Ritual, Social Practice & Good Death in Residential Aged Care

1. Ritual, Social Practice, & Good Death in Residential Aged Care Deborah Balmer School of Nursing University of Auckland Research Team: Michal Boyd (lead), Deborah Balmer, Susan Foster, and Rosemary Frey Part of Te Arai Research Group – Palliative Care and End of Life Research

2. ELDER Project Aims: Aim 1: determine quality of death from the perspective of residential aged care (RAC) staff. Aim 2: determine the quality of death from families’ perspective. Aim 3: develop palliative care guides for neurodegenerative conditions to translate evidence into practice.

3. Methods: Deaths in 61 randomly selected and stratified residential aged care facilities (size, for profit or not for profit) (2016-2017) monitored for 3 months in each Follow up each death with an objective staff questionnaire: • Cause of death, symptoms before death • Standardised quality of death questionnaires • Manager, GP/NP, RN, HCA Semi-structured interviews in 49 RAC facilities with a purposive sample of staff (n=113)and GPs (n=17), as well as separate family (n=33), Content and thematic analysis Phase 2: • July 2016 to Mar 2017: Recruit Family Participants • July 2016 to Sep 2017: Family interviews and surveys • Jul 2017 to Mar 2018: ELDER final analysis and report writing Phase 3: Two-Way Public Engagment KPI: • Oct 2017 to Jun 2018: Development of care guides for publication and distribution in collaboration with residential aged care providers

4. Qualitative Interview - Demographics

5. Qualitative Interview - Demographics RAC staff Religion (n=104)

6. Religious and Cultural Beliefs

7. Ritual & Social Practice “Ritual is a form by means of which culture presents itself to itself” and is “inherently connective” (Myerhoff,1984, p.320) Social practice • emphasizes the inherently socially negotiated character of the thought and action of persons-in-activity.” Lave and Wenger (1991, p. 50) • the result of the reproduction of a structure and in that reproduction, preserving social practices for that time (Cordella, 2004 p. 16). Previous research into rituals in residential aged care has found them to be highly variable in type and occurrence (Ewen et al, 2016), but where they did happen, were highly valued by staff, residents and families (Maitland et al 2012).

8. Good death • A good death is informed by an ideology that “constructs a socially approved form of dying and death with powerfully prescribed and normalized behaviours and choices” (Hart et al 1998). • Foreseen, planned for, and in line with personal preferences; dying in one’s own home is prioritised, surrounded by loved ones and free from pain, anxiety and distress;

9. Good death: Accompaniment A striking practice was the expectation RAC staff placed upon themselves that actively dying residents should not be alone at the time of death. • I mean, it’s the end of their lives, . . . but we don’t have that capacity of giving them one on one care . . . Which is quite sad, you know? That would be good if there was someone that can stay with them bedside, and, you know, just be there, you know, with them. Who would like to die alone? (RN Manager #8) • So a few of the families ask, want to know what they were like when they passed away, who was with them, or who found them. . . . They want to know, were they alone, whether they were in pain. (RN # 23) • And that they feel like they’re not alone, you know, that’s really, like, I can’t bear the thought of them lying there dying alone. You know, with no one. (HCA#27)

10. Good death: Accompanied However, dying alone still occurred. We were really upset. I was really upset (. . . ) So I got the call on Saturday morning and I’m like um yeah well . . . I had expected that they would have called us. Also like the girl that called, the nurse, she said I think that she’d checked her out about seven in the morning or something around that time and thought she wasn’t going to last too long. Then at about quarter past nine I think it was she went back in and Mum had actually gone. I was left thinking well at seven in the morning would you not have called us? (Family 5)

11. Good death: Dying Alone • Critically, dying alone is seen as problematic and a moral failing on the part of society as a whole (Seale, 1995; Clark, 2002; Gott, et al. 2008). A peaceful death is widely pursued (Rich, 2014).

12. Good death: Accompaniment ritual Make sure the dead are not “shushed out like, you know the cleaners’ entrance or the tradesman’s entrance” but were “good enough to go out the front door.” (Manager #20) Yeah, and it [guard of honour] was also providing Mum with dignity but, you know, I think for them, for the people that they went there just because of the event, but also coz it was Mum and they had a relationship with Mum themselves. And so it wasn’t just for Mum’s dignity it was also for their benefit. (Family#3)

13. Contested Practices That has been a bit controversial with some of our families. Some of our families don’t like it, they say we don’t want to see it, we don’t feel everyone should be exposed to death. We know that person’s gone, why are you doing this. (Facility Manager#2) Yeah, it’s slightly awkward that, death, because we’re not really meant to tell them [residents] that others have died until the family either tells them or it’s in the paper. And I mean that’s really hard sometimes, cos there’s often a delay.(RN #16) And we’re always very aware of other people around because you know, you don’t want death. . . . So we will always make sure that the funeral directors arrive out of busy hours. So not around lunchtime when there’s lots of people in the dining area, and you go past. You’ve got to think about other people, so we always look at the timing. And then we will always, I’ll always walk with the body or if I’m not here someone will. And just, we might put up a screen if there’s an activity going on, we might just put a screen up discreetly, for both parties really. (Facility Manager#47)

14. Post death- staff grief practices Most of our residents, when they’re gone, like mean when they die, we always in tears, you know, even for, you know, we’re not related . . . (HCA) We used to sit down and talk about the person years back, but we don’t do anything like that now. It’s almost like they’re just a patient; they’re not your family - why are you worried about it - why does it upset you? If you’ve nursed someone, or had them and their families - the nursing home is different to a hospital; you do become part of their lives - they become part of yours. (RN)

15. Informing residents • Some residents were ‘told’ of a death through social practice. We have a very good photo of them framed and we place that in the dining area with an angel which will probably inform . . . the other residents that lady’s gone (RN). • For some, news of a resident’s death was relayed to staff only, for example by displaying information in an area only staff had access to. We take their photo . . . and we always put that up in the nurses’ station . . . they can look at that [staff] and see who’s died and maybe a vase of flowers (RN). • Life-transitioning collective rituals for residents were scarce, privileging the privacy of death over any public acknowledgment for post-death grief & remembrance (See also Maitland et al. 2012 & Komaromy, 2000).

16. Spiritual/Religious • . . . Open the windows, let the spirits out – . . . We do it here, we just get [manager] to go and bless the room. (RN)

17. Good death: meets expectations of ethical quality Examples of Ethical Risks • RACs risk focussing on death at risk of living residents (O’Connor & Pearson, 2004) • No rituals with resident’s departure from the RAC community – risk for remaining living – ”others may feel their own death will go unnoticed, their life unremarked” (Bern-Klug, 2011) • Rituals & opportunity for RAC staff/residents to grieve (Fryer, Bellamy, Morgan, & Gott 2016; Maitland, Brazil & James-Abra, 2012) • Dead body management/removal, informing residents – risk of being perceived as disrespectful (Komaromy, 2000; Tan, O’Connor, Howard, Workman, O’Connor, 2013) • Values conflicts - RAC’s own institutional values, values of families, resident/s, staff or other stakeholders in end of life in conflict (Oberle & Hughes, 2000; Hamilton, 2001)

18. Conclusion • RAC require a more considered view of the moral and ethical risk and safety for all stakeholders in dying in residential care facilities. RACs could make their own beliefs about death and dying less discrete thereby mitigating ethical risks. • Multi-religious, multi-cultural as well as generational shift will increase the challenges in providing ‘good death’ experiences for all staff, residents and families where socially approved forms of dying and death will be less normalised across a diverse society

19. Thank you This project was co-funded by the NZ National Science Challenge: Ageing Well & Perpetual Guardian Trust NZ - Ted and Molly Carr Trust Deborah Balmer, MA, PG Dip Teach, PhD School of Nursing Faculty of Medical and Health Sciences  University of Auckland Private Bag 92019 Auckland 1142 Email: d.balmer@auckland.ac.nz

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