Background Malignant bowel obstruction is often inoperable, and can precipitate a transition from hospital to hospice care. The condition brings a high symptom burden for patients (severe pain, nausea and intractable vomiting) and an inability to eat and drink. Cochrane systematic reviews report significant ongoing uncertainties regarding its management (Feuer, Broadley. Cochrane Database Syst Rev. 2000; Issue 1. Art. No.: CD001219; Sowerbutts, Lal, Sremanakova, et al. Cochrane Database Syst Rev. 2018; Issue 8. Art. No.:CD012812; Obita, Boland, Currow, et al. J Pain Symptom Manage. 2016; 52(6):901–19.e1); these uncertainties can lead to distress and confusion for the patient, and create challenges in communication and decision-making (Bravington, Obita, Baddeley, et al. PLoS ONE. 2023;18(8):e0289501).

Aim To understand the transition to hospice care in patients with malignant bowel obstruction to inform shared decision-making interventions.

Method Semi-structured, in-depth interviews using graphic elicitation (diagramming) with 19 palliative care specialists (9 consultants, 10 nurses), 14 patients and 4 caregivers as part of a larger qualitative study of the multidisciplinary management of malignant bowel obstruction (ethics approval reference: 22/NW/0153). Interviews were conducted across three hospitals and three hospices, and in patients’ homes. Transcribed, anonymised data were managed using Nvivo, and interpreted using reflexive thematic analysis (Braun, Clarke. Qual Res Sport, Exerc Health. 2019;11(4):589–597).

Results Despite the severe symptoms and poor prognosis associated with inoperable malignant bowel obstruction, in hospitals, early involvement of palliative care teams was often resisted. Patients can enter hospice care with unstable symptoms and insufficient time to establish effective symptom control before death. Many patients arrived without a clear understanding of their prognosis, some with recently diagnosed cancer. Some were experiencing uncertainty and distress around the difficulties of eating and drinking, and had unrealistic expectations of treatment (such as parenteral nutrition). Hospice staff had to establish iterative conversations in a short timespan to facilitate decision-making that prioritised quality of life and a ‘good’ death.

Conclusion We suggest the utility of: i) upstream information/education in secondary care to facilitate realistic expectations and earlier access to palliative expertise, and ii) sensitive patient and caregiver information around symptom management with a focus on prioritising quality of life.