Head of Public Policy Tim Dieppe discusses a new report on end-of-life care
Last week, I attended the parliamentary launch of a sobering report on end-of-life care. The report was prepared by the Lords and Commons Family and Child Protection Group (LCFCPG). The meeting was hosted by Danny Kruger MP and Carla Lockhart MP, who wrote the Foreword to the report. The report shows that far too many patients in the UK are being subjected to illegal and inhumane standards of care at the end of life.
Substantial report
The substantial 234-page report, titled: “When ‘End of Life Care’ Goes Wrong”, is available for purchase here. Contributors to the report include Professor Sam H. Ahmedzai, emeritus professor of palliative medicine, and former chair of the NICE guideline committee for the care of the dying adult. Another contributor is experienced barrister James Bogle who has advocated in a number of high profile cases such as the tragic case of Archie Battersbee last year, and also in the case of RS – a middle-aged man who was dehydrated to death by court order in 2021.
The substance of the report is a detailed analysis of 16 case studies where end of life care of a patient went wrong. These ages of the patients in the case studies range from 21 to 94, and their deaths occurred between 2012 and 2021. Twelve of these deaths occurred on hospitals, two in hospices, two under hospice care at home, and one in a care home. The case studies are drawn from over 600 examples of end-of-life care falling short of expected standards that were submitted to the group as part of the investigation. They are described as “the tip of a very large iceberg.”
Harrowing reading
As James Bogle comments, “The case studies set out on this report make harrowing reading.” They evidence a catalogue of multiple failures by medics and care professionals. In Bogle’s view, several of the cases meet the standard for a verdict of homicide. Others would be manslaughter, or negligent breach of duty. In all cases, the law was broken.
In one case, a 21-year-old lady with severe learning disabilities went to hospital for a ‘routine’ eye operation and left the hospital dead. The coroner found that malnutrition contributed significantly to her death. This is despite her parents daily requesting clinical assistance with nutrition.
In another case, a 68-year-old man went into hospital with constipation and left the hospital dead. After acquiring an infection, pneumonia, and sepsis, the hospital argued that further treatment would be futile, and sought withdrawal of treatment with the intention that the patient would die.
Dehydration is distressing
James Bogle comments: “To dehydrate a person to death is an extremely painful and distressing way to die and is not always relieved by mere analgesic pain relief. Accordingly, unless the clinical staff can be sure that the patient is not suffering such distress, they must not allow dehydration lest the patient’s Article 3 rights are thereby violated.” Article 3 of the European Convention on Human Rights, states that: “No one shall be subjected to torture or to inhuman or degrading treatment or punishment.”
Yet, in many of these cases hydration was refused to patients, often against both their express wishes, and those of their closest relatives. Relatives have been instructed not to give fluids to the patient even when the patient requests them. This is cruel, inhumane and against the law. Sadly, though, it is not uncommon. In any reasonably large group of people, you are likely to find someone with a story about someone they know who was refused fluids by medics towards the end of their life.
Liverpool Care Pathway
The now notorious Liverpool Care Pathway for the Dying Patient (LCP) was abandoned after an independent review led by Baroness Neuberger was published in 2013. The review found that too many patients were being denied nutrition and hydration when placed on the Pathway. The government responded to the review by phasing out the LCP and replacing it with individual end of life care plans. However, some doctors complained that the effect was merely to ‘rebrand’ the LCP rather than abolish it. They said that the replacement scheme would perpetuate many of LCP’s worst practices, allowing patients to be dehydrated or sedated to death.
Two of the cases highlighted in the report occurred before the abolition of the LCP. The others all occurred under the new model. What the report appears to show, however, is that nothing has really changed. Patients are still being dehydrated to death against their wishes. There has been no wholesale change of culture.
Recommendations
The report concludes with six recommendations, including a national register of cases where end of life care has fallen below standards or breaches guidelines, and the urgent adoption of a uniform national system to capture patients’ preferences for end-of-life care.
These recommendations should be taken up by the government as a matter of priority. There is clearly far too much of a culture of negligence and disrespect for dying patients across the medical profession. Many patients do receive excellent palliative care, but cases where this is not the case are far too frequent to ignore. The effects, not just on the suffering patients, but also on the grieving relatives, are devastating and very disturbing. We all want to trust doctors to do the best for the most vulnerable patients. Sadly, as this report shows, all too often this is not what happens.
Assisted dying would make things worse
What this report shows is that as things stand, the law protecting people at the end of life is frequently disregarded. People are having treatment illegally withdrawn and are being illegally dehydrated or starved to death. No one should die by dehydration, and no relative should suffer the distress of seeing their loved one die in that way. It is not difficult to provide hydration, and it is unlawful to withhold it.
Sadly, legalising assisted dying would only make things worse. Once assisted dying is legalised, the attitude and culture of the medical profession changes. When it is legal to help someone to die, medics become used to the idea that some lives are not worth preserving. Having helped some people to die, they become desensitised to ‘helping’ others to die – whether they asked for it or not. Death becomes just another means of alleviating suffering – a cheaper means too. More people will die earlier than they should and in ways that they shouldn’t. The culture changes to disrespecting death.
It is likely that we will see an attempt in parliament to change the law on assisted dying before long. You can read more about why we oppose assisted dying and euthanasia here. Killing is not care – it is not kinder to kill than to care. We will continue to speak up for the weak and vulnerable by campaigning against the legalisation of assisted suicide.
