Attending the 17th European Association of Palliative Care (EAPC) Congress last month (October 2021) was a welcome reconnection with the global palliative care community after the unprecedented events of the COVID-19 pandemic. Although the congress was held virtually, the presentations, discussions and posters all communicated similar core messages about what COVID-19 has taught us in palliative care provision. They were informative, looking at both healthcare professionals' and patients' experiences during the pandemic. They offered powerful and challenging discourse for everyone present to reflect on their contribution to patient care and the delivery of palliative and end-of-life care to all who needed it. Of importance was the honest fact that COVID-19 had ‘forced’ us to acknowledge a simple truth: that we need to care for each other, rich or poor, black or white, employed or not, living in developed countries or developing countries. COVID-19 showed no discrimination in its assault on everyone's health and wellbeing. Indeed, some groups in society, like black, Asian and minority ethnic groups, were disproportionately affected by the virus, but people from all walks of life were affected, and hundreds of thousands died and continue to die as a result of the infection. The other truth was that whenever COVID-19 affected one person, its impact was felt much more widely and across services.
The EAPC Congress title, ‘Exploring new dimensions’, was appropriate and signalled what we all needed to do going forward: be creative and find new ways of providing equitable palliative care for all, including the paediatric sector. To be successful in developing creative ways of caring, it was important that honest individual introspection and collective reflection took place first, whereby all lessons learned from the pandemic can be clearly articulated, with a view to making a real difference to all patients and families regardless of their backgrounds or where they live.
Focus on the patient
With so many demands and challenges encountered, it is probably easy to forget why we provide palliative and end-of-life care. A timely reminder was offered to always start by focusing on the patient. The patient is the one with the disease, the pain, the nausea, the suffering, the family and social relationships—they are at the centre of care delivery. Focusing on the patient will remind us to apply the essentials of palliative care, such as communication, pain control and any distressing symptoms. This simply means going back to basics, and trying not to complicate the intervention. Too often, we forget to communicate at the patient's level, jargon-free, and provide information at a pace that suits the patient, so that they can understand their illness trajectory and treatment options. It was stressed that communications skills require refreshing regularly. It was interesting to see how restless (perhaps uncomfortable) the audience became when one of the presenters at the congress asked them to go silent for 3 minutes. It was clear that 3 minutes was far too long to be silent, and the presenter's point was that we need silence, which is, yet, so difficult to maintain. In most cases, when we use silence, we are able to listen and fully understand the patients' stories and concerns. We also allow the patient our full attention as they relate their stories. This was another reminder of the essential skills that are so vital in palliative care, as we interact with each and every patient.
It is important to always remember that patients, families and their friends remember how we make them feel, and, as community nurses, it is important that we create a positive feeling for those we care for, especially at the end of life.
One presenter focused on the ongoing inequalities in life and asserted that these inequalities are also experienced in healthcare. The point was that palliative care had, in most cases, missed the opportunity to ensure that people die more equally. One way to eliminate inequality was through values-based practice (VBP) (Loughlin, 2014), which, when applied effectively, helps to reduce, if not eliminate, the negative aspects encountered in all the social ‘isms’, such as sexism, racism and ageism. Loughlin (2014) argued that understanding and practicing VBP is pivotal to determining what influences our care decisions and who gets access to services. The take-home message from this is that we need to focus on the patient's needs and concerns (not who they represent) and deliver palliative and end-of-life care support tailored accordingly. In this way, equality is guaranteed, and every dying person can achieve a dignified death.