Opening the door to end of life planning conversations

The theme of helping healthcare professionals to have difficult conversations about planning for the of end of life was at the heart of recent webinar hosted by the University of Huddersfield’s Palliative and End of Life Care Special Interest Group.

The webinar was held as part of Dying Matters Week 2022 and was attended by professionals working across different fields of health and social care.

Dr Mary Turner and Dr Julie Ellis - co-leads of the Special Interest Group - led the discussion that aimed to help professionals who may need to approach a topic that can still be problematic for patients and their families. Those who care for the terminally ill are a group who would be expected to raise the issue, but the webinar also discussed how emergency services staff or ambulance crews may have to work around a patient’s wishes having never met them before.

Communications around Advanced Care Planning still difficult

The concept of Advanced Care Planning (ACP) was first introduced in England and Wales in the early 2000s, and Dr Turner became involved with ACP in 2005 as part of her then-role in leadership at a strategic health authority. She helped to roll out the national End of Life Care Programme, which was followed by the publication of the first National End of Life Care Strategy in 2008.

However, she says that many of the challenges related to communication around end-of-life care for both patients and professionals remain in place.

“A lot of the issues people struggled with around ACP are exactly the same as they were when I started,” says Dr Turner, Reader in Health Services Research. “Such as having those difficult conversations, and staff needing the time and a way to start that difficult conversation.

“There was a big push around 2010 to make sure that anyone involved in ACP had undergone advanced communication skills training, to help staff develop the skills and confidence to initiate and handle difficult conversations about planning for the end of life.

"There is often worry about what a patient has already been told about their illness, or whether someone knows if they are on a dying trajectory or not. But the same reasons around why that discussion may not have been had still exist today, and Julie and I wanted to address this with the benefits of our differing backgrounds.”

Dr Ellis, who is Senior Lecturer in Sociology of Health and Illness, said that, “The spirit in which we ran the event was to be an open forum for people to share their experiences, so one question I posed was if ACPs are always preferable? What are the complexities and the knotty issues around that?

“For instance, there was a question from the audience about the role of paramedics, who can come into a difficult situation, having never encountered the patient before and they almost certainly will not know where the ACP for a patient is recorded, or if indeed there is one in place.”

Pandemic impact on addressing Advanced Care Planning

A recent study by Dr Turner revealed that the COVID-19 pandemic had created further challenges around advance care planning.

“As soon as COVID hit, people were shipped out of hospitals into care homes, and there was anecdotal evidence that in some cases people were being given DNAR orders – Do Not Attempt Resuscitation orders – without sufficient discussion. Things were happening so quickly that those conversations were not happening, there was a lot of concern about whether people were making ACPs as it was a chaotic situation.

“The study sought the views of staff in hospices and care homes and tried to ascertain whether they were having ACP conversations in these settings and what the pandemic may have changed about this. We were able to analyse what other supportive contextual factors allowed those discussions to take place, for example if there was support from managers, and ask whether staff had the time, the skills and the confidence to have those conversations.”

Dr Ellis explained, “Some of these issues have been around for quite a while, and Mary’s research flags up that time, confidence and training have been magnified as issues because of COVID-19.

In summing up the key aims of the webinar, Dr Ellis added, “we also had a great session with two clinical specialists from Kirkwood Hospice in Huddersfield, which was fascinating and brought up a lot of interesting issues. One of our aims is to respond to our colleagues in practice as a special interest group, to create a community of knowledge exchange, and to develop collaborations with people on the ground.”