End of Life Care: Putting personal experience first
Tony Bonser Chair People in Partnership The National Council for Palliative Care Member spoke at today’s Improving End of Life Care conference on:
• ensuring engaged, informed individuals and carers
• improving information about what to expect at the end of life
In his presentation Tony reflected on his experience following the death of his son and made the following points about what patients at end of life want:
- No patient is ever in total isolation. All are members of a group bound by emotional and family ties. How one member is treated affects everyone.
- Treat patients as people, not diseases, diagnoses or conditions
- Patients and carers want to be listened to, not just treated or talked at.
- Patients at or near end if life need to have a degree of control restored and to be given, where possible, a choice
- Two-way genuine communication is essential. In the emotional context of discussions about end of life issues, communication is often difficult and misunderstandings can occur on both sides. The need to understand and to be understood is a deep and vital one.Part of control is being involved in decision-making. Thus is equally important for carers/relatives and patients. Assumptions made by professionals can be very far from the mark.
- The best communication is person to person, not professional to patient.
- "You matter because you are you and you matter until the moment you die.” Cecily Saunders
Tony’s full presentation is available for download at the end of this page.
Following the death of their son, Neil in 2009, Tony and his wife Dorothy became fund-raisers for Macmillan Cancer Support, being awarded the Douglas Macmillan Volunteer Award in 2012, and members of the National Council for Palliative Care (NCPC) and the Dying Matters Coalition. They are now North West Local Champions for Dying Matters.
Tony is a trustee of NCPC, for whom he chairs the People in Partnership Group. He speaks and writes on end of life care issues, and campaigns for better communication between professionals and patients. He is quoted in various books on End of Life Care, and in reports from Macmillan Cancer Support and the Royal College of Physicians. He has broadcast on local and national radio and has appeared on Granada Reports and BBC Breakfast, talking about EoLC issues. He is a member of the Independent Review Panel for the Liverpool Care Pathway, and of both the Voices and the “Find your 1%” initiatives.
He is currently co-writing a Peer-education programme for spiritual support for those approaching the end of life, their carers and those bereaved, and delivered workshops on this subject in Summer 2014 for the Northern New England School of Religious Education. He has worked with Help the Hospices to develop a view of the role of hospices in the future.
Both he and Dorothy work as volunteers for their local hospice, where he is a trustee. Both are driven by a desire to validate Neil’s life and death by working for better end of life care.
Future events of interest:
Improving Patient Experience & Experiences of Care
Tuesday 16 June
Hallam Conference Centre, London
Improving End of Life Care
Legal Issues in End of Life Care Masterclass
Download: Tony Bonser full presentation20 May 2015