The meaning of advance directives in the lives of people with advanced long term conditions.
PhD thesis, University of Nottingham.
Socio demographic and epidemiological change, together with the availability of medical technology, may prolong the process of dying. Antecedent control over end-of-life care (EoLC) may be sought by making an advance directive (AD). This option has been legalised in some countries including Israel, the setting of this study. In Israel, EoLC is set in the context of complex and interrelated religious and state regulations.
To examine from a variety of perspectives, the experiences, beliefs and practices associated with the use of ADs in Israel, with a view to understand their role in the lives of patients with palliative care needs towards the EoL.
The study was conducted in 2011, using mixed methods in two phases. The first phase involved qualitative methods to construct patient-centred case studies. Twenty seven participants (patients, relatives, physicians and a Rabbi) were interviewed. In phase 2, a survey examined health care providers’ (HCP) knowledge, attitudes and experiences regarding ADs. The final sample (n=72) of HCPs comprised: 57 nurses (79%), 8 physicians (11%), and 7 social workers (10%).
This study promotes the understanding that ADs reflect a multitude of steps that are distinct but linked, as in a ‘relay’. The findings demonstrate complexity: patients’ ADs reflected their desire for autonomy but their decisions were often influenced by their relationships. In turn, relatives feared making mistakes in decision-making, while also feeling obligated to enact the patient’s wishes. Physicians reported finding it difficult to forgo active treatments and found communication with relatives about patients’ ADs challenging. The survey showed that while HCPs had typically positive attitudes towards, and some experience with ADs, they also perceived some barriers towards their use.
ADs seem as an imperfect solution to the complexities surrounding EoLC planning, and additional solutions than those available today may be required.
Thesis (University of Nottingham only)
||W Medicine and related subjects (NLM Classification) > W Health professions
||UK Campuses > Faculty of Medicine and Health Sciences > School of Health Sciences
UK Campuses > Faculty of Medicine and Health Sciences > School of Nursing
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