The chaos of hospitalisation for patients with critical limb ischaemia approaching major amputation

Aims and objectives To illuminate the hospital experience for patients and families when major amputation has been advised for critical limb ischaemia (CLI). Background CLI creates significant burden to the health system and the family, particularly as the person with CLI approaches amputation. Major amputation is often offered as a late intervention for CLI in response to the marked deterioration of an ischaemic limb, and functional decline from reduced mobility, intractable pain, infection and/or toxaemia. While a wealth of clinical outcome data on CLI and amputation exists internationally, little is known about the patient/family‐centred experience of hospitalisation to inform preservation of personhood and patient‐centred care planning. Design Longitudinal qualitative study using Heideggerian phenomenology. Methods Fourteen patients and 13 family carers provided a semistructured interview after advice for major amputation. Where amputation followed, a second interview (6 months postprocedure) was provided by eight patients and seven family carers. Forty‐two semistructured interviews were audio‐recorded and transcribed verbatim. Hermeneutic phenomenological analysis followed. Results Hospitalisation for CLI, with or without amputation, created a sense of chaos, characterised by being fragile and needing more time for care (fragile body and fragile mind, nurse busyness and carer hypervigilance), being adrift within uncontrollable spaces (noise, unreliable space, precarious accommodation and unpredictable scheduling) and being confused by missed and mixed messages (multiple stakeholders, information overload and cultural/linguistic diversity). Conclusions Patients and families need a range of strategies to assist mindful decision‐making in preparation for amputation in what for them is a chaotic process occurring within a chaotic environment. Cognitive deficits increase the care complexity and burden of family advocacy. Relevance to clinical practice A coordinated, interprofessional response should improve systems for communication, family engagement, operation scheduling and discharge planning to support preparation, adjustment and allow a sense of safety to develop. Formal peer support for patients and caregivers should be actively facilitated.