End-of-life care: Patients’ preferences and relatives’ experiences : with focus on communication and advance care planning

Abstract

Background and aim: Advance care planning (ACP) is a communication process for mapping patients’ priorities for end-of-life care. Preparing for an introduction of ACP in Norwegian hospitals, we wanted to explore patients’ views on ACP and which topics they wanted to discuss, and how patients, relatives and clinicians experienced ACP conversations. Finally, we wanted to explore whether an invitation to ACP would influence perceptions about care and support among bereaved relatives.

Methods: Focus group interviews (2014-15) were conducted with patients having advanced pulmonary diseases. Based on the results, a semi structured ACP conversation guide was developed. Individual ACP conversations were held with hospital inpatients in an ACP implementation pilot (2014–2017). Clinicians’ views on ACP were explored in focus group interviews. Responses to the post-bereavement survey of the ERANet-LAC International Care of the Dying Evaluation (CODE) project (2017-2020) in Argentina and Norway were studied to examine any associations between being offered an ACP conversation and perceptions about care and support. Transcribed focus group interviews and ACP documents were analysed by systematic text condensation, the survey results by descriptive statistics and mixed-effects ordinal regression models.

Results: Focus group patients (13) called for support, information and transparency, and they preferred an invitation to an ACP conversation at certain “turning points” in the disease trajectory. Both the invitation and the conversation itself should be patient-centred and individually tailored. In the pilot, 51 patients with advanced lung disease took part in ACP conversations; relatives participated in 18 of them. All participants appreciated the conversations. Four themes emerged: (i) disturbing symptoms, (ii) existential topics, (iii) care planning, and (iv) important relationships. Clinicians acted as gatekeepers for participation, but the documentation of the conversations revealed information previously unknown to clinicians. Many of them saw ACP as pertinent, and called for implementation resources. The post-bereavement survey had 276 participants (Argentina: 98). Fifty-six percent had been invited to ACP conversations, and their perceptions about care and support were significantly more positive than those of the not-invited; in the latter group a majority (68%) would have wanted an invitation to an ACP conversation.

Conclusion: ACP should be offered, with a patient-centred approach, at turning points in the disease trajectory. An attention towards present and future symptom control may be useful. ACP may support patients and relatives by responding to their needs, whether emotional or practical, and providing tailored information. Important aspects for implementing ACP are management support, education, training, feasible routines and allocated time to perform the conversations, as well as safe and easily retrievable documentation and sharing of this between healthcare levels.