Living into death: a case for an iterative, fortified and ...€¦ · Living into death: a case for an iterative, fortiﬁed and cross-sector approach to advance care planning Rebecca

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Anthropology & Medicine

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Living into death: a case for an iterative, fortifiedand cross-sector approach to advance careplanning

Rebecca Llewellyn, Chrystal Jaye, Richard Egan, Wayne Cunningham, JessicaYoung & Peter Radue

To cite this article: Rebecca Llewellyn, Chrystal Jaye, Richard Egan, Wayne Cunningham,Jessica Young & Peter Radue (2017) Living into death: a case for an iterative, fortified andcross-sector approach to advance care planning, Anthropology & Medicine, 24:3, 350-365, DOI:10.1080/13648470.2017.1285000

To link to this article: https://doi.org/10.1080/13648470.2017.1285000

Published online: 16 May 2017.

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Living into death: a case for an iterative, fortified andcross-sector approach to advance care planning

Rebecca Llewellyna, Chrystal Jayeb, Richard Egana, Wayne Cunninghamc,Jessica Youngb and Peter Radueb

aDepartment of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand; bDepartment ofGeneral Practice and Rural Health, University of Otago, Dunedin, New Zealand; cRoyal College of Surgeons inIreland, Medical University of Bahrain, Adilya, Bahrain

ARTICLE HISTORYReceived 2 December 2015Accepted 31 October 2016

ABSTRACTAdvance care planning (ACP) has been framed as best practice forquality palliative care, yet a growing body of literature affirms theneed for an early iterative ACP process to begin when peopleare young and healthy. A significant gap appears to exist inthe literature regarding the utility of death conversations outsidethe end-of-life context. Could ‘death conversations’ early in life bean effective tool by which doctor and patient can co-construct amore healthful way of life, and realistic relationship with death? Andwhat variables must be taken into account for these conversationsto proceed successfully? This paper provides a narrative explorationof the value of death conversations in the clinical context in NewZealand. Five exemplars are discussed, drawn from a sample of 21semi-structured interviews with young older adults (54–65 yearsold) not receiving palliative care or diagnosed with a terminalillness. Together, these narratives indicate that further communityconsultation is required to determine culturally appropriate ways toinitiate productive conversations around aging, death and dyingand how to build patient/practitioner/family relationships whichallow these conversations to happen safely. There is a need toacknowledge the important factor of culture related to age,generation, sex, faith and ethnicity when engaging in conversationsabout aging, death and dying. By doing so, health professionals willbe best equipped to assist their patients to live well into death.

KEYWORDSAdvance care planning;narratives; deathconversations; culture;New Zealand

Introduction

The circumstances of one’s death has become an increasingly common topic for the medi-cal and lay community following the proliferation of physician-assisted dying, alongsidepopularised methods to predict the time of one’s ‘natural’ demise (Aviv 2015; Ganna andIngelsson 2015; Macfie 2015; Rae, Johnson, and Malpas 2015).

Advance care planning (ACP) has been touted as a holistic way to address the needs ofboth the patient and their family and enable a decision-making process that is in accor-dance with the preferences of the dying (Briggs and Colvin 2002; Davison and Torgunrud

CONTACT Chrystal Jaye [email protected]

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ANTHROPOLOGY & MEDICINE, 2017VOL. 24, NO. 3, 350–365https://doi.org/10.1080/13648470.2017.1285000

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2007; Jordens et al. 2005; Perkins 2000). By focusing on eliciting and reflecting on thewishes of the patient, ACP transforms the practice of end-of-life (EoL) preparations from‘a document-driven, decision-focused event to one that emphasizes a relational, patient-centred process’ (Briggs 2004, 341).

Primarily, ACP is framed as ‘an evidence-based best practice of quality palliative care’(Ahluwalia et al. 2014, 1). Yet a growing body of research affirms the need for an earlyiterative ACP process to begin when people are young and healthy, thus allowing the pref-erences of individuals and their extended family to be properly accessed, documented, andupdated according to changes in the age, stage and health of the person(s) involved (Con-roy et al. 2009; Kavalieratos et al. 2015; McMahan et al. 2013; National Advance CarePlanning Cooperative 2011; Pfeifer et al. 1994; Putman-Casdorph et al. 2009). The accept-ability of ACP to young adults is supported by a small but growing literature suggestingthat the benefits of such early ACP engagement pertain not only to the young adultsthemselves, but their wider community for whom they may act as surrogate healthcaredecision-makers (Kavalieratos et al. 2015; McAliley et al. 2000).

A significant gap appears to exist in the literature, however, regarding the utility ofACP outside the EoL context. This is not surprising in a culture where the taboo of deathpersists (Aries 1974; Aries and Weaver 1981; Seymour, French, and Richardson 2010)and the medical profession is increasingly intolerant of objections to its heroic quest forimmortality (Kaufman 2005; Gawande 2015).

This study arose from the perceived need within the general practice consultation forearly and frank conversations about the one certainty we all share in life: death. WhileACP tends to be aligned with planning for the progression of life threatening illness andconsequent palliative care, death conversations frequently occur outside the EoL contextand have an orientation of exploration and openness. This paper answers the question:could ‘death conversations’ early in life be an effective tool by which doctor and patientcan co-construct a more healthful way of life, and realistic relationship with death?

Methods

Study design, participants and data collection

Semi-structured interviews were held with 21 young older adults (54–65) not receivingpalliative care nor expecting to die in the next six months. Fifteen were women, six men;14 identified ethnically as New Zealand European; and one each of British, Canadian,Malaysian Chinese, Norwegian, Samoan, South African and Tokelauan. Two wererecruited through general practice, seven through the local newspaper, nine through theuniversity newsletter, and three through referral by a colleague or friend. Participant edu-cation ranged from ranged from high school to vocational trade to university level. Inter-views were held in participants’ choice of venue.

A group interview was conducted at the request of the two Pacific participants whowere close friends. Whilst this differed from the other interviews, it was deemed culturallyappropriate for discussion of the sensitive topic of death. To further assist this process, aformal introduction was made by the Associate Dean (Pacific) of the Medical School whois well known and respected in the local Pacific community.

ANTHROPOLOGY & MEDICINE 351

All interviews were conducted by (author), ensuring consistency of approach across thesample. An interview schedule was developed following three practice interviews. Inter-views were digitally recorded, transcribed (www.rev.com) and checked back against theoriginal records to ensure accuracy (author). Transcripts were also member-checked, withno participant offering more than grammatical changes.

Research context

In New Zealand (NZ), physician assisted suicide and human euthanasia are illegal. At thetime of interviews, a highly publicised court case (Seales vs Attorney General 2015)requesting permission for doctor-assisted euthanasia was taking place. The widespreadpublic interest in this case (Lundy 2015; Lundy 2015) was evidenced by nearly all partici-pants raising the topic during their interview. In this way, the topic of ACP and euthana-sia were organically raised by participants and subsequently used as a prompt by theinterviewer to facilitate discussion of acceptability and usefulness of conversations aboutdeath in the context of healthcare.

Data analysis

The in-depth analytic approach of immersion/crystallisation (Borkan 1999) was used dueto its concordant embrace of ‘an openness to uncertainty, reflection and experience’(Crabtree and Miller 1999). Data analysis was conducted on an ongoing basis as eachtranscript was completed. Weekly meetings were held (authors) to engage in the necessary‘cycles of concentrated textual review of data’ (Reis et al. 2007) with a focus on emergentthemes and salient topics. This paper draws on the ‘whole story’ told within interviewsand the nuances of these stories.

Findings

This section provides a narrative exploration of the value of death conversations in theclinical context by way of four core emergent themes: ‘death as taboo and remote’, ‘identi-fying windows of opportunity’, ‘prioritising self-care’ and ‘the setting of death conversa-tions’. These themes are illuminated through the accounts of five participants whoexemplified the broader cohort and/or offered expert perspectives based on professionalroles and experiences.

Death as taboo and remote: ‘I can’t see the horizon.’

Olive is a 58 year old in good health, with children and grandchildren living overseaswhom she plans to join in retirement. The question of time and cause of death posed diffi-culty for Olive, who felt uncertain regarding the point when serious consideration of deathshould begin: ‘I can’t see the horizon, you know what I mean? I still feel I’m that young thatthe horizon of when I die, is still so far away that I don’t even think about it…’. The pros-pect of retirement, in contrast, was much more real: retirement embodied a ‘whole differ-ent time of life’ filled with leisure and now-distant loved ones, an idea that was visiblyenergising.

352 R. LLEWELLYN ET AL.

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Olive’s experience reflects the common theme of ‘not yet’ identified across much ACPresearch, indicative of both a societal taboo regarding the discussion or consideration ofdeath alongside the perceived irrelevance of ACP to one’s life stage (Simon et al. 2015).The latter is arguably more amenable to influence by health professionals during consulta-tions, through repeated prompting and discussion. It also highlights the sense of ‘durabil-ity’ many possess despite poor states of health or recent admissions hospital; Simon et al.(2015) found frequent mention of ‘not yet’ by their participants, who were a sample ofpatients at high risk of dying within the next 6 months.

Despite the apparent remoteness of death, Olive recognised death as the inevitablecounterpart to life. She pragmatically described the potential of making her transitionoverseas post-retirement alone, her husband being over 20 years her senior. The likeli-hood of her husband predeceasing her was taken as a logical assumption, and may havecontributed to an attenuated perception of death’s immediacy to the self. Furthermore,the recent death of her brother had inspired screening for a similar disease and reflectionupon how horrible it is for people to die before their time, conveying Olive’s subscriptionto the model of a ‘normal’ death in old age due to ‘natural’ causes (Kaufman 2005).

Olive expressed appreciation for the opportunity to consider death in the context of herpersonal situation. Such value can be seen in regard to Gidden’s (1991) work on the ‘proj-ect of the self’ and the notion of symbolic immortality (Hallam and Hockey 1999).

It’s like reading a book. You always want to see what the next chapter’s going to be about.You don’t want to get to the end. I don’t want things to be happening with me not part ofthem.

As a result of the interview process, discussing the ways in which to prepare for death,Olive came to the enthusiastic decision to prepare a ‘project of me’ to enable her grandchil-dren and generations beyond to know who she was. The value of this resolution wasemphasised by Olive’s reflection that she is quickly becoming the ‘last link in the chain’ asthe generations before her progressively die.

That’s what I don’t like about the idea of this aunt of mine, the ancient 92 year old, dying,because then that’s it. That’s the next level up that’s gone, and then you’re all moving up andthen you’re the next level. But I also like that idea that you can… instead of just being aforgotten link in a chain, you can actually make that link real.

An interesting paradox became apparent throughout Olive’s interview: a parallel com-fort and aversion to the topic of death, according to its context of presentation. Familiarwith the family burial plot since early childhood and having family members whoseemployment is in close contact with death, Olive expressed death was ‘normal’ in her fam-ily. This ‘normality’, however, appeared somewhat challenged when death was framedfrom the perspective of threatening the integrity of the self (Cassel 1982; Jaye 1998).

At what point do you think, “Oh, hang on a minute. I can’t really think about what I’ll bedoing in 10 years, because I probably won’t be alive”, and how awful that would be to think,“Oh, yeah. I probably can kind of number the years that I’ve got.”

Despite this expressed aversion to the application of death to the self, the exercise of aguided exploration of one’s mortality was welcomed.


It’s actually really interesting just to say out loud stuff that you think but never voice. Becausewhy would you? You don’t sit down with friends and, “Let’s have a chat about death.” Youjust don’t do it, do you? No.

This paradox is evident within the thanatology literature itself, where evidence existsfor both the enduring and diminishing cultural death taboo (Gallagher 2011; Kellehear1984, Lee 2008; Tucker 2009). Regardless, several studies report that people of all ages areinterested, and actively searching for information about, the existential and practicalimplications of death (Fried et al. 2009; Kavalieratos et al. 2015; McLennan et al. 2015;Scott et al. 2013).

A key question is the role of the health professional and healthcare systems to instigateand support death conversations. The patient-centred model of healthcare emphasises theimportance of understanding patients’ broad health values and circumstantial situation(McWhinney and Freeman 2009; Wilson and Cunningham 2013). As the interview withOlive demonstrated, death conversations may provide an accessible pathway to open updiscussion about the psycho-socio-spiritual values of the patient and their extended fam-ily. The therapeutic value of sharing this information has been acknowledged as a path ofhealing that is often more powerful than, or directly effects, the resolution of the immedi-ate presenting condition (Frank 2013; Wilson and Cunningham 2013).

Despite acculturation to death in her family, and open reticence to its application to theself, Olive was positive about the development of greater forums for death conversationsin healthcare settings:

I think [a resource on death and dying] would be really good to have something that wasavailable in doctor surgeries, and people maybe who would have never given that a thoughtmight provoke them into thinking, “Yeah, maybe I should do this.”

Given patients’ low engagement with ACP (Milligan, Winch, and Hamilton 2010;Pollack, Morhaim, and Williams 2010), McLennan and colleagues (2015) suggest that it isadvantageous to identify opportunities in which to discuss death, dying and aging withpatients. Benefits can be expected for three core groups: the healthcare professional as theease of death conversations increases with familiarity; the individual as anxieties, miscon-ceptions and wishes are expressed and explored; and the extended family who come tounderstand the health values of their loved ones, and thus are better equipped to guideEoL decision-making.

Identifying windows of opportunity: ‘An interesting time [to] pause and consider.’

Henry, a 58-year-old minister, participated in the research out of a desire for a life-inventory.

Given that I’m almost 60, that is three-quarters of my life. Whatever happens, I’m well overhalf-way. It is an interesting opportunity to pause and to consider ultimate issues around theend of my life, and how I’m going to live the remaining years.

The perpetual and inevitable progression towards death was acknowledged, and theunique opportunity provided by the interview to reflect upon its relationship to life val-ued. Henry’s narrative provides insight into the significance of death conversations wellbefore EoL, from the seasoned perspective of one who has been intimately involved in the


processes of death and dying over thirty years of Christian ministry, including a decade ofservice in a secular tertiary organisation.

The lack of widespread public engagement with ACP in New Zealand can be inferredthrough Henry’s lack of familiarity with the terms (Muir and Manson 2013). Despite notknowing of their content, Henry’s desire for a life inventory in the lead-up to turning 60affirms the value of the fortified ACP approach where life values are explored throughdeath conversations in the health care context for the purpose of elucidating opportunitiesfor (health behaviour) change in the immediate future (Briggs 2004).

Of note was Henry’s exploration of various aspects of symbolic death, and converselysymbolic immortality, throughout the interview. The preparation of a will was perceivedas a significant acknowledgement of one’s own mortality, and the need to engage in neces-sary preparations: ‘That I guess is an acknowledgement of the reality that the day will comewhen we’re going to die. That’s what wills are made for, isn’t it?’. The symbolism of retire-ment was not so straightforward. Retirement was seen as a step towards death. The speedwith which one progressed towards death during retirement, however – and the quality ofthe remaining lifespan – was seen as a rather agonising trade-off between the mental andphysical costs and financial benefits of employment.

If I was to intentionally move into something less stressful so that I could live longer, is thatwhat I should do? Or should I manage my health, mental, spiritual and physical through to65 or 67, so that my wife and I can be more comfortable in retirement, to be able to buy ice-creams for our granddaughters more often? Yes, some big decisions up ahead.

The interview process provided no guidance regarding the path to resolve such conflict;however, through voicing concerns to an impartial party, clarity seemed to be obtained,alongside a level of wellbeing.

The value of the exercise was further affirmed through Henry’s desire to have the inter-view transcript. The significance of this can be seen on two levels. Foremost, the transcriptcan be seen as a symbol of immortality: a detailed documentation of genealogy, recentfamily history and EoL preferences, the transcript provided an opportunity for Henry’s‘self’ to live on in the hearts and minds of his extended family.

That’s where this exercise we’re engaged in today is so fascinating. That I could drop deadtomorrow and then you personally would find this exercise very significant. So would myfamily because then they’d be wanting to talk to you about what I said today, which you mayor may not be able to share. I don’t plan to drop dead tomorrow, but I’m just saying that wedon’t know. There’s an uncertainty.

Second, it also provided a concrete artefact of an exercise in symbolic death, a point ofreference for ongoing reflection on the goals and priorities of life – and what actions arenecessary to achieve these before one’s allotted time is up.

The immediacy of the issue of death for Henry could be attributed to the centrality ofdeath to his employment. Indeed, Henry acknowledged the significant impact that hisprofessional dealings with death and associated existential concerns had on his spiritualityand life philosophy. Nonetheless, the desire for a forum in which to discuss the complexi-ties of one’s own mortality, specifically the agency individuals possess to postpone oraccelerate death, was strong. Furthermore, despite working in a caring profession andbeing cognizant of the importance of preparing for death, Henry expressed that he hadnot yet engaged in such processes as much as he would have liked.


The important opportunity provided by milestone ages, impending retirement and sig-nificant family incidents, such as reaching the age when a parent had experienced a signif-icant medical event, is affirmed by Henry’s narrative. Creating a suitable healthcare spaceto explore these issues and provide best practice guidance, or simply hospitality, may offera simple pathway to an enhanced patient-clinician relationship and overall wellbeing(Briggs 2004; Chibnall et al. 2002; Wilson and Cunningham 2013).

Prioritising self-care: ‘We need to put the mask on first before we put on themask on others’

Mena (59) was born in Tokelau, whilst Leonie (54) is an NZ born Samoan. Both expressedbeing in the position of navigating the ‘old ways’ of their parents and Island heritage,and the ‘new ways’ of their present NZ context that was the only culture their childrenhad known. This narrative highlights the need for cultural competency when engaging indeath conversations. It also highlights the potential power death conversations possess tofacilitate the successful navigation of cross-cultural as well as within-culture differences inperspective and practices related to death.

Death was not something either woman had given much thought: ‘Honestly there’sthings you don’t think about. You don’t sit down and think about it’ (Mena). On theone hand, death simply felt too far away; further attesting the prevalent perspective of‘not yet’ (Simon et al. 2015). On the other hand, Mena and Leonie explained that averbal ‘silence’ around death was the result of the high-salience of death within Islandlife: the dead were traditionally buried on the family plot; the body was bathed, anddressed and always accompanied by the family in the days leading up to the funeral;children were encouraged to spend time with the body and so on. Death was presentwithin Island life, lessening the need for outright death conversations. Similarly, Maori(indigenous New Zealanders) world view has been described as embracing death as an‘ever present part of life’ where exposure to death is seen as an important learningprocess for children (Nikora, Masters�Awatere, and Awekotuku 2012; Stallworthyand Glavish 2013).

This was seen to sit in stark contrast to the context of the wider NZ population. Leoniewas a Christian minister, and marvelled at the pains taken by many Pakeha (NZ Euro-pean) took to distance themselves from the reality of death: no open casket, no childrenallowed to funerals as it would be too upsetting, storing the body in the morgue instead ofat home, and so on. The Western tendency to ‘hide’ death has been noted (Gallagher2011; Lee 2008). As a result of living in this new culture of apparent death denial, bothwomen explained they had taken considered steps to engage their children with the topicof death – something that their parents had not done, as there had been no need.

Particular emphasis was placed on the situation of aged care. A particular concern wasbecoming a ‘burden’ to their children. More important than care for the self at the time ofold age or death, was care for the family:

How to help my family cope. It’s how to help them to be able to feel that they’re empowered.Like [Mena] also said, “Don’t feel bad if you have to put me into a home because you can’tlook after me. Don’t feel bad. That that is a reality and I accept that. That’s okay.” Because,culturally, it’s not okay. (Leonie).


The delicacy of navigating conflicting cultural norms was significant. Mena, as an aged-care worker herself, acknowledged that it was well-known that few Pacific peoples enterinto residential care (Kiata and Kerse 2004). Rather, a transition back to the Islands forretirement and death, or family-based care was assumed. Leonie affirmed these assump-tions, and the level of safety they engendered: ‘we don’t need to worry about long-termcare or long-term health… our families will look after us’.

Mena and Leonie were clear that the model of family-based care was not what theywished upon their children – nor was a transition back to the Islands viewed as ideal. It ispossible that the perspective of not wanting to be a ‘burden’ is reflective of a generationraised in NZ, aware of the changing attitudes towards and practice of family-based agedcare due to the interaction of Pacific and Pakeha cultural norms.

Overall, the subject of old age and death was wrought with emotion, and one whichtheir children were emotionally unprepared or too young to engage with. Mena started tocry as she described her children’s tears upon raising the subject of death. Leonie steadilybecame more tearful as she described how the years of retirement before death loomedsomewhat ominously from her dual position of family bread-winner and recent unem-ployment. Yet this emotional salience of mortality indicates – as both women verballyacknowledged – the value and willingness to engage in death conversations long beforethe expected ‘due date.’

Mena and Leonie perceived the exploration of their own mortality, and the factors thatmay stave-off or accelerate its occasion, as a useful contemplation for the identificationand re-evaluation of life priorities and practices (Goldenberg and Arndt 2008).

Leonie: Motivation. Where is our motivation?

Mena: That’s right. Well, I think that’s a big word for me.

Leonie: It starts with us. (Laughs)…Maybe that’s what we can take away from this. Motivateourselves to spend a bit of the day just for us.

Ambivalent as to its Pacific-specific or mother-specific nature, both women describedthe tendency to prioritise others before self. Reflecting on their own mortality, however,had highlighted the need to re-evaluate this practice for the benefit of all involved.

That we do need to realize that we need to put the mask on first before we put on the maskon [others]… That might help my children. That might help my daughter to learn that justbecause mum, this is what I do, doesn’t mean you have to do that when you have your family.(Leonie).

The need to understand the broad social determinants that impact upon health inten-tions and health-seeking behaviours is widely accepted in modern medical models ofhealth. The powerful influence exerted by family dynamics is particularly strong withincollectivist cultures that emphasise the welfare of the group over the individuals who com-prise it (Sligo and Jameson 2000; McLaughlin and Braun 1998; Frey et al. 2014).

Mena and Leonie affirmed the ability of death conversations to elucidate the complexarray of factors that may inhibit or facilitate wellbeing – in the immediate context, old ageor EoL. Furthermore, through influencing one component of the family unit, the benefitswere perceived to reverberate throughout the whole. This accords with other Pacific litera-ture (Mclaughlin and Braun 1998; Ministry of Health 2010) that affirms the need to


understand broader family networks and the cultural context if health promotion is to beeffective.

It is acknowledged that ACP is more difficult when decision-making involves theextended family, as opposed to the individual (Frey et al. 2014; Wareham, McCallin, andDiesfeld 2005). A fortified version of ACP, where health values can be explored and docu-mented over time, may help alleviate the anxiety of cross-cultural or intergenerationaltensions (Briggs 2004). By recording their health care values with a figure of authority,their children’s discomfort about going against the ethos of Pacific cultural norms may beattenuated. This could be further facilitated through the incorporation of the extendedfamily in the clinical setting where health values, practices and wishes of each member areopenly discussed. The value of family-based consultations is increasingly acknowledged inteaching models utilised by medical schools in the Antipodes (Lacey et al. 2011; Pitamaet al. 2007) and is considered best practice with regard to providing care for Maori in NZ(Cram 2014).

The setting of death conversations: ‘Their role is to look after them today.’

David, 64, is an experienced retirement specialist at a large organisation. His narrativeprovides particular insight regarding the utility of early and ongoing conversations aboutdeath and old age, and the potential for other sectors to prompt the population to planfor, and provide them with the tools to bring about, a happy transition into old age anddeath.

Having held many retirement seminars for staff of a variety of ages, David emphasizedhis shock at the infrequency with which people engaged in retirement and EoL prepara-tions. David’s experience is corroborated by Pollack, Morhaim and Williams (2010) whoshow that only half of those who express the desire for control over EoL circumstancesengage in formal preparations. For David, the cultural silence on death not only posedobstacles to people’s desire for a ‘good’ death; more immediately, the period of retirementcould be fraught with financial insecurity and angst if sufficient planning had not takenplace. The global context of increasing lifespan alongside medical advances that furtherprolong life signals a need for protracted considerations of the potentially lengthy post-retirement period.

Whilst mostly focusing on financial considerations, David highlighted the importanceof existential concerns about meaning and purpose. Again signalling the power and utilityof a fortified ACP (Briggs 2004), David described the transformative impact of his retire-ment workshops and one-on-one counselling that focused on the identification of healthand wellbeing values and aspirations. The (un)successful transition from employment toretirement and, ultimately, death appeared to rely on a complex interplay of variousfactors.

[Retirement’s] not just taking an extra 2 hours to read the paper and having morning andafternoon tea and then a lunch and then a tea and then spend all your time cooking those.That’s what some people do.

I often encourage husbands and wives or partners to come together and talk to me. To warnthem you’re going to spend a whole lifetime together. I always say to the partner that’s athome, “Are you prepared to understand that your husband now will be at home?” And they’ll


go, “Actually, I’m not.” I remember seeing two or three people, in earlier days, that wouldsay, “What do you mean you’re not? I thought you’d love to have me home.” “Well no, dear,because I have cards on Monday, I do such and such on Tuesday, Wednesday I go so and so,Thursday I do that, Friday I do that, and Sundays I do that. Because you’re always busy atwork. Why should I change my lifestyle just to suit you?”

Two issues became apparent from David’s personal and professional insights: the needfor a dedicated space to discuss the facilitators and barriers to a happy ‘life into death’,and uncertainty as to how to create such spaces. The need for meaning and purpose forsuccessful aging, retirement and death was relayed through various stories from David’sprofessional and personal life.

Many of them have been through various wars and [the choir] is the thing that kept themgoing and none of them wanted to stop because they thought the moment they stopped itwould pop their clogs. And that’s sort of what happened to quite a few of our members…they just felt that it was time for them to hang up their books and stop singing and they weredead within a relatively short period of time, less than a year.

Social engagement and retirement preparation may be considered outside the purviewof most healthcare professionals. However, from the perspective of the ‘health profes-sional as healer,’ these domains may be offer pathways to attenuating the presentation of,or facilitating the recovering from, biomedical complaints. An increasingly utilised inter-national model of stepped ACP, tailored to the age and state of health, may hold the keyfor effective death conversations in the health sphere that utilises the often intimate andpowerful relationship between client and clinician (Briggs 2013; Gundersen HealthSystem 2015). This model would attenuate the need for one-off long conversations as theissues are broached iteratively in a non-confrontational manner, whilst allowing for thescheduling of more in-depth sessions as required.

David’s insights also draw attention to the need for alternative ACP forums. Morhaimand Pollack (2013) call for religious, political and cultural leaders to promote ACPengagement, and for conversations to be held in alternative settings such as workplacesand faith-based institutions. Small-scale projects of this type are taking place internation-ally (Dying Matters Coalition 2015). Fostering a relationship between health professionalsand workplaces in the context of retirement planning could provide a particularly power-ful way to improve ACP participation, normalise death conversations, and increaseengagement with health-promoting interventions.

Conclusions

The more recent emphasis on ACP as the co-creation of a care plan ‘specific to patients’values, relationships, culture and medical condition’ (Davidson, Banister, and de Vries2013, 27) can be seen as the original intent of the advanced clinical care directives intro-duced in the 1980s (Hickman et al. 2005). This study illustrates the utility of death conver-sations as an effective tool to engage patients in a meaningful exploration of their psycho-socio-spiritual and cultural context. These conversations can be a component of ACPwithin the context of life threatening illness but are also valuable outside this context.Within the context of ACP, a better understanding of health care expectations, anxieties,cross-cultural difficulties, effective pathways – and likely barriers – to behaviour change,


and EoL wishes can thus be ascertained. Outside the context of immediate life threateningillness, raising the subject of mortality and EoL care, for people of all ages, may provideinsights that enhance quality of life and peace of mind against the more generalised inevi-tability of mortality.

The value of narratives and stories in the ACP process, for both patients and healthcareprofessionals, is recognised by previous researchers (Chan and Pang 2010; Davidson,Banister, and de Vries 2013). Chan and Pang attribute the success of their ‘Let Me Talk’programme to the centrality of the storytelling approach. By focusing on patients stories,there is a shift in focus from defining the healthcare experience by the biomedical presen-tation, to the psycho-socio-spiritual context of the individual (Sulmasy 2002). This narra-tive approach also has benefits in terms of immediate and EoL health care objectives: byexploring personal values and beliefs, participants are enabled to ‘ascertain their life goalsand clarify their preferences’ (Chan and Pang 2010, 3080). As a result, the motivation forhealth-promoting behaviour change may increase as the determination to achieve lifegoals is clarified and strengthened. Notably, our research question of ‘What do you thinkyou will die of and when?’ appeared to naturally elicit life stories, illness narratives andlife perspectives from participants.

Other research acknowledges the importance of trust and rapport to the ACP process(Munday, Dale, and Murray 2007; Reed 2011). Accordingly, the primary health contextcan be considered an ideal setting for death conversations and ACP discussion, as rela-tionships are ideally grounded in trust that has been developed over time (Davidson, Ban-ister, and de Vries 2013), although this is dependent upon the structure of primary care.While continuity is a feature of general practice in New Zealand, it may not be possibleunder the National Health Service in the United Kingdom.

This study is limited due to the absence of Maori or Asian voice. In the NZ context ofgrowing Maori, Pacific and Asian populations, it is necessary to discern culture-specificrequirements for successful ACP engagement. Whilst Maori patients were approachedthrough general practice, none accepted the offer and one man expressed indignation andanger in response to the request. This lack of interest and negative response is not surpris-ing; death may be avoided in conversation in both Maori and Polynesian cultures as it isthought to hasten its occasion. Nikora, Masters-Awatere, and Awekotuku (2012) describethe Maori concept of ‘karanga aitua’ where the discussion of death has the power to call itforward. Reactions of anger, sadness or avoidance by Maori and Pacific people regardingthe topic of aging and death may also result from lived experience of short-life expectan-cies and resultant perspective that they ‘are running a different, shorter race’ (Cram 2014,10).

Further, EoL conversations may be seen as ‘concomitant to giving up on life’ (Frey et al.2014 294; Frey et al. 2013; McLaughlin and Braun 1998), or being a breach of filial pietywhere children protect their elders from adverse circumstances (Kim and Foreman 2011;Ko, Cho, and Bonilla 2012). It is known that Chinese people often avoid death conversa-tions as it is considered inauspicious and contradictory to the emphasis placed on filialpiety (Chan and Mak 2000; Tse, Chong, and Fok 2003). Such a perspective may explainthe strong emotional reaction of Mena’s children (crying and a request to drop the sub-ject) to her expression of EoL wishes. Nonetheless, Mena and Leonie affirmed the value ofsuch conversations, for their own – and their children’s – quality of life and peace ofmind. Frey et al. (2014) argue that an early and community-based ACP approach will be


best suited to the collectivist needs of NZ’s growing Maori, Pacific and Asian populations.It will help families be less anxious about meeting death-related cultural obligations asthey are openly discussed and more fully understood; further, opportunities in which thehealth system may facilitate meeting these obligations, as opposed to posing barriers tothem, may be illuminated.

The two Pacific participants were recruited through general practice and requested ashared interview. As one woman was a minister, her willingness to discuss death may begreater than the general Pacific population. The desire for a group interview is arguablyindicative of a preference for collective, rather than individualistic, healthcare processes(Frey et al. 2014). We see value in exploring the possibility of ACP ‘navigators’ to provideemotional support, use humour to diffuse tension and to potentially divert conversationsif they stray into culturally inappropriate areas (Stallworthy and Glavish 2013). The use ofsuch ‘navigators’ in cancer care has been used successfully internationally and for Maoriin NZ (Walker et al. 2008; Weber et al. 2012; Slater et al. 2013). Holding inter-genera-tional consultations may also provide a more appropriate context where the sharing ofsensitive information with a stranger is balanced by sharing it with the following genera-tions to help them understand. Awareness of the need for such a family-based approachis growing in NZ medical schools (Cram 2014; Lacey et al. 2011; Pitama et al. 2007).

Overall, further community consultation is required to determine culturally appropri-ate ways to initiate productive conversations around aging, death and dying and how tobuild the patient/practitioner/family relationships which allow these conversations to hap-pen safely (Stallworthy and Glavish 2013). We have focused primarily on ethnicity-basedculture in drawing our conclusions, in light of the particular need to rectify inequities inmortality/morbidities experienced by Maori and Pacific peoples in NZ. However, as thenarratives of our participants show, there is a need to acknowledge the important factorof culture related to age, generation, sex, faith and ethnicity when engaging in conversa-tions about aging, death and dying. By doing so, health professionals will be best equippedto assist their patients to live well into death.

Ethical approval

Ethical approval for this study was granted by the University of Otago Human Ethics Committee(Health), Reference H14/144.

Acknowledgments

This project was funded by a University of Otago Research Grant. We offer our gratitude to ourcolleagues who used their networks to assist with recruitment for this project and we are grateful toour participants for their time and support of this project. Tragically, a member of the projectteam, Dr Cyril Sch€afer, died suddenly during the study. Cyril was an anthropologist at the Univer-sity of Otago specialising in death studies who played a central role in the project. We were fortu-nate to benefit from his insights into the preliminary analysis of interview data. This publication isdedicated to his memory.

Disclosure statement

No potential conflict of interest was reported by the authors.


Funding

This work was supported by the University of Otago Research Grant.

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AbstractIntroductionMethodsStudy design, participants and data collectionResearch contextData analysis

FindingsDeath as taboo and remote: Ì can't see the horizon.Ídentifying windows of opportunity: Àn interesting time [to] pause and consider.´Prioritising self-care: `We need to put the mask on first before we put on the mask on others´The setting of death conversations: `Their role is to look after them today.´

ConclusionsEthical approvalAcknowledgmentsDisclosure statementFundingReferences