The Liminal and the Parallax: Living and Dying at the End of Life.

Transitions to palliative care can involve a shift in philosophy from life-prolonging to life-enhancing care. People living with a life-limiting illness will often receive palliative care through specialist outpatient clinics, while also being cared for by another medical specialty. Experiences of this point of care have been described as being liminal in character, that is, somewhere between living and dying. Drawing on experiences of illness and care taken from semistructured interviews with 30 palliative care outpatients in Australia, we found that this phase was frequently understood as concurrently living and dying. We suggest that this is a "parallax experience" involving narratives of a coherent linear self that is able to understand both realities, in a way that acknowledges the benefits of being multiple. These findings have significant implications for the ways in which palliative care is understood and how the self and subjectivity might be conceptualized at the end of life.

Enacting Varieties of Subjectivity Through Practices of Care: A Story of Living With Motor Neuron Disease.

People living with disability or chronic illness often use practices of care to construct a version of life they are satisfied with. Drawing from a narrative-based study with people living with motor neuron disease (MND), I show how one couple tried to be recognized as active agents in their life, although oscillating between positions of less and more power. Through an examination of the practices of care that the couple enacted, I illustrate how their positioning in relation to practices of care helped them create meaning in their life. In their efforts to create a way of living they were satisfied with, they engaged in negotiations between varieties of subjectivity. Their subjectivity was not static but was constructed as they shared power to carry out everyday self-care activities. The findings also underline the importance for health care practices of exploring the experiential knowledge of people living with MND.