Patients’ experiences of quality in palliative care and advance care planning in primary care: a qualitative study

TL;DR

This study explores how patients in late-stage palliative care experience quality of care and advance planning in primary healthcare settings.

Contribution

The study provides new qualitative insights into patient experiences of palliative care and advance care planning in primary healthcare.

Findings

Patients emphasized the importance of trust in clinicians and personalized support.

Quality of care was influenced by context and communication skills of healthcare professionals.

Advance care planning helped patients organize important life aspects and ease burdens on relatives.

Abstract

Primary healthcare services provide care to patients and their relatives during the late palliative phase in the patients’ home or in facilities such as nursing homes. Patients receiving palliative care may be vulnerable due to the total pain of the situation they are facing, which requires great expertise of healthcare professionals in meeting the patients’ needs. The aim in this study was to explore patients’ experiences of quality in palliative care and advance care planning in primary healthcare services.

This study has a qualitative design. Five patients in the late palliative phase in primary care from different municipalities in Norway participated. All participants had experiences across both primary and specialist care settings. Individual interviews were conducted between January 2022 and July 2023. The interviews were transcribed verbatim and analysed using content analysis. The study adheres to the checklist of the consolidated criteria for reporting qualitative research.

The findings are described in terms of four main themes: (1) trust in supportive clinicians to ease their future path, (2) perceived quality of palliative care depended on the context, (3) advance care planning helped to tidy up important aspects of life, and (4) personalized family support and involvement eased burdens for patients and relatives.

Patients in late palliative phase and their experiences of palliative care highlight the need for information and support from healthcare professionals, but the organization of primary healthcare settings does not adequately address these needs. A key aspect of quality in care is comprehensive and individualized follow-up throughout the patient’s illness trajectory. Another area that affects the quality of palliative care is the communication skills of healthcare professionals. Care plans for the end- of -life were developed through advance care planning, but the quality of implementation varied in home care. A huge concern for patients in the late palliative phase was if and how their relatives received the support they needed.

The online version contains supplementary material available at 10.1186/s12904-025-01919-8.