In the the last two weeks, RADIANT produced two guidance documents People with intellectual disability and mental health/ behavioural problems: guidance on COVID-19 for in-patient psychiatric settings and People with intellectual disability and mental health/ behavioural problems: guidance on COVID-19 for community settings .
Today we launch our next guidance document titled COVID-19 and People with Intellectual Disability: Guidance on Advances Planning for Treatment Escalation, Ceiling of Care, Palliative Care and End of Life. Historically, there have been many instances of intellectual disability being recorded as a rationale for a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order. When the NICE rapid guidelines on access to critical care suggested the use of the Clinical Frailty Score (CFS), an instrument that would have systematically disadvantaged people with an intellectual disability, there was widespread concern. Following high profile public campaigning from many stakeholders, NICE amended the guidelines to make clear that the CFS should not be applied to this group.
However, many remain worried that in busy general hospitals during the COVID-19 crisis, these caveats may not apply and people with intellectual disabilities will be denied equitable healthcare due to incorrect assumptions about their functional level. As has been made clear pithily before, intellectual disability is not a potentially fatal condition and hence the default position should be that people with that condition should get access to the same level of physical healthcare as anyone else in the general population with reasonable adjustments as required by law.
In a few cases where there are additional acquired conditions, there may sometimes be a need for considering carefully treatment escalation, advance care plans, palliative care, end of life and DNACPR discussions. When these happen, it should be within a clear ethical framework. This document provides further guidance to aid that process. As our previous two guidance documents, this too is the result of a consultation process that included professionals from a range of disciplines including those from a range of medical and surgical specialties and experts by experience.
Please do contact RADIANT with your comments and suggestions.
Keep well all of you.
Professor Regi T Alexander
COVID-19 and People with Intellectual Disability: Guidance on Advances Planning for Treatment Escalation, Ceiling of Care, Palliative Care and End of Life.