Revisiting the ‘Midazolam Murders’

As the Assisted Dying bill returns to Parliament, it might be instructive to look at how institutions currently deal with ‘end of life’.

Where does this story start? We have to go back to the infamous Liverpool Care Pathway (LCP).

This was the UK’s end-of-life protocol, designed “to provide consistent, high-quality palliative care for dying patients”. However, there had been considerable criticism of the LCP, with accusations of a ‘pathway to euthanasia’ and it being used to ‘free up hospital beds’ and even ‘for the financial gain of NHS trusts’.

As a result, the Government commissioned a review headed by Baroness Julia Neuberger, published in 2013, entitled ‘More Care, Less Pathway’. The title really says it all.

Highlights include:

• Poor care of patients: Many instances where the commencement of the LCP led to a withdrawal of care, “in some cases with relatives… left to do the caring themselves”. And unforgivably: “Denying a drink to a dying patient.”
• Communication: “A conversation with relatives or carers to explain the diagnosis, prognosis and uncertainties had simply not taken place.” Some relatives were just handed a leaflet without explanation; others were not told that their relative was dying or that clinical care or palliative care had been withdrawn. This is contrary to the GMC’s guidance in the care of the dying. 
• No senior responsible clinician accountable for care during ‘out of hours’ periods, with decisions made to withdraw or not to start life-prolonging treatment “by staff that do not have the requisite training and competence”.
• “Complaints that opiate pain killers and tranquillisers were being used inappropriately as soon as the LCP was initiated.”
• Financial incentives for each patient on the LCP “must cease in relation to any approach to care of the dying”.
• “The review panel suspects that age discrimination is occurring, which is unlawful. Nor should old age be taken as a proxy for lack of mental capacity.”
• “Professional regulators must take stern action with individual doctors and nurses where there is evidence of the deliberate falsification of any document or clinical record.”

As a result, the LCP was abandoned in 2014. Or was it?

Complaints and allegations continued, with the result that a new report was commissioned by the Lords and Commons Family and Child Protection Group (LCFCPG): ‘When End of Life Care Goes Wrong’, published in March 2023.

Perhaps this one should have been called ‘More action, fewer reports’.

A review of 17 of the cases was carried out by Sam Ahmedzai, a Professor of Palliative Medicine, and James Bogle KC, barrister.

Professor Ahmedzai made the following comments:

• “Flagrant examples of the same old LCP practices. … Patients’ and families’ pleas for changing this medical approach fell on deaf ears.”
• “Patients were started on end of life treatment, but without a proper assessment of being ‘near to dying’ by suitably experienced staff. In my view, not all of these should have been considered as ‘end of life’.”
• In 10 of the 17 cases reviewed, dying patients were denied hydration, even when they and their relatives pleaded for a drink.
• “Doctors failed to take mental capacity into account when making decisions about starting or withholding treatments. They also failed to consult with relatives who held lasting power of attorney.  This is in clear breach of the Mental Capacity Act 2005 and, I believe, of their human rights.”
• “In all 17 cases, there were failures with respect to communication with the patients and their families, leading to a denial of the shared decision-making which is required by NICE and GMC guidance. Furthermore, in many instances, staff had misinformed and misled the patients; and treated them in degrading or dehumanising ways.” 
• “In some instances, families were denied a coroner’s inquest because of misinformation or even careless handling by the police. Even when a coroner’s or Ombudsman’s judgement was obtained, it is evident to me that not a single member of staff has been censured or suspended.”

James Bogle KC then made the following points:

• “I can… repeat the concern that the ‘box-ticking’ and ‘one size fits all’ tendency… did not disappear with the demise of the LCP.”
• “Midazolam and morphine can be very useful in end of life care, if used appropriately, but it is precisely because they can be used well that makes it all the easier to conceal when they are being used badly or terminally.” 
• “There have even been cases of misdiagnosis where a patient had been declared to have a terminal condition… was placed on the pathway and died but, after post-mortem… was found not to have had the diagnosed terminal disease at all. … It remains a criminal homicide to bring about a patient’s death deliberately, recklessly or negligently.”
• “Dehydration is an extremely painful and distressing way to die and is not always relieved by… pain relief. No person, including patients, may be subject to degrading and inhuman treatment, such as deliberate dehydration, since such is contrary to their human rights under Article 3 of the European Convention on Human Rights, and the Human Rights Act 1998.”

And Lynda Rose, convenor of the LCFCPG report, mentions that one of the care home problems was “excessive and inappropriate use of midazolam and morphine”.

Where have we heard all this before? Oh yes, it’s a re-run of Baroness Neuberger’s Report.

Ten years on and nothing has changed.

In the middle of this, we had COVID-19.

And guess what? The LCP made a return under the auspices of guidance issued by the National Institute for Clinical Excellence (NICE) in April 2020.

The NICE guideline NG163 has now been replaced but it has been helpfully reproduced by the People’s Care Watchdog so you can read it on its website.

Here are the relevant extracts from NG163:

Consider an opioid and benzodiazepine combination… for patients with COVID-19 who:

• are at the end of life, and
• have moderate to severe breathlessness, and
• are distressed.

Before we continue with NG163, I will explain about the drugs. The opioid is normally morphine and the most common benzodiazepine in this scenario is midazolam. Midazolam is frequently used for sedation in patients in intensive care, particularly those on ventilators. The midazolam-morphine combination are also used for US death penalty executions.

According to the US National Library of Medicine: “Midazolam injection may cause serious or life-threatening breathing problems… that may lead to permanent brain injury or death.”

The midazolam dosage is important, as a small oral dose can be used simply to treat anxiety, but any prescription injected through a syringe driver is not for anxiety alleviation.

NG163 also states:

Sedation and opioid use should not be withheld because of a fear of causing respiratory depression (i.e., slowed breathing).

And finally, NG163 helpfully points out that: “At the time of publication (April 2020), opioids and benzodiazepines did not have a UK marketing authorisation for moderate to severe breathlessness”.

This means that they are an ‘unlicensed medication’ for breathlessness.

So we were denied hydroxychloroquine and ivermectin, both unlicensed for COVID-19, but subjected to unlicensed midazolam and morphine, which could actually kill us.

Sorry, perhaps I misunderstood something here.

I thought COVID-19 was a respiratory disease, with patients who were severely ill having serious breathing difficulties.

Can it be right for doctors to prescribe an unlicensed drug that suppresses breathing in patients who are having difficulty breathing?

Professor Sam Ahmedzai and other palliative care consultants published a letter in the British Medical Journal in April 2020, pointing out that the previous NICE guidance on end of life care was intended for patients “who were likely to die in the coming hours and days – usually from advanced diseases, from which recovery was deemed most improbable”.

The letter goes on to point out that few people with COVID-19 are terminal; most go on to make a full recovery. Yet NG163 is written as though all COVID-19 is terminal.

Who made this possible?

Enter Matt Hancock, then health secretary.

According to Paul Weston in the Conservative Woman, Matt Hancock was videotaped on April 17th 2020 informing Dr Luke Evans, MP, that he had stockpiled a sufficient amount of midazolam. This proved to be a two-year supply; or what would have been a two-year supply in normal times.

Paul Weston goes on to mention that in a 2023 court case, “Hancock claimed he had never heard of midazolam before being accused of using it to murder care home residents. He lied. He committed perjury. He is on tape talking about it three years earlier”.

Care home ‘clinical abandonment’

While not excusing any inappropriate or illegal action by care home staff, I need to point out that care homes were treated abominably by the government during the pandemic.

In its mission to protect the NHS, the government decreed that thousands of elderly patients should be moved out of hospitals and into care homes to make room for COVID-19 patients in hospitals.

This government decree neglected to require that patients were tested for COVID-19 before discharge to a care home and neglected to consider that in the absence of testing, these patients should be quarantined before arriving in the care home. Since many COVID-19 infections were acquired in hospital, it was a reasonable assumption that many of these patients would be infected.

And what was easily foreseeable certainly came about: those infected passed the infection to other care home residents as well as staff. Many residents then died because they were not allowed into hospital for life-saving care (another government decree). In addition, GPs were not permitted to visit (another government decree). Residents were left to die in care homes, often unnecessarily.

On top of this, care homes were desperately short of personal protective equipment (PPE) as hospitals had been prioritised for deliveries. Much of what did arrive was sub-standard.

A Guardian report on the Covid Inquiry revealed that many care homes experienced “clinical abandonment” during the pandemic. This is certainly borne out by the evidence and an Amnesty International Report echoes these points.

By now these deaths had been dubbed ‘The Midazolam Murders’.

Sadly, the truth seems to be worse than any fiction.

The Sun reported this in July 2020 with the headline: ‘Drugs Scandal: Care homes accused of using powerful sedatives to make coronavirus victims die more quickly as use rocketed 100%.’

A number of individuals and organisations also picked up on this issue and it was also raised in journalist Jaquie Deevoy’s film ‘A Good Death?‘, describing euthanasia disguised as Covid protocols.

‘Do Not Attempt Resuscitation’ (DNAR) orders, also known as ‘Do not resuscitate’ (DNR) or ‘Do not attempt cardiopulmonary resuscitation (DNACPR)’ orders, essentially mean that if your heart stops or you stop breathing, no attempt will be made to revive you. The NHS is clear that a DNAR decision is made by you or your doctor or healthcare team and that “you and the people important to you should know that a DNACPR form has been put in your medical records”. Rather worryingly, the NHS web page then adds: “But a doctor does not need your consent.” 

Amnesty International reports:

Throughout the pandemic, repeated concerns about the inappropriate use of Do Not Attempt Resuscitation forms have been raised. Care home managers reported to Amnesty cases of local GP surgeries or Clinical Commissioning Groups (CCGs) requesting that they should insert DNAR forms into the files of residents as a blanket approach.

Amnesty’s research exposed how a group of six Sussex CCGs issued DNAR guidance on March 23rd 2020 to 35 GP surgeries and 98 care homes. The document instructed all practices to search their clinical system for any care home patients who do not have a resuscitation order recorded and “put appropriate orders in place”.

The Telegraph reports that at the Covid Inquiry, “Matt Hancock admitted that the practice of issuing DNARs had been used inappropriately during the crisis, denying people access to potentially life-saving treatment”. He also said he backed an investigation into their use during the pandemic.

No sign of that investigation yet.

But who needs Assisted Dying when the government, NICE and doctors can authorise and preside over these killings?

Part 2 will look at the tragic case of one patient who merely wanted pain relief for gout. 

Dr Rachel Nicoll is a medical researcher, lecturer and writer. You can contact her here.