Involving the public in making difficult decisions was a key conclusion from our CLAHRC South London research on fair commissioning of health care.
But getting people to explore these issues as a citizen, rather than as a patient is challenging. Doing this, in the timescale required, and abiding by social distancing guidance, without causing alarm is going to be very difficult, but needs to be addressed now. The ARC will be considering – along with others interested in maintaining the important contribution of patient and public involvement (PPI) to research, policy and practice – how best to work together going forward in such a rapidly changing landscape.
NICE has just published critical care guidelines that have been produced in collaboration with NHS England and a cross-specialty clinical group, supported by the specialist societies and Royal Colleges. The NICE guidance does not categorise potential patients for critical care by age, but instead asks doctors to score patients on a nine-point ‘clinical frailty scale’.
But already these have caused controversy as they were considered discriminatory to people with disability. Clarification has subsequently been issued by the Specialised Clinical Frailty Network that:
…the CFS has not been widely validated in younger populations (below 65 years of age), or in those with learning disability. It may not perform as well in people with stable long-term disability, such as cerebral palsy, whose outcomes might be very different compared to older people with progressive disability. We would advise that the scale is not used in these groups. However, the guidance on holistic assessment to determine the likely risks and benefits of critical care support, and seeking critical care advice where there is uncertainty, is still relevant.
NICE has said that this will be reflected in an updated version of its guidance.
There is also new guidance for social care services being produced, which the ARC’s social care theme is helping to inform. Professor Jill Manthorpe, who leads the theme, has led a rapid review for the Department of Health and Social Care of international social care policies and regulations responding to COVID-19.
All of these guidelines will only deliver fair decision making if they are implemented consistently across the country and still need to be interpreted on a patient-by-patient basis. This means having locally relevant protocols that have been developed in an open and inclusive manner though a rigorous process. Staff will need to be trained in their use and supported when the tough decisions are being made.
To explore the ethical challenges that we are facing I have re-convened the UCL / King’s College London Social Values Group and initiated a discussion group to explore these issues. Already the discussions have highlighted ethical dilemmas, and the tough choices that will have to be made. A set of principles and examples is emerging that we hope will assist clinicians as they care for those suffering with Covid-19.
We are all facing a unique situation. We need to base our healthcare decisions on what has been shown to work, that saves lives and is ethically sound – this applies to individuals, the health service and governments.