Healthcare Technology Featured Article

April 22, 2021

Georgette Mulheir Explains the Scandal of DNRs, Covid-19, and a Broken Care System

The UK government is coming under increasing pressure to call a public inquiry into its handling of the Covid-19 pandemic.  Whilst the country is amongst the world leaders in rolling out vaccinations, it also has the fourth-highest rate of deaths per capita in the world.  According to the government, 126,000 people in the UK have died of Covid-19 since the pandemic began.  But why did so many people die? And were any of these deaths preventable?  Georgette Mulheir, a global expert on the impact of institutional care on health and life chances, asserts that any public inquiry must ask serious questions about Britain’s system of care for older people and adults with disabilities.  At least 20% of those who died were living in care homes, whilst care home residents make up only 0.6% of the population.   Although older people are at a higher risk of dying from Covid, the deaths in care homes are still wildly disproportionate.  The UK is not alone.  Almost half of Sweden’s Covid deaths were in care homes.  In New York State, the figure is 30%.

According to Mulheir, this phenomenon may relate to deep-seated discriminatory attitudes. “One of the most disturbing aspects of the way Covid deaths are reported in the UK”, she says, “is that the deceased are routinely referred to as ‘older people’ or as people with ‘a disability or underlying health problem’”.   The unspoken implication seems to be that these people are expected to die in any case.  “Equally concerning”, she continues “is the sense that these lives are of less value than young, healthy people.”

Most of the care home deaths are of older people, but disturbing news is emerging of disproportionate Covid deaths among adults with learning disabilities – those aged 18 to 34 with are 30 times more likely to die of Covid than their peers of the same age.  One doctor observed that “the biggest factor associated with the increased rate of death was living in care homes or residential settings.”

Georgette Mulheir believes that any inquiry must take account of the history of discrimination against people with disabilities. “If we do not understand the past”, she says, “we miss the clear reasons behind what appear to be inexplicable errors of policy and practice.”

Why would young people with learning disabilities be more likely to die of Covid-19? One reason that seems obvious is rarely mentioned in reporting.  Large groups of people are not meant to live together in one building.    Lack of resources and limited staff time make it impossible to provide individualised care for each resident.  So much activity is done communally that, if one person gets sick in an institution, the disease spreads like wildfire.

According to Georgette Mulheir, “across the world, institutional settings have long been associated with higher mortality rates.  But there is a tendency to imagine the deaths are due to the illness, disability or frailty of the residents, rather than the institutional system itself.”  This is rarely the case, says Mulheir, who has led programmes to reduce mortality rates in institutions in many countries – in a baby institution in Sudan, where the rate was over 80%, in Romania, where some institutions had mortality rates of 30% to 40%.  “In nearly all cases, deaths were due to neglect or abuse. Changing the approach to care reduced mortality dramatically.”

In one institution for children with disabilities in Bulgaria, Mulheir says, “we asked the director why the mortality rate was so high and she replied, ‘You must understand, these children are sent here to die.  The average life expectancy of one of these children is 11 years.  If a child lives longer, we feel we have done an exceptionally good job.’”  However, when Georgette Mulheir investigated, she found that most of the deaths had no direct relation to disability. Instead, the children were dying from malnutrition. Observing mealtimes showed that, on average, each child was given 1 minute 20 seconds to eat their meal.  Mulheir’s team worked to change the way personnel fed children, reducing the mortality rate almost to zero.

According to Georgette Mulheir, such pseudo-scientific explanations for high death rates in institutions are not new.  A belief that people with disabilities intrinsically have a shorter life expectancy than their peers, coupled with a discriminatory judgment that their lives are of less value has, in many countries, led to warehousing people with disabilities in institutions and waiting for them to die.  Once removed from their families and hidden away from society, in some circumstances, this led to a suggestion that curtailment of life might be expedient, even merciful.

Georgette Mulheir Reveals Legacy of the Eugenics Movement in Social Care Today

The Eugenics movement was born nearly 150 years ago but reached the height of its influence between the two world wars.  One stated aim was to improve the health of the nation by ‘breeding out defects’, isolating people with disabilities and ensuring they could not procreate.  UK scholars and politicians played a leading global role, with London hosting the first International Eugenics Conference in 1912.  The audience, including Winston Churchill and Lord Balfour, was addressed by Charles Darwin’s son, who went on to lobby the government to arrest people deemed as ‘unfit,' then segregate them in colonies or sterilise them.

Those early Eugenics-inspired practices still prevail in care systems today. In her 30-year campaign to end institutionalisation, Mulheir has encountered many women with disabilities who were sterilised against their will while they were children living in institutions. “The simplest way to control people with disabilities was through institutionalisation,” Mulheir asserts.  “Across Europe and in the United States, at various points in the 20th Century, enforced sterilisation of children and adults with disabilities in institutions was commonplace.”

At the same time as the UK Eugenics movement grew in strength, Germany was already going one step further, with medics and lawyers joining forces to argue for the extermination of people with disabilities.  The 1920 essay, “Permitting the Destruction of Life Unworthy of Life” is seen by many as a blueprint for the Nazis’ future crimes against humanity.  Dr Ewald Melzer, who directed an institution for children and adults with disabilities, reacted against the claims that disabled lives were unworthy.  He believed it was society’s Christian duty to care for people with disabilities, but he also saw institutionalising them as ideal for carrying out experiments.

In his survey of the attitudes of parents of disabled children, many apparently said that though they loved their children, they would be willing to have the children killed, so long as they were not aware it had happened.   These results were cited by the Nazi regime as a basis for ‘Aktion T4’.  Through this programme, institutions for children and adults with disabilities were transformed into killing centres, starting with newborn babies.  The government compelled midwives to report all babies born with disabilities, then coerced parents to place their children in institutions.  Visits were discouraged or forbidden.  Quickly, medical personnel transformed a programme of institutionalisation into extermination.

Children with disabilities were the earliest victims of Hitler’s programme of mass murder, disguised as ‘mercy killing’.  Mulheir says, “institutions, allegedly set up to provide expert care, killed children first by deliberate starvation, then by lethal injection, with nurses – trained to preserve life – lovingly cradling babies in their arms as the poison was administered.  Later, gas chambers were developed to improve efficiency.”  More than 5,000 children were killed in the network of institutions for children with disabilities, followed by more than 200,000 disabled adults.  And the medical and administrative teams who developed the first mass extermination programme were transferred – together with their killing technology – to set up and manage the death camps of Treblinka and Sobibor.

The Monetary Value of a Life and the Crisis in Social Care

In Nazi Germany, the killing of children with disabilities was also justified economically.  A propaganda campaign demonstrated to the general public the huge expense of keeping disabled children in institutions – suggesting that money could and should instead be spent on ‘healthy’ children. This, despite the fact that most of the children were institutionalised compulsorily and the expenditure, was therefore unnecessary.

Whilst the Eugenics movement in the UK did not result in extermination camps, its impact still resonates today.  In February 2021, University College London (UCL) issued an apology for its role in promoting the pseudo-science of Eugenics.  As the first University in the world to set up a Eugenics Department, it provided academic cover, legitimising theories of race and disability that directly affected policy and practice globally.

As a result of the horrors of the holocaust, the popularity of Eugenics began to wane in the 1940s, but John Maynard Keynes still claimed that Eugenic theories were fundamental to planning the economics of the Welfare State.  According to Georgette Mulheir, “this partly explains why our social services still, stubbornly, focus on the failed policy of excluding and institutionalising older people and those with disabilities, rather than including them in our homes, families and communities.”

Today in the UK, debates around the crisis in social care focus on the high cost of looking after older people and disabled people.  And those costs predominantly relate to institutionalisation.  Georgette Mulheir has carried out extensive research on the costs of various kinds of care across the world.  She said, “across low, medium and high-income countries, it is always more expensive to care for a child with disabilities in a poor-quality institution that harms their health and development than to support them to live in family care, where their health outcomes, happiness and life chances are greatly improved”.

Right now, bodies representing UK care homes are asking the government for more financial assistance.  Due to the pandemic, they are only running at 70% occupancy and because they receive their funding per resident, their income is down considerably, whilst costs have increased.  Mulheir suggests that before the government automatically uses tax-payers' money to bail out a profit-making care system, some fundamental questions should be answered. “Firstly, why are they running at low capacity? It is partially because so many people have died.  But also, precisely because of the high rates of preventable deaths, many families are now reluctant to place their relatives in care homes.  If the industry has failed so spectacularly, why should we bail it out?”

The problem, though, according to Georgette Mulheir, is that we have no alternative. “As a country, we have underfunded home-based care and support systems for families and communities.  We have allowed a harmful institutionalised system to flourish and grow, without questioning whether it is fit for purpose”.  The government, local authorities and families simply have nowhere else to turn for help for people with increasing support needs.

There is no denying that institutionalising people is big business, with the UK spending more than £20 billion annually.  We imagine our modern social work systems have nothing in common with the eugenicists’ vision from more than a century ago, but, in the context of a society where lives are valued according to economic output, many older and disabled people are still segregated, excluded and warehoused in institutions.  And what happens when resources, already stretched thin, reach breaking point?  According to Mulheir, “the economic imperative takes over and the rights, needs and wishes of individuals become secondary, with terrifying results.”

Blanket DNARs – The Logical Next Step

Throughout the pandemic, disturbing reports appeared in the UK press that led to an official investigation into blanket Do Not Attempt Resuscitation orders (DNARs) in care homes for older people.

Within weeks of UCL’s public apology for its role in promoting Eugenic theories, the Care Quality Commission issued its damning report.  It was indeed the case that, in some care homes, DNARs were entered into the notes of all residents, without consulting the person or their family.

According to the report, in at least one case, a family doctor sent letters to families, stating, “Dear [care home resident relative]” adding that after looking at medical notes and using a computer algorithm, “I realise there is less than one percent chance of resuscitation being successful.  For this reason, I have signed a do not resuscitate order in their nursing notes”.

It appears a similar approach has been taken to people with learning disabilities.  According to Mencap, “Throughout the pandemic, many people with a learning disability have faced shocking discrimination and obstacles to accessing healthcare, with inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices put on their files and cuts made to their social care support.”

As yet, there is no clear analysis of Covid deaths in care homes.  But some over-stretched medics and civil servants appear to be using economic arguments and pseudo-science – this time in the shape of a computer algorithm – to decide who lives and who dies.   How far these approaches have resulted in preventable deaths is, as yet, unknown.  “But it is certainly the case”, says Mulheir, “that if we expect older and disabled people in institutions to die, we rarely ask questions when it occurs.” In this context, a public inquiry into Covid deaths must open the doors of residential institutions and find out what really happens inside.

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