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Usha Grieve 1 November 2022

Electronic end-of-life records

Where we are and where we need to be
Electronic end-of-life records Research and policy Working in the open

We recently published a report with the voices of hundreds of people who told us what electronic end of life records mean to them — the potential they have to enable positive end-of-life experiences, how they can impact on bereavement, and the ways in which a good system for recording and sharing wishes alleviates anxiety and allows people to live well now.

The positive impact of electronic end-of-life records, when implemented well and used by clinicians, is undeniable. However, currently too often the records don’t work as they should or simply aren’t used. In this blog, the second in our series on electronic records, I will bring to life how this results in both anxiety in the present and bad deaths*, using the stories people generously shared.


The strongest message from the 1,700 people we spoke to, was that they experienced considerable anxiety that their end-of-life wishes and health information would not be known about when it mattered. People were really worried about:

It was notable that these worries were held equally by people with existing conditions as well as those who identified as currently healthy. And for many, this anxiety was based on bad experiences they’d had or witnessed — numerous people reported experiences where they had given documents to their doctor which were then lost, forgotten about or not uploaded properly — but for others it came from a general lack of trust in IT systems. What was clear though, was that for people who have to live with poor or deteriorating health on a daily basis, this anxiety made life worse.

“I cared for my terminally ill husband until his death. I often felt there was a gap as to the information available to GP, palliative care and other healthcare professionals especially when out of hours care was needed. It was distressing to have to constantly be checking and checking again that the information was correct. It has not given me much confidence for my own end-of-life care. I’m a Stage IV cancer patient and this is a constant worry.”

“I reviewed my end-of-life plan with my GP 2 years ago, he was supportive & reassuring that a) My wishes were important; and b) That he would abide by them… My concern is that I do not have much faith in the NHS when it comes to sharing information digitally, so if I was in an emergency situation I’m not confident my wishes would be known or adhered to. On two occasions already my records have been misplaced.”

Bad experiences

Lots of people told us about a bad experience where a loved one’s wishes, decisions or information were either not known about or not respected at the end of their life. The impact of this was often devastating. We can’t shy away from the fact that it caused traumatic experiences for both the person dying person and the people close to them.

There were several factors at play here, sometimes together, sometimes in isolation. People told us crucial paper documents, such as Advance Decisions or DNACPR forms, were often lost or not uploaded to a shareable electronic record. Other times a person’s electronic record was not seamlessly available to all the clinical specialties who needed to see it. And several people said records did not travel across geographical boundaries when they needed to.

“The paramedics repeatedly resuscitated my mother after a stroke despite her clear wishes and a DNR. Because neither of us had paper copies of these documents with us, they and the hospital kept treating her invasively. She had signed the DNR at the same hospital before surgery a year before but it wasn’t on record. This was 2 years ago. She has been in a nursing home ever since and regrets daily, how, in her view, I failed her.”

“I was responsible for the care of my mother and aunt prior to their deaths 5 and 3 years ago. They were cared for in good-quality sheltered housing and nursing homes. Both had Advance Decisions and Advance Statements. They both had multiple admissions to hospital in their final few years. Their Advance Decisions never got effectively communicated to hospital staff except when I physically gave a copy to them. In one case this resulted in treatment being given which should have been refused.”

For others, even if their detailed plans were accessible, it did not guarantee that they received the care that was right for them. Sadly, recorded wishes were sometimes not acted upon by healthcare professionals. This caused distress particularly to family and friends when they witnessed their loved one’s wishes being overlooked and subsequently receiving treatment they would not have wanted. This is significant because it shows that getting electronic end-of-life records right is not necessarily enough to ensure that the information in such a record is acknowledged and used.

What‘s needed to get electronic end of life records right?

People told us very clearly what they needed an electronic end-of-life record to do in order for them to have peace of mind now and have what they considered to be a ‘good’ experience when receiving care and treatment in the last years, months or weeks of life:

In some areas this is already happening, but in many it is not. We need urgently to think about how electronic end of life records are commissioned and delivered.

We need to listen to what people need their electronic record to do. It’s not enough just to have one, the record itself has to speak to the right people at the right time and enable the sharing of all important information to those who need to see it. Otherwise much of the positive work to increase the uptake of advance care planning will be undone because that information will not be known about when it matters most.

*‘Good death’ & ‘bad death’ are phrases I hear fairly often. Our research has told us that these are not terms that people relate to or understand. But if you explain exactly what you mean by these terms then people do. So, in this blog, by bad death I mean when someone is given treatment they do not want, their symptoms are not well managed, or their wishes are overlooked.

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