Chapter 3: Dying on Whose Terms? Navigating Palliative Care, Cultural Safety, and Systemic Barriers in End-of-Life Practices
Authors
Erin J Rooney1, Associate Professor Ruby Walter1, Doctor Melsina Makaza2, Professor Rhonda L Wilson1
Affiliations
1RMIT University, 2Mental Health Nursing, School of Nursing and Midwifery, University of Newcastle.
Conflict of interest statement
Rhonda Wilson is Professor of Mental Health Nursing at RMIT University. Ruby Walter is an Associate Professor at RMIT University. Erin Rooney is a PhD Candidate at RMIT University.
Abstract
This chapter explores the importance of cultural safety in palliative and end-of-life care (EOL) in relation to First Nations peoples. It considers how historical legacies, institutional control, and culturally unsafe practices continue to shape care experiences, often at the expense of autonomy and dignity. Reflective practice is presented as a practical and ethical tool that supports healthcare professionals to navigate these tensions, challenge systemic norms, and advocate for culturally safe care. The chapter also highlights the role of moral courage in enabling health professionals to speak up and provide care with integrity. Through a series of reflective case study activities, readers are invited to engage with real-world scenarios and consider how reflection can support more responsive, and culturally safe palliative care.
Keywords
Palliative care; end-of-life care; First Nations; cultural safety
Learning Outcomes
- Critically evaluate the role of cultural safety in palliative and end-of-life care.
- Investigate systemic inequities and historical legacies that shape access to and delivery of palliative and end-of-life care for First Nations people.
- Analyse the ethical tensions between autonomy and institutional control in palliative and end-of-life decision-making.
- Apply reflective practice to develop strategies for advocating culturally responsive and equitable palliative and end-of-life care.
Improving health outcomes for First Nations peoples
Improving palliative and EOL care for First Nations peoples requires a genuine commitment to cultural safety. Although healthcare professionals are expected to provide culturally safe care, systems often fail to support this. Culturally safe palliative and EOL care improves health outcomes for First Nations peoples by ensuring care is respectful, responsive, and aligned with their values and wishes.
Introduction
This chapter examines the role of cultural safety in palliative and EOL care for First Nations peoples, with a focus on how systemic inequities, institutional control, and culturally unsafe practices continue to impact health outcomes. It aims to explore how reflective practice, and moral courage can support healthcare professionals to recognise and respond to these challenges, advocate for culturally respectful care, and improve wellbeing at the EOL.
Definition of Terms within this Chapter
Before commencing this chapter, it is important to highlight the differences in terminology using throughout. While palliative care is a component of EOL care, these terms are not interchangeable. Palliative care focuses on improving quality of life (QOL) through symptom management and support for individuals facing challenges associated with a life-threatening illness (World Health Organization [WHO], 2020). Palliative care is not limited to EOL and can be provided alongside curative measures.
Palliative care can be implemented months, or even years before death is expected (Abbaspour & Heydari, 2021; WHO, 2020). EOL care is a subset of palliative care. While it still emphasises comfort, dignity and person-centred care, this is provided in a person’s final months or weeks and extends into bereavement care (Royal Australian College of General Practitioners [RACGP], 2022).
Cultural Safety in the Context of Palliative and EOL Care
As discussed in previous chapters, cultural safety is determined by the person receiving the care and the positioning of lived experience (Australian Health Practitioners Regulation Agency [AHPRA], 2020; Ramsden, 2002). Cultural safety requires on-going critical reflection of a healthcare professional’s knowledge, skills, attitude, behaviours and power differentials (AHPRA, 2020). While cultural safety is important in all healthcare settings, in the context of palliative and EOL care, the role of cultural safety and reflective practice takes on a deeper significance. To provide effective and meaningful palliative and EOL care, the care provided deeply involves a person’s beliefs, values, traditions, and identity (Glyn-Blanco et at., 2023; Monette, 2021). Palliative and EOL care require healthcare professionals to respect diverse beliefs about death and dying and what constitutes a good life (Monette, 2021). At times, healthcare professionals may be faced with cultural beliefs and practices they may not understand. Providing person-centred care requires reflection on one’s practice and own beliefs, and how biases could affect the care they provide. This includes approaching care with cultural humility, which involves a lifelong commitment to self-evaluation, recognising power imbalances, and being open to learning from the person’s lived experience and cultural knowledge (Masters et al., 2019; Singh et al., 2023). Providing palliative and EOL care can introduce situations where a healthcare professional may question their own beliefs or life. In these situations, when a health professional is faced with situations that differ from their values or moral beliefs, they may experience moral distress (Corradi-Perini et al., 2021). Health professionals can also experience existential distress, an emotional suffering that can arise when a person is confronted with the reality of approaching death, affecting them on physical, emotional, relational, spiritual, or religious levels (Pessin et al., 2015).
First Nations worldviews on health and wellbeing include the social, emotional, and cultural wellbeing of self and community (Gee et al., 2014). This whole-of-life perspective can approach death not just as a clinical event but a spiritual, communal, and cultural event, that incorporates the cyclical understanding of life, death, and life (Department of Health, 2021). When these elements are ignored or displaced by Western biomedical paradigms it can affect the wellbeing of people receiving care, their support systems and healthcare professionals. Healthcare professionals who recognise this dissonance between the cultural care needed and the Western biomedical paradigm may experience additional moral distress whereby they are caught between institutional mandates and their ethical obligation to provide culturally safe care (Brender et al., 2025; Olcoń et al., 2023). Therefore, the reflection on cultural safe care within the palliative and EOL care setting extends beyond introspection, by rather requires healthcare professionals to understand the colonial foundations of Western institutions, and the on-going harm the exclusion of First Nations voices when it comes to making decisions about comfort, death, and dying. It involves a process of reflexivity that may cause discomfort, uncertainty, and vulnerability. While these are all elements seen in both moral and existential distress, this chapter makes the argument that viewing these elements through a reflective lens can support both the healthcare professional and people within their care. By incorporating elements of cultural safety and reflective practice into palliative and EOL care, healthcare professionals can not only mitigate their own distress but help be a supportive voice in transforming current palliative and EOL care practices.
Reflective Activity 1
Sarah, a registered nurse, is caring for Jack, a 78-year-old First Nations man with advancing kidney disease. Jack has been in hospital for four months receiving haemodialysis. During her morning round, Sarah notices Jack is withdrawn and frustrated. When she takes the time to sit and talk with him, Jack tells her he wants to go home to be on Country. He says the hospital environment feels isolating and that he is tired of the treatments.
Concerned for his wellbeing, Sarah brings Jack’s request to the nurse unit manager (NUM) and suggests they explore options for care closer to his community. The NUM laughs and dismisses the idea, saying, “That’s not something we can organise, he needs to stay here, or he’ll die.” Sarah feels moral distress. She understands the cultural significance of Jack’s request but feels powerless within the hospital system to advocate meaningfully for his wishes.
- What would you do in Sarah’s situation after hearing Jack’s concerns?
- How would you respond to the NUM’s dismissal of Jack’s request?
- What actions could you take to advocate for Jack’s cultural needs within the limits of your role?
Historical Legacies
The foundation of palliative care in Australia is rooted in Western and often Christian ideologies. Dame Saunders, often credited with being the founder of the modern palliative care movement was Christian, which heavily influenced her views on spiritual wellbeing (Bradford, 2023). Throughout colonisation, religion has played a large role in missions, reserves and stations which were designed to erase cultural identity or to Christianise First Nations children (Australian Institute of Aboriginal and Torres Strait Islander Studies [AIATSIS], 2022; Kolig, 2022). While there is limited historical documentation or research on the effects missions had on First Nations cultural practices around death and dying, it is known that missionaries suppressed traditional ceremonies and languages (AIATSIS, 2022). Scholarly reflections on changes since the early twentieth century indicate that traditional mortuary rituals have ceased in many parts of Australia, with only modified forms retaining distinct cultural elements (McCaul, 2009, p. 278). This supports the conclusion that cultural practices such as Sad News or Sorry Business, smoking ceremonies, returning to Country, and other death-related traditions could have also been suppressed in favour of Christian practices during colonisation.
While there have been improvements in the delivery of palliative care and person-centred approaches, these colonial legacies are not relics of the past. It is important to note, that the Stolen Generation occurred between the years of 1910 until the early 1970’s (Australian Human Rights Commission, n.d.). This means that people requiring palliative care today, may have experienced this suppression of cultural practices firsthand or have experienced the effects this may have had on loved ones. Colonial structures and beliefs surrounding palliative and EOL care may still impede quality palliative and EOL care if health professionals are unaware of these effects. Health institutes may inadvertently promote practices that conflict with many First Nations peoples’ understandings of dying as a communal, spiritual process involving extended family, and connection to Country. Mainstream policies such as restricted visiting hours, noise limitations, and visitor caps frequently undermine these practices and can result in culturally unsafe care (Australian Indigenous HealthInfoNet, n.d.; Shahid et al., 2018).
Even when culturally appropriate services are accessible, they can be under-resourced, under-staffed, and stretched (Ristevski, 2020; Wilkinson, 2022). Aboriginal Community Controlled Health Organisations (ACCHOs), which may offer more holistic and culturally grounded palliative care, often operate with limited funding and resources (Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange [CREATE], 2020; National Aboriginal Community Controlled Health Organisation [NACCHO], 2019). The disconnect between the recognition of culturally appropriate palliative and EOL care and the constraints imposed by Western healthcare systems and funding models can result in significant moral distress, not only for those receiving care, but also for their families and communities. It can also affect health professionals working within systems that conflict with their values and constrain their ability to provide culturally appropriate care; recognising the delivery of culturally unsafe care can lead to significant moral distress (O’Connor et al., 2025; Smith et al., 2025). In palliative and EOL care, cultural safety is not solely about respecting difference; it involves addressing historical and ongoing harms that can make care culturally unsafe and morally distressing.
Autonomy vs. Institutional Control
Autonomy is considered a cornerstone of ethical practice in palliative care (Tahmasebi 2022). However, it is worth questioning how authentic autonomy is when individual choices can be constrained by institutional structures. Legally and ethically, a person’s wishes in palliative and EOL care needs be respected and upheld (Queensland University or Technology [QUT], 2024). Legal documentation such as advance care directives and consent legislation are designed to protect a person’s autonomy (QUT, 2024). While these legal protections are in place, it is important to consider how institutional barriers may affect their implementation. First Nations people within a Western healthcare setting may encounter racism, pressure to abandon cultural protocols, and lack of culturally appropriate care may introduce barriers that can impede a person’s ability to make medical decisions (Australian Institute of Health and Welfare [AIHW], 2023; Kerrigan et al., 2024). Understanding and honouring a person’s wishes requires clear communication and the establishment of trust. When culturally safe communication is absent, particularly for First Nations individuals, the ability to express values and medical preferences may be inhibited and therefore undermine autonomy in care (Kerrigan et al., 2024; Neller et al., 2024).
If healthcare professionals are not aware of the structural and cultural barriers that may influence a person’s decision-making, they may never hear the person’s true wishes. Power imbalances, fear of racism, previous negative experiences with the health system and lack of culturally appropriate communication can all contribute to silence or compliance that could be mistaken for consent (D’Costa et al., 2025; Kerrigan et al., 2025; RACGP, 2025). To support genuine autonomy, health professionals need to reflect on the care provided within their workplace and recognise how systemic factors influence care preferences to fully support culturally appropriate decision-making in palliative and EOL care.
Reflective Activity 2
Marlene is a 70-year-old First Nations woman with metastatic cancer who is now approaching the terminal phase of her illness. She is being cared for in a rural multi-purpose service on Country, close to her family. Marlene has clearly expressed that she does not want further treatment and is at peace with her passing. She has requested to spend her remaining time surrounded by family, with music playing and storytelling. She has also asked for a smoking ceremony to be performed in her room to purify the space in preparation for her passing, and she would like her grandchildren to visit freely, including outside of normal visiting hours.
However, you have overheard some nurses expressing concerns about fire safety, infection control, and the hospital’s policy on visitor numbers, stating that they should follow protocol and Marlene shouldn’t get “special treatment”. As a result, her request for the ceremony has been delayed pending management approval, and her family has been told they may only visit in small groups during designated hours. You begin to feel uneasy, questioning whether Marlene’s autonomy and cultural needs are being deprioritised in favour of hospital routines and institutional control. You worry that without honouring these cultural and spiritual needs, Marlene may not experience a good death.
- How might Marlene’s experience be different if her cultural needs were centred rather than treated as exceptions?
- If Marlene were from a dominant cultural background and requested a priest to bless the room along with aromatherapy, do you think the response would have been different? Why or why not?
- How do your own values or beliefs about a good death compare with Marlene’s?
Reflective Practice as a Tool for Advocacy
Having explored the challenges in palliative and EOL care including culturally unsafe care practices, systemic inequities, and the moral distress these create, it is important to consider how health professionals can respond in ways that are both ethical and culturally respectful. Reflective practice is key to delivering culturally safe care, as it requires healthcare professionals to critically examine their own cultural background, values, attitudes, and biases (Dawson et al., 2022). It also provides a space for healthcare professionals to examine the power they hold and consider how these factors may influence the care they provide to First Nations peoples (Dawson et al., 2022). In addition, reflective practice is also beneficial in palliative and EOL care. Reflective practice is also an essential element of mindful palliative care, serving as a process through which health professionals engage with the complexities of their professional experiences (Salins, 2018). Within emotionally demanding settings such as palliative and EOL care, structured reflection through practices including journaling and debriefing can enable healthcare professionals to examine their emotional responses, build psychological resilience, and develop adaptive coping strategies (Alodhialah et al., 2024; Salins, 2018). Reflective practice helps healthcare professionals clarify their values and make sense of difficult clinical situations. By thinking critically about their experiences, they can better align their care with their ethical principles and the expressed wishes of those in their care, which in turn can ease feelings of moral distress (Meziane et al., 2018).
To deliver culturally safe palliative and EOL care for First Nations peoples, reflective practice must be understood not as an optional skill but as an essential tool to recognise and respond to the impact of colonisation (Came et al., 2024; Rooney et al., 2024). Reflecting in this space requires healthcare professionals to confront the colonial legacies embedded in clinical systems, interrogate their own cultural positioning. Reflective practice allows health professionals to develop an understanding of cultural humility so that care is shaped by listening, reciprocity, and respect for First Nations worldviews (Dawson et al., 2022; Kennedy et al., 2022).
Moral Courage
Another useful tool for health professionals working in First Nations palliative and EOL care is moral courage. Moral courage refers to the readiness to act ethically and uphold justice, even when doing so involves personal risk, discomfort, or threats (Hakimi et al., 2023). Moral courage is widely acknowledged as a vital process in mitigating the effects of moral distress (Yildirim et al., 2025). In the palliative and EOL care context, health professionals that demonstrate strong moral courage can advocate for people within their care and protect peoples’ rights; essential skills for the delivery of good palliative and EOL care (Yildirim et al., 2025).
There is limited literature directly addressing the role of moral courage in achieving culturally safe care for First Nations peoples; however, several studies and theoretical perspectives highlight the important intersections between moral courage, ethical nursing practice, and culturally responsive care. Research indicates that moral reasoning, including moral courage, is fundamental to advancing culturally responsive healthcare (Markey, 2021). Broader nursing literature also establishes moral courage as a key factor in enabling health professional to uphold patient advocacy and ethical principles, even in the face of systemic or organisational barriers (Numminen et al., 2017). Within First Nations scholarship, Blackstock (2011) has argued that moral courage is essential in child welfare to challenge inequities and enact systemic change, a position that resonates strongly with the principles of culturally safe healthcare. Therefore, while explicit research on moral courage in First Nations health contexts remains sparse, the broader evidence supports its importance as an enabling factor for the delivery of culturally safe palliative and EOL care.
Case Study 1
Tanya is a 43-year-old First Nations woman with Stage IV breast cancer has chosen to undergo palliative chemotherapy in a large hospital in the mainland. While Tanya speaks English fluently, it is not her first language. During her time in hospital, she has built a strong connection with Lucy, a volunteer who speaks Tanya’s first language. Tanya often speaks to Lucy in their first language, laughing and sharing stories. These conversations are a vital source of comfort, identity, and connection as she undergoes her treatment.
Tanya is in a shared bay with three other people. One afternoon, you overhear a nurse tell Lucy that a visitor has complained about Tanya speaking in language, saying it makes them feel “uncomfortable”. The next morning, Tanya is moved to a single room down a quiet corridor. You are told the move is “to give her more privacy and rest”, but you suspect it is in response to the complaint. Over the following days, you notice a change in Tanya. She has become quiet and withdrawn. She no longer speaks in language and asks Lucy not to stay long as she “doesn’t want to bother people”. You feel deeply uncomfortable. While you did not make the decision, you begin to question how your silence may be complicit in what feels like a quiet act of institutional control. No one said anything overtly harmful, and yet something essential has been taken from Tanya.
You begin to reflect: what does moral courage look like when the harm is not loud or intentional, but woven into the everyday operations of care? How can you respond when cultural safety is quietly undermined under the guise of policy, comfort, or neutrality?
Conclusion
For palliative and EOL care to meet the needs of First Nations peoples, health professionals need to have a deep understanding of cultural safety, the historical legacies shaping access to healthcare, and an understanding of tensions between ethical care and institutional expectations. Reflective practice offers a pathway for health professionals to critically examine their own assumptions, recognise inequities, and develop strategies to help advocate for care that is both culturally safe. Engaging in this process also helps health professionals identify and manage the moral distress that can arise when institutional constraints conflict with cultural values or person-centred care needs. By recognising and confronting these challenges, health professionals are better positioned to act with integrity and have the confidence to challenge practices that compromise cultural safety and person-centred care. By doing so, health professionals can provide care that truly supports the needs, beliefs, and rights of First Nations peoples receiving palliative or EOL care.
Take away message
- Cultural safety in palliative and EOL care means recognising historical impacts and ensuring care respects the values, rights, and choices of First Nations peoples.
- Reflection and moral courage help health professionals notice inequalities, and speak up for culturally safe, person-centred care.
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