Constructing the end of life: tools, conversations, ideas of home

Healthwatch Essex researchers conducted a study on the challenges that patients and professionals experience in trying to complete ACPs. In this report, Healthwatch Essex show how planning for the end of life is more complicated than it is imagined in the form of making a single, written plan.

Research took place at Basildon and Thurrock University Hospital’s palliative medicine and renal departments. Healthwatch Essex spent 16 weeks in two clinics and wards; renal and palliative medicine. After gaining verbal and/or written consent from patients, Healthwatch Essex observed clinic consultations and ward rounds two to three days per week. Healthwatch Essex observed approximately 150 consultations and attended almost 100 ward rounds over the course of the fieldwork. Healthwatch Essex interviewed staff formally and informally over the 16-week research period, who we had observed and informally interviewed patients. Healthwatch Essex interviewed GPs across Essex on their views and experiences of end of life care planning and its challenges.

In this summary, Healthwatch Essex have outlined the ways that planning can be obstructed due to the inherent unpredictability of physiological and social processes, contexts and the circumstances that shape the ways planning conversations take place, or not at all. Healthwatch Essex have described the ways that planning is often about the journey patients take in thinking through their wishes and expectations for end of life, rather than about the plan itself. Therefore, while end of life discussions took place over the course of our study, these were rarely a single conversation encompassing the entirety of end of life planning. Nor were the patients, symbolically concretising their choices. The discussions and journeys of planning were in many ways more important to patients and their medical team than the outcome of a formal written document.