Electronic end-of-life records

Why getting it right is so important

Through Compassion in Dying’s Information Line, advocacy work and research, we speak to people every day who have trouble making sure their wishes are known about. Worryingly, many of the people we support have first-hand experience of their own or their loved ones end-of-life records not being shared between healthcare professionals or between healthcare settings. The impact of this is huge and far reaching. We therefore want to help make sure people can trust that their wishes will be known about and followed when it matters most.

In February 2021, Compassion in Dying and the Professional Records Standards Body (PRSB) carried out a national survey asking people to share their experiences of, priorities for and concerns about electronic end-of-life records. The aim of the survey was to inform the development of a new Palliative and End of Life Care Information Standard which sets out what information should be held in a person’s electronic end-of-life record.

We were surprised by the number of responses we got. When we read the 1,700 survey results, we knew the stories needed to be shared.

We realised that while the new Information Standard is a great first step, many of the concerns expressed by people will only be addressed by effective implementation of the standard. The standard is therefore only one piece of the puzzle.

What people said about electronic end-of-life records

In brief, we found that:

1. People experienced considerable anxiety about their wishes and health information not being known or acted upon when it mattered.
2. People want to be more involved in viewing and editing their end-of-life records.
3. People had bad experiences of end-of-life care when their wishes and health information were not known or acted upon by healthcare professionals.
4. People had good experiences of end-of-life care when their wishes and health information were known about and respected.
5. Recording their wishes was not always enough — many people needed ‘advocates’ to ensure their health information was known about and their wishes acted upon.

People need digital systems to improve, but they also need practice to change so that their right to make decisions about their care is embraced and encouraged, and their wishes are followed. The last finding brings this into sharp relief.

Compassion in Dying supports people to consider what matters most to them, document their preferences, and speak out when they feel theirs or their loved one’s wishes are not being viewed as central in decision-making.

But alongside this, clinicians must be able to support people to consider and document their wishes, and be prepared to talk openly and honestly about death and dying. Clinicians themselves should be supported and trained properly to initiate conversations about planning ahead and recognise the cues from people that they might be open to talking about their wishes. And finally, people’s wishes must be respected.

Over the coming month, we’ll be writing more blog posts about what we found. We’ll share details about people’s experiences, wishes and fears and the implications for those working in healthcare — whether as clinicians, healthcare commissioners or leaders.

We’ll share what happens when end-of-life records and conversations are done right, and the devastating impact of getting it wrong.

We share the experiences within this report because what people told us needs to be central in all efforts to get electronic end-of-life records right.

What is clear above all else is that when information is accessible to someone’s healthcare team and known about when it matters, it has a hugely positive impact on that person’s end-of-life experience. Getting it right matters, and we want to explore how we can do that together.