For those of us working in health and care, whether on the front line, in the voluntary sector or in commissioning, it can be easy to think of digital systems and electronic patient records as an add-on to good care rather than central to it.
But the most extensive research to date on people’s views about their electronic end-of-life records reveals that this is not true. This research, conducted by Compassion in Dying and the Professional Records Standards Body (PRSB) with more than 1,700 people – an analysis of which is published in a new report this week – found that electronic end-of-life records are an essential, not a luxury. And there is much work to be done to get them right.
What came through loud and clear is that people care deeply about their electronic end-of-life records. When working as intended they should contain key information about their health, wishes and preferences for the end of life – such as their diagnosis, medications, DNACPR decisions and other important care and treatment wishes – and they should be easily accessed and acted upon by professionals across all health and care settings.
When they work well, they vastly improve people’s end-of-life experience – not just for the patient concerned but also those close to them and the healthcare team. As one relative told us, “as a result we spent time with him rather than battling the healthcare system. Having his wishes pre-documented also ensured the staff were able to act confidently on his behalf.”
However, many people reported that they are not at all confident that this will be the case, and they experience significant anxiety as a result.
A person with stage four cancer who cared for their terminally ill husband said, “I often felt there was a gap as to the information available to the 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.”
Some people had witnessed these failings first-hand, causing significant distress. One person described their mother being repeatedly resuscitated following a stroke, despite her clear wishes outlined in a DNACPR (Do Not Attempt Cardio Pulmonary Resuscitation) decision and with a Lasting Power of Attorney in place.
Some wanted more control over their record, with one respondent telling us “as a person with complex health and personal needs, that some important aspect won’t be passed on is a worry. I’d like to have the information in one place that I can see and amend if necessary and be confident that everyone is on the same page.”
Others said that support from family, close friends or carers was often essential to explain and reinforce what their record should be communicating clearly. One person who supported their elderly father in his last year of life said they were “amazed how [healthcare providers] seemed to have no ready access to his medical records of any sort. Had I not been with him, they would effectively have been dealing with a blank sheet of paper.”
How do we fix these issues? By listening to what people tell us they want and need from their electronic end-of-life record.
They want their record to communicate their health information and wishes seamlessly across care settings and travel across geographical boundaries. They want to be able to view their own record. They want paper documents such as Living Wills or DNACPR forms to be easily visible to all staff. And perhaps most importantly, people want to feel reassured that a healthcare professional will have the time and skills to routinely consult their record and honour their wishes.
We welcome the PRSB’s new Palliative and End of Life Care Information Standard, launching later this year, which will set out what information should be held in a person’s electronic end-of-life record. The implementation of this Standard will be key, particularly at the Integrated Care System level where they will be commissioned. It is also important to remember that effective digital records and systems are just one piece of the puzzle.
People also need healthcare professionals to have timely, sensitive and honest conversations with them about their wishes, record them accurately, know where and how to look for someone’s advance care plan, and importantly to act upon it. Commissioners, leaders, health and care professionals and the voluntary sector all have an important role to play in ensuring that people’s right to make decisions about their care is embraced, encouraged and respected when it matters most.
We hope the new Palliative and End of Life Information Standard will be an important first step on the road to ensuring each person’s end of life care is truly based on what matters to them. But improvements to digital systems cannot occur in isolation – they must come alongside changes to practice and culture that put people at the heart of decisions about their end of life
Dame Barbara Monroe, Chair of Compassion in Dying.
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