The meaning of everything: communication at the end of life

Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice

“…Advance care planning and choice about places of care and death are key factors (Meeker, McGinley, & Jezewski, 2019, Roscoe and Tullis, 2015, Fitzsimons et al, 2007 .…”

“…However, when I raised this with ward staff, they appeared surprised and questioned why I thought this was necessary and "was I giving up on my father". This is the reverse to the scenario set out by Roscoe and Tullis (2015) where patients and families may wish 'everything' to be done; anything less may be perceived as the staff giving up. It appears there are different perspectives at play in the scenario I outline.…”

Traversing temporalities at end-of-life: Mobilizing narratives with imagination and aesthetic sensibilities

“…Those whose lives and families have been cared for within the hospice approach, think of it as caregiving in the finest tradition: care that is both competent and compassionate. 8 To truly understand hospice, and its value, requires that we accept the reality of death, a reality that we have been trained to ignore because of the dis-ease we feel in communicating about our mortality 10 and the discomfort often experienced by the chasms that lifelimiting illness imposes in relationships. 11 Western culture's delusional misunderstanding that medicine is an infallible science fuels social hesitance to accept hospice care as a legitimate and necessary approach to caring for the holistic pain experienced by dying persons and those who love them.…”

“…In fact, choosing hospice is often regarded as frightening, socially unacceptable, or as giving up, encouraging people instead to do everything to avoid death without serious consideration of the consequences therein. 10 In 1967, after nearly two decades of witnessing patients endure these burdensome consequences and learning from the stories they shared, Cicely Saunders founded the first hospice, St. Christopher's, in London; the roots of its inception characterize hospice as a narratively-inspired form of care. The hospice movement was (and arguably, still is) considered to be a revolutionary approach to care because it challenges…”