A Strengths Perspective on Caregiving at the End-of-life

Abstract

The adverse effects of caregiving provided by family members, partners, and friends for people dying at home from a life-limiting illness have been extensively documented in the palliative care research literature, yet minimal attention has been directed towards the strengths of informal carers and their subsequent growth and development. Using in-depth interviews from a purposive sample of informal carers (n = 28), this paper reports empirical evidence from a subset of data analysed for an Australian qualitative study, illuminating a range of strengths frequently obscured beneath the emotionallabour work of caregiving and further sequestrated by the chaos of grief. A strengths perspective on caregiving at end-of-life is important because it helps to inform a reconstruction of caring and dying to include dimensions that relate to the growth of human potential and capacity, as well as enabling collaborative partnerships between workers and informal carers at the end-of-life.

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

“…Timekeeping was an important component of the process because patients were typically advised to ingest the medication quickly so as to avoid losing consciousness before finishing the lethal dose. (Buchbinder et al 2018, p4) “So I remember us sitting down and then dividing the tasks, like, father doing the shopping, and my sister would do this, and I’d do that....” (Strang & Koop, p.110) Emotion focused Caregiving as an opportunity to show love, be rewarded with closeness; frustration, sadness, or anticipatory grieving [ 27 , 32 , 33 , 36 , 37 , 42 , 44 , 45 , 47 , 51 , 54 – 58 , 60 , 61 , 63 ] Overall focus on fulfilling patient’s desire to avoid prolonged suffering; where hastened death was illegal or quasi-legal, moral distress in trying to reconcile patients’ request for support with own ambivalence or discomfort. In Switzerland, carrying the burden of secrecy after death [ 16 , 19 , 20 ].…”

“…Death allows patient to escape suffering. Escalating need for care results in more clinical resources [ 26 , 36 – 38 , 44 , 46 , 48 , 51 , 53 – 57 , 60 – 63 , 65 ]. Clinicians who would not facilitate hastened death but were supportive in other ways; in retrospect, hastened death seen as right choice [ 15 , 16 , 18 , 19 , 70 ] “I mean it’s so wonderful that you can give someone yourself.…”

“…He told me what I might expect and… That was invaluable.” (Mohammed et al p1232) Structure (social support, information, respite) Lack of support from friends and family, and lack of information about what to expect in caregiving were closely related to caregiver isolation and exhaustion. Caregivers acknowledged the importance of respite, but more often in retrospect after death [ 26 , 28 , 29 , 32 – 42 , 44 , 46 – 51 , 54 – 62 , 64 , 66 ]. “In retrospect .…”

Carers’ Experiences of End‐of‐Life Care: A Scoping Review and Application of Personal Construct Psychology

“…Throughout the uncertainty of providing end‐of‐life care, carers regularly faced experiences that were beyond familiar frames of reference and they often felt helpless and trapped in their roles (Collins et al, ; Hughes, ; Lewis, ; Stajduhar et al, ). Alongside feeling trapped, some carers looked towards the impending death of care recipients as a necessary event that must occur in order for them to once again have their own life (Lewis, ).…”

“…A consideration of the personal implications of providing end‐of‐life care most clearly demonstrates how PCP can provide a coherent framework for understanding the challenges carers face. In particular, the reviewed literature suggests that carers encounter experiences that are beyond anything familiar as care recipients approach end‐of‐life (Hughes, ; Lewis, ). Due to the unknown future they face, literature has suggested that carers develop new identities (e.g., the “carer persona”—Broady, ) to manage the unexpected and to protect themselves from any fear of what is to come (Carlander et al, ).…”