Exploring end-of-life aspirations with people who have lived experiences of homelessness
“E moemoeā ana au mō te waka rererangi, engāri kāore au e taea te eke - I dream of the airplane, but I cannot board it.”
At Te Ārai, we are committed to ensuring that the voices of communities traditionally excluded from palliative care research are heard, valued and acted upon. Our latest paper,“I dream of the airplane, but I cannot board it”: Exploring end-of-life aspirations with people who have lived experiences of homelessness, asks a simple but important question: how do people who have experienced homelessness think about the end of life?
The answers challenge many assumptions that underpin current approaches to Advance Care Planning.
“I want an airplane, eh? And sometimes you can’t get the airplane?”
The title of the paper comes from the words of one participant who struggled to describe their hopes for the future. In response, lead interviewer Stella Black developed the whakataukī: “E moemoeā ana au mō te waka rererangi, engāri kāore au e taea te eke” – I dream of the airplane, but I cannot board it.
Across interviews with 16 people with lived experience of homelessness in Aotearoa New Zealand, participants often found it difficult to talk about aspirations at all, let alone aspirations for dying.
For many, this was not because they lacked imagination or hopes. Rather, it reflected the realities of lives shaped by poverty, trauma, insecure housing, addiction, ill health and uncertainty about even the most basic resources needed to survive.
Survival comes first
Advance Care Planning is often built on the idea that people can imagine future scenarios, make choices about their care, and communicate preferences about how they wish to die.
Our participants highlighted how difficult this can be when day-to-day life is focused on survival.
When asked about their priorities at the end of life, participants rarely spoke about medical treatments or specific healthcare interventions. Instead, they talked about wanting warmth, shelter, safety, food, showers and somewhere peaceful to rest.
A good death was often imagined as having:
a warm, dry place to stay
freedom from chaos and violence
enough food and basic necessities
effective pain relief
trusted people nearby
dignity and respect.
The findings remind us that many things routinely assumed within palliative care, such as stable housing, social support and access to healthcare, are privileges that cannot be taken for granted.
The importance of relationships
One of the strongest messages from the study was the importance of trusted relationships.
Participants repeatedly described the role of homelessness support workers, peer workers and other trusted people who helped them access housing, healthcare, food and social support. These relationships were valued because they were built on trust, continuity, non-judgement and genuine care.
Many participants wanted someone they trusted to help them if they became seriously ill.
What was striking, however, was that many could not identify who that person would be. Family relationships were often marked by separation, loss, trauma or geographical distance. While "street family" and communities of choice were highly valued, they were frequently under-resourced themselves.
Participants highlighted the importance of someone being willing to "walk with them" through illness rather than repeatedly telling their story to new professionals. Continuity mattered. Trust mattered. Being treated with dignity mattered.
Healthcare is not always experienced as safe
Participants also shared many difficult experiences with healthcare services.
Some described feeling judged, unheard or retraumatised. Others reported poor communication about serious diagnoses and treatment options. Several recounted experiences that left them unwilling to engage with healthcare again.
These stories help explain why assumptions that Advance Care Planning conversations can be initiated through routine healthcare interactions may not hold true for people who have experienced homelessness. If healthcare relationships are characterised by distrust or episodic contact, opportunities for meaningful planning are limited.
The findings suggest a need for approaches that bring together palliative care, homelessness services, addiction services and peer support, rather than relying solely on traditional healthcare pathways.
What does this mean for Advance Care Planning?
A key contribution of the paper is its critique of mainstream Advance Care Planning during which current approaches often assume that:
people are comfortable discussing death
people can identify future preferences
family will be available to support decisions
healthcare professionals are trusted
individual choice and autonomy are the primary concerns.
Our findings suggest these assumptions frequently do not align with the realities of homelessness.
Instead, participants described lives where uncertainty is constant, resources are scarce, relationships are complex and choices are constrained by structural disadvantage. In this context, focusing solely on individual autonomy may be less helpful than a relational approach that recognises interdependence, trust and collective responsibility for care.
Listening differently
Perhaps the most important lesson from this study is that equity requires us to listen differently.
People with lived experience of homelessness are experts in their own lives. Yet their perspectives have rarely shaped palliative care policy, research or practice.
The study argues that new approaches to end-of-life planning must be developed in partnership with people who have experienced homelessness. These approaches need to recognise lived experience, connect care networks, address structural disadvantage and support aspirations for living before expecting people to articulate aspirations for dying.
As the paper concludes, supporting aspirations for life is a necessary first step toward supporting aspirations at the end of life.
Reference
Gott, M., Black, S., Wiles, J., Williams, L., Moeke-Maxwell, T., & Robinson, J. (2026).“I dream of the airplane, but I cannot board it”: Exploring end-of-life aspirations with people who have lived experiences of homelessness. Palliative Care and Social Practice, 20, 1-16. https://doi.org/10.1177/26323524261445576