What Matters
Life Stories for End of Life
G.M. Buckley (TU Delft - Industrial Design Engineering)
P.M.A. Desmet – Mentor (TU Delft - Industrial Design Engineering)
D. Özkaramanlı – Mentor (TU Delft - Industrial Design Engineering)
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Abstract
Facing terminality is a traumatic experience, one which entails a reorientation of one’s entire meaning system. Hospice care is an approach which aims to provide comfort in the face of this turmoil, through the pursuit and provision of quality of life and a good death, facilitated through the alignment of care decisions and resources with patient’s personal values.
For incurable head and neck cancer patients, the pursuit of ‘a good death’ is challenged as a result of their particularly short life expectancy – five months. This leaves patients with limited time to reorient, reassess, and reflect on what their values and priorities are in the unexpected face of death. Further complicating these efforts is the population’s elderly male demographic, wherein the influence of gender stigmas, taboos and cultural norms presents a cohort who are adverse to emotional vulnerability and expression.
Through an extensive literature review, in concert with secondary findings across forums, blogs, testimonies and conferences, the context of HNC hospice was mapped across three dimensions – the environment, the person, and the cognitive processes. Through delineation of findings, a solution space was identified and mapped, and an exploratory cycle undertaken in order to answer the core tension – discovering the fundamental meanings of the emotionally avoidant.
This project presents a theoretically grounded framework, which utilises the lens of legacy and life stories to act as a mediating interface between patients and clinicians, surfacing fundamental meanings and facilitating the alignment of care resources towards QoL through a shared understanding. In tandem, it answers patients desire to prevent suffering in loved ones after their death through the creation of a legacy document, which they can bequeath and which will provide comfort and a preserved sense of relatedness even after death.
This framework is presented in concert with a set of protocol considerations which dictate application and embodiment considerations for the frameworks successful deployment, including both within, and external to, the HNC domain, representing opportunities for its deployment in hospice care across the terminally ill, as well as its applicability in trajectories pre-hospice.