Grappling with decisions about amputation for critical limb ischaemia: the patient and family experience

Major amputation may be advised for patients with Critical Limb Ischaemia (CLI), a devastating endpoint of lower extremity arterial disease. Making a decision about amputation is difficult; while the clinical outcomes of these amputations are well researched, little is known about the patient and family experience of making such a decision. Making an earlier decision for amputation may improve person and family outcomes as patients often deteriorate rapidly, resulting in them having to face and emerge from amputation with increased frailty and morbidity, greater mortality risk and protracted recovery. This study aimed to provide a deeper understanding of the person and family experience of CLI and the making of decisions about amputation. This longitudinal qualitative study engaged 14 people with CLI and 13 family members to explore 19 CLI journeys. People proceeding to amputation were interviewed pre- and six-months post-amputation, while people declining amputation were interviewed once. Forty-two verbatim transcripts were analysed using hermeneutic phenomenology, underpinned by the existential philosophies of Heidegger and Merleau-Ponty to explore embodied CLI, Being-towards-death, Being-with others, and either turning towards or turning away from, amputation. The qualitative interpretation centred around Heidegger’s authentic and inauthentic ‘modes of Being’. For Heidegger, authenticity of being is a shift in attention and engagement to focus upon one’s uniquely individual or true self, turning away from the inauthentic everyday world of the ‘they’ (Das Mann) where Dasein usually resides. In moments of authenticity, Dasein experiences clarity of self, a sense of meaningful existence, and of being its own. In contrast, in inauthenticity, beings are ‘sucked into the turbulence of the world of ‘they’’, becoming lost or separated from their sense of unique identity and purpose. When decisions about amputation were grappled with, CLI patients demonstrated a tendency to dwell in a state of inauthentic being, obscuring their unique possibilities for existence. Retreating from discourse and neglecting or renouncing decisions contributed to difficulties in shaping and timing intentions for the body with CLI and participants initially gravitated towards conservative care. Where there was authentic clinician presence and people with CLI engaged in discourse about amputation, they reached a clearing of understanding where they could authentically position themselves to make their ‘right’ decision. The findings supported the need for earlier and enhanced clinician facilitation of patient and family decision-making about CLI-related amputation. Ideally, amputation needs to be considered not as a treatment failure but as a valid palliative option that provides effective symptom control for the frequently unendurable pain of CLI