|By||Dr Magnolia Cardona and Nurse Ebony Lewis|
What do we want for ourselves and our loved ones, ‘when the time comes’? Jointly written, collected and curated by a doctor and nurse working in end-of-life care, this collection of personal experiences (of families and healthcare professionals) throws light on social, cultural and individual influences on what is expected but not necessarily wanted and when we need to start asking ourselves and our loved ones – and our patients – about their preferences. In particular, the issue of futile over-treatment getting in the way of peaceful opportunities to be with friends and family and say good-bye arises again and again. Far more universal and pressing than ‘the right to die’ is the right to have a non-medicalised and not over-extended, good quality end-of-life.
Dr Magnolia Cardona is a former GP, public health practitioner and current associate professor of health services research. She is a passionate advocate for the rights of older people dying of natural causes to not be over-treated with low-value care and instead have a dignifying end of life through aligning treatments with patients values and planning in advance. She arranged her own first advance care directive before the birth of her child by elective caesarean, as she envisaged the possibility of things going wrong and had the urgency for planning what clinicians and her family should do if she couldn’t decide. She now conducts research with patients, families and clinicians on ways to improve the end-of-life experience for all.
Nurse Ebony Lewis is experienced in emergency medicine and geriatrics, a skills combination that made her highly aware of the needs of older people to be treated compassionate at a place of their choice including their own home rather than in the emergency department environment or the intensive care unit. She loves talking to older patients, visiting them at home for their health assessments, and helping them express their values and preferences before they become critically ill. She was awarded an international prize for her research into advance care documentation and is now undertaking her PhD studies on frailty.