Abstract
AimTo scope systematically and collate qualitative studies on family experience and need during end of life care in intensive care, from the perspective of family members.DesignScoping review of qualitative research.MethodsStandardized processes of study identification, data extraction and data synthesis were used. Multiple bibliographic databases were accessed during 2011 and updated in 2013.ResultsFrom an initial 876 references, 16 studies were identified for inclusion. These were predominantly single site, North American studies that explored issues relating to the temporal stages in the end of life trajectory and the requirement for information and emotional support at end of life. With a strong focus on family need and experience during the transition from active treatment to end of life care, more work is required to understand how doctors and nurses can support families from treatment withdrawal through to death.
Highlights
There has been increasing attention placed on improving end of life care as evidenced by the many international health initiatives (National Gold Standard Framework 2011, Kaiser Health 2013, New South Wales Ministry & Health 2013)
With a strong focus on family need and experience during the transition from active treatment to end of life care, more work is required to understand how doctors and nurses can support families from treatment withdrawal through to death
As only small numbers of patients remain conscious during their critical illness (Wunsch et al 2005), family members become the voice of the patient to inform decision-making about goals of care (Kentish-Barnes et al 2009)
Summary
There has been increasing attention placed on improving end of life care as evidenced by the many international health initiatives (National Gold Standard Framework 2011, Kaiser Health 2013, New South Wales Ministry & Health 2013). Underpinning many of these policy drives is the concern for increased patient choice and a more collaborative approach involving the patient and healthcare providers when making decisions about care at end of life. As only small numbers of patients remain conscious during their critical illness (Wunsch et al 2005), family members become the voice of the patient to inform decision-making about goals of care (Kentish-Barnes et al 2009).
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