Dr. Christian Ntizimira Founder/Executive Director of the African Center for Research on End-of-Life Care (ACREOL) Rooted in the spirit of Ubuntu – “I am because we are”- this talk explores the importance of community, culture, and shared humanity in reimagining palliative care in African contexts.

Rather than viewing care at the end of life as an individual journey, Ubuntu invites us to see it as a collective expression of dignity, purpose, and connection. Drawing from experiences in Rwanda and across the continent, I will reflect on how honouring “what matters most” is deeply informed by communal values, ancestral wisdom, and the enduring bonds that shape our lives, offering a more compassionate and culturally grounded approach to advance care planning.

Dr. Christian Ntizimira is the author of “The Safari Concept: An African Framework on End-of-Life Care” and Founder/Executive Director of the African Center for Research on End-of-Life Care (ACREOL), a non-profit organization to bring socio-cultural equality through “Ubuntu in End-of-life Care” in Africa. He is a Fulbright Alumni and graduated from Harvard Medical School, Department of Global Health and Social Medicine. Dr. Ntizimira is also an alumnus of the Kofi Annan Global Health Leadership programme, which aims to bring selected Africans to strategise, manage and lead public health programs that will transform public health in Africa.

‘The Unplanned End: What happens if you die without family or money?’ Talk by Evie King is a Council worker and Bestselling author of “Ashes to Admin” .

Evie King arranges funerals for those who die with nobody to arrange their funeral. At first her talk will seem out of place at a conference about planning, as she recounts stories wherei n the chaos of life just cut through. From estrangement separating families, dementia making partners forget one another, to simply outliving everyone, she has seen how we cannot always master our end.

However, this is not an entirely hopeless capitulation to fate, because whilst Evie uses these examples to try and smash that three in the morning fear about the archetypal lonely death, showing her people as not outliers but just ordinary people to whom life happened, her job often takes place in the confusion that arises from a lack of wider planning, so she is still very much an advocate for control, and has made it her mission to get people ready for death well ahead of time. She will invite you to rethink your ideas around life, death and legacy and to get organised and therefore empowered to enjoy the important bit, your life. ‘Evie’ is a council worker and writer. A former stand-up comedian, she has always written short form pieces in the margins of her various day jobs, contributing to New Humanist, Guardian Comment is Free, BBC Comedy and Viz Comic. After moving to the seaside and going part-time she had more time for writing and completed her first book ‘Ashes to Admin’. The publication is about her job arranging council funerals, under her pen name. She has just completed her second book about planning and acceptance, which is with her agent for submission to publishers.

In this talk we’ll consider why some people want to refuse treatments in advance of losing capacity to do so, and look at some real examples of Advance Decisions to Refuse Treatment (ADRT) and consider what it takes to meet the statutory requirements for a valid and applicable ADRT.

I’ll set this in the context of practical concerns that are often raised (e.g. how will anyone know I’ve made one?) and recent legal cases in the Court of Protection where ADRTs have run into problems. We’ll end with specific focus on lessons for healthcare professionals.

Title of talk: ‘Advance Decisions to Refuse Treatment: Learning from examples’ Celia Kitzinger is an Honorary Professor in the Law School at Cardiff University, where her research focuses on life-sustaining treatment decisions in the context of Coma and Prolonged Disorders of Consciousness. She also helps to run the Open Justice Court of Protection Project which supports understanding of the Mental Capacity Act 2005 and the role of the court. She also has direct personal and family experience of ADRTs which she’ll draw on in this talk.

Title of talk: ‘Life, death and organ donation: A case example of the grief and learning following this end-of-life experience’. This presentation explores the grief and life adjustments of a family who agreed to organ donation following their daughter’s sudden death from a car accident. Vicki Caldwell shares her experience, highlighting the end-of-life care and how clarity about her daughter’s organ donation wishes empowered the family.

The family’s ongoing relationship with healthcare professionals and their focus on organ donation created hope and a positive legacy. The case emphasises the importance of aftercare services in helping families navigate trauma and grief. Bereavement support, guided by the family, can shape grief into a meaningful, comforting experience. Sharing diverse, lived experiences offers valuable insights for others and serves as an active grief strategy for those sharing their stories. Vicki is an OU regional Social Work academic. After the sudden death of her daughter in 2016, she developed an interest in “active grief”—strategies that help people cope with loss and finding new hope.

Vicki created resources on end-of-life care, organ donation, and grief, and founded the FEES Fund, a charity supporting youth enrichment in memory of her daughter. She advocates for organ donation through NHSBT’s “Leave Them Certain” campaign and is involved in research and policy development to improve donor family support. Vicki is a member of the Open Thanatology research group, the North Bristol organ donation committee, and NHSBT’s National Donor Families advisory group.

This session will explore the concept of a Lasting Power of Attorney (LPA) and its role within the broader framework of Advance Care Planning. It will provide guidance on how to assist individuals in creating a Lasting Power of Attorney, how to verify its validity, and clarify common misconceptions surrounding the process. Aimed at healthcare providers, this session will offer valuable insights and practical information, supported by real-life case studies to illustrate key legal principles in action.

Clare Fuller is a Registered Nurse with 30 years of experience in End-of-Life Care (EoLC), having worked across hospices, the community, and acute sectors as a Clinical Nurse Specialist. She has also served at a national level as a Consultant Nurse for the Gold Standards Framework. Clare is a CQC Specialist Advisor for EoLC and a consultant for Lasting Power of Attorney. As the owner and director of Speak for Me, Clare helps organisations enhance their EoLC practices and provides both professional and public education on Palliative and End-of-Life Care, as well as Advance Care Planning. She is a passionate advocate for proactive Advance Care Planning and hosts the podcast Conversations about Advance Care Planning. Clare is also honoured to have recently served as a Commissioner for the Palliative and End of Life Care Commission.

Four Nations Advance Care Planning Panel: National perspectives on Advance Care Planning from experts across the UK. In this talk we examine the terminology, processes achievements and failings. Chair: Clare Fuller (RGN, MSc), Advance Care Planning Advocate, Educator & Coach, Speak For Me LPA.

Panel Members:

• Rhian Matthews, RGN, BSc (1st Class Hons.) Community Public Health, MSc (Dist) Gerontology, Wales.
• Corrina Grimes, Health and Social Care Consultant, Northern Ireland; Atlantic Fellow at the Global Brain Health Institute.
• Jenny Watt, HomeFirst Design & Implementation Manager, NHS Scotland.
• Lucy Pain, Strategic Clinical Lead, Gold Standards Framework, England.
• Dr Idris Baker. National Clinical Lead, NHS Wales