An edited version of this letter appeared in the Sunday Times on 5 April 2020 (£).
Dear Health Secretary and Ministers, Health Select Committee Chair and Members, Department of Health and Social Care, NHS England and NHS Improvement, and Public Health England,
As health, care, community and voluntary sector professionals with a particular specialism or interest in end-of-life care, death and dying is part of our daily lives.
But in light of the COVID-19 pandemic, it has now become everyone’s business.
Medical professionals will have to make difficult decisions – decisions many will not be accustomed to making in such high-pressure conditions – often with scant knowledge of our patients’ wishes. And due to self-isolation and quarantine measures, our patients may not even have their loved ones at their side to advocate for them.
These decisions will be made much easier for us, and more importantly for our patients and their families, if we have a clear sense of their priorities, concerns and preferences for care and treatment well before they find themselves in a crowded intensive care unit.
The process by which people’s end-of-life wishes are sought, discussed and recorded is known as ‘advance care planning’, a practice that is part of our daily routine. It must now become part of all health and care professionals’ vocabulary and toolkit during this pandemic and beyond.
We ask you, as a matter of urgency, what are you doing to mainstream advance care planning in the health and care service?
This goes far beyond simply knowing the proper procedure for a Do Not Attempt CPR notice. Healthcare professionals in all specialisms, at every level, should be armed with the knowledge and skills they need to sensitively but confidently ‘have the conversation’ with their patients about their priorities, concerns and wishes for the end of life; encourage them to do the same with their families; and, crucially, support them to record their wishes in a thorough advance care plan that can be easily accessed by medical staff.
This should include, if appropriate and in accordance with a patient’s wishes, a Living Will (also known as an Advance Decision to Refuse Treatment or Advance Directive) to refuse treatment in certain situations; an Advance Statement to record their priorities for care; and a Lasting Power of Attorney for Health and Welfare to appoint a trusted person to make decisions for them if they become unable to.
These documents can be completed from the comfort of people’s own homes if need be, with free, specialist support available from charities such as Compassion in Dying, without the need for a solicitor. The website MyDecisions.org.uk guides people through creating a Living Will and/or Advance Statement at their own pace, with further support available on 0800 999 2434.
Not only can advance care planning provide our patients and their loved ones with a greater sense of reassurance and control in these uncertain times, but it will also better enable us to act in their best interests in future and allow resources to be more easily directed to those who most need and want them.
This is indeed an unprecedented crisis, but it also presents an opportunity for you to lead a much-needed culture change in the way society approaches death and dying, enabling us to champion and deliver truly personalised care at the end of life.
Dame Barbara Monroe, Chair, Compassion in Dying, and;
Dr Alison Pittard, Dean, Faculty of Intensive Care Medicine
Dr Daniele Bryden, Vice Dean, Faculty of Intensive Care Medicine
Dr Joe Cosgrove, End of Life Working Party Chair, Faculty of Intensive Care Medicine
Dr Chris Danbury, Consultant Intensive Care Physician
Professor Ravi Mahajan, President, Royal College of Anaesthetists
Dr Anushka Aubeelack, Intensive Care Anaesthetist
Dr Paul Teed, Emergency Medicine Physician
Professor Emeritus Sam H Ahmedzai, Retired Palliative Medicine Specialist
Dr Mark Taubert, Palliative Care Consultant
Dr Rachel Clarke, Palliative Care Consultant
Dr Nikki Pease, Palliative Medicine Consultant and Clinical Lead Serious Illness Conversation (SIC) Cymru
Dr Arun Bhaskar, President, British Pain Society
Dr David Nicholl, Consultant Neurologist
Dr Dan Thomas, Geriatrician
Professor Raymond Tallis, Retired Geriatrician, Neuroscientist and Philosopher
Professor Peter Armstrong, Past President, Royal College of Radiologists
Dr Jacky Davis, Consultant Radiologist
Professor Aneez Esmail, GP and Professor of General Practice
Sir Professor Sam Everington, GP and Barrister
Professor Trish Greenhalgh, GP and Professor of Primary Healthcare
Dr Linda Dykes, GPwER and Consultant in Emergency Medicine
Dr Zoe Norris, GP
Dr Sarah Jarvis, GP and Broadcaster
Dr Rosemary Leonard, GP and Broadcaster
Dr Dawn Harper, GP and Broadcaster
Professor Diane Playford, Consultation in Neuro-rehabilitation
Dr Liz O’Riordan, Retired Breast Surgeon, Author and Broadcaster
Professor Adrian Newland, Past President, Royal College of Pathologists
Amanda Cheesley, Executive Coach and Retired End of Life Care Nurse
Kate Masters, Campaigner and Family Member with lived experience of end-of-life decision making
Professor Martin Green, Chief Executive Care England
Lorraine Foley, CEO, Professional Record Standards Body
Professor Celia Kitzinger, Co-Director, Coma and Disorders of Consciousness Research Centre, Cardiff University
Professor Jenny Kitzinger, Co-Director, Coma and Disorders of Consciousness Research Centre, Cardiff University
Professor Sue Wilkinson, Chair, Advance Decisions Assistance