About the Author:
Professor Fiona Rawlinson is a Consultant in Palliative Medicine in Cardiff UK, and Programme Director for the Cardiff MSc programme.
She is a poet, a musician and an artist, all of which can help to share the stories of palliative care.
From the earliest legacy left by our inspirational pioneers, palliative care comprises so much more than a single discipline. We deal with one of the most significant of human frailties – that moment when the heart takes its last beat and stops – forever. Palliative care recognises that moment as inevitable, significant and focuses on the living that can take place until that last moment arrives as well as the quality of death and the subsequent bereavement of families and carers.
Across 30 years in palliative care, I have been lucky enough to witness miracles – people achieving acts or personal significance and peace despite their conditions, and families previously disparate, finding some unity and common ground from which their grieving journey begins. Even when there are no miracles and life and death have been challenging, the very fact that palliative care has staying power can be what families remember. We are the people that can ‘be’ alongside that person and that family; we are not frightened to think about, or talk about, dying – and this can be our most important gift and work. In the words of Dame Cicely Saunders, we can be ‘untidily about’.
Yet, we are providing care in an ever-changing world. Resources may be scarce, time nonexistent and the pressures of caring in a world that continues to live and strive for ‘cure’ exhausting, but that moment when the heart stops, remains universal. There are far, far in excess of people needing palliative care than those with any education or training to provide it. The World Health Organisation’s (WHO) current figures cite an estimated 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care each year and globally only about 14% of people who need palliative care currently receive it. [WHO]
We do, however, have a most powerful resource – people. And with people come creativity, innovation and connection. As a result of the explosion of technology during the COVID-19 pandemic we can be connected globally on an unprecedented scale. We can share ideas, education, and information across continents. We can share stories of things that work and our lessons from things that don’t. We can share compassion and care, contributing to the resilience and strength of our teams.
Innovations have shaped our delivery of care – from physical equipment such as syringe drivers, to web based virtual resources and artificial intelligence. Expanding horizons beyond cancer has brought us into contact with other specialties with their interventions, some of which may be beneficial for symptom control in patients needing that palliative care approach. Using quality improvement models, we can build services and processes that will be sustainable yet adaptable to our constantly changing society.
Innovation has helped education and management – using online platforms for education and team meetings can connect previously remote areas with others – building a community of practice and a community of learning. Most recently artificial intelligence may help us to practise communication skills and experiment without risk to patient safety.
There is huge potential to be creative and innovative in how we educate and share our palliative care skills. Every moment counts – for the patient and their family, and for us sharing palliative care skills with colleagues and caregivers. So, an opportunistic conversation with a single other person can empower understanding of a palliative care approach – and through small group working, virtual meetings, on line learning and large lecture hall events, sharing palliative care knowledge, skills and attitudes is our most effective way to educate.
Creativity shapes our delivery of care – whether this is in the care setting and making that space the best it can be for the person – or the stories that our patients and families share which can help us all to reflect on our own life and death. The power of narrative – whether in word, music or art, remains immense and of significant impact in the society’s understanding of, and preparation for, the universality of death.
We have a real opportunity now to use our resources wisely, keeping our patients central to our thinking. We can create, we can innovate, we can share our developments to prevent unnecessary waste and duplication of time, resources and energy.
Death is universal. It will happen to us, we are an integral part of this journey. With our unique perspective, we are the most effective ambassadors and advocates for palliative care.
References and useful links:
- WHO: https://www.who.int/news-room/fact-sheets/detail/palliative-care
- Institute for Health Improvement