SAANZ Conference 2024

Chair: Bruce Cohen

Kevin Dew (presenter)
Non-presenting authors: Kerry Chamberlain, Richard Egan, Liz Dennett, Chris Cunningham

“This archaic medical system we currently live in, needs to stop living in a tunnel”: Challenges of cancer survivorship in Aotearoa New Zealand

Long term cancer survival is increasingly prevalent, and this raises survivorship issues, not just about the quantity of time but also the quality of life. In this paper we consider a range of survivorship issues in what can be an unwelcoming environment for survivors. From 2020 to 2022, 81 interviews were conducted with Māori and non-Māori throughout Aotearoa New Zealand identified as exceptional cancer survivors, living with a diagnosis of cancer from four to 37 years. This presentation will cover concerns about unnecessary delays in diagnosis, arbitrary levels of assistance, differential treatments, private and public healthcare, and the incommensurability of worlds. Findings raise concerns about the potential for the healthcare system to foster iniquitous outcomes and marginalise those who explore alternative understandings of cancer and its treatment. To better support survivorship the healthcare system needs to both be more expansive in its approach, improve its performance in the capacity to detect cancer signals particularly in patients with a prior history of disease, and take a more tailored approach to cancer survivorship.

Ian Dashfield
Pain, the brain, and the radical possibilities of the embodied-constructive turn

Healthcare is haunted by a tension between the private nature of pain and the universalist assumptions underpinning standardisation and regulation. These ‘traditional biomedical’ distinctions drawn between mental and physical health are being challenged by the increasing authority of neuroscience. One dramatic example is in chronic pain management, where the neuroscientific view is that pain is a cognitively complex representation of expected danger, rather than a direct perception of bodily damage. This view suggests psycho-social trauma and inequality are not circuitously correlated with higher rates of chronic pain, and instead directly ‘train the brain’ to expect a painful world. Combined with concerns regarding the validity and social harm of surgical and pharmaceutical interventions, this has led to pedagogy and psychology being integrated into ‘best practice’ pain management.
In Aotearoa — where 21% of adults experience persistent pain — this ‘truly bio-psycho-social’ approach has been endorsed by a 2022 report commissioned by Te Whatu Ora, as they (then) aimed to introduce a new model of chronic pain management. This talk charts the current case and possible trajectory of this neuro-constructive turn, through which sensation, affect, and socio-epistemic history, context, and norms are understood as entangled loops of co-construction.

Chair: Simon Clay

Madiha Ehsan
Exploring Relational Autonomy in the context of Pakistani Muslim migrants envisioning their End-of-Life Phase in New Zealand

The increase in international migration in the era of globalization has resulted in changing social and global conditions, which have implications for migrants' end-of-life choices. Over the years, there has been a noticeable growth in international migrants in New Zealand. In 2024, New Zealand has experienced significant international migration. As of May 2024, there were an estimated 221,400 migrant arrivals, marking a 13 percent increase compared to the previous year. End-of-life care in line with the culture of the migrants is a challenging task for medical professionals in New Zealand and around the world. The social science approach to end-of-life care places a strong emphasis on the value of considering the social environment of dying and death. This perspective highlights that end-of-life care is not a universal, unproblematic concept but a multifaceted issue influenced by cultural, social, and individual factors. It highlights that end-of-life care, in addition to the medical aspect, also contains social, cultural, and existential components. This broader view recognizes that death is not merely a physical event but also a complex interplay of human relationships, existential concerns, social support, and cultural beliefs. The thesis will explore the interplay between individual experiences, societal norms, and institutional practices concerning end-of-life planning within the Pakistani Muslim migrant population in New Zealand.

The study seeks to develop a deeper understanding of how cultural and religious beliefs may influence attitudes toward death and dying within the first-generation Pakistani Muslim migrant community in New Zealand. In medicine, health sciences and sociology, relational autonomy in end-of-life care is a theoretical approach that has gained wide attention. It underlines how crucial it is to view autonomy as the result of connections and teamwork rather than an autonomous quality. Relational autonomy is especially applicable in advance care planning, shared decision-making, and palliative care, where relationships are critical to decision-making. The thesis examines the theoretical concept of relational autonomy in end-of-life care. It applies a constructive lens to in-depth interviews with first-generation Pakistani migrants in New Zealand's end-of-life hopes, beliefs, and expectations. Bringing together an analysis of relational autonomy and how Pakistani migrants in New Zealand envisage end-of-life is taken as a means to address those intricacies in the context of intersectional challenges.

Chloe Coombe
End of Life Concerns during the HIV and AIDS Epidemic in Aotearoa, 1980-1999

This paper presents the preliminary findings of my PhD research into the intersection of sexuality, public health and end-of-life concerns during the HIV and AIDS epidemic in Aotearoa. In an era before effective treatments, many people were confronted with the reality of premature death, while their friends and families faced the difficulties of grieving in a social climate marked by silence, stigma and often hostility. Drawing on a combination of archival research and initial interviews with survivors, caregivers, and community leaders, in this paper I will address the ways in which personal end-of-life needs were understood and managed during the epidemic. My broader project also examines the development of commemorative practices, and I will also offer early insights into the sorts of innovations that emerged to navigate the collective experience of grief and mourning during the epidemic.

Jessica Young, Antonia Lyons, Kevin Dew,  Richard Egan
Constructing the right time: Patients, families and providers’ experiences of assisted dying decision-making.

For terminally ill people who are approved for assisted dying (AD), they will need to select a time and date for their death. We recruited triads of patients, relatives, and AD doctors. We longitudinally interviewed seven people with cancer applying for AD, ten relatives, and six AD doctors pertaining to ten assisted deaths in 44 interviews. We conducted a thematic analysis of the interview transcripts.
We identified four phases in participants’ experiences of picking and anticipating a date for AD: deciding how and when to draw a line in the sand; the final countdown; a date with death; and the right time. Picking a date was an embodied, relational, situational decision that is made to balance situations, people, and regulatory systems.
Existentially, socially, and clinically difficult decisions about a date for death are made (and re-made) by patients to balance time left and the quality of that time. Time is a silent crucial factor in AD decision-making. The social structures and meanings of time influence the anticipation of the date of death. Having to choose a date contrives the notion of ‘the right time’ for death. Time is reoriented from clock time to include embodied and event time.