Finding dignity and peace – a homeless man’s experience with advance care planning
The following feature is based on Can advance care planning (ACP) be a relational healing place for indigenous homeless people in Aotearoa New Zealand?*, an article originally published in Mortality journal that explores a Māori man’s experience with advance care planning and being homeless.
Daniel (not his real name) has agreed to share his story as an ambassador of the homeless community but did not wish to be listed as co-author of the article. For this piece, he wishes to be visually represented by a whale’s tail, a vision of hope that ties him to his whakapapa.
‘Daniel’ wishes to be represented by a whale’s tale – a vision of hope that ties him to his whakapapa.
Photo by Phillip Flores on Unsplash
Finding friendship in a car park
When researcher Sandrine Charvin-Fabre first got to know Daniel, it was in a car park at night, during her first year of doctoral research.
Aiming to understand the health care needs of homeless people in Aotearoa, she volunteered for a not-for-profit organisation, supporting the homeless community in the Bay of Plenty where she had lived for 3 years. She provided basic care and advice to between 60 and 150, mostly Māori, homeless people who gathered in the downtown car park once a week.
Most of those present in the car park had been disengaged from the mainstream health care system for years, with few possibilities to access regular sources of care.
One evening, with just the light of her cell phone – the street lighting was out – Sandrine spoke with one of those present, Daniel, about an upcoming operation.
‘Daniel stands a bit apart from the group, as always,’ she says, describing the scene. ‘The lights of cell phones, like a ballet of fireflies, wag around the pots of hot coffee and meals. Daniel is relieved to finally have his surgery planned for next week. The operation has been deferred several times due to the surgery backlog caused by the national COVID-19 lockdown… Being in his sixties, Daniel’s vertebral column plays tricks, and he expects much from the operation in the hope to regain better mobility. “You will visit me at hospital?” Daniel asks me. “Of course, I will,” I reply, cheerfully, trying to hide my concerns about how things will go for him at hospital and afterwards.’
When Sandrine Charvin-Fabre (left) first got to know Daniel, it was in a car park at night, during her first year of doctoral research.
‘The dead punish me; I hear their voices’
The surgery went well, and Daniel was discharged into a rest home for 3 weeks. After that he would be sent back to the boarding house he was living in, no matter what his concerns, needs or wishes were.
‘The morning of his discharge arrives and Daniel’s immaculate room at the rest home has the appearance of a battlefield,’ Sandrine says. ‘Daniel is sitting on the remote-control chair, his frail body, curled into himself, prostrate. Amongst his things scattered on the floor I recognise his bible, laying open, the block of pages dislocated from its cover. It is not the first time I have seen this. It is always a sign that the suffering resulting from Daniel’s life story is over-flooding what he can contain… His voice is sharp. “The dead punish me; I hear their voices,” he says.
‘I have entered the Māori world… the spiritual world, a world of beauty, creation and mystery in which life and death stand in an absolute relationship, unified by wairua (spirit). It therefore comes as no surprise to me that the dead converse with the living, and may continue to exercise a guiding presence… I did not associate Daniel hearing voices of the dead with mental health issues or psychotic manifestations. For many years, I practised in the South Indian Ocean area, where porous borders of different cultural and spiritual representations of disease and mental illness co-exist.
To stand without a place to belong to
‘For Daniel, being homeless means to stand without a place to belong to, to relate and connect with. Severed from the loving ties and support of his whānau (family, extended family) and hapū (sub-tribe), Daniel lives with the uncertainty that his embodied wairua will return to his ancestral land at the time of his death.
‘“[My family] are going to bury me somewhere and forget me.” Daniel’s words strike me deeply,’ Sandrine says. ‘As for many Māori people who experience homelessness, Daniel’s life is a complex story of abuse during his childhood, exposure to death and resulting addiction, all of which has pushed Daniel to escape his whānau and resulted in dislocated relationships with his community. For many Māori people who are on the streets, trauma events do not stand in isolation as solely a personal affliction but are a reflection of the trauma of colonisation that has passed down along generations.’
‘For many Māori people who are on the streets, trauma events do not stand in isolation as solely a personal affliction but are a reflection of the trauma of colonisation that has passed down along generations.’
- Sandrine Charvin-Fabre.
Attempts to reconnect Daniel with his whānau had most often failed, making him feel more isolated, distressed and hurt. He also missed the support of participating in the everyday life on his marae, preparing meals for his community in the large kitchen.
‘At this point, the loss of meaningful connections, of social, cultural and spiritual resources, from Daniel’s community, the loss of roles and participation with his whānau and community’s life, the loss of personal worth, the shame, and the anticipation of a loss of future genealogical connections was collapsing into an extreme form of devastation.
‘“What would you like?” I responded simply after a long silence, holding his hand with mine.’
Honouring Daniel’s story
‘Over the following weeks, Daniel shared with me the best and darkest parts of his story. His regrets and hopes, his love for his whānau, and his aspirations for his life, end of life, and after-death care. He often told me how our conversation was “healthy.” However, I felt that, in the face of death, I would be unable to honour Daniel properly,’ Sandrine writes.
Sandrine felt that, if Daniel became incapacitated and unable to speak for himself, she could be in a position as friend and doctor to advocate for him, but would not be able to offer appropriate cultural support.
‘I would be able to care for some of his emotional and physical concerns and be present for him, but I would not be able to provide him with the appropriate cultural and spiritual support to transition to the other side of the ārai (veil).
‘My friend also shared with me the intense turmoil that his wishes for his final arrangements, his tangihanga (funeral rituals) and his burial at his urupā (ancestral cemetery) would be likely to remain unknown by his whānau.’
Advance care planning is rarely discussed with the homeless community
Advance care planning is the process of thinking and talking about your values, goals and preferences for health care and end-of-life care.
You can read more about it here: What is advance care planning? (myACP.org.nz)
It is something that is rarely discussed with the homeless community because of a belief that concerns around death and dying are not among survival priorities like seeking shelter and food, Sandrine says.
However, she believes advance care planning could act as a safeguard against the stigma and discrimination experienced by homeless people within the mainstream health care system.
‘Perhaps [advance care planning] would open a space of listening, consideration and respect for people who are likely to be isolated, or unsupported at the end of life, denigrated of their agency and rights, and blamed for their own misfortune.’
Sandrine says that, although still marginal, research that has invited homeless people to engage in advance care planning conversations has been welcomed, with high rates of plan completion and surrogate decision-maker designation.
‘Homeless people have expressed feeling less worried about their end-of-life and after-life care, compared to being left to die alone on the streets or in hospital, uncertain if their preferences, beliefs, and wishes would be heard and honoured.’
Research also reports that when the advance care planning process has been engaged through shelter-based interventions and in primary care settings, homeless people are more likely to have their care preferences respected during subsequent hospitalisations.
‘Homeless people have expressed feeling less worried about their end-of-life and after-life care, compared to being left to die alone on the streets or in hospital, uncertain if their preferences, beliefs, and wishes would be heard and honoured.’
- Sandrine Charvin-Fabre.
Te whare tapa whā
Kaupapa Māori end-of-life researcher, and founding member of Tō tātou Reo advance care planning’s Mana Enhancing Design Partnership rōpū (group) Tess Moeke-Maxwell provided Sandrine with cultural advice for her research.
‘At the beginning of my research, Tess … suggested that I turn my attention to advance care planning and homelessness in relation to the unique significance of death and dying to Māori and the Māori holistic approach of life, health and wellbeing,’ Sandrine said.
Tess Moeke-Maxwell provided cultural advice on this research.
‘Te whare tapa whā is a model that uses the metaphor of a whare (house) to conceptualise Māori views on health and wellbeing. Rooted in the land, the four pillars of the house stand in dynamic connection, harmony and balance, each pillar representing a dimension of health: the physical (tinana), the emotional and psychological (hinengaro), the social and familial (whānau) and the spiritual (wairua).
Māori health models – Te Whare Tapa Whā (health.govt.nz)
‘Introduced by Tess, I had the opportunity to meet up with Veda (not her real name), a Māori woman who manages the advance care planning project regionally. Veda generously shared with me her experience, expertise and views on advance care planning. Importantly she pointed my attention to a storytelling approach of the advance care planning conversation that interweaves past, present and future.
‘Within the four pillars of the whare, protected and guided by the wairua of his tūpuna (ancestors), a relational space of care, wellbeing and peace may exist for Daniel to sow the seeds of his story into his land for them to grow, flourish and join the infinite through whakapapa (genealogical connections) as a home promise.’
A kind of spiritual testimony
With her conversations with Veda in mind, Sandrine suggested Daniel think about the opportunity to engage with an ‘advance care planning storytelling conversation’.
‘Daniel and I sit on the terrace of the coffee shop where we often meet to share a breakfast, as we converse and pursue our writing sessions. This is our weekly routine. The manager of the café does not look at us with suspicion and Daniel feels safe and comfortable here.
‘He has taken the time to examine Whenua ki te whenua - an advance care planning guide for whānau [myACP.org.nz] and the advance care planning guidelines, asked me questions on legal issues, and then said, with a large smile illuminating his face, “I want to do that, and I want to complete the [advance care planning] book.”
‘For Daniel, first and foremost, advance care planning is about telling his story, with his own words, free of any forms of constraints... and expressing his wishes for his after-death care. For him it is a kind of spiritual testimony.’
Weaving a kete of meaning
It took around 8 weeks for Sandrine and Daniel to go through the advance care planning journey.
‘Discussion about future health care treatment and choices are of less importance to Daniel. He is very clear on what he would and would not want in specific medical circumstances. As a friend and doctor, I have accepted Daniel’s request to be included in discussions with heath providers in the event he is unable to make decisions for himself and is not supported by his loved ones. He is reassured. It is not at the level of physical care, at least, not only at this level, that Daniel locates his priorities and aspirations for his life and end of life.
‘At his own pace, Daniel finds his way… I take notes for him in a large notebook. Then, at home, I put his words into sentences. Daniel reads again, rewords, corrects, erases, or adds something of importance he had thought about… some days are more peaceful than others. He goes back in his past, stops at the intersections, the crossroads of his life, reflects on the tracks he walked on, and on the tracks he imagines for his future, weaving his own kete (basket) of meaning across the ocean of time.’
Reconnecting with whānau
‘Daniel is not at our usual meeting spot. I drive to the coffee shop, hoping he would be there. I do not have very good sight from that distance, but I recognise his silhouette. “Sorry, I couldn’t wait. Do you have the paper?” he asks me, excited and anxious at the same time. Our coffees and sausages will wait.
‘Daniel reads the final version of his advance care plan, his story that I printed last night, in silence, and focused. Still silent he signs at the bottom of the document and turns to face me. “Now I can go see my whānau and share it with them.”
‘His voice is peaceful and to my eye a profound joy illuminates him. My heart leaps. One day I had asked Daniel what wairua meant for him, apart from the simple Māori–English translation of spirit. “Wairua is a miracle, a world of infinite possibilities,” he replied.
‘Wairua is a miracle, a world of infinite possibilities.’
- Daniel
Daniel is enrolled with a general practitioner, with whom he only has a minimal relationship. Despite that, he asked Sandrine to provide them with a copy of his advance care plan to be recorded in the health information system.
‘For Daniel, it was a kind of insurance that his choices and wishes will be respected at best,’ she said.
At the time Daniel completed his advance care plan, he had moved from the solitude of the boarding house to transitional housing offering a more supportive environment and a Māori social worker with whom he had built a trusting relationship. The three had several hui together.
With the social worker’s support, Daniel engaged in a process of restoring connections with his whānau – a fragile and time-demanding process, Sandrine said.
‘According to his wishes, he has shared with his family his advance care plan that contains his most sacred aspirations, not only for his end of life and afterlife but also for his remaining time of life. He has created a place where he could tell of his hopes to find his place back amongst his whānau; a place for him to be included into a narrative that extends and ties with the living to both sides of the grave through genealogical connections, to be recalled and honoured as ancestor and be buried with sacredness in his urupā.’
We must ask these questions
‘How many Māori people like Daniel live on the streets, in their cars, in garages, in the anticipation of death as an all-encompassing devastation because people believe, or live, as if they were already excommunicated from the relational world?’ Sandrine asks.
‘How many people like Daniel feel themselves whakamā, which means feeling withdrawn, self-alienated at a physical, psychological and spiritual level, from the capacity to connect with others to the point that mauri (energetic life force) dissipates and disperses away from them?
‘How do people who experience homelessness cope or not cope with the prospect of dying, alienated from whānau, set apart from a cultural framework of care that fortifies, nourishes, provides meaning and a sense of belonging and of spiritual fulfilment and continuity at the end of life?
‘We cannot answer… because we simply do not know. But we must ask these questions.’
Collaboration is needed
Sandrine believes that, in following a storytelling approach, advance care planning could restore meaning and lead towards healing for Māori homeless people who experience disruptions in their emotional, familial and spiritual connections.
‘Collaboration is needed. In the context of homelessness, we recommend advance care planning be a Māori place, in the first instance, led by respected Māori kaumātua (elders) community members or health professionals, and operating within the context of a Māori cultural framework. Māori healers, rongoā practitioners (traditional practitioners) and kaimahi Māori (Māori community workers) could have an important role to play in bridging the gap for Māori who experience homelessness.’
From having nowhere to stand, relate and belong to, advance care planning offered Daniel and his whānau a pathway to heal.
From having nowhere to stand, relate and belong to, advance care planning offered Daniel and his whānau a pathway to heal.
In Daniel’s own words
‘Sometimes, I recite my pepeha [cultural process Māori use to introduce themselves in relation to genealogical relationships and connections to people and place]. I relate to land features; mountains, my iwi, my hapū, my wharenui [ancestral meeting house] and all these things give me incredible strength and they are who I draw life from. They are my friends, te ao Māori [the Māori world], hence I am never alone…
This is a whakatauākī [proverb]
He kotuku rerenga tahi
It is a bird of single flight seldom seen – speak once and never been forgotten.
Our people, those who are on the streets, must believe in themselves and cherish te reo Māori. It is a treasure language, te wairua tapu. It’s gonna bring them home.’
‘Our people, those who are on the streets, must believe in themselves and cherish te reo Māori. It is a treasure language, te wairua tapu. It’s gonna bring them home.’
- Daniel
About the storytellers
Sandrine Charvin-Fabre is a migrant researcher of Basque ethnicity. She worked in her home country as a doctor in palliative care with marginalised populations. Sandrine and Daniel fully shared this story’s construction, making them narrators together. The quotes in this piece are from Sandrine, but Daniel’s voice is present throughout.
Tess Moeke-Maxwell is a kaupapa Māori end-of-life researcher and founding member of Tō tātou Reo advance care planning’s Mana Enhancing Design Partnership rōpū (group). She provided cultural advice on this research.
Ottilie Stolte is a health researcher who has researched poverty and inequalities alongside Māori colleagues for 15 years. Ross Lawrenson is a specialist public health physician, a former general practitioner and professor of population health who has been researching inequities in cancer for many years. Both he and Ottille supervise Sandrine’s doctoral work.
We thank all involved, especially Daniel, for sharing this pūrākau (story) with us.
* Charvin-Fabre S, Moeke-Maxwell T, Stolte O, et al. 2022. Can advance care planning (ACP) be a relational healing place for indigenous homeless people in Aotearoa New Zealand? Mortality. DOI: 10.1080/13576275.2022.2156277.