Healthwatch Essex Researches Patient Experience At the End of Life

Healthwatch Essex is undertaking research which explores patient experiences at the end of life.

The work is designed to explore ‘Advanced Care Planning’ – a way in which people can plan ahead for the end of life.

Creating an Advanced Care Plan (ACP) involves thinking and talking about your wishes for how you are cared for in the final months of your life. Previous research has shown that that those engaged in ACP conversations experience end of life care that more closely matches their wishes than those who do not.

The Healthwatch Essex research team has spent four months conducting fieldwork at Basildon University Hospital in the renal and palliative care wards and clinics.

Jennifer Rogerson, Senior Research Associate at Healthwatch Essex said: “We observed consultations and ward rounds, and interviewed staff and patients about end of life care and planning. While most people agree that planning is important, our research has shown how difficult planning can be due to social, physical and emotional challenges. Planning is complicated by factors like someone’s preferred places of care and how these can change over time.

“Our research isn’t yet complete, but some emergent themes include recognising that different kinds of planning are necessary for specific people and contexts. It is also critical to recognise that home can take on different meanings for people over the illness journey. So, our preliminary findings suggest that home is a concept rather than a place and healthcare needs can be provided in familial and home-like ways in lots of different kinds of spaces.

“Coupled with this, it is necessary to acknowledge the place of family, relations and friends in planning. While planning is often regarded as (ultimately) an individual practice, many decisions and ways of thinking about one’s end of life are shaped by their familial circumstances.

Healthwatch Essex hopes that the findings will support an open conversation about Advanced Care Planning; the impact it can have and why it often doesn’t take place.