Pōuritanga: Whānau Māori experiences of end-of-life caregiving, death and tangihanga (funeral customs) during New Zealand’s COVID-19 lockdowns

ABSTRACT

During the COVID-19 outbreak a four-level alert system placed social restrictions on New Zealanders to minimise the spread of the virus. Hospices provided community-based care reduced to telecommunications in some regions. Marae (ancestorial gathering places) were closed, and families had to stay in their ‘bubbles.’ This article presents the findings of the Rapua te Mārama study to highlight bereaved Māori families end of life caregiving, death and tangihanga (funeral) experiences during COVID-19 Lockdowns. We highlight how the disruptions impacted Māori death customs and how whānau adapted. Lockdowns impacted the relational processes that underpinned whānau caregiving. Due to the pandemic restrictions there was a lack of palliative care provision within the home. Tangihanga (funeral customs) and Māori death customs were affected; despite this whānau honoured the rangatiratanga (self-determination) of their ill and dying.

KEYWORDS:

• COVID-19
• death
• end-of-life
• palliative care
• tangihanga

Introduction

The New Zealand government responded to the COVID-19 outbreak with a four-level alert system that placed social restrictions on New Zealanders to minimise the spread of the virus within the community (New Zealand Government 2020a; 2020b). Hospices provided only community-based care, limited to telecommunications in some regions. Marae (ancestorial gathering places) were closed, and New Zealanders had to stay in their ‘bubbles.’ The term ‘bubble’ refers to a family or group residing together in a single dwelling. The social restrictions applied to everyone, regardless of a person’s health status.

Escalating stress was placed on Māori health services and Whānau Ora facilitators to deliver equitable care for Māori (Indigenous New Zealanders) (Waitangi Tribunal 2021). The pandemic presented an increased risk of hospitalisation from COVID-19 (Steyn et al. 2020), exacerbating existing barriers Māori were already experiencing in health care (Graham and Masters-Awatere 2020; Espiner et al. 2021). Te Rōpū Whakakaupapa Urutā, a national Māori pandemic group, called for Māori needs to be placed at the heart of decision-making; however, the level of involvement was inadequate to support whānau (family and extended family) locked down at home when someone was dying.

The pandemic imposed rāhui (temporary prohibition/restrictions) on the movement of New Zealanders unlike any other countries had experienced. It meant that many people who died during the COVID-19 pandemic from conditions including but not exclusive to COVID-19, died alone due to visitor restrictions in hospital, hospice and Aged Residential Care facilities. This practice runs contrary to Western understandings of ‘good dying’ which underpin contemporary palliative care practice (Clark 2002; Gott et al. 2004), and to the centrality of Māori end-of-life kawa (protocols) and tikanga (customs), explained in more detail below (Moeke-Maxwell et al., 2018b). Crucial kawa and tikanga practices to support dying and grieving were impacted across all care settings, including hospice, aged care, hospital, at home and the community.

Health inequities in Aotearoa and internationally (Graham and Masters-Awatere 2020; Iacobucci 2020; Espiner et al. 2021) have been brought sharply into focus by the pandemic; more Māori died proportionally than non-Māori during this time. As Dr Rhys Jones (2020) (Ngāti Kahungunu) has argued, if the pandemic response ‘continues under a business-as-usual model, [it] will preferentially benefit Pākehā New Zealanders and fail to protect Māori from the worst outcomes.’ Before the pandemic, Māori were already facing inequities in accessing timely and culturally appropriate palliative and end-of-life care. Moving forward, The Ministry of Health (2017) have vowed to prioritise equity for Māori.

The Te Ārai Palliative Care and End of Life Research Group team were concerned that barriers to palliative care would be exacerbated by the pandemic, particularly for Māori whānau. Indeed, the impact of restrictions was anticipated to be particularly profound for Māori whose cultural and spiritual end-of-life practices require a collective and relational whānau presence. Whānau are needed to carry out tikanga and death rituals including hui (gatherings), kotahitanga (unified decision-making), karanga (calling), karakia (prayers, chants, incantations), waiata (singing), tangihanga (funeral customs), nehu (burials), hākari (feasting) and kawemate (memorial services) (Moeke-Maxwell et al. 2018b, 2019, Moeke-Maxwell and Nikora 2023).

Rapua te Mārama study

This article presents the findings of the Rapua te Mārama study to highlight bereaved whānau Māori death experiences during COVID-19 Lockdowns. We led a qualitative Kaupapa Māori study to investigate the impact of social restrictions on whānau who were responsible for caregiving, attending to the dying, carrying out post-death care and conducting tangihanga during this time, no matter where someone died. Our aim was to disseminate the research findings to support bereaved whānau by telling their stories using Arts-based Knowledge translation methods and to inform future pandemic health and tangihanga policy.

Methods

Research methodology and context

The research team used Kaupapa Māori community-based participatory research (Bishop 1999; Cram 2001; Walker et al. 2006; Hudson et al. 2010) at seven sites in Aotearoa New Zealand (Mid-North, Aotea Great Barrier Island, South Auckland, Tauranga, Hawkes Bay, Wellington and Motueka). Whānau who were outside the seven sites but elected to participate in interviews were included; these two whānau reside in the lower South Island, making eight research sites in total.

The team led this work under the cultural guidance of Te Ārai Kāhui Kaumātua (Te Ārai Palliative Care and End of Life Research Group). At every phase, Māori were included in the research process, developing the research questions and aims, conducting fieldwork, analysis, collaborating on story writing, guiding resource development, and leading dissemination activities. A high standard of ethical and cultural safety (Curtis 2020) was provided to bereaved participants and their data (Hudson et al. 2010).

Three cohorts were interviewed about their experiences during COVID-19 Lockdown Levels 3 and 4 (2020–2021) using qualitative methods. These cohorts included bereaved Māori whānau, health professionals who provided palliative and end-of-life care and funeral directors who provided their services to Māori whānau.

The study was approved by the University of Auckland Human Participants Ethics Committee (Ref. No. 019834). The project was funded by a Health Research Council COVID Equity Grant 2021–2023.

Participants

We interviewed 28 Māori whānau who experienced the death of a whānau member with a known life-limiting illness during COVID-19 Alert Level 4 or 3 to identify: a) whānau experiences of providing end-of-life care and post-death care to someone with a known life-limiting illness who died during COVID-19 restrictions; b) the strategies and tikanga adaptations whānau drew on to address their palliative care and post-death care needs; c) gaps in health and social care; d) experience of tangihanga and funerals; and e) experience of bereavement. We also explored health professionals’ (n = 14) and funeral directors’ (n = 14) perspectives of palliative and end-of-life care for Māori, including post-death care needs, gaps, and solutions.

Recruitment

Trusted community research networks, community collaborators, hospices and local elders were used to engage in recruitment. Whānau were approached to gauge interest in the study. Those that consented were contacted by the lead researcher who provided verbal and written information and answered questions about the study. Participants provided both verbal and written consent at the start of their interview. Participants were confidential unless they took part in public dissemination activities. Confidentiality was waived for the twenty-three whānau who also participated in the public photographic story exhibition (Moeke-Maxwell and Mason 2022).

Data collection

The lead researcher or members of the Te Ārai Kāhui Kaumātua advisory group conducted semi-structured interviews (between one to four hours) in a place of the participants’ choosing, including, their private homes or at their marae; this ensured participant comfort and good connections (Hudson et al. 2010). Two interviews were conducted in te reo Māori (Māori language) and translated by members of Te Ārai Kāhui Kaumātua.

Health professionals and funeral directors were asked about their observations of whānau end-of-life experiences, caregiving, and conducting tangihanga.

All interviews were digitally recorded and transcribed confidentiality by a third party. Each whānau received a summary of their interview, written as a pūrākau (story), by the lead investigator and co-investigator to read, amend, and approve.

Analysis

The researchers headed an inductive thematic analysis (Brewer et al. 2014) using the NVivo12 software programme to code participants’ experiences. The analysis focused on the experiences of caregiving during COVID-19, experiences of using health care services, and of conducting tangihanga. Our research team applied a reflexive approach to reflect on our analytical processes to inform the coding framework; we emphasised the subjectivity of transcripts and the interpretation of data. The lead researchers, Te Ārai Kāhui Kaumātua, and the Community Research Collaborators were consulted on the analysis. Ongoing engagement with whānau occurred throughout the research to ensure our analysis was robust.

Dissemination

Arts-Based Knowledge Translation methods translated the findings into virtual and tangible resources (Parsons and Boydell 2012; Rose 2016). We produced the Rapua te Mārama book containing whānau pūrākau (stories) and whakaahua (family portraits) of life and death during COVID-19 Lockdown. Whānau were invited to participate in a public exhibition of their stories and portraits. The information was available through various formats including an online exhibition, a hard copy book, and an electronic book (Moeke-Maxwell and Mason 2022). Authors employed a ‘Humans of New York’ portrait and story-telling format in collaboration with the 23 whānau who chose to tell their story publicly. Our collaborative project produced short narratives about their experiences with palliative care, death and tangihanga during lockdown.

Each whānau had a professional photographer take their portrait in a place of their choosing at or near their home. Many chose to hold a photo of their deceased whānau member while being photographed. The aim was to show the portraits and stories and provide educational lectures at gallery exhibitions spanning one and two weeks in eight locations including Aotea Great Barrier Island and the North and South Islands of New Zealand.

The research team and participants unanimously decided to curate a virtual reality online exhibition due to the Auckland lockdowns in 2021 and to also safeguard the health of the older participants. The Rapua te Mārama virtual reality online programme innovatively used gaming techniques to translate Indigenous pandemic health information. In 2022 the team travelled to eight research sites to return the findings to whānau participants and their communities; each storyteller whānau were gifted a framed portrait and a copy of the Rapua te Mārama book.

Real names and verbatim quotes are used with permission to offer the twenty-three whānau a voice while illustrating the identified themes. The themes highlight the importance of spiritual and cultural customs before, during, and after death and throughout the bereavement process. Participants who did not take part in the dissemination activities requested anonymity when findings were disseminated.

Findings

Disruptions to tikanga before death

Whānau experienced disruptions providing care to someone at end of life who had a serious illness. Whānau caregiving generally involves more than one member contributing to caring for the ill person (personal cares, arranging and attending medical appointments, procuring and administering medications and caring for the tinana (body); the wairua (spirit) and hinengaro (mind and emotions) of the unwell person). Often one or two main caregivers lead and carry out the end-of-life care. Whānau also provide support and care to other members of the whānau during this time and particularly following bereavement, when people are experiencing deep pōuritanga (grieving).

End-of-life care was conducted by family members living in the bubble. Sometimes there was only one person who carried out care at home. Someone hospitalised may not have had anyone at their bedside or this was limited to one person. The Shaw-Ryland whānau advocated to have two family members beside the bedside when their family member was dying; this was agreed to by staff with the support of a specialist who provided a written request to the hospital. They commented:

At one point, I was told by staff, ‘Only one person is allowed to be here; one of you will have to leave.’ I said, ‘I’m not leaving, and I don’t want Matt’s son to go either because I need him to support both of us. I’m staying here.’ Then I rang a hospital manager I knew and said, ‘Look this is what’s happening.’ I said, ‘One of us has been asked to leave, neither of us are going.’ In support, Matt’s cardiologist wrote a letter to the CE, signed off by Palliative Care, to say that Matt was at the end of his life and was likely to pass away over the next couple of days.

When whānau could not be with someone who was dying it was emotionally distressing –whānau experienced frustration, anger and deep mamae (emotional pain) and pōuritanga (depression, despondency, dejection, unhappiness, sadness). This distress was exacerbated when an older person had frailty or dementia and was completely reliant on their whānau before being hospitalised and separated from them. The person with mate wareware (dementia) experienced confusion causing mamae for whānau. The Kahi whānau recalled their distress when their mother was hospitalised:

Our doctor tried everything to heal her urine infection but eventually we had to take Mum to hospital. I was with her in the Emergency Department, but they said, ‘You’re not allowed to go on the ward.’ That threw our world upside down. I thought ‘We can’t leave Mum here by herself.’ But we had no choice in the matter. Mum needed that professional help … I managed to get hold of the nurse and I just cried my eyes out. I said, ‘It would be easier if I come in and look after Mum. Can I come in?’ She said, ‘Sorry you can’t’.

Whanaungatanga and caregiving practices

Social restrictions disrupted relational processes that inform the way whānau provide end-of-life care. A key finding identified the disruption of whanaungatanga processes. Whanaungatanga includes relationship connections and kinship rights and obligations expressed through shared experiences. Working together as whānau strengthens the whānau and gives a sense of belonging. Normally, end-of-life care, dying, post-death care and tangihanga would involve the whole and extended whānau; however, the care responsibility was often conducted by only one or several individuals. They had the responsibility to convey information and seek kotahitanga (consensus) on decisions with other whānau who were locked down in their bubbles. These individuals had to take on multiple roles including cultural and clinical roles to which they were unaccustomed.

Some Māori patients died in hospital or an Aged Residential Care (ARC) facility; sometimes there was only one whānau member present due to the restrictions. Whānau were required to wear PPE gear in a healthcare setting which obstructed them seeing, hearing, or touching the person (skin-to-skin). A hospice kaitakawaenga (cultural liaison) questioned whether it was necessary to have whānau in PPE gear when the dying family member was in a private room.

Was it necessary? You know they went into their own rooms, so they had a room. It was quite sad for one, one whānau member. Who thought, because their whānau, was going in and out of consciousness and, and the thought of that person only seeing a ‘Martian’ that’s their word; ‘I must look like a Martian’ … so staying alongside them and then they’ve got to leave, late at night … 

Palliative care at home

Gaps in community palliative care exacerbated unmet palliative care needs at home. Not all hospices provided home-based palliative care in the community during lockdown. This placed a huge strain on whānau, especially when someone was needing urgent medical attention. The Ryan whānau said:

[Lynn] was in pain the day before he died and haemorrhaged. We didn’t know what to do. Those who were in the room were traumatised by what they saw. It sparked a real panic in some of us. The district nurse said [over the phone] ‘Get that morphine into him.’ We didn’t have the palliative care support we needed … 

Some unwell people feared being without their whānau in hospital and dying and so chose not to seek medical help highlighting the invisible an unmet palliative care need within the community at that time. The Onekawa whānau said:

I said, ‘Dad, do you think you need to go to the hospital? I think we need to ring an ambulance.’ And his response to me was, ‘If I go, I won’t be coming back.’ That was his feeling inside. Dad did all he could to stay with us because he knew we couldn’t be in hospital with him. He knew if you died you got buried straightaway … He also feared if he went to hospital, he would get COVID-19. I knew that he would rather die here with his whānau than alone in the hospital, so I went with what he wanted.

Disruptions to tikanga following death

Traditional tangihanga were banned and marae were closed due to strict tangihanga policies and social distancing restrictions. Tangihanga policy required the tūpāpaku (corpse) to be uplifted by a funeral director immediately after a death certificate had been signed by a medical doctor. This breached whānau tikanga. Whānau were prevented from travelling across regions to be with someone who was ill or dying or to attend a tangihanga. Tūpāpaku could not be interred at urupā (ancestral gravesites) unless special arrangements were made.

Whānau appreciated the support they received from funeral directors. As death and bereavement care experts, funeral directors were pivotal in ensuring whānau had a longer time to spend with the deceased than the policy specified. Some whānau were able to have the tūpāpaku at home overnight before they were uplifted by funeral directors or the tūpāpaku was interred in a nearby family urupā. However, whānau were obligated to use funeral services and were often burdened by the funeral costs; many of these costs would normally be mitigated by whānau using their vehicles for transportation, making their own waka tūpāpaku (coffin) or using technology to connect people at a service, for example. In most cases funeral directors charged a fee for storing tūpāpaku and there were additional costs associated with live-streaming services.

Changes in death customs

Whānau who were living in the bubble had to carry out post-death care (looking after the body) until a death certificate could be signed and a funeral director assigned. The immediate upliftment of the tūpāpaku breached the cultural custom of staying (and sleeping) near the body for at least three days. Most whānau did not have the expected level of cultural support needed to conduct their death rituals, including knowing correct karakia and whakawātea (cleansing rituals) and rituals to takahi whare (ceremony to lift tapu (spiritual restriction) from residence and to clear spirit of deceased from house).

For many whānau the pandemic was the first time they had used cremation. They thought they had no choice but to opt for cremation due to the unknown length of time lockdowns. Many felt they breached their burial customs by choosing cremation causing distress for whānau. However, one sexton (a person who looks after a gravesite) from his marae, although initially upset at the decision to cremate his nephew, later came to promote cremation to his whānau as the land in the urupā was becoming scarce and he thought cremation was a useful land-saving internment method.

Preserving rangatiratanga

Whānau exhibited their rangatiratanga (right to exercise authority) by adapting to the social restrictions as best they could to care for the sick, dying and to inter and farewell their deceased. Holding the mana (status, spiritual power) of the ill person in the highest regard and fulfilling their cultural and spiritual preferences to the best of their ability was a way of showing aroha (love) and respect to the dying; this was the most important goal for whānau. Whānau took on new roles to conduct tikanga and spiritual customs to ensure people died and were farewelled with dignity.

We women organised Ed’s tangihanga. We were a one stop shop! Kai karanga, kai waiata and minister. (Jones whānau)

We became priests, funeral directors, and doctors because we had no choice–we had to do that. (Ryan whānau)

Whānau did everything on behalf of hapū, iwi and community. (Hedger whānau)

I think our whānau glues us all together and keeps us strong until we can be strong for ourselves. They carry us, they carry the weight of our heart so that we can be within the space, whatever space that I (McDonald whānau).

Whānau were creative in how they responded to the challenges the lockdowns posed. They relied on their whanaungatanga networks to ensure close and extended whānau were involved. When a kuia was dying several ‘songbirds’ (women) arrived with guitars to sing to her as is the whānau custom. After a sudden death bereaved whānau were in shock, therefore, other whānau organised and carried out tangihanga protocols. In one region the local community lined the driveway as the whānau returned home after seeing the body of their son, who took his life, the community performed a haka to raise the mauri (energy life force) of the whānau to encourage and support them, whānau, friends and neighbours also cooked and delivered meals to the kāinga (home) of the grieving whānau. Strict tikanga was adjusted around the tūpāpaku due to the extensive circumstances, such as eating in the same room as a tūpāpaku, this is ordinarily not accepted and is considered tapu.

Social media and technology were used to connect whānau and to carry out cultural customs at time of death and after death; hui, kōrerorero (to talk/discuss), karakia, waiata and decision-making were often done via Zoom or FaceTime and live streaming was also used for tangihanga. However, not all whānau had access to the internet, social media, or technology. Funeral directors often supported the customary practice of being with the body after death and many whānau were permitted to keep the body for several hours or overnight before being uplifted.

Bereaved call for a national COVID-19 memorial event

Whānau grief was exacerbated by an inability to practice end-of-life and post-death cultural care customs including marae based tangihanga. The bereaved found it extremely difficult to be separated from the tūpāpaku, not having whānau present when someone was dying, and following death. Not being able to honour a person’s wishes and needs before or after they died fostered feelings of anger, inadequacy, guilt and emotional pain that complicated the grieving process. For example, whānau were often unable to return tūpāpaku to ancestral urupā as this required crossing regional boundaries which was prohibited. The Shaw-Ryland whānau participant reflected on her anger:

Then the funeral director took Matt to the funeral home. My heart wrenched having to leave him. I wanted to go too, but I couldn’t because we were in Level 4. I drove home, but I didn’t want to go home. It was a howling cold southerly, horrible … I stopped at the park. I walked in the rain and kicked every tree down there! It was a release of stress, anger, and emotions, a way to let everybody know how unfair it was. I spent two hours walking in the freezing cold rain. I thought, it was unfair that we couldn’t do the normal things; we had no family to surround us. There was no support. If you’re whānau pani you sit next to the deceased person, and people care for you. But they were all locked in their bubbles. It was terrible.

There was no bereavement care available to bereaved whānau following the pandemic. Participants spoke about their pōuritanga; they expressed feeling shocked, stuck in their grief and confused or angry. One woman proactively set up a bereavement support group to help her process her mamae. Participants spoke about their desire for the New Zealand Government to lead a national COVID-19 Memorial event to acknowledge the loss, distress, grief and suffering experienced by all New Zealand whānau and families who had someone die from COVID and non-COVID deaths during the lockdowns to acknowledge the extraordinary efforts of health professionals, funeral directors, police, and the New Zealand Armed Forces. To date, our requests to engage government in this national healing event have been unsuccessful.

Discussion

Māori palliative care during lockdown

There is limited research undertaken on the experiences of Māori in palliative care and post-death care spaces during the COVID-19 pandemic. The Rapua te Mārama study enabled Māori to voice their experiences of end-of-life caregiving and death, highlighting the relational, cultural, and spiritual importance of palliative care and the pōuritanga caused through the cultural and spiritual disruptions. Whānau caregiving practices promote psychological, spiritual, and physical support; the pandemic social restrictions prevented whānau from carrying out their end of life cultural customs when using health services (Frey and Balmer 2021).

Our findings reveal that Māori whānau experienced deep mamae and pōuritanga. People with life limiting conditions need access to good palliative care, especially during pandemics lockdowns when social distancing restrictions prevent family from being available to help with caregiving. Māori who had a life limiting illness were subject to the same visitor restrictions and tangihanga policies within health care as people diagnosed with COVID-19 regardless of the underlying cause of death (Ministry of Health 2020). Social restrictions limited visitation of ill loved ones in palliative care facilities and increased misinformation; there were multiple and confusing updates from medical staff (Plunkett et al. 2021). Hospital policy restricted visiting preventing whānau to support for patients within the hospital system; at best, only one person could attend a family member at a bedside. Whānau want to be together when someone is dying in a hospital setting but during COVID-19 this tikanga was obstructed (Donnelly et al. 2022). Our findings shed light on the impact disruptions to cultural death customs have had on whānau, supported by recent research. There is concern about prolonged grieving and mental health for bereaved Māori whānau (Burrell and Selman 2020; Enari and Rangiwai 2021) due to overwhelming feelings of guilt, frustration, denial, disenfranchised grief, disruption of connectedness, autonomy, and disrupted burial and funeral rites (Katz et al. 2021).

The hospital visitation restrictions and the tangihanga policies (various iterations) prevented whānau conducting protective cultural and spiritual processes which enabled the full expression of grief (Moeke-Maxwell et al. 2020). As our participants indicated, most whānau did not have tohunga (spiritual leaders) or kaumātua (elders) within their ‘bubbles’ to guide the whānau on the correct tikanga including prayers and cultural customs during this time. Future pandemic planning must consider how optimal palliative care can be delivered during national crises.

Tangihanga during COVID-19 lockdowns

When someone is dying whānau often prefer to be together to ensure everything that needs to be done. Together, whānau draw on extended whānau members to carry out vital cultural and spiritual customs before, during and following death (Moeke-Maxwell et al. 2018a, 2018b, 2019, 2023). Māori communities, iwi and hapū should be fully involved in future pandemic decisions to ensure the relational, cultural and spiritual aspects of end-of-life care, dying and death are observed. Our findings confirm the need for whānau to be together when someone is at the end of their life. Whānau function effectively as caregivers when they can be together, talk together, hui together, plan together, work together, share the caregiving load, make decisions together and awhi (embrace, hug) each other (Moeke-Maxwell 2022).

The pandemic witnessed Māori community, iwi and hapū involvement in protecting whānau from contagion and supporting the vaccination rollout. However, Māori communities were less visible in the decision-making related to the needs of whānau within palliative care. Without access to community palliative care support, our findings demonstrate the care whānau exerted to support a dying person. Unmet palliative care needs (seeing someone in pain and suffering) caused distress for whānau long after the pandemic. Processing grief can become complicated by feelings of guilt and prolonged grief.

Planning tangihanga during pandemics

Our findings highlight that tangihanga related COVID-19 policies were challenging to navigate as they changed frequently. Whānau were reliant on funeral directors to help them navigate tangihanga related policy. It was realised by those whānau who had access to kaumātua and cultural elders to lead tangihanga customs, how essential tohunga are in tangihanga and how they relieve additional stress and organisation from the bereaved whānau (Moeke-Maxwell et al. 2020). Tangihanga policies prevented whānau conducting protective cultural and spiritual processes which enabled the full expression of grief and time spent with the tūpāpaku (Moeke-Maxwell et al. 2020). Moving forward access (in-person or virtually) to tohunga or kaumātua must be prioritised to aid in cultural customs and mitigate prolonged grief and suffering (Kokou-Kpolou et al. 2020).

During the pandemic the amount of people who could attend tangihanga fluctuated relative to the COVID-19 Alert System level (New Zealand Government 2020b). In Level 1 only the immediate ‘bubble’ could be present to view the body, in a graveside service or a chapel service, restrictions were extended to 10 people in Alert Level 2, 25 people in Alert Level 3 and 50 people in Alert Level 4 (New Zealand Government 2020a). The inability to view the body after death or attend a service negatively impacted whānau. Heartache and distress were experienced by whānau who were unable to attend the tangihanga.

Having to select attendees for the funeral service placed significant stress on whānau; and those excluded experienced further mamae. In future, planning for whānau to be together when someone has a known terminal illness or accompanying the old or frail might curtail the risk of contagion and yet still provide whānau with the relational, cultural, and spiritual support they need. The grieving process is disenfranchised when cultural needs are unmet during these critical times (Kokou-Kpolou et al. 2020).

The COVID-19 literature focusses largely on Māori whānau’s capacity to carry out tangihanga given the ongoing alterations to tangihanga policies (Power et al. 2020) which compromised the ability of whānau to complete the final cultural acts of care (Long et al. 2022). Social restrictions limited access to spiritual and cultural leadership and support to conduct tangihanga (Moeke-Maxwell and Mason 2022). The Rapua Mārama study included the lived experiences of whānau before, during and after death in support of past pandemic research. Specifically, challenges in organising burials and cremations (Tipene-Allen 2020; Donnelly et al. 2022), adjusting tikanga to meet social restrictions during tangihanga (Moeke-Maxwell et al. 2020; Power et al. 2020), disruptions in the tangihanga process, and the impact on bereaved whānau's ability to grieve and say their farewells (Plunkett et al. 2021), as well as returning the tūpāpaku to ancestral lands (Rangiwai and Sciascia 2021).

During the pandemic marae, community venues, private hospitals and hospice premises were underutilised. In a future outbreak, these spaces could be repurposed for palliative patients and their whānau caregivers.

Technology and tangihanga

Technology proved to be invaluable during lockdowns as it supported whānau to stay connected and strengthened kaitiakitanga (guardianship) when a whānau member died (Morgan et al. 2023). However, technology cannot replace the healing warmth provided by a family’s human touch (Moeke-Maxwell et al. 2020). Digital communication connected whānau within Aotearoa and internationally enabling people to say ‘goodbye’ who were physically unable to be present (Enari and Rangiwai 2021; Plunkett et al. 2021; Rangiwai and Sciascia 2021). Furthermore, the reliance on technology highlighted disparities among whānau, including not owning smartphones, restricted technology skills or living in rural regions with limited internet connection (Dawes et al. 2020; McClintock et al. 2022). Strategies for future pandemics should keep abreast of technological advancements and equitable ways of ensuring all whānau have opportunities to continue their relational ties through utilising these social tools.

Bereavement and grief

While social restrictions were placed to manage the spread of COVID-19 in the community, these restrictions disrupted Māori traditional death and dying practices and complicated the process of grieving (Tyson 2020; Long et al. 2022). In preparation for future pandemics, systems of effective care for bereaved peopled must be established. Our findings demonstrated how the tangihanga and social distancing policies inflicted further mamae experienced by whānau which was real, raw, and long lasting. It is evident that future tangihanga policies must have cultural considerations to support whānau to maintain connections and traditional processes to prevent disenfranchised, complex, and long-lasting grief.

Conclusion

With new insights from Māori experiences of delivering modified cultural customs and palliative and end-of-life care during the pandemic we can better understand the impacts of tangihanga policies. We are beginning to understand the needs of whānau caregivers who carry out end-of-life and death care customs. Indicative in our findings, the pandemic unintentionally revealed the critical importance of Indigenous cultural and spiritual customs at end of life and the crucial need for palliative care to be richly and relationally driven by whānau. Poor experiences of palliative care were evident prior to the pandemic. We have drawn attention to the current gaps in Māori palliative care to prioritise optimal care during future national crises (Te Ohu Rata o Aotearoa 2020).

Māori communities must be involved in formulating recommendations to support culturally appropriate and equitable palliative and end-of-life care (including post-death care and bereavement support) during pandemics. This will ensure whānau are well supported at end of life to carry out their care customs and their death rituals to minimise pōuritanga. Careful planning and preparation must be done during non-pandemic times to prepare for a more secure future. Reimaging palliative care and tangihanga is essential if we are to avoid the mamae whānau experienced while caring for the dying, the deceased and each other.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

New Zealand Health Research Council’s Māori COVID-19 Equity grant (2021–2023).