Understanding what matters in end of life care

We are grateful to Anna Timms, a medical student at Kings College London, for contributing this blog post about using Care Opinion in her course.

I recently completed a ‘Scholarly Project’ module at King’s College London, focused on the analysis of online narratives. The intention was to gain insight into patient experiences of healthcare. I was lucky to receive a seminar from Care Opinion’s CEO, James Munro, and was amazed at the range of stories on the platform.

While some of the accounts are wonderfully simple and practical, such as comments on poor signal or wifi, others are painful, intimate, and deeply personal.

A few days before the project was due to start, my grandmother passed away following an episode of pneumonia. This heart-breaking event was made slightly more bearable by the care she received at the Queen’s Medical Centre during her final days of life. She was placed in a quiet side room with a beautiful view over Nottingham (which had been her home for many years), and every member of staff we came across was kind, concerned and efficient.

The experience left me reflecting on how different the dying process could have been without such supportive healthcare staff, both for my grandmother and her loved ones. Moreover, the definition of successful end of life care seems to be crucially about patient and family experience, since there is no definitive ‘cure’. This made it a perfect subject to consider using narrative analysis.

I was struck by the disarmingly honest nature of many of the accounts

Some preliminary research revealed that despite hospital remaining the most common place of death in the UK, relatives are more likely to experience poor end of life care in hospitals than other settings, such as hospices or at home. This discrepancy was the driving force behind my research topic: ‘Exploring Carers’ Experiences of End of Life Care in UK Hospitals through Analysis of Online Narratives’.

I took to Care Opinion to search for stories from relatives and loved ones, and found countless results. I was struck by the disarmingly honest nature of many of the accounts. For example, one bereaved spouse openly admitted that she felt ‘traumatised and furious’ following her husband’s death. Such extremes of emotion are perhaps more easily expressed to the anonymous online world, making Care Opinion a valuable source for analysing the true feelings of those who have experienced the UK healthcare system.

In a minority of shocking cases, it seemed that basic physical needs, such as pain management and toileting, were not met.

Often the smallest of gestures had the most impact on how loved ones viewed the care

Although horrific (and heavily focused on in my essay), this was thankfully rare. For the majority, it became clear that it was often the smallest of gestures that had the most impact on how loved ones viewed their experiences of end of life care in hospital. For example, one relative described how nursing staff made sure their father always received his favourite drink at mealtimes, and another noted how staff found a reclining chair to allow them to sleep at their mother’s bedside more comfortably. It is arguably these small, significant details that can become lost in more quantitative forms of research.

Overall, I believe that Care Opinion is a valuable tool for better understanding the nuances of patient experience. Practical clinical care is only a small part of medicine, and encouraging wider use of sites such as Care Opinion by medical and other healthcare students would greatly benefit future practice.