A qualitative study of families’ experiences
Dementia is a common disease in old age and most of the patients with late-stage dementia both reside and die in nursing homes. One of the challenges is to make sure that the treatment provided is in accordance with residents’ and families’ preferences. Therefore communication and decision-making about goals of care are essential.
This study was embedded in a cluster randomised clinical trial testing an intervention consisting of a video decision-aid about goals of care. The video was viewed by family members of nursing home residents with dementia and then followed by the families’ participation in a care plan discussion with nursing home staff. The purpose of the main study was to determine the effects of the goals of care approach on the quality of communication and care for residents with advanced dementia.
The aim of this sub-study was to understand family members’ experiences using goals of care decision-making in advance of their relatives’ death from advanced dementia.
The study consisted of post-death semi-structured interviews with family decision-makers from the intervention sites in the main study. Family decision-makers (the resident’s legally authorised representative) of residents who died during the trial (27) were invited to participate in the sub-study, of which 16 (59%) agreed. The interviews were conducted one to four months after the resident’s death. The interviews were analysed using an inductive, descriptive qualitative approach.
The results showed that trust in the nursing home staff highly influenced how the family decision-makers experienced the goals of care decision-making.
The results showed that trust in the nursing home staff highly influenced how the family decision-makers experienced the goals of care decision-making. Eight family members who expressed trust had positive experiences with the goals of care discussions and decision-making. Three themes were present for this group: the end-of-life experience was positive, goals of care were dynamic, and formal goals of care discussions were not always necessary. Seven family members described an absence of trust, and for those the three main themes were: the end-of- life experience was negative, goals of care were ignored by staff, and goals of care discussions created confusion for family decision makers. One family member had a positive experience of goals of care decisions despite lack of trust in the staff.
The study showed that for family decision-makers of nursing home residents dying of dementia, expressions of trust were strongly related to perceptions of decision-making about goals of care. The findings indicate that goals of care discussions per se may be neither effective nor helpful for most family members if trust between family decision-makers and nursing home staff is not present.
This article review was submitted by EJRC member Hanne Irene Jensen, PhD, MHSc, RN (Department of Anaesthesiology and Intensive Care, Vejle and Middelfart Hospitals, Beriderbakken, Denmark) on behalf of the ESICM Ethics Section.
Rosemond et al. Goals of Care or Goals of trust? How family members perceive Goals for Dying Nursing Home Residents. Journal of Palliative Medicine 2017;20:360-5.