How are processes of transition to end of life managed for critically ill patients with a life-limiting illness?
The Study:
Background: Up to half of all cancer patients will become critically ill during the course of their illness. Critical care outreach teams (CCOT) have a prominent role in triaging these sick, at risk or deteriorating patients in terms of either admission to critical care or management of care for these patients on the ward. For around a quarter of these patients, the first time a limitation of treatment (LOMT) decision is made, such as ‘not for admission to critical care’, will be when they become critically ill. Research suggests that it is frequently only when patients present with critical illness on the ward that decisions are made about active treatment. Recent research has shown that outreach teams often lead discussions of limitations of treatment (subsequently leading to end of life decision-making).
Methods: An ethnographic study is underway involving participant observation, interviews and questionnaires across two sites: The Royal Marsden NHS Foundation Trust in London and The Christie hospital in Manchester. The aim was to explore of the experience of the critical episodes to establish factors (facilitating and/or inhibitory) for improving these transitions. Having achieved REC and sponsorship approval to commence the study in August 2013, and final approval to work on the study at The Christie in December 2013, data collection has been progressing and I have collected data on over 15 episodes, including 6 at The Christie. As part of the data collection I have been working alongside critical care outreach ‘shadowing’ as a participant observer, gaining understanding of the processes and thoughts behind decisions made when cancer patients present with critical illness. The module learning has proved invaluable in undertaking the research thus far, and I have learnt about taking field notes are taken during and after observations and formal (audio-recorded) and about carrying out informal interviews with those being observed. Transition points have been observed, with access gained, via the hospitals’ rapid response teams (e.g. critical care outreach) (via the multi-disciplinary teams). For each scheduled observation I observed discussions around transition points and noted the subsequent outcomes for patients. As the secondary part of ethnographic study, interviews are being carried out to elucidate rationales for practices witnessed in the participant observation phase, encompassing: decision-making, factors (facilitating and/or inhibitory) around smooth and sensitive transitions, and characterisation of practices around uncertainty in life-limiting illness.