FormalPara Key Points

  • Māori (Indigenous New Zealanders) draw on relationships with whānau (family, including extended family) to provide culturally appropriate end-of-life care, including spiritual care, to family members with incurable cancer.

  • Aotearoa New Zealand healthcare providers and the palliative care workforce should implement palliative care cultural safety training to ensure the relational needs of whānau are supported.

  • Adopting palliative care cultural safety training as outlined in the Mauri Mate: Māori Palliative Care Framework for Hospices could support the health sector in ensuring whānau caregiving customs are practiced no matter where care is provided.

Māori whānau (families, including extended family) optimize tikanga (cultural customs) to awhi (embrace) and tautoko (support) ill and dying loved ones who live with, and die from, cancer. Discussions about Māori living with incurable illness often position whānau within palliative care deficit narratives, highlighting difficulties accessing health and palliative care services, which are often regarded as culturally unsafe and underserving whānau needs [1]. Within this “vulnerable” positioning, mātauranga Māori (Māori knowledge), cultural aspirations, and ways of caring delivered by whānau are often occluded within palliative care conversations. Drawing from the Pae Herenga study [2, 3], this chapter shares a culturally agentic and positive narrative in which whanonga pono (ancient values) and customs inform whānau support systems and caregiving practices. Our findings support the importance of whanaungatanga (relationships/connections) and the ways in which whānau exercise their right to exercise authority, leadership, and rangatiratanga (chiefly autonomy) over how they live, and die, with cancer through these vital relationships.

Māori and Palliative Care

Palliative care is an important part of the cancer continuum. It provides physical comfort and attends to the psychosocial needs of patients and bereaved whānau [4]. Palliative care in Aotearoa New Zealand requires updated services to better meet the growing demand and needs of Māori cancer patients and their whānau [1]. Accessing palliative care is difficult for Māori whānau, particularly in rural areas where services are scarce [4]. Misinformation about palliative care services [5, 6] and experiences of discrimination when using health services are ongoing barriers for Māori [8,9,10]. The New Zealand Palliative Care Strategy outlines the requirements of Māori patients for specific policies, community linkages, and care coordinators to ensure cultural safety and competence in services [11]. Palliative care services, including hospice care, are informed by a mono-cultural healthcare system that prioritizes the medicalization of dying over the cultural aspirations, needs, and lived realities of whānau. However, negative perceptions of hospice care are changing as whānau share positive experiences of accessing such services.

Compared to non-Māori, Māori tend to prefer community hospice care over hospice inpatient unit (IPU) care. This is evident in death records, which show that 44.8% of Māori deaths due to cancer occur in private residences (44.8%) and only 12.2% in hospice IPUs, compared to 26.0% and 19.7%, respectively, for non-Māori [7]. Regional patterns of place of death vary substantially for cancer, based on different models of contracting, care, and resourcing. In some districts, hospices contract palliative care beds from public hospitals or residential aged care [7].

While the aggregate proportion of Māori using residential aged care at the end of life seems low (17.9% for Māori and 47.2% for non-Māori), this is partly due to cancer patients preferring to die at home. Low uptake of aged residential care can stem from the decision to remain in the whānau home, from health service barriers, or due to the lower life expectancy of Māori [7]. When age at death is taken into account, there is little difference between Māori and non-Māori rates of dementia and use of residential care. As life expectancy among Māori increases, as predicted by Stats NZ, the New Zealand official data agency, the prevalence of dementia and the use of aged residential care is likely to increase [7]. To accommodate an aging Māori population, palliative care must shift at structural, systematic, and individual scales.

Māori Palliative Care Response

The right to quality palliative care has not gone unnoticed by Māori healthcare workers, allies, and researchers [4]. The Mauri Mate: Māori Palliative Care Framework focuses on access to palliative care for Māori adults and includes guidance on quality care, comfort, compassionate care, and support for whānau during and after the end of life, including spiritual care and grief support [4]. Another initiative, Whenua ki te Whenua; A Taonga for your Whānau, provides advance care planning advice to whānau to support end-of-life discussions [11]. A research-informed website, Te Ipu Aronui, provides information about caring for adults and kaumātua (Māori elders), utilizing digital stories reflecting whānau end-of-life care experiences that have been curated by the Digital Storytelling in the Pacific team [2, 3].

Methods

The research team’s official cultural advisory group, Te Ārai Kāhui Kaumātua, expressed the need for a project to inform fellow whānau caregivers about traditional Māori end-of-life caregiving practices for kaumātua, leading to the inception of the Pae Herenga project [3]. We interviewed Māori health professionals, tohunga (spiritual leaders), and rongoā (natural healing practitioners) with experience providing end-of-life care and bereavement support. We explored structural and systemic barriers impacting whānau from using tikanga within palliative care services [12]. Furthermore, we aimed to produce an informational resource for whānau and health professionals.

The study applied a Kaupapa Māori research approach philosophy, ethical framework, methodology, and inductive thematic analysis guided by the Māori worldview, working with and for Māori communities, and involving participants in each phase from preparation to dissemination [12]. We conducted 61 face-to-face interviews encompassing both individuals and whānau, to include a total of 103 participants from Mid-North, Hawkes Bay, Wellington, and Whanganui [2, 3]. Of these, three of the individual interviewees were living with incurable cancer, and 41 individual interviewees and 17 whānau interviewees spoke about cancer caregiving experiences.

Findings

Whanaungatanga (Relationships)

Whanaungatanga (relationships) are the cornerstone of whānau caregiving, bolstering whānau members to provide a collective system of care. Participants value whānau relationships, and the beneficial relationships and support received from health professionals, tohunga (spiritual leaders), and rongoā (natural healing practitioners). Specifically, when traditional customs were implemented correctly, relationships that supported the dying were dependent on Tribal cultural beliefs and practices, whānau resources, and demographics (i.e., proximity to other whānau and community support). Relationships are underpinned by the depth of aroha (love, care, and compassion) felt and expressed toward the ill and dying and their whānau.

Manaakitanga (Care)

Whānau contribute their knowledge, skill, time, and resources to ensure the ill and dying are attended to at every phase of their illness trajectory. They provide practical support and comfort in times of change and crisis. While large whānau have a bigger pool of human resources to draw on, smaller whānau manage to support their loved ones by taking turns with hands-on caregiving at home or in hospital, hospice, or residential aged care settings, assuming different roles such as overseeing medical appointments, obtaining and administering medicines, providing clinical support, taking charge of financial matters, running the home and caring for others who are māuiui (sick) or dependent, planning and carrying out post-death care, and performing tangihanga (funeral rituals).

Whānau function as a team, with individuals stepping forward to provide support over different time periods and gathering when death is imminent. At least one or two whānau members remain constantly at their loved one’s bedside. As a collective force, whānau function to make decisions and share the end-of-life care privilege and responsibility to support the dying person and each other during this spiritual transition. Some whānau set aside personal differences for the common goal of caring for dying loved ones. A participant, Jeff, reflects on his whānau’s caregiving experiences when his wife Ripeka had cancer. Jeff and his daughter, Amber, were her main caregivers, receiving a korowai (cloak) of support from their whānau:

It was whānau being around her to support her in one sense. But also, to meet her needs … some of the whānau weren’t [close]; there was a split, a rift, but as soon as she got sick, we just formed a circle around her … take care of her, any of her needs and whether it be a karakia [prayers] or waiata [singing], anything…. Just trying, trying to meet her needs along the way on that journey, and making sure that I was there. And this is where, mine and Amber’s role come in. We always made sure that when she was in hospital that one of us was there, or both of us.

Another participant, who had incurable cancer, encouraged her whānau to connect with and comfort her husband who was unconscious and dying of lung cancer. She asked them to talk to him and sing, but they just sat quietly, without speaking. The participant sang to her husband, and at the end of the song he reached up to her and said he loved her.

Awhi (Physical Presence, Emotional and Spiritual Support)

Quality end-of-life care occurs when whānau come together to be with, and to care for, the dying person. Having the right people, in the right roles, at the right time, helps to ensure things run smoothly. Hearing the words and upholding the requests of the dying contributes to a peaceful transition through the ārai (veil). Well-established relationships ensure practical, emotional, and spiritual support for the dying person. Whānau members are called upon to visit and sit with the māuiui person to support them and offer companionship. This allows the māuiui person to talk about their personal feelings or to reflect on things that are troubling them.

Strong connections mean the māuiui person and their whānau caregivers are comfortable having other whānau, friends and members of the community visit them at home. Together, visitors and the whānau share stories to uplift the spirit of the ill person and bring comfort to the whānau. Kaumātua (Māori elder) Arena and his wife use their cultural expertise to comfort grieving and bereaved whānau within their local community during the death and dying journey:

We go over and over the stories. It’s not frivolous but it allows those who are especially saddened to respond, and it engenders laughter and entertains them. Then you see by their faces, the spirits are uplifted. Don’t allow them to sit in their sadness. Bring them out; make them laugh. These are the beautiful aspects.

Wairuatanga (Spirituality)

The whānau interviewees discussed many forms of wairuatanga (spirituality). Some individual interviewees observed diverse spiritual beliefs and practices, adhering to Tribal customs alongside Christian practices or drawing on spiritual healing modalities from other cultural traditions (e.g., crystal healing, energy healing, Eastern spiritual practices). One participant who had incurable cancer spoke about her Christian faith and her belief in rongoā Māori (natural healing). She felt that faith and belief helped to keep her well and get her through the difficult times.

Meanwhile, participant Arena, a spiritual community kaumātua, spoke about visiting and providing comfort through prayers and karakia (chants) to whānau caring for their loved ones at the end of life:

In the homes, and if we are known to the family, there is a sense of wellbeing that pervades the family; especially when they see and feel the love and support that is present. We pray for compassion and wellbeing within; these prayers are not for me. They are for strengthening the mind and thoughts of the person who is terminally ill. To pray to the Lord, “This is your servant, help him,” and the help is immediate when we die. During the gravity of the illness, the Lord will be in our midst. In my own faith and according to the instructions of my ancestors, the first initiative is to pray and seek guidance from the Lord. This will strengthen your resolve.

Together, whānau use their established relationships to support those who are ill and dying and the other members of their whānau. Whānau carry out the practical aspects of caring but, importantly, they also ensure that the emotional, social, cultural, and spiritual needs of those who live with, and die from, cancer are fulfilled.

Discussion

Whanaungatanga (relationships) are weighted as a relational system of knowledge and resource exchange where whānau aroha, manaakitanga, awhi, and wairuatanga are expressed, and tikanga are shared and actioned to assist a loved person on their sacred walk home. Loving and caring relationships are an energy life force that nurtures and sustains the spiritual, physical, practical, emotional, and cultural realms of both people with incurable cancer and their whānau.

The findings reveal the significance of delivering culturally safe palliative care and other health services that support those who are ill and their whānau [6]. From a Māori perspective, successful health interventions are informed by customs, which place the person with cancer at the heart of the whānau. Once a connection has been established with the person who is ill and with their whānau, palliative care professionals can support the whānau to support the patient when accessing services and receiving treatment, and at the most sacred of times, when the spirit leaves the body.

The development of new and local models of palliative care service delivery must be inclusive of whānau to ensure services are oriented toward relational care practice. At a systemic level, collective action is necessary to support patient and whānau wellbeing at the end of life; this may resemble the implementation of cultural safety for healthcare professionals and cancer service providers when working with and for our Māori communities. Services need to respond more effectively to the palliative care needs of an aging Māori demographic with complex health needs, co-morbidities, cancers, and social determinants leading to health inequalities. The specific needs of individuals and whānau relative to their personal histories and life experiences must be taken into account and healthcare professionals should engage with the cultural safety and education training outlined in Mauri Mate [4].

Conclusion

Whānau step into cancer caregiver roles when loved ones become unwell and require support, providing home palliative care support, including hospice support. In addition, whānau also provide care for other whānau members who are grieving the loss of loved ones [6]. However, without establishing good relationships with whānau, access to support that aligns with cultural customs and unique needs will remain out of reach. Māori cultural safety training supports the healthcare workforce in integrating Māori cultural norms into palliative care [1]. From a palliative care service perspective, the health system must invest in resources to support whānau. Finally, since the 2021 legalization of assisted dying in New Zealand, whānau face new palliative care possibilities and challenges as they navigate the sacred pathway of caring for loved ones who seek physician-assisted deaths. Where these pathways will lead remains to be seen.