Chair: Dr Denise Marshall
Provocations on privilege in palliative care: Are we meeting out core mandate?
Prof. Kelli Stajduhar
While increasingly recognized as a human right, access to palliative care is still not a given. Indeed, access to the services involved, from medical to social to psychological to spiritual, is uneven across the Global North. Even though palliative care as a concept seems to be unanimously supported, that is what it remains: an idea that only becomes reality for fewer than half of the people who might benefit. Those who do benefit from palliative care services tend to also benefit from high socio-economic status and family support, as opposed to those people facing the end-of-life who also face inequities like homelessness, poverty, isolation, racism, and stigma.
The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In this presentation I will argue that our ongoing desire to legitimize our field to promote “palliative care for all” has led to the creation of “blind spots” that have allowed us to privilege some in need of care, and render ‘others’ invisible. In doing so, we run the risk of dismantling (albeit unintentionally) the very root structure from which palliative care originated.
Designing the compassionate city
For most of us, most of the time, our built and social surroundings frame the experiences that we enjoy, endure or miss out on. This in no small matter. Just like our food diet, our experience diet – our day to day mix of the things we do, see hear, feel, are engaged in, are moved by or stimulated by- plays a critical role in determining our quality of life. A healthy experience diet helps us meet our needs, find a degree of happiness and fulfil our potential. It does this through offering opportunities to engage in our community, be inspired, delighted and have fun. It offers the uplift of smiles and kind words, the esteem of being listened too or your work admired. It provides chances to leave a positive legacy. A healthy, balanced experience diet nurtures physical, cognitive and emotional health, builds resilience and fosters confidence and self-esteem.
An unhealthy experience diet consigns people to lives diminished in quality, leaves potential unfulfilled and hastens decline.
My research suggests that the poorest, the aged, the very young, the most marginalised and infirm in our community are least well equipped to access or enjoy a healthy experience diet. My personal and professional experience and my research in this field suggest that those in palliative care (and their families), often fit squarely into this disadvantaged category. For many the final stages of their lives is lived out as a slow, inevitable dimming of their flame. A time of increasing dependence and decreasing self-determination, a prelude to death.
So what can be done about this? I am not an expert in palliative care but I hope I can demonstrate how our surroundings can play a part in helping those receiving palliative care, the people around them and those who have dedicated their lives to working in this field. Our surroundings can do this by embedding invitations to participate in life affirming, nurturing behaviours that ensure the final chapter in the story of a person’s life is a time when their flame can shine brightly.
The presentation will redefine what good urban design is. It outlines what we can all do, designers and non-designers alike to create urban places that help all people live meaningful, engaged lives of dignity.
This presentation draws from my books “Designing to Heal” (CSIRO) and “Designing the Compassionate City” (Routledge).