Hodge Jones & Allen and People’s Care Watchdog Add Their Voices To Growing Concern About Use Of End-Of-Life Drugs, Midazolam and Opioids

• Premature deaths lead to questioning of NICE guidelines about end-of-life drugs
• New Parliamentary Report “When End of Life Care Goes Wrong” confirms fears

The People’s Care Watchdog, a community action group empowering families in the care system, has joined forces with law firm Hodge Jones & Allen to raise awareness of the ongoing use of end-of-life drugs, Midazolam and Opioids, in care homes and hospitals despite concerns raised by multiple parties.

The People’s Care Watchdog and their campaign partners have heard from more than 200 families where end-of-life treatment for their loved ones was unclear and highly questionable as to the lawfulness, appropriateness and necessity of the drugs prescribed.

The Watchdog also continues to hear from families who suffered the death of a family member during lockdown, who were denied simple, non-invasive treatments, but were often prescribed Midazolam and Morphine seemingly as a result of clinical guidance produced by NICE, under their guideline NG163, in April 2020.

Leandra Ashton, Co-Founder of the People’s Care Watchdog wants to alert as many people as possible to the existence of NG163 and the new Report. She feels it is imperative to clarify the rights of patients and their families when medication is prescribed.

Leandra said: “The NICE guidelines were brought in to deal with the outbreak of Covid-19 and people were prescribed Midazolam and morphine for breathlessness (as per the guidelines) but, we ask why known end-of-life drugs are used as a ‘treatment’ in a non-clinical setting? These guidelines were still in place towards the end of 2020 and raise questions as they are known to cause respiratory suppression.

“We need to know how many people died unnecessarily. The increased rate of prescribing within communities is concerning especially when Morphine and Midazolam do not have a UK Marketing Authorisation for the treatment of breathlessness. Most people have no idea these guidelines and practices exist, and we want to prevent any more families from losing their loved ones prematurely through the prescribing of end-of-life medication without consent.”

Sasha Patterson, co-founder of the Watchdog, added: “The Parliamentary Report published this week “When End of Life Care Goes Wrong” adds to our concerns that medication continues to be given inappropriately. The Liverpool Care Pathway – an end-of- life protocol – was disbanded in 2014. However, the Report, undertaken by the Lords and Commons Family and Child Protection Group finds it is still in operation. We want to know did

NICE guideline NG163 increase the use of the disbanded Liverpool Care Pathway and impact the high death rate in care homes and hospitals during 2020?

“Many of our families saw healthy elderly family members weaken and die in care homes due to malnutrition and dehydration. Locking out families and low staffing levels were of course issues, but we are also concerned that removing fluids and food was an aspect of the Liverpool Care Pathway. With care homes locked down there were no GP visits or SALT assessments (speech and language assessments for swallowing). This meant people risked being placed on ‘nil by mouth’ and therefore by default became ‘end-of-life’ and were prescribed medications such as Midazolam and Morphine because of the protocols expressed in NG163. We believe these deaths could and should have been avoided.

“Many people may not be aware that written consent is needed for end-of-life medication and that you are entitled to have sight of medical records. We would encourage family members who are an executor to a family member’s Will and who are concerned about the circumstances of their loved one’s death, to access their medical records to check on the treatment and medicines prescribed.”

Gilly Dobson, whose father sadly died after he was prescribed Midazolam and Morphine, said: “I have waited 18 months to see the Report completed, over three years after Dad’s death. My submission was one of 600+ submitted. My Dad’s death still haunts me. He was agitated because his potassium levels were low, but they started him on Midazolam and he died the next day. The youngest patient included in our Report was a girl of 21, with learning difficulties, who was admitted for routine eye surgery and was then incomprehensibly starved to death, after the doctors announced she was dying. Her death took three and a half weeks, and the death certificate, obtained after a Coroner’s Inquiry called for by her grieving family, put down the cause as malnutrition.”

Nina Ali, Partner at Hodge Jones & Allen who represents Gilly and other families, said: “Misdiagnosis and mis-assessment of patients’ symptoms are a growing worry to us as we speak to and represent more families who have contacted the People’s Care Watchdog. Hodge Jones & Allen proposed a judicial review challenge to the Covid- 19 Critical Care Guideline NG159 in early 2020. At that time, it secured important changes to protect the rights of people aged under 65 with autism, learning difficulties and mental disorders, from unjustified discrimination in access to critical care during the coronavirus pandemic.

“Much more still needs to be done now to hear people’s stories, help them understand their rights, gain answers and justice.”

Each of the 16 cases included in the Report were reviewed by Prof 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.