Learning from lived experience of heart failure
Gilbert Wheeler, Patient Ambassador for Cardiomyopathy UK, BHF, NHS congenital heart services, Public Health England Heart services, Kings Fund heart services, NHS citizens’ assembly, NHS Patients voice, and CQC, Operations Officer, Cardiovascular Care Partnership
Pre-event abstract
This presentation explores end of life care with particular reference to heart disease. The presentation will begin with a brief personal biography of my experiences as a patient and patient advocate. We will then explore what I call the ‘Caring view’ of end of life care, and highlight its shortcomings. I will then promote what I call the ‘Patient’s view’, based on the wants of the patient in their end of life care. The presentation will conclude with some examples of what the ‘Patient’s view’ is all about, and why it should be promoted. I will conclude that end of life care is best understood as catering to the wants of an individual as a person, instead of as a patient.
"Patients can feel trapped. Drs talk in a certain way that can confuse patients. Conflicts can arise and this usually happens between the family of the patients and the Doctors. End of Life care should focus on the patients view – Just listen to the patient. If End of Life patients want something – try to let them do it!"
The End of Life Needs of people with Heart Disease
Dr Ros Taylor MBE, Palliative Physician, The Hospice of St Francis, Member, The Lancet Commission on the Value of Death, Former Clinical Director, Hospice UK
Dr Ros Taylor became Clinical Director at Hospice UK, a national umbrella charity for the hospice movement, and most recently has been back at the bedside as a palliative physician in the busy palliative care team at the Royal Marsden and Royal Brompton Hospitals in London. She lectures nationally and internationally. Dr Taylor now has over 27 years experience in palliative care and was awarded an MBE for Services to Hospice Care following a nomination by a patient. She is contributing to the new Lancet Commission on the Value of Death and is a Senior Advisor to the Montreal 2020 International Congress on Palliative Care.
"Heart Failure – We need to come up with a different word as the implications the word failure has on a patient is not good. We need to make people feel safe. The link between mind, body and spirit is something we need to take note of. Death anxiety is something we don’t talk about very much – after 9/11 when people were feeling extremely anxious, they were asked what helped – the answer was communication and connection. How people die remains in the memory of those who live on"
Full PowerPoint Presentation
Best Practice End of Life Care for Heart Failure
Dr Karen Hogg, Consultant Cardiologist, NHS National Services Scotland, Palliative and Supportive Care Co-ordinator, Heart Failure Hub Scotland
Karen Hogg is an Associate Professor at Glasgow University where she also gained her degrees in Science and Medicine in 1994 and 1999 respectively. In 2002 she undertook a British Heart Foundation Junior Fellowship and went on to achieve a postgraduate Doctor of Medicine degree in 2007, also conferred by the University of Glasgow, for research into heart failure with preserved systolic function. Her subsequent specialist clinical training was based in Glasgow and in 2010 she took up the post of consultant cardiologist with a specialist interest in heart failure, and palliative care based at Glasgow Royal Infirmary. In this unique post she is the clinical lead for heart failure in North East Glasgow, chair of the heart failure MCN in Greater Glasgow and Clyde and the cardiology clinical lead for the Caring Together programme (joint funded by British Heart Foundation, Marie Curie Cancer Care and Greater Glasgow and Clyde). Karen is an invited member of the Heart Failure Association of the ESC joint Task Force “Palliative Care in Cardiology” and is also the medical lead for the National Heart Failure & Palliative care education & implementation programme funded by the Scottish Government and the British Heart Foundation in addition to the medical lead for the West of Scotland Heart Failure & Palliative care education programme funded by Hospice UK.
"Integrated Cardiac Palliative care model needs to be a flexible model that’s responsive. The emphasis is very much on trying to improve the patients quality of life. What does best practice look like? – Identify palliative needs – Make assessment – patient centred care plans – network of care – communication & coordination"