity and respect through tino rangatiratanga, and to maintain connection to wh¯anau; in other words, they try to use both-and praxis strategies to address this tension. Tension 2: Conflict and connection. The second tension is the challenge of conflicts and maintaining connections among the wh¯anau. The end-of-life process brings out conflicts between some wh¯anau about the best way to handle the journey and also unearths unresolved conflicts among wh¯anau. Some conflicts were the results of the stressors creating frustration and anger that encouraged lashing out of each other. For example, Mere (kuia) noted, “We get built up with all sorts of things and so we start lashing out at each other and that happened to our family. It wasn’t good.” In other conflicts, there were feelings of being forgotten or excluded. For example, Hine (kuia) noted that she was only 19 when her mother died. She was the youngest and excluded from decisions or taking part in discussions and noted, The exclusion I felt really affected me . . . I ended up having confrontations with my aunty. Aunty said ‘Don’t say anything’ and I’d cry and say [to myself] ‘How could she do this to me?’ . . . out of respect for my aunties . . . you keep your mouth shut.

Finally, some conflicts occurred because of questioning decisions made earlier in the end-of-life journey. Hemi (kaum¯atua) talked about how he and his wife received a wrong early diagnosis about her cancer. He explained: And I’ve always looked at myself, “why didn’t I do something when she was going through all of that?” If I had of thought about it earlier . . . [about] changing our doctor . . . I just don’t want to think about it and I still don’t want to think about it . . . I would’ve thought about it earlier, but I’m only a human being. I’m not the one to blame and my kids even said that “It’s your fault. You should have done this and you should have done that” and said how could I do that? Even now they say that.

This tension is about balancing the perceptions and goals of all parties in order to maintain positive relationships among the wh¯anau during the end of life journey. Conflict is a natural part of relationships and connection, yet it also has the potential to upset harmony with wh¯anau. Most participants advocated segmentation as a praxis strategy during conflicts, ideally selecting connection. However, the stories illustrate choices of conflict as well.

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Tension 3: Isolation and (lack of) connection. The third tension relates to the degree of isolation or connection that people have to their wh¯anau during the end-of-life journey. The isolation was as a result of family members moving away from the wh¯anau for jobs and resulted in a lack of connection with the wh¯anau and the land. In addition, isolation was a challenge because it meant that wh¯anau caregivers had to shoulder the responsibilities by themselves. Some participants discussed the responsibilities when they were almost solely responsible for the physical and emotional care for their wh¯anau. For example, Hemi (kaum¯atua) talked about his responsibilities of caring for his children when his wife was dying: “And you know feeding family, it was a real hard thing to do. So you know during that time it was hard for me. I had to look after her and go to work and during the lunch break I had to run back home give her something to eat and run back to work and keep in contact with her.” In some cases, isolation meant being away from their cultural community. For example, Rongomai (kuia) noted about her husband: “He was diagnosed with having cancer in the stomach lining, and for about three months all I did was cry. What am I gonna do? Where am I gonna go to? Because I was in a P¯akeh¯a environment; there’s no help for, for me anywhere.” In these examples, the participants were isolated from their wh¯anau and/or cultural environment and the stress of caring for an ill loved one fell completely on them. The result was a lack of balance and unity with the wh¯anau. This tension was generally managed with a nonfunctional praxis strategy of fatalism; the isolation was not desired and yet participants were resigned that this is “how things were.” Tension 4: Balancing needs of self and other. There are emotional, spiritual, and physical needs for caring for someone who is dying. One need was the burden that the ill person felt. For example, Roimata (kuia) noted that her husband did not want to burden her when he was dying. She noted, “I looked after him because he had to go to the bathroom a lot. He had a bag and I said anytime you want to get up you wake me up. He says, ‘But I don’t like it dear.’” In addition, Pare (kuia) noted: My first experience was when my mother in-law had cancer stomach cancer and I looked after her at home. And one of the things she didn’t want to do was die in my home because she felt it might have frightened my children because they were only young when she got sick.

Thus, these participants recognize the needs of the ill person wanting to be a burden. At the same time, participants identified challenges of not meeting their own needs in order to care for others. For example, Kei (kuia) talked about her experience with her brother and following his desires of when to talk about his illness (and when not to talk). She offered: [He said] “I’m very sick I’ve got leukemia, and I’m not expected to live very long.” And I looked at him and I said to

him, “No offense bro. I’m lost for words you know.” And he goes, “Oh go make us a cup tea please” and that was it and we never talked about it again.

Thus, she did not talk about the illness with her brother again even though she wanted to talk more. The emotional challenges meant emphasizing the other’s needs over the self. Finally, other participants discussed the tangible responsibilities of caring for wh¯anau during the journey and thus meeting others’ needs over their own needs. Often these responsibilities fell to women. For example, Hine (kuia) talked about her responsibilities for taking care of the house when wh¯anau came to visit. She noted, “The place became invaded with visitors because she was so involved with M¯aori women’s welfare league and . . . people kept coming. My whole time was to keep the house turning over and seeing to her needs.” Similarly, Moana (kuia) discussed her responsibilities: “You wash the sheets; you wash the blankets; you wash the dishes; you cook the kai (food).” In both these cases, the women had significant responsibilities and put others’ needs above their own. However, they did not interpret this as a burden. As Kei (kuia) noted, “Cause it’s your wh¯anau, you just do it.” In addressing the needs of the wh¯anau and ill person, many chose segmentation as a praxis strategy. The needs of others were more important than their own needs. Addressing Communication Tensions The third research question explores the communication and social support approaches used to manage these tensions. Four strategies were identified to address tensions: (a) coordinating conversations; (b) including patients and wh¯anau in all decision-making conversations; (c) emotional support in the wh¯anau; and (d) passing on learning. These strategies emphasized connecting the wh¯anau and were used generally to address all of the tensions with more specific details noted with each strategy. Each strategy was viewed by participants to be an effective approach to address the tensions using one of the both-and praxis strategies of RDT. The most frequent strategies mentioned by participants were emotional support and passing on learning. Coordinating conversations. The first strategy was to have conversations with the wh¯anau to identify wishes and to coordinate care. Coordinating conversations allowed for the focus to be on connection, while protecting autonomy and avoiding conflict. This also ensures specific needs were met. For example, Hine (kuia) discussed her own experience with a health problem as an example of how to talk about palliative care. She stated, “The idea would be to have the conversation openly with your children . . . have your conversation with your children now and include your mokopuna (grandchildren).” Hine found that having a conversation with her wh¯anau allowed them to understand what

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was going on in the care and also to avoid some of the challenges. Wh¯anau members also suggested the importance of coordination among the wh¯anau to make sure the patient’s needs were meet and also the wh¯anau needs were met, thus emphasizing connection among the wh¯anau. They compiled records or diaries, including tasks, and listed who would do what and monitored the situation—all of which suggests an ongoing network of coordination. Wai discussed an approach to organize her wh¯anau for practical coordination during the care of a dying loved one:

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We had a roster that had about fifteen of us that included the brothers and sisters, our children, and some of our in-laws. So we had a roster and every time a new person came on, that book was there for that person to read-up on.

Such coordination was not just to be sure all tangible needs being met. In some cases, wh¯anau developed diaries for memories. For example, Rangi discussed her strategy during her mother’s end-of-life journey: Well people started arriving at the hospital and . . . I wanted to record those things and be able to tell [Mum] later who it was and what [their] name was . . . people who came to support and people who came and visited and dropped off things.

The examples illustrate the significance of coordination through conversations and records of care to share within the wh¯anau. Such coordination enabled wh¯anau to meet the needs of the patient and each other as well as to emphasize connection among the wh¯anau. Thus, this praxis strategy was one of integration. Inclusion in conversations. A second strategy was to make sure that patients and wh¯anau were included in decision-making conversations. This strategy made sure to protect the dignity of the patient and yet allowed people to be connected as well. For example, Wai and her sister, Kiriana, expressed this inclusion during their mother’s end-of-life journey: Kiriana: We had to involve [Dad] with everything. You know he couldn’t be left on side and we’re just focusing on Mum. Everything we did for Mum, we explained to Dad what we’re doing, [and] why. Wai: He was always in the room . . . Every time everyone was there. My Father was there. My Mother was there. We were there. Never left out. Kiriana: So we did very little without our Father knowing and that was just to keep him involved and him aware of what was happening to his partner, our Mum.

This conversation illustrates the commitment of wh¯anau to include their father in decisions about care for their mother. The dignity afforded their father by his involvement was of central concern to the daughters. It also reflected a desire for collective decision making.

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Wh¯anau made it very clear that they were there to support their wh¯anau member receiving palliative care. They understood they needed to know what was going on so that they could explain it to kaum¯atua and other wh¯anau members. This desire was led primarily by an expectation and desire to “be connected” to what was going on and yet allowed for maintaining the kaum¯atua’s dignity and mana through understanding and interpreting technical and medical information. For example, Puna discussed her wh¯anau’s approach to addressing her loved one’s end-oflife journey: “Sometimes you don’t want to appear ignorant and lose that dignity of comprehension . . . act it out [so] they understand and it’s keeping that dignity of comprehension within the patient—it’s very important to them.” Thus, including wh¯anau ensured information was understood. This keeps connection and protects dignity by avoiding misunderstandings or lack of understanding. This praxis strategy involved recalibration so that the tensions of autonomy and connection were not opposite. ¯ Emotional support in the whanau. A third strategy was to make sure to provide emotional support for each other during the end-of-life journey. Emotional support was seen as the way to balance everyone’s needs and emphasize connection, while avoiding conflict and isolation. Often forgotten in the end-of-life journeys are the emotional support needs of the wh¯anau. Rongomai (kuia) discussed the needs of a loved one who was providing care: “Need for emotional support. Wairua (spirit). Aroha (love). Being a carer takes a lot of energy.” Hine (kuia) talked about how the wh¯anau needs extend to after the person dies: It’s wrong to assume that when the eyes are closed that it’s finished . . . [they need] to sit like this and then be able to take out or share out those feelings that have been building up. It’s okay. It’s alright to feel like that.

These examples illustrate how important it is for wh¯anau to address their own emotional needs, especially given the tendency to focus on others during the end-of-life journey. Emotional support is a praxis strategy of integration to meet the needs the needs of self and other. Passing on to the next generation. The final strategy emphasized taonga tuku iho or passing on learning and customs to the next generation. Wh¯anau members in particular mentioned how important it was to learn from an end-of-life journey and share with other wh¯anau. Ideally, the end-of-life journey can enable wh¯anau to help others who are now on the same journey in order to stay connected, avoid conflict, and meet the needs of all in the wh¯anau. Wai discussed the importance of learning from the process for her own wh¯anau: “But maybe next time, we need to be a bit smarter and not just help for the care of our Dad but help for the care of ourselves. [If] we don’t care about ourselves, then we’re not gonna give the care to our Dad.” Aroha (kuia) also explained,

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“Because we’ve been through that journey we’re also helping our own wh¯anau. Last year . . . a nephew got sick. He was in palliative care; his wife looked after him, [and] we were there to support them.” Finally, Raiha (kuia) discussed her learning for her children:

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I’ve got things in place because when my husband died, everything was left on me and my two children. . . . So this has really bought things home. Planning, which I have started with my children. I told them what I wanted, where I want to go, how I want to go up there; so there’s nothing left for them.

In these cases, the strategy of passing on learning to others and self was about being able to meet the challenges and tensions of the end-of-life journey more effectively and to enhance the connection of the wh¯anau. In this manner, this praxis strategy was one of recalibration. DISCUSSION The purpose of the study was to explore the cultural practices and communication tensions and challenges perceived among M¯aori kaum¯atua and their wh¯anau during the end-oflife journey. Further, the study aims to explore the manner in which the tensions are managed. The study found three cultural practices (dying at home, karakia, and waiata) and four tensions (autonomy and connection, conflict and connection, isolation and connection, and balancing the needs of self and other). To manage these tensions, the following strategies were used: (a) coordinating conversations; (b) inclusion in decision-making conversations; (c) emotional support within the wh¯anau; and (d) passing on lessons to the next generation. The section discusses these findings within the context of the extant literature and notes the implications of the findings. Then, limitations, future directions, and conclusions are offered. Research Questions The first research question explored cultural practices of kaum¯atua and wh¯anau during the end-of-life journey. The finding that participants prefer to die at home is consistent with prior research on M¯aori perspectives on death and dying (Ngata, 2005) and also mainstream cultural perspectives (e.g., Lawrenson et al., 2010). However, one distinctive feature of M¯aori practices is that dying at home is related to connection to wh¯anau and land because of spiritual reasons. Similarly, use of karakia (prayer) is also a key component of tying the dying person to the spiritual world and also helpful to connect wh¯anau during the end-of-life journey (Ngata, 2005). Finally, waiata (song) is a unique feature of this culture. Waiata has a similar function to karakia and is part of collective identity and connection. The second research question focused on the communication tensions during the end-of-life journey. Two of these

tensions focused on connection as one pole with autonomy and conflict on the other end. The literature on RDT has found autonomy–connection as a core dialectical tension of people in relationships (Baxter, 2007). In the current study, this tension was framed in M¯aori cultural values of tino rangatiratanga (self-determination) and tino wh¯anaungatanga (connections and relationships). Further, this dialectical tension is consistent with the literature on caregiver tensions of changing roles during the end-of-life journey, as well as tensions during this journey (MacLeod, 2011; Young & Rodriguez, 2006). For kaum¯atua and wh¯anau, the move from leader in the wh¯anau and a place of respect and reverence, to one of being cared for, threatens the mana and dignity of kaum¯atua. Being able to support the mana and dignity, while balancing the need for connection, is a core challenge in the relationships. The emphasis on mana is different from the dignity and reputation noted by elders in other cultural communities (e.g., Young & Rodriguez, 2006); rather, this focus is as much about spirituality and connection as it is about individual autonomy and respect. The current findings provide additional consistency and extend the literature on RDT and caregiver challenges. For example, consistent with prior studies (e.g., DeCourtney et al., 2010; Gysels et al., 2011), kaum¯atua expressed concern with being a burden to their wh¯anau and wanted to make sure the wh¯anau’s needs were met. However, wh¯anau did not express the caregiver role in terms of stress or burden, which is counter to some studies (Gallagher-Thompson et al., 2001; MacLeod, 2011). Wh¯anau framed the caregiver roles in terms of responsibilities or simply what is done in their culture. The core value of wh¯anaungatanga frames the culture. Connection cut across all tensions and illustrates the key aspect of the totality of dialectical tensions (Baxter & Braithwaite, 2007). There are certainly tensions and yet the connection pole is emphasized repeatedly. This emphasis on connection is distinctive in this culture and reflects the strong emphasis on collectivism compared to much of the individualism emphasized in prior caregiver research (Sullivan et al., 2003). The third research question examined the strategies used to manage communication tensions and challenges. In general, many of them were framed in the context of providing support to one another in order to achieve connection and avoid some of the tensions inherent in the caregiver roles (i.e., integration and recalibration). Informational support was emphasized in the strategies of inclusion in conversations and passing on to the next generation. Instrumental support was represented in the coordinating conversations strategy to ensure that everyone could help. Emotional support was a specific strategy to develop connection that is so important to M¯aori. These strategies are consistent with prior research on support for caregivers and patients during the end-of-life journey (Keeley, 2007; MacLeod et al., 2012). The strategies for managing the tensions can best be understood from a cultural perspective. The “natural state” for many M¯aori during the end-of-life journey is unity,

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balance, and harmony (Ngata, 2005). The tensions introduced during the journey threaten these core values, and the participants in this study sought strategies that would allow focus on connection. For example, involving the patient in decision making was a strategy that allowed respect, but also collective action. In contrast with individualistic cultures, decision making involves the wh¯anau and not just the patient and partner (Sullivan et al., 2003). The collective component allows for balancing needs, showing respect, and maintaining unity/connection. These strategies help to show unique insights into how end-of-life practices are enacted and contrast with the most of the extant literature. While there are similarities in practices, these cultural practices emphasize different values and approaches as well.

they teach families about the challenges and tensions they will face and how to potentially navigate those challenges. Finally, this study emphasizes the critical importance of respecting cultural needs, values, and practices, in preparing for, and carrying out research in this sensitive area. The kaupapa M¯aori approach (Tuhiwai Smith, 1999; Mane, 2009) meant that the research was subject to M¯aori tikanga explicitly driven by kaum¯atua in their roles as advisory board members and as participants in the study. While CBPR (Wallerstein & Duran, 2006) ensured that the unique strengths of kaum¯atua and M¯aori and non-M¯aori researchers were recognized and utilized, the validity and legitimacy of kaupapa M¯aori were paramount.

Implications

Limitations, Future Directions, and Conclusions

There are four implications for the present study for research and practice. First, this study demonstrates the usefulness of RDT for the study of caregiver and patient communication. Communication tensions and challenges are critical factors for maintaining relationships during the end-of-life journey. This study builds on prior research using RDT (e.g., Considine & Miller, 2010; Dean & Oetzel, 2014). It illustrates how dialectics arise from difficult situations such as knowing that a loved one is dying. Further, this study illustrates the importance of cultural values as influencing the strategies used to manage communication tensions. In addition to the importance of connection, another cultural value expressed was taonga tuku iho or passing customs and learning to future generations. Second, the study demonstrated the importance of examining caregiver needs during the end-of-life journey. Caregivers have been studied frequently in the context of long-term and nonterminal care (e.g., Gallagher-Thompson et al., 2001). However, during end-of-life care, the research tends to focus on patients and family perspectives about the quality of palliative care (e.g., Baker et al., 2000). This study illustrates some of the unique challenges and tensions that are negotiated among kaum¯atua and their wh¯anau and among wh¯anau. Learning how to navigate these tensions is important for having a satisfying end-of-life journey, and the strategies offered by the participants illustrate creative ways to manage the tensions and maintain connection among wh¯anau. Third, this study has practical implications for families, hospice workers, and other palliative care providers. While there is a great emphasis on effective communication for effective care and meeting individuals’ needs (Savundranayagam & Orange, 2011), such emphasis is usually on core dimensions of communication competence such as being compassionate or asking for what you want. However, this study illustrates that the communication skills needed include the ability to manage communication tensions. Further, health care providers need to make sure that

This study has several limitations to be considered. First, the participants were part of a community organization that serves kaum¯atua. This organization is a strong network of health care providers and kaum¯atua and there is a relatively high level of access and awareness to health topics including palliative care. Thus, these participants might be somewhat unique in their perspectives about end-of-life processes. Second, while the end-of-life journey is a dynamic and interactive process, our data collection did not directly capture these aspects. We asked participants to reflect on their experiences and their stories, including change and dynamics. However, this is reflection only and may have missed some subtle nuances of the process. Finally, the study includes a single (yet diverse) cultural group and findings have to be interpreted within that cultural frame. While the tensions and strategies may apply to other cultural groups, such interpretations should be offered with caution. This study suggests several potential future research directions. First, future research may consider the ways in which people’s experience in the end-of-life journey changes over time. It would be interesting to see how people develop their strategies and navigate tensions. Similarly, as passing on to future generations was a key strategy, investigating the way that passing on is conducted would be an important focus. Do people effectively integrate the learnings from a prior generation or do they have to experience the process for themselves to understand and communicate effectively? Finally, future research can consider the ways that outside parties such as palliative care providers and support organization help or hinder kaum¯atua and wh¯anau from managing their tensions. In conclusion, this study explored the communication tensions, and ways to manage those tensions, among kaum¯atua and their wh¯anau during the end-of-life journey. It framed these tensions within cultural practices that emphasize connection and helping the dying person move to the spirit world. We found four communication tensions as well as four communication strategies for managing these tensions.

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The tensions were centered around the challenge of maintaining connection among autonomy and conflict, as well as avoiding isolation and balancing needs of self and other. Strategies for managing these tensions focused on following cultural values to redefine the tensions in order to reinforce connection and yet respect for dignity and individual needs. The participants in this study offered a gift by sharing their stories as we have the opportunity to learn from their experiences. Their experiences are offered from a particular cultural frame and yet potentially offer us lessons on how to manage the difficult end-of-life process. Our hope is that these experiences can help all of us communicate effectively to manage tensions during our own end-of-life journeys.

ACKNOWLEDGMENTS We would like to thank the Board of Trustees of Rauawaawa Kaum¯atua Charitable Trust for their support of this project. We also wish to acknowledge the contributions of other research team members to the overall project: Linda Tuhiwai Smith, Maui Hudson, Mere Balzer, Beau Haereroa, Keri Thompson, Rachel McClintock, Ariana Waller, Peter Kirk, Ross Lawrenson, and Rawiri Blundell.

FUNDING This article was supported by a grant from the Health Research Council and Ministry of Health, New Zealand (Reddy, PI). The views expressed are those of the authors and not necessarily the funding agencies.

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