When End-of-Life Care Goes Wrong – New Publication – Available Now!

VfJUK presents its latest publication,
When 'End of Life Care' Goes Wrong
- Printed Report.

Launch Materials

Purchase Printed Report Here

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Exposing the scandal in ‘end of life care’ in Britain today

The purpose of this Report

In 2014, following public outcry over the staggering number of untimely and distressing deaths caused by the now infamous Liverpool Care Pathway (LCP), the protocol was scrapped. In 2015, the UK regulatory body National Institute for Health and Care Excellence (NICE) replaced the LCP’s one-size-fits-all, blanket approach with a set of individualised recommendations, based on the best available research evidence. However, in many hospitals, hospices, care homes, and for patients receiving home-based end of life care, those recommendations are being ignored, with the result that vulnerable patients are still being subjected to premature and unnecessary death.

In response to a growing number of complaints received by Voice for Justice UK (VfJUK) from bereaved relatives, The Lords and Commons Family and Child Protection Group (LCFCPG) commissioned an investigation into end of life care in Britain today. The findings were horrifying. From over 600 complaints (the tip of an iceberg), 17 case studies, that fulfilled the rigorous medical and legal requirements felt to be necessary, were selected for inclusion into our Report, When End of Life Care Goes Wrong.

Lynda Rose, Anglican priest, former barrister, and convenor of the LCFCPG, said “Our Report shows all too clearly that misdiagnoses and mis-assessments as to quality of life and proximity to dying are disturbingly common. Excessive and inappropriate use of Midazolam and Morphine, rendering a patient comatose, coupled with the withdrawal of food and hydration, have combined to impose a death sentence on the elderly and vulnerable from which there is no right of appeal. Life matters, and every last moment of life matters for those bound together by love. We shall all one day have to cross that final bar – so for all our sakes, we need to end the abuse now and ensure that the vulnerable – whose voices are so often ignored – are respected and that they receive the best possible care society can offer.”

Shocking findings

The 17 medically assessed case studies are provided in their own words by families left stunned at the inhumane treatment suffered by their relations. In many cases, the person who died had a seemingly trivial condition. One patient, for example, was admitted for treatment for constipation. Another, otherwise healthy, came into hospital for knee replacement surgery, and yet another for elective eye surgery. Others were known to be approaching the end of life and entered hospice care, only to receive undignified and callous treatment that paid no regard to their, or their families’, wishes or concerns.

Denise Charlesworth-Smith, lay member of the LCP review panel, former reviewer for Care Quality Commission and founder of the ‘LCP support group’, who furnished the majority of the complaints from bereaved families, said: “Things looked good when they scrapped the LCP, but by 2018 I was getting an increased number of very distressed families reaching out to me, saying that the More Care Less Pathway review was being ignored. I knew I had to do something, so that year I set up a new Facebook support group. Since that time over 800 families have joined. Without doubt, there are many, many more – too wounded to share their story, or completely oblivious that they are not alone. I’ve said it before and I’ll say it again, this HAS to stop.”

Sam H. Ahmedzai, emeritus professor of palliative medicine and chair of the 2015 NICE guideline committee, said: “When I was asked to review the 17 case studies I was shocked to read the extent of how badly patients and their families had been treated at the hands of those who should have known better, including hospice specialists. I examined all the families’ submissions and reviewed source documentation from hospitals, hospices and care homes wherever these were available. In some cases, coroners and the Ombudsman had already highlighted negligent practices contributing to suffering and untimely death.
“When I compared the case studies with relevant NICE and General Medical Council (GMC) guidelines, I was dismayed how flagrantly these had been ignored. Perhaps the most chilling case study concerned a young lady of 21 years with physical and learning disabilities, who entered a large teaching hospital for a planned minor operation and who died three weeks later, having been essentially starved to death, according to the coroner’s inquest.”

Legal failings and implications

James Bogle, barrister of the Middle Temple, co-author of Law and Medical Ethics, says: “I was asked, as a lawyer with experience in end of life and other medical cases, to review the 17 case studies legally. I was disturbed to find a recurrence of the very problems that had been highlighted by the Neuberger committee. The case studies include some particularly harrowing situations which should not have arisen. They include seemingly egregious examples of neglect, negligence and breaches of human rights. Moreover, the burden for seeking accountability seems often to have lain upon the shoulders of the bereaved themselves. Such a situation is clearly contrary to what our care quality standards and the law are meant to encompass and engender.”

Call for remedial actions

Robert S. Harris, the Report’s editor and leader of the Working Group on End of Life Care for the LCFCPG, says: “Having examined the many clinical failures, and what sometimes appears to be blatant abuse, the LCFCPG working group felt strongly that it was unacceptable many care providers are still using the discredited guidance and practices of the LCP, and that such practices should now be subjected to Parliamentary scrutiny and brought to an end. We are calling as a group for urgent remedial action.”

Actions being called for include:

A national inventory of local end of life care plans, policies and procedures currently being used in all healthcare settings
A national rapid response service to advise and support people who have a loved one currently experiencing poor quality end of life care
A fast track advice helpline for recently bereaved families
A national register of cases where end of life care has fallen below standards or breached guidelines
The urgent adoption of a uniform national system to capture patients’ preferences for end of life care
Further high quality research into social, medical and nursing aspects of end of life care

Carla Lockhart MP, Chair of LCFCPG, says: “This LCFCPG report When end of life care goes wrong exposes the horror of the ‘callous and inhumane treatment’ meted out to some patients as they approach the end of life. These include interventions such as the withdrawal of oral hydration – even when the patient is sometimes begging for a drink – or the administration of strong sedatives, prescribed with the sole intention of rendering the patient unconscious, while hastening death.

We believe this is unacceptable in British society and we urge the NHS, healthcare professional organisations and relevant charities to challenge these practices. We look to Parliamentarians to enact the ‘Call for remedial actions’ as soon as possible.”