“There is an absolute need for end of life care and education in this pandemic”

Categories: Care, Community Engagement, Education, and Featured.

When Covid-19 began to take hold, a postgraduate course in palliative and end of life care was quickly adapted to provide the now crucial skills of caring for and communicating with patients and families during a pandemic.

Barbara A Jack, Professor of Nursing at Edge Hill University in Ormskirk, and Professor Karen E Groves, Consultant in Palliative Medicine in West Lancashire, explain what the course achieved.

A collaborative partnership between Queenscourt Hospice in Southport and Edge Hill University led to the creation of an original and inspiring programme for front line health care professionals, aiming to equip them to provide the best possible evidence-based palliative and end of life care. The programme includes studying individual modules to gain a postgraduate certificate or Masters award in Integrated Palliative and End of Life Care. The underlying ethos of the course is based upon the belief that palliative and end of life care is crucial, yet many health care professionals feel they do not have the knowledge, confidence or skills to provide optimal care.

In spring 2020, participants were undertaking the module Transforming Integrated Palliative and End of Life Care, a helicopter overview, including communication, symptom management, ethical and psychological issues, spiritual and family care, when the country was plunged into the Covid-19 pandemic. Participants, as qualitied health care staff employed in hospitals, hospices and community settings from across the north-west of England, were on the frontline of caring for patients with Covid-19, and many of them and their families became ill during the course.

The course content was adapted to focus on the essential elements of caring for those dying from Covid-19. As part of the end of module evaluation, two months after lockdown with many of the participants having not only cared for many cases but also suffered from the illness themselves, we asked them how the course had helped them specifically in caring for patients with Covid-19 and their families. Nine of the fourteen students who attended the final session responded on the chat facility on the Zoom platform or via the university virtual learning environment.

There was an overwhelmingly positive response on the value of the course and several reported they had already made changes in their clinical practice. Some commented that they had found meeting together, albeit online, supportive and felt it had provided “a relief from the current situation” particularly at this time. With regard to the current situation, regarding Covid-19 the feedback from the students focused on two intertwined areas: “explaining the symptoms of dying” and “communication”.

Several respondents commented on the skills to explain the symptoms of dying and how this helped when speaking to families on the phone, as one participant said: “one thing I have found really useful is the explanation of symptoms that happen as a person is dying (e.g. the death rattle and breathing pattern). During Covid and reduced visiting it has been useful to be able to explain these processes as phone calls have had to be made.”

Another participant reported that it had reduced fear in both patients and relatives: “I feel much more confident to speak about symptoms of dying. Relatives and patients seem to have been really grateful to have normal symptoms and signs explained to them and have said they feel much less frightened about the process.”

Additionally several participants noted the impact of their communication skills on patients who did not have Covid-19 and their families, who were unable to have visitors. One participant said: “I have found the communication skills and breaking bad news sessions helpful. Patients without Covid-19, at these times, are unable to have any visitors and, still unwell, are often receiving bad news. I am using my communication skills to not only communicate with the patient but also their relatives over the phone.”

Importantly the language that is used around death and dying, especially during a pandemic situation when patients were deteriorating rapidly was widely reported: “This course has taught me so much, in particular more confidence in communicating with patients regarding end of life issues. I have learnt different phrases to use during communicating with palliative patients, etc.”

 One participant referred to the value of communication skills in getting “the wording correct” and gave an example of how this has helped in discussion with families surrounding anticipatory clinical management plans for care home residents, especially in light of the negative media coverage at the time: “I think it has helped me get my wording correct. It is so important to get the language right when you are explaining to patients and families. I have been doing a lot of difficult conversations while developing ACMPs (Anticipatory Clinical Management Plans) for care home residents without capacity. I’ve felt so much more confident in how I explain things to family members especially during Covid-19 and with how the media phrases things.”

The provision of consistently good end of life care is only possible if the workforce delivering the care is skilled, confident, and able to apply the principles of compassionate care to every day practice. This course was running during the peak of the pandemic and it was valuable to see how participants used the opportunity to put the theory from the course in to the clinical setting during a time of crisis. It was encouraging to get this snap shot picture of how the skills were having an impact on both patients and families. The area of communication, in particular how to explain to patients and families the process and symptoms of dying, was invaluable.

Confidence in using clear and correct language to ensure patient and families understood what was happening was key. Importantly, in the Covid-19 pandemic, there was often only one chance to get it right. The value of an educated workforce caring for the dying, and ensuring optimal care, is vital and even more so at the current time. The absolute need for palliative and end of life care in this pandemic, was recognised by the Lancet editorial, and education has to be embraced.

For further information on the course visit Edge Hill University