Page 24 - Community Living Magazine 34-3

ethics

Power and prejudice: the deep roots

of failure in medical ethics

In the last issue, Simon Jarrett examined how Covid exposed the
medical profession’s antipathy towards learning disability. Now,
he asks, where did these attitudes come from – and why?

he medical profession’s endemic At the time of writing, this programme their watch, the initial decision to exclude
ethical problems in relation to has been enormously successful and an many people with learning disabilities
Tlearning disability have continued to outstanding example of first-rate public from the top prioritisation categories was
be starkly demonstrated as the health practice applied to an entire made by senior doctors on the Joint
coronavirus pandemic continues. population. It has sought to prioritise those Committee on Vaccination and
As I argued in my last article, these thought to be the most at risk because of Immunisation (JCVI).
issues are not new – they have been age and underlying health conditions. It was not the case in England that Matt
around the profession for more than two However, people with learning Hancock, the health minister, was given a
centuries and across the NHS since its disabilities, despite dying at six times the prioritisation list and asked for people
inception in 1948. rate of the rest of the population from with learning disabilities to be removed.
The pandemic, however, has shone a Covid (and at 30 times the rate in younger The JCVI doctors did not include them on
light on these problems and brought them age groups), were not included en masse the list in the first place despite the
more to public attention than before. in the initial prioritisation list. After evidence of their own statistics.
As feared, the use of do not resuscitate lobbying from the Down’s Syndrome There is a disturbing parallel between
(DNR) notices against people with Association, people with Down syndrome the DNR notices and the initial non-
learning disabilities has persisted in were included from the outset. prioritisation in the vaccine programme
hospitals throughout the pandemic, as After further campaigning, people – in both cases, potential life-saving
will be confirmed in a forthcoming report categorised as having severe or profound interventions were withheld from people
from the Care Quality Commission. disabilities were added to the list. The with learning disabilities.
These orders, formally known as do not medical establishment finally caved in on The irony is that, in the case of DNR
attempt cardiopulmonary resuscitation 25 February – three months after the notices, treatment is withheld because the
notices, are intended for people who are roll-out began – and added the rest of the learning disability is seen as a vulnerability
too frail to benefit from this form of learning-disabled population to the that makes the person unfit for treatment
resuscitation. However, they are often priority list (around 150,000 people). while, in the case of vaccination,
imposed on people with learning This happened only after intensive, underlying vulnerability is denied.
disabilities simply on the grounds that high-profile lobbying from well-known
they have a learning disability, leading to public figures who have learning-disabled The shadow of the past
unnecessary and avoidable deaths. relatives, such as BBC radio DJ Jo Whiley, In my previous article, I described how the
The issue was raised well before and campaigning organisations. past casts a long shadow over medical
coronavirus, and the Department of Health It is important to note that, while practice in relation to people with
and Social Care has explicitly condemned government ministers are ultimately learning disabilities today.
the blanket imposition of DNR notices responsible for the decisions made on It was from the time that medical
against groups of people. Nevertheless, practitioners began to take an interest in
NHS clinicians have continued with the learning disability, or idiocy as it was then
practice throughout the pandemic. called in the 19th century, that the
Unless a lasting power of attorney for exclusion of this previously assimilated
health or an advance directive (also called group of people began to take place.
an advance decision) has been made Medical men – and they were all men –
stating otherwise, any decision to led the asylum system that condemned
withhold life-sustaining treatment is people to a life behind institutional walls,
effectively made on the spot by the lead separated from family and neighbourhoods.
clinician in charge of a person’s care, once There then followed a long line of
they are deemed to lack mental capacity. medically inspired moves to eradicate
The problem is therefore not only an people with learning disabilities from Stethoscopes; London Stereoscopic Company; both Wikimedia Commons
institutional one within the NHS in allowing society altogether. These included the
such practice to occur, but also an individual eugenics movement, the Mental
problem emanating from the clinicians Deficiency Act of 1913, campaigns for
who choose to impose such orders. euthanasia (successful in Nazi Germany),
A further ethical problem has arisen in sterilisation and a litany of neglect, abuse
the battle to prioritise all people with and dehumanisation in medically run
learning disabilities in the UK Covid Utilitarian thinker John Stuart Mill was in favour institutions, which persisted until the end
vaccination programme. of segregating “fools” from the rest of society of the 20th century.

24 Vol 34 No 3 | Spring 2021 Community Living www.cl-initiatives.co.uk