Executive Summary 

When the vulnerable are most at risk!  Read our groundbreaking new Report exposing the shocking abuse in end of life care going on in hospitals, hospices and care homes in the UK today.

Lords and Commons Family and Child Protection Group present:

When End of Life Care Goes Wrong

Following public outcry over the staggering number of premature and inappropriate deaths caused by the now infamous Liverpool Care Pathway (LPC), in 2014 the protocol was scrapped, presumably consigned to a scrapheap of medical mistakes from which it was hoped it would never again emerge.  That hope proved to be misplaced.  When end of life care in the NHS performs correctly, it is superb, but sadly, as this Report shows, the many-headed hydra that was the Pathway has refused to lie down.  The name may have changed, but the misapplication, misuse – and even abuse – persist.

As this Report shows, misdiagnoses and mis-assessments as to quality of life are all too common.  This, together with a failure to appreciate the respect and care required for those approaching their last days is, in every sense, a fatal combination.   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 which, in the current climate, it is extremely hard to challenge.

From over 600 complaints that we know about – the tip of a very large iceberg – this Report details 16 medically analysed and validated accounts of such failure, provided in their own words by families left stunned at the inhumane treatment suffered by their relations.  The individualised ‘care package’, recommended by NICE in the wake of the LCP, has all too often become a pathway to death – imposed for what sometimes started out as seemingly trivial conditions.  One patient, for example, was admitted for treatment for constipation. Others, otherwise healthy, underwent knee replacement surgery or elective eye surgery.

Commentary on each case is provided by Professor Emeritus Sam H Ahmedzai FRCP, a palliative medicine specialist, who chaired the NICE guideline committee responsible for its clinical guidance on care for the dying adult in 2015.  Legal analysis is provided by James Bogle, a practising barrister specialising in clinical negligence, and especially end of life cases.

Examining the many clinical failures, and what sometimes appears blatant abuse, the Report concludes with a series of proposed actions to address the problems.

We propose the following:

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

Doctors are called to save life, not kill, and it is urgent these problems be addressed by Parliament, and appropriate action taken to end such callous and inhumane treatment of those at the end of life.