Background Advance Care Planning (ACP) is a key component of the UK End- of- Life Care Strategy to improve the quality and experience of care for patients and their families. Little is known about patients’ response to the opportunity to discuss preferences for future care. Aim: This paper presents findings from a study of how seriously ill patients engage in ACP in community care settings.
Methods Qualitative study of longitudinal patient case studies with six month follow-up.
Results There was evidence of ACP in 12 of 21 cases. The findings illustrate the diversity of patient responses to ACP discussions. Complex situational factors underlay preferences for end-of-life care which were liable to change as death drew near. ACP discussions tended to be reactive rather than pre-emptive, occurring in response to critical events and close to, rather than in advance of, death.
Discussion Patients tended to be pragmatic about their future options. Preferences were shaped by context, key relationships and the desire to avoid imposing burden on family carers. Barriers to ACP included uncertain prognosis, absence of an established relationship with a key professional, and patients’ resistance to confronting, or discussing, the terminal nature of their illness.
Conclusion The findings highlight divergence between policy and current practice of ACP. Rather than focus on issues of precedent autonomy, capacity, and open awareness of death and dying, patients prioritised being free from pain, living in an extended present, and not placing a burden on their family carers.
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