Concerns over do not resuscitate orders placed on East Sussex care home residents

The issue was raised earlier this month by POhWER, an organisation which provides Independent Mental Capacity Advocacy (IMCA) services to some of the most vulnerable people in the care system.

According to the group, at least 15 care home residents in East Sussex – some with learning disabilities or autism – had been issued such orders by GPs without “their knowledge” or “appropriate discussions” with family, carers or independent advocates.

POhWER says such decisions are likely to be a “national issue”, which represent a breach of “basic human rights” and “of common decency.”

The group’s deputy chief executive Elyzabeth Hawkes said: “POhWER works in a large number of care homes across Sussex and we are aware there have been instances of blanket decisions regarding do not attempt resuscitation orders (DNARs) being placed on groups of people without their knowledge.

“In East Sussex a care home manager had raised particular concerns with POhWER regarding 15 residents to whom this had happened.

“GPs should only place a DNAR order on someone when they have had appropriate discussions with family, carers, and the person (if possible) or an IMCA if the person lacks capacity and has no appropriate family, friends or carer. In this instance, this had not happened.

“Family, friends and IMCAs are there to ensure that someone’s basic human rights are upheld and that their wishes and feelings are taken into account in any decisions about them.  Where a person does not have family or friends it is a legal obligation to refer to an IMCA. 

“The current pandemic has not changed the legislation that is in place to safeguard people’s rights.”

After becoming aware of the cases, POhWER raised safeguarding concerns with East Sussex County Council, which the group says immediately escalated concerns to the chief medical officer of the East Sussex CCGs. 

POhWER says “instant action” was then taken by all parties and the group received 11 referrals for IMCA support the following day. 

It says many more referrals followed across East Sussex soon afterwards following further guidance from the CCGs in relation to the appropriate use of DNARs.

This was confirmed by East Sussex County Council.

A county council spokesman said: “We always look fully into safeguarding alerts and any referral about vulnerable people.

“In response we ensure steps are taken to address any concerns about safety and wellbeing including, where beneficial, referral to partner agencies for assistance.

“We can confirm that in this situation appropriate steps were taken.”

The CCGs were initially approached on April 9, after being made aware of social media posts from Andrew Cannon, CEO of the specialist care home group Voyage Care.

In a series of posts on Twitter, Mr Cannon wrote that “blanket DNRs” had been applied to residents of three Voyage Care services in Derbyshire, Somerset and East Sussex. 

Mr Cannon said the orders had been applied “without consultation” either with families or through a best interest process.

Voyage Care was approached for further information on Mr Cannon’s posts, but the group declined to comment.

The same day it was reported nationally that a case in Somerset was being investigated by health authorities.

In light of the posts, the East Sussex CCGs were contacted asking if it was aware of the cases raised by Mr Cannon.

The CCGs were also asked if they knew of any other cases where concerns had been raised about “blanket treatment orders” since the beginning of coronavirus lockdown.

The CCGs responded with a statement on April 20 (after the Easter bank holiday), claiming it is not possible to put in place “blanket” advanced care plans and stressing the importance of consulting with individuals and their families.

The statement did not address questions about the specific cases raised by Mr Cannon or whether the organisation was aware of any other similar cases in East Sussex.

The CCGs statement read: “It has always been very important that individuals are able to have conversations about their wishes and preferences for their future care and treatment. 

“This is done through a nationally-recommended process that involves a person having a discussion with their doctor and family around what care they want, what is important to them and what procedures they do not wish to be undertaken.

“It is particularly important that these conversations continue during the Covid-19 emergency, particularly for those people who are at greater risk of developing severe illness from the virus.  

“These discussions should be done in a sensitive and compassionate way that is tailored to the individual person, taking into account their personal circumstances and medical history.

“Decisions about future care cannot be made in a ‘blanket’ manner to any group and any recommendations must be shared with the person or their representative. 

“While normally it would be expected that these discussions would be held face to face, in the current situation it is deemed in the interests of protecting both the individual and medical staff involved that these can be held by video link or telephone.  

”We have made it clear to GPs across Sussex the importance of ensuring these discussions are carried out in the correct way and in line with the Mental Capacity Act 2005.  

“We will continue to ensure every patient has their wishes for future care and treatments respected.” 

The CCGs were approached for further comment in light of the cases raised by POhWER on April 23, but have not yet provided any further response.

While it says cases in East Sussex are being addressed, POhWER says the issuing of “blanket DNARs” are likely to be more widespread than the handful of cases already reported.

Elyzabeth Hawkes said: “We are aware there is great pressure on the NHS at present however there are safeguards in place to uphold a person’s basic human rights.

“We are concerned that DNARs are being placed on individuals or even groups of people in other parts of the country without any consultation with the person or their families or with an IMCA.

“In talking with other organisations and bodies we believe this is still happening nationally despite the Secretary of State, NHS England and other key public bodies making it clear that this must not happen.

“POhWER has been contacting every care home in every area where we provide advocacy to protect people’s basic human rights at this time.

“We are offering support to care homes to challenge blanket DNARs and will be providing tools to assist care homes and professionals on our website.

“We have been working closely with a number of organisations to provide support, advice and guidance to relevant professionals.

“This is a national issue affecting the most vulnerable people in our society. It is a breach of their basic human rights, a breach of ethics and of common decency.

“In these most challenging of times we must ensure, as individuals and a society, that our moral compass remains intact and that the most vulnerable have a voice and are treated with equal dignity and respect.”

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