Exploring the process of shared decision-making between patients, families and healthcare professionals at the end-of-life in a community context: a case-study approach

Abstract

Aims and objectives: The study aimed to explore the process of shared decision making at the end-of-life in the community context; focusing on place of care decisions between patients, families and multi-disciplinary healthcare professionals delivering care in the home. Objectives were to explore the process of shared decisions, understand the experience of participants in the process and identify factors which influence the process.

Method: A qualitative, multiple case-study approach was adopted (Stake, 2006).This was underpinned by a conceptual map of shared decision-making in palliative care (Belanger et al, 2011). Data collection was conducted in two phases. In phase one, nine cases were studied (n=9). A purposive sample of patients at the end-of-life were recruited with their nominated family carers and community healthcare professionals who were involved in decision-making about place of care (n=45participants). Data collection methods included non-participant observation of decisional interactions in the home (n=13); face to face interviews with all participants (n=65) and review of professional case notes (n=31). A process of thematic multiple case-study analysis (Stake, 2006), led to the development of a second phase to further explore the context of professional practice. The second phase involved eleven (n=11) professional focus groups. These included GPs, community nurses, specialist palliative care nurses, AHPs professionals and social workers (n-44 participants). Focus groups data were analysed thematically.

Findings: Shared decision-making (SDM), is a complex and on-going process in the home context, influenced by multiple factors related to the context of illness and care delivery and the decisional roles adopted by all participants. These can act as facilitators or barriers to the process. When it occurs, SDM is led by the patient and family are central to its achievement as the patients’ condition deteriorates at the end-of-life. SDM requires all participants to be pro-active in end-of-life communication, information exchange and planning activity, but in contrast to policy and guidance, professional and organisational barriers to its implementation exist. These barriers impact on health care professionals’ shared decisional processes with patients and families at the end-of-life.

Conclusion: SDM is one decision-making approach which is useful for decisions such as place of care decisions at the end-of-life. However, it can only operate in the complex context of the home, with the full participation of patients, families and healthcare professionals. More needs to be understood about the process of SDM in this context and about the roles and experience of family and multi-disciplinary HCPs within that process.

Date of Award	May 2015
Original language	English
Supervisor	Sonja McIlfatrick (Supervisor) & Felicity Hasson (Supervisor)