Misaligned perspectives and experiences: a qualitative study of older patients with suboptimal Dialysis initiation and their clinicians

BACKGROUND: A person-centred approach is a key component of comprehensive high-quality nephrology care. However, the unpredictable nature of an acute or unplanned initiation of chronic haemodialysis treatment poses a challenge for meeting this patient group in a person-centred manner. Yet, little is known about the person-centred practices of clinical encounters prior to and along these suboptimal dialysis initiation (SDI) pathways. This study aimed to explore the patient and clinician perspectives on how these encounters unfold among older adults aged ≥ 65 years, receiving SDI.

METHODS: The study builds on an ethnographic approach encompassing participant observation of clinical encounters during eight workdays and narrative interviews with 14 SDI patients aged ≥ 65 in combination with two focus group discussions with seven renal nurses and five nephrologists. This study was conducted at a specialized nephrology department at a tertiary hospital in the Capital Region of Denmark.

RESULTS: The results shed light on the existence and impact of 'predefined' encounters, encompassing various aspects such as the agenda of conversations during encounters, and the logical sequencing of nephrology care pathways. In the two key themes 'Predefined' agendas: lost in translation, and The optimal CKD pathway: what happens when?, we illustrate how the acute and unpredictable nature of SDIs challenge the 'predefined' encounter format. Thereby, the clinical encounters become misaligned with the needs and preferences of each patient, no longer responding in a person-centred manner.

CONCLUSION: Clinicians pressed for time face challenges in responding to diverse patient needs in clinical SDI encounters. Existing 'predefined' agendas and logical sequencing have evolved to support clinicians in reaching clinical endpoints but fall short when SDI patients' particular and dynamic perspectives does not fit the standard. To truly facilitate person-centred care, the flexibility of encounters and the overall nephrology care pathways should be improved to ensure that encounters are responsive to and reflect individual patient preferences, contexts, and needs.

CLINICAL TRIAL REGISTER NUMBER DECLARATION: Not applicable.