Learning Disability Today
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DNACPR conversations often happen too late or not at all, says Ombudsman

Almost all DNACPR complaints brought to the Ombudsman were from disabled or older people

The Parliamentary and Health Service Ombudsman (PHSO) has called for urgent improvements to the process and communication surrounding do not attempt cardiopulmonary resuscitation (DNACPR) decisions, sometimes referred to as ‘do not resuscitate’ orders.

The calls follow a report from the PHSO, End of life care: improving ‘do not attempt CPR’ conversations for everyone, which found that conversations around end-of-life care are often happening too late or not at all, and this is having devastating consequences for families.

Almost all DNACPR complaints brought to the Ombudsman were from disabled or older people, and a person’s disability is still being cited on medical records as a reason to implement a DNACPR notice.

One Trust cited a person’s learning disability as a reason for a DNACPR decision

This is highlighted by the story of Sonia Deleon, who had a learning disability. Sonia, known as Sone, died following a heart attack at Southend University Hospital at the age of 58.

As well as a learning disability, Sonia also had schizophrenia and was in full-time residential care. She was admitted to hospital on three occasions and each time a DNACPR notice was made, but her family were never informed.

After Sonia’s death, the family found out that the one of reasons for the notices being made was that she had a learning disability. Notes from the Trust responsible for her care also noted frailty, poor physiological reserve, schizophrenia and being dependant for daily activities.

Sonia’s sister, Sally-Rose Cyrille brought her complaint to the Ombudsman, who has now recommended that the Trust writes to sally to apologise and explain what action will be taken to ensure these mistakes are not repeated.

Sally-Rose said she is “devastated, shocked and angry” that the Trust failed to consult with her and her mother.

“We only found out when my husband and I were reviewing Sone’s medical notes and I just couldn’t believe it. I burst into tears. I just couldn’t get my head around what had happened.

“To find out doctors didn’t think it was worth even trying to resuscitate Sone because she had learning difficulties and schizophrenia was just the most unbelievable, devastating bit of information that came out of what had happened,” she said.

Learning disability nurses involved in the report gave the example of assumptions that people with learning disabilities cannot ‘handle’ a conversation about DNACPR or death. This was not their experience, particularly if conversations are delivered in an accessible way that patients with learning disabilities, and their family and carers, can understand and engage in.

Majority of complaints from older or disabled people

The vast majority of complaints received by the PHSO about the communication of DNACPR notices during the Covid-19 pandemic were either from older people or disabled people (or on their behalf), and the report found that this is yet to change.

The Ombudsman highlights that DNACPR discussions are positive when done in the right way, however, these conversations need to happen in a timely manner before there is an ‘emergency’ situation, as this can cause the family, and the individual, added distress.

It is also important to note that these conversations should involve the person themselves, rather than just their family members. Some patients are left out of conversations entirely, which is a breach of human rights.

The PHSO, Rob Behrens, is now calling for the public and healthcare professionals to normalise conversations about end-of-life care and improve awareness, while also urging the NHS to learn from mistake. He makes a series of recommendations in the report, including:

  • Training medical professionals in end-of-life conversations to ensure these discussions happen in a timely and sensitive manner
  • DNACPR decision records need to be held in one, accessible place
  • Existing DNACPR forms need to be altered to clarify legal duties for clinicians to consult with patients, families and carers and create more space to document conversations and decisions.

NHS must make ‘urgent improvements’

Mr Behrens said normalising conversations about end-of-life wishes will help to improve outcomes for families and reduce the risk of added distress.

He said: “There is a reluctance from British society to have conversations about end-of-life care early enough. We need to normalise these conversations, rather than wait for something drastic to trigger them.  That way doctors, patients and their families can make informed choices about their end-of-life care in a dignified way.

“It is particularly important for older people and disabled people that care and consideration is given to end of life conversations, to avoid any perceptions that bias has affected decision-making.

“A person’s age or disability should not impact their human right to be treated with appropriate respect and care, especially on such a critical issue as end-of-life care. Yet people have genuine fears about ageist and ableist attitudes in the NHS.”

“Sadly, there is a lot of misunderstanding and confusion around DNACPR and the NHS needs to make urgent improvements and look at past mistakes when it comes to DNACPR process.”

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