The Encounter Between Informal and Professional Care at the End of Life

Abstract

The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.

Who should make the decision on the use of GPS for people with dementia?

“…This result suggests that the entire sample believes that the spouses or most involved family caregivers of people with dementia know best what the real needs of these persons are, and what care is the best, or least harmful, for them. This finding is congruent with those of James (2009) showing family caregivers' actions as protecting their loved one's interests. Yet, the spouses' age and often poor health raises some doubts regarding the spouses' capacity to make difficult decisions in end-oflife issues (Lautrette et al, 2006).…”

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“…The patient has the primary understanding about the mood of unhomelikeness which is the actual matter of the encounter (Svenaeus, 2000a). In a study about encounters between formal and informal care at the end of life, James, Andershed, and Ternestedt (2009) suggested that informal care performed by loved ones can be understood as a kind of practical knowledge, linked to Aristotle's phronesis, that is complementary to medical expertise. In the context of our study, the participants' lived experiences of IBS can be translated to practical knowledge.…”

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