Investigating premature deaths of people with intellectual disabilities: who is protecting whom?

Abstract

In the light of the Corona Virus pandemic which prematurely killed an unknown number of disabled people, the main purpose of this Current Issue paper is to raise questions about how historians can investigate the subject of premature death given the fact that any records which name individual patients are closed due to ‘patient confidentiality’. It makes links between historic failures to investigate premature death, and recent examples, and argues that we need to challenge the blanket assumption that people are protected by having information about them kept confidential.

Keywords:

• Intellectual disabilities
• premature death
• archival records
• COVID 19

Introduction

As I wrote this in May 2020, Twitter was alive with questions about how many people with intellectual disabilities had died of COVID 19. In UK at least, the counting was belated and inadequate, and only happened at all because campaigners made a lot of noise.

This failure to count has a long history. Here I raise the question of how we find out about death in the long stay learning/intellectual disability hospitals which dominated service provision until the late C20. I explain why this matters, and provide evidence to indicate that this is of concern – but its main purpose is to raise questions about how historians can investigate the subject given the fact that any records which name individual patients are closed due to ‘patient confidentiality’.

In the UK, many institutional records perished when the long stay Hospitals closed in the late twentieth century. Those records that remain, if they contain patient names, are closed on grounds of patient confidentiality and data protection. The few institutional records I have been able to access indicate that authorities seemed more concerned to avoid adverse publicity than to investigate premature or unexpected deaths, and act on the findings.

The issue is as relevant today as it was then. We need to know who has died prematurely from the virus, so action can be taken to ensure the same mistakes are not made. To paraphrase Margaret Atwood, history may not repeat, it always rhymes.

Why this matters

Thanks to sustained efforts led by family members we in the UK know a lot about the premature – and too often preventable - deaths of people with intellectual disabilities.

Connor Sparrowhawk died in a bath in an NHS Unit in 2013 because his epilepsy was not taken seriously. He was 18. If Sara Ryan, his mother, had not pursued the issue with great energy, it would have been recorded as ‘natural causes’, not the ‘neglect’ verdict reached by the Coroner (Ryan 2019).

Stephanie Bincliffe died in 2014 after 7 years in a padded cell, during which time she had gained 10 stone in weight. She was 25.

Oliver McGowan, like Connor aged 18, died in 2016 because he was administered drugs to which he was allergic, his pleas and those of his family not to administer these drugs ignored.

In 2016 Joe Ulleri entered hospital with a broken bone, a stay that ended, 3 weeks later, with his death from pneumonia and malnutrition.

We also know that in England people with intellectual disabilities die on average at least 20 years earlier than the average for the population as a whole – and that, unusually – women die earlier than men (CIPOLD 2013).

There is too often an absence of curiosity about these deaths. The sector regulator Care Quality Commission commented

we found that the level of acceptance and sense of inevitability when people with a learning disability or mental illness die early is too common (CQC 2016, 2)

The issue of who died prematurely is again in focus at the time of the Covid-19 pandemic. Residents of ‘care homes’ died in disproportionate numbers: of the 36,000+ UK deaths recorded on the day I wrote this, 10,000 were ‘care home’ residents. Although mainly people of advanced age, inevitably the number included younger disabled people. At the time of writing, no one knows quite how many, or what age they were when they died. Inspections had been suspended, doors firmly closed to outsiders. Debates on COVID-19 in relation to age and ethnicity were many, but none on disability.¹

Asking historical questions

These contemporary issues have prompted me as a historian to ask questions about premature deaths in the past, particularly those which took place in institutional settings. If people are dying unnecessarily today, when thanks to passionate campaigners and the use of social media there is a full glare of publicity, what, I ask, was happening when thousands were living in often remote and impenetrable hospitals. While the past lives of hospital survivors are increasingly well documented we know surprisingly little about their deaths. This may in part reflect a reluctance on the part of institutional survivors to discuss a painful subject.

Similarly, secondary studies remain silent. An important sociological study of two institutions (Morris 1969) provides a damning indictment of standards of care, but has little to say about healthcare. Morris does mention, almost in passing, that 930 persons died in ‘mental sub-normality’ hospitals in 1960 and that half the male deaths occurred under the age of 16 years 8 months, while half the females died before the age 13 years 5 months (74). She does not comment on this startling piece of information.

To illustrate the issues, I cite two examples, the Public Inquiries of the 1960s and 1970s, and unpublished work by two UK academics.

Public inquiries

There were ten public inquiries relating to what were then called ‘mental handicap’ hospitals (Martin 1984).

Although concerned more with individual cases than mapping causes of death across the institution, they give insights into practices which might hasten death – and a failure to be inquisitive about what happened.

The 1969 Ely Inquiry into abuse in a South Wales Hospital noted an ‘unduly casual’ approach to investigating deaths, as for example in the case of a Patient called Emerson:

The whole manner in which the patient’s death was “established” without the attendance of any doctor (and thereafter certified) appears to us to be unduly casual…. The story of Emerson’s death betrays what seemed to us to be an unduly casual attitude towards death at Ely.

(para 78 b)

Following Ely, press interest in conditions in hospitals was stimulated. One of the factors influencing Government to initiate an official enquiry into conditions at South Ockendon Hospital (published in 1974) was the violent death of a 37 year old man with severe learning disabilities in February 1969 after ‘an early morning tumult’ on Beech Ward where 52 men were living. Another patient was charged with the death, but found not guilty. No one was punished for this death, which followed a scandal about a severely disabled man with epilepsy who had been ‘savagely beaten with a stiff hairbrush’ while 2 staff were caring for 51 ‘severely sub-normal’ patient over night in June 1968 (Bingley 1993, Chapter 4 upaginated).

The Official Inquiry took evidence from a State Enrolled Nurse who resigned after 2 months on Willow Ward during which period there had been 7 deaths.

She explained to the Inquiry:

It was getting worse on Willow Ward. The patients appeared to be dying one after the other.

National Health Service 1974 (para 345)

One patient died whom she had regarded as seriously ill, but the doctor disagreed and prescribed cough linctus.

Another died several days after ‘vomiting coffee grounds’. A post mortem attributed death to ‘severe bruising’, both internal and external, which was difficult to attribute to an accident or fall. However, after a police enquiry, a verdict of ‘accidental death’ was recorded by a Coroner’s jury.

There are more examples in the Inquiries which I intend to publish in a longer paper. Suffice to say here is that there was a strong inclination to the ‘bad apple’ explanation of failures in care – the Inquiries were careful not to indict the whole system – but they do raise enough questions to suggest further investigation is warranted.

Statistics

As commented above, investigating deaths in the institutions of the past is not easy, and I have been unable to find many recorded attempts to do so. An exception is an unpublished Conference paper by Todd and O’Driscoll (2009).

They presented data on 971 deaths from 4 time periods at Leavesden, a large English institution.

In 1918 there were 10 deaths a week, one third of patients died that year. The deaths peaked at 20 per week in November and December, attributable to Spanish Influenza. They comment on the ‘unimaginable misery’ of so many deaths, echoes of scenes in some 2020 care homes. They also note that prior to the epidemic in Jan – October 1918 the number of deaths was also high, a legacy of the war, hospitals overcrowded, scarce resources, and staff drafted into armed forces.

TB was the main cause of death in all 4 time periods, while Cancer only appeared as a cause of death in the 1940s. Between 1 in 2 and 1 in 4 deaths were attributed to TB.

In all four time periods the average age of death was in the mid 40 s, most people dying between 30 and mid 60 s.

36% of under 16 s died within 2 years of entering the hospital. 36 – 45 year olds admitted endured for an average of 10 years.

About 2/3 of patents were buried in Leavesden’s institutional graveyard. What happened to the others is a question to which there is no answer as yet.

Causes of death

We may not yet know much, but there is enough data to indicate that in the old hospitals many people died painful, premature deaths, hastened by neglect.

From the evidence I have managed to scrutinise, I suggest that premature death resulted from these main causes.

1. failure to recognise and treat known physical complications of certain types of learning disabilities, such as epilepsy.

2. Failure to treat common diseases such as cancer and heart disease because they were not recognised, or because those lives mattered less

3. Poor infection control meant that contagious diseases claimed many lives

4. Accidents caused by understaffing leading to neglect.

5. In under-resourced hospitals patients were often cold and wet with nutrition/hydration needs unmet.

6. There is also evidence of murder/manslaughter by other residents or staff and, possibly, patient suicide.

Of these causes, several also applied in the 2020 pandemic. There was in the old institutions inadequate medical expertise – institution doctors were psychiatrists, making decisions over physical symptoms, just as in 2020 one of the reasons cited for high levels of ‘care home’ deaths was an absence of medical expertise. Similarly, in 2020 carers lacked expertise in infection control, indeed it seems many were themselves unknowing vectors of disease in the absence of testing. It is possible that understaffing, accidents, failure to meet basic needs also applied in 2020 – we don’t yet know.

Time to challenge the ‘ethical’ reasons for closure of records?

Just as we know too little about deaths in the past, so there is a danger that we will learn little from the deaths of those who died prematurely in the 2020 pandemic, even who they were. Cover ups are all too easy when information is hidden under the guise of respecting individual patient confidentiality. But who, I ask, is protecting whom? Given the likelihood that a significant number of people may have died prematurely from some of these causes in the 2020 pandemic, it is time to challenge blanket closure of patient records.

Acknowledgements

To Dr Pamela Dale for wise advice and unfailing encouragement.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1 Documenting this is tricky because things moving fast. This article sums up the situation at time of writing https://www.spectator.co.uk/article/coronavirus-s-forgotten-victims.