NICE Guidelines NG163- what to know
Over the past three years, The People’s Care Watchdog has heard from families about end of life treatment that was highly questionable as to the lawfulness, appropriateness, and necessity of the drugs prescribed.
Many people lost family members during 'lockdown' and the clinical guidance produced by NICE in April 2020 demands public scrutiny to understand the impact it had on deaths in care homes and hospitals.
The NICE Guidelines (NG163) brought in to deal with the outbreak of Covid-19, suggested the use of midazolam and morphine for breathlessness, agitation, as well as for end of life.
This raises questions:
Why were end of life drugs, known to cause respiratory suppression, used as a ‘treatment’ in non-clinical settings?
Was there appropriate, specialised medical support for the use of these drugs?
Who decided what was 'end of life' when GP's weren't visiting in person?
Were these drugs given with informed consent?
How did the use of these drugs interact with the blanket Do Not Resuscitate orders (DNRs DNARs) placed on the elderly, vulnerable and those with learning difficulties?
The increased rate of prescribing end of life medication within communities is concerning especially when morphine and midazolam do not have a UK Marketing Authorisation for the treatment of breathlessness and are strong and unpredictable drugs.
The situation in 2020
With care homes locked down there were no visits from families, GP's or SALT teams (Speech and Language assessments for swallowing). Inadequate medical assessments meant people risked being classed as ‘end of life’ and therefore denied simple treatments whilst end of life pathways were begun. Medications such as midazolam and morphine were readily available because of the protocols expressed in NG163. We believe many of these deaths could and should have been avoided.
The situation in 2023
The Parliamentary Report published March 6th 2023 by the Lords and Commons Family and Child Protection Group "When End of Life Care Goes Wrong" adds to our concerns that end of life medication continues to be given inappropriately. The 'Liverpool Care Pathway' – an end of life protocol - was disbanded in 2014. However, the recent Report evidences that the protocol is still in operation today.
Has this affected your family?
We understand this is a distressing topic for families to consider.
We believe that many people may not be aware that end of life medication was prescribed for their loved one. Written consent is needed for end of life medication and families must be consulted. Unfortunately it seems that wasn't the case for many who died.
We would encourage family members who are concerned about the circumstances of their loved one’s death, to access their medical records and check on the treatment and medicines prescribed. Were fluids stopped? Were morphine and midazolam prescribed? You are entitled to have sight of medical records if you are executor to a family member’s Will. You can find more information about this here.
What we are doing
We are building a case for an immediate end to inappropriate and uninformed use of end of life pathways and medication. We are doing this by working with MP's, raising awareness through the media as well as applying to be core participants in the Covid-19 Inquiry alongside our legal team at Hodge Jones Allen.
What can you do?
Join us in our campaign. You can email us at firstname.lastname@example.org and you can also securely share your experience by clicking here. We need more families to come forward to help us build a picture as to how wide spread this situation may have been. Help us make sure these unlawful and traumatising practices are stopped once and for all.
Information about the Liverpool Care Pathway can be found here.
Information about consent to DNR's (do not resuscitate) is here.
Information about use of drugs with a Non UK Market Authorisation here
Information regarding accessing medical records is here
You can share your evidence securely by clicking here.
In this short video, Dr John Campbell explains in more detail the issues we are concerned about.