A Qualitative Exploration of Seriously Ill Patients’ Experiences of Goals of Care Discussions in Australian Hospital Settings

Abstract

BACKGROUND: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient's preferences and values. Little is known about patients' experiences of these discussions. OBJECTIVE: This study explored patients' perspectives of the GOC discussion in the hospital setting. DESIGN: An explorative qualitative design was used within a social constructionist framework. PARTICIPANTS: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. APPROACH: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient's home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. KEY RESULTS: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most

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“…17,18 It is essential to listen to them, answer their questions, and understand their preferences in order to make them feel safer and help them maintain some sense of control and autonomy, which decreases stress and anxiety and increases satisfaction with healthcare. 3,19,20 Another demanding context involves communication with patients and families regarding diseases without therapeutic perspectives and/or end-of-life. 21 In these situations, care should aim to mitigate pain; include patients in present and future decision-making processes; encourage them to talk about important aspects of their lives, such as spirituality and preferences; and share information about dying and death, if they wish.…”

“…17,18 It is essential to listen to them, answer their questions, and understand their preferences in order to make them feel safer and help them maintain some sense of control and autonomy, which decreases stress and anxiety and increases satisfaction with healthcare. 3,19,20…”

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“…16,17,24,34,36,[48][49][50]52,55,61 (5) Setting ample and uninterrupted time for each conversation. 16,17,24,34,36,[48][49][50]52,55,61,62 Roles of healthcare professionals in end-of-life communication. End-of-life communication ideally involves healthcare professionals from medicine, nursing, chaplaincy and social work.…”

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“…The need for sensitive and effective communication emerges consistently and frequently across a number of areas in oncology, despite many years of work developing and trialling communication skills training for oncology health professionals [ 27 , 28 ]. A recent study by O’Connor et al [ 29 ] found that patients in hospitals were generally comfortable talking about end-of-life preferences in a goals of care discussion but only if the discussions are conducted sensitively and in a patient-centred way.…”