Having a conversation with a patient about end of life care can be difficult and uncomfortable, but it’s also essential. It is important to provide realistic expectation to assist a patient in coming to terms with death and to make decisions about end of life care.
Since a landmark legal case in 2014 doctors have been required to include patients in discussions about any Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) decisions and Jillian Hartin, Senior Nurse for the Patient Emergency Response and Resuscitation Team at UCLH, considers this a constructive and positive change.
Jillian says that the change in law inspires a culture of transparency and trust; encouraging clinicians, patients and families to engage in open conversations. At UCLH this prompted Jillian, along with Judy Walker, who specialises in behaviour change education to design a specialist course, Talking DNACPR for senior clinical staff which was funded by UCLH Charity. “We wanted to inspire our staff with the confidence to approach these difficult conversations”, Jillian says.
NICE guidelines identify that best practice is to start the conversation when “information is useful in order to make decisions that will impact care” and this will give patients time to come to terms with the fact that they are reaching the end of their life. As Jillian states, “CPR will not always reverse death” and patients should only receive clinically appropriate treatment. “Failure to do this could restrict a patient’s ability to have a dignified death.”
The Talking DNACPR course takes just one day to complete and is open to all senior clinicians who are directly involved in caring for patients with life limiting illnesses – occupational therapists, nurses, doctors, etc. “The idea is to broaden clinicians’ understanding of how to approach these conversations with the wider support of other team members.”
The day has two main elements. For part one, delegates learn about law, ethics, psychology and religious concerns relating to DNACPR and their own approach to these conversations with patients. For part two, participants are divided up into groups of four and challenged on their patient interaction skills through a “high fidelity simulation” – a scenario that is created by actors to provide attendees with a realistic situation in which they can explore their skills. “The scenarios are based on real events at UCLH, and present delegates with some very challenging situations”, comments Judy.
In one scenario, a patient is accompanied by two siblings who are struggling to talk about what should happen about their critically unwell relative. The clinician is therefore challenged to include the patient in the conversation amidst the family dynamics. “Another tasks delegates to break the news to a teenage patient and their mother, and there is also a scenario of an elderly man who refuses to face the fact that he is dying.”
“Scenario four is the situation that delegates often find the most difficult”, says Judy, and explains that the characterisation of ‘Gloria’ is a woman who has suffered from complications associated with Crohn’s disease, who is listed as for resuscitation but has experienced so much pain that she no longer wants to be kept alive. “Participants struggle with this one as the actress makes the situation so real for them, and emotions are heightened by the idea of someone not choosing life.”
After taking part in the scenarios, delegates engage in facilitated debriefing with their peers, and also the actors, which Jillian says provides a very rich learning environment.
“Clinical staff face real challenges in having DNACPR conversations. There is no ‘one size fits all’ conversation and clinicians need to find their own style and what works best for them, the patient, the family, the situation.”
Judy concludes, “These high-fidelity simulated scenarios provide clinicians with a safe place to practise, reflect, learn and improve”.