Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care

Abstract

ObjectiveDependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.MethodThis cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.ResultQoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.Significance of resultsBroad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

Older people’s perceived autonomy in residential care: An integrative review

“…All of the studies sought the views of older people: 11 also spoke to professionals 20 , 24 , 25 , 31 , 33 , 34 , 36 , 45 , 46 , 56 , 62 and 11 studies also included feedback from relatives. 30 31 , 33 , 34 , 46 , 48 , 49 , 51 , 56 , 62 , 65 The studies used concepts such as autonomy (n = 34), self-determination (n = 14), free will (n = 1) and freedom (n = 1). Most of the studies were conducted in Europe (n = 30), with seven in North America, seven in Asia and one in Australia.…”

“… 34 Some older people involved their relatives in decision-making and shared the burden of decision-making, especially when their capacity to make own choices declined. 31 , 33 , 34 , 44 , 52 Other older people preferred to leave any decisions to their relatives, 52 , 65 but they expected them to promote and protect their rights. 32 , 54 When relatives and friends supported their perceived autonomy, this correlated with positive well-being, vitality, satisfaction with their lives 22 and decreased depression.…”

“… 33 Some older people said that their wishes were ignored, 57 but that professionals rarely made decisions that were totally against their will. 29 , 65 Some of the older people had made advanced directives and care plans to ensure that their requests were respected. 31 , 33 However, others said that advance directives were useless, because, at the end of the day, professionals would decide whether they followed them.…”

Use, usability, and impact of a card-based conversation tool to support communication about end-of-life preferences in residential elder care – a qualitative study of staff experiences

“…Lack of communication about EOL issues in RCHs has been shown to negatively affect perceptions of care quality by e.g., reducing trust in staff’s knowledge about residents’ care preferences [ 10 ], whereas repeated open dialogue can allow time for residents and relatives to process information and more carefully consider care goals [ 11 ]. However, EOL conversations between staff, residents and/or relatives are infrequent in the RCH context [ 12 ], with identified barriers including insufficient skills, experience, and confidence among staff [ 13 , 14 ].…”

Use, Usability, And Impact of A Tool To Support Conversations About End-of-Life Preferences In Residential Elder Care – A Qualitative Study of Staff Experiences

“…Yet, considerable variability in ACP delivery and scope of EOL conversations limits strong conclusions regarding its impact on EOL care [8], particularly for older people [9].Lack of communication about EOL issues in RCHs has been shown to negatively affect perceptions of care quality by e.g. reducing trust in staff's knowledge about residents' care preferences [10], whereas repeated open dialogue can allow time for residents and relatives to process information and more carefully consider care goals [11]. However, EOL conversations between staff, residents and/or relatives are infrequent in the RCH context [12], with identi ed barriers including insu cient skills, experience, and con dence among RCH staff [13,14].…”