Malignant upper urinary tract obstruction resulting in hospital admission: a qualitative study of patient, carer and clinician experiences and information received

Objectives
Malignant upper urinary tract obstruction (MUUTO) is caused by advanced cancer. Developing MUUTO is often associated with approaching the end of life. Percutaneous nephrostomy (PCN) and retrograde ureteric stent insertion (RUS) are common interventions to treat patients with MUUTO, although neither intervention is likely to extend overall survival significantly. Little is known about patient, carer and healthcare professional (HCP) views of the MUUTO management pathway, the benefits and harms of the procedure and the treatment decision-making process. This study investigated the experiences, decision-making and priorities of patients admitted to hospital for MUUTO, and their carers, along with HCPs involved in providing care for this patient group.

Design
Qualitative, using semi-structured interviews. Setting: This study was conducted across two NHS trusts in England.

Participants
12 patients, 8 carers and 14 HCPs were interviewed. Patients were interviewed in hospital during their admission and, where possible, follow-up interviews took place 2–3 weeks later at their homes. In total, 18 patient interviews were conducted. Interviews were analysed thematically by cohort and systematically cross-referenced for areas of congruence and divergence of priorities and views. Ethical approval was obtained before study commencement.

Results
Most patients were admitted as emergencies and received PCNs to relieve severe pain and distress. Patients reported having little choice in the decision-making around intervention due to their symptoms and frequently described the PCN procedure as being painful. HCPs considered the availability of further cancer treatment options a rationale to support intervening for MUUTO. However, HCPs reported decision-making was often complicated by unclear prognosis and the need to address the emergency nature of patient circumstances. A lack of compassionate communication, disrespect and indignity, traumatic hospital admission and premature discharge, in addition to practical administrative difficulties caused patient and carer distress.

Conclusions
Emergency admissions for MUUTO are associated with significant patient and carer distress and are complex for HCPs to manage. MUUTO patients would benefit from a specific pathway to avoid emergency admissions and to facilitate timely advance care planning discussions so that patients’ wishes and HCP views can be shared and incorporated into decision-making about the appropriateness and value of PCN and RUS interventions.