European Journal of Palliative Care - 2018

A reflection on the contributions and efforts of the European Journal of Palliative Care and a comment on the relationship and collaborations between the EJPC and the EAPC.

This edition features some important and challenging perspectives on the current predicaments in palliative care – raising questions about where we prioritise our efforts, to what end and how – and all within a context shaped by significant political and economic change and shifts in what people facing end of life want and need.

Over 45 million people are estimated to be trapped in modern slavery across the world with the UK one of the most prominent destination countries in Europe for people trafficking. Despite these shocking numbers, slavery and trafficking are a phenomenon infrequently reported in hospice and palliative care literature. In this case study, Beth Ward describes the end-of-life care for a baby from two days to five weeks old and the concerted support for his mother, who the hospice team believed had been trafficked into the UK.

From 1969 until the signing of the Belfast (Good Friday) Agreement in 1998, more than 3,600 people were killed as a result of violence in Northern Ireland. Brendan O’Hara describes a study that examined whether the Northern Ireland Troubles have impacted those working in palliative care, and whether any such impact has implications for the treatment patients receive.

A social science approach to end-of-life care (EoLC) means paying attention to the social context in which the care of the dying, and death itself, occurs. It is about considering the actions of those involved in EoLC, including the patient, their family and healthcare staff, and the social world in which these take place. Erica Borgstrom, Natashe Lemos Dekker and Sarah Hoare describe what social sciences bring to palliative care, outlining three broad types of contribution social sciences make to understanding such care and helping the practice evolve.

Over the last ten years, the role of NHS ambulance services has adapted considerably, in line with the changing needs of the wider healthcare system. With the evolving priorities in the NHS of managing an increasingly ageing and complex population in the community, ambulance services in the UK now not only play a crucial role in the delivery of urgent and emergency care, but are also required more frequently to provide care in the home and in community settings. Sarah Stead, Shirmilla Datta, Claire Nicell, Richard Smith and, James Hill explain the initiatives set up in two UK ambulance services that have resulted in improved education on end-of-life care among paramedics, using a collaborative approach that is beginning to have an impact at national level.

Palliative care aims to provide whole-person care by relieving pain and other distressing symptoms, integrating psychological and spiritual aspects of patient care, which enhance an individual’s quality of life. The least practiced interventions are those in existential and psychological suffering despite being highly valued by patients. Carolina Vidal, Ana Luísa Gonçalves, Marta Pavoeiro and colleagues explore the concept and creation of a legacy explaining the techniques and benefits – both physical and spiritual – for both patient and carer/family.

Many patients, family and staff use the word ‘traumatic’ when discussing end-of-life experiences. As with many terms we have considered in this series, ‘trauma’ and ‘traumatised’ mean something more specific in a clinical sense than they do in common usage. What does it mean to be traumatised, and how might we recognise and manage this condition in a palliative care setting?

Although cardiopulmonary resuscitation (CPR) can be life saving in the arrest scenario, there is increasing recognition that it is not always appropriate and, at times, may cause harm. Making appropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, can help avoid unnecessary suffering and uphold dignity in death. Lucy Baxter, Jennifer Hancox, Ben King, Alexandra Powell and Thomas Tolley examine the circumstances in which eight patients with valid Do Not Attempt Cardiopulmonary Resuscitation forms in their medical notes nonetheless received cardiopulmonary resuscitation.

Cicely Saunders first used the term ‘total pain’ in 1964 to describe the intertwined physical, psychological, social and spiritual dimensions of pain. This radical departure from the previous understanding of pain as purely physical provided a new interdisciplinary concept that transformed medical understanding of suffering. This concept was also critical in forging the specialty of palliative care. Marian Krawczyk and Naomi Richards propose that a decades-long lack of inquiries into the concept of total pain has led to a knowledge gap and disparity in understanding between clinicians, and that a deeper understanding of total pain is a priority for the evolution of palliative care practice and policy.

The original concept of the Guy’s and St Thomas’ Hospital Palliative Care Team was conceived in the fertile environment of St Christopher’s Hospice in the 1970s. Thelma Bates, Shaheen Khan, Andrew Hoy, Mary Baines and Barbara Saunders recount the story of Guy’s and St Thomas’ Palliative Care Team; how it grew from its humble beginnings and now celebrates its 40th anniversary.

Modern medicine has become so entrenched with the requirement for evidence, skills, competencies, outcomes and conformity that the concept of healing has been almost entirely forgotten. Viv Lucas investigates healing and what it means both as a concept generally and to palliative care specifically.

The Helix Centre, a healthcare innovation lab within St Mary’s Hospital in London, is tackling some of the most pressing problems within healthcare. Here Ivor Williams outlines some of the challenges and initiatives the Helix Centre has faced within end-of-life care; a field ideal for a human-centred approach and a specialty that covers all aspects of humanity. Some people have a clear view of how they wish to be cared for at the end, many do not. Care and treatment at the end of life can be complicated, making an individual’s wishes harder to deliver. While the UK leads the world in palliative clinical practice, with decades of pioneering research and a robust foundation of evidence, when it comes to adopting innovative practices and technology palliative care can often lag behind compared to other disciplines.

P.S. I Have Cancer is the raw and incredibly human account of the life of Dr Mark Sims, a junior doctor with stage 4 melanoma. Mark’s story begins at his diagnosis, days before his 27th birthday, and ends with a chapter written by his mum, Sue Sims, giving life to the future he’d never have. It closes with a final letter written by Mark's fiancé, Georgie, for his memorial service. What could be a tragic read is not. Instead of being floored by this prognosis, Mark drew light from dark, using his story to affirm who he is and what he loves: science, Europe, Center Parcs, family, friends and Georgie – and also to air his bugbears: Brexit, alternative medicine, and, indeed, the spelling of Center Parcs. The result is a bridge between memoir and a love letter to, well, everything.

She was 64-years-old, but looked markedly older. The metastatic cancer had ravaged her body. She lay in her bed, curled, motionless, covered by a soft pink blanket. Her ‘comfy blanket’, she called it, now old and mangled, had been with her since childhood and seemed to somewhat ease her pain. Her nephew, perhaps in his early twenties, ushered me into her room. The curtains hindered any sunlight making it difficult to see at first. A fan on the wall lay static, the blades full of reddish dust. The smell of dettol antiseptic was overpowering. Sayed K Ali’s touching account of daily palliative practice in Kenya highlights the current state of the field in sub-Saharan Africa and the need for further and continual change; both in attitude and service provision.