People voiced genuine fears about ageist and ableist attitudes and behaviours in the NHS
Across our engagement with different groups, academics and organisations, there was a concern that ageist and ableist attitudes are present in the NHS and affect care. This was also an important finding in HSSIB’s recent report.
“They were hell-bent on bumping me off and getting me to agree to this thing.”
Compassion in Dying research, page 7
Services are not consistently joined-up or responsive to the needs of older people living with frailty, as recognised by the NHS Long Term Plan. Nurses we spoke with noted that older people can often be asked about DNACPRs multiple times in hospital settings. While it is important to regularly review throughout people’s lives, moving towards better advance care planning would allow the time and space needed to have this important discussion. Older people often just want an opportunity to discuss their plans and care with personalised support.
Discussions do not take place due to perceived distress for patients
During the learning disability nurses focus group, there was reference to the General Medical Council’s guidance on CPR decisions. The guidance suggests doctors do not have to have a conversation with a patient if they think it would cause them ‘serious harm’. There was experience of this being interpreted as ‘distress’ and providing reason for a conversation not to take place. It was agreed there is likely to be actual or perceived distress for many patients with learning disabilities, but this is not a reason not to have the conversation.
Participants in our research also suggested concern that the bias and prejudice of healthcare professionals could affect decision-making. Some indicated that media coverage and their experiences during the COVID-19 pandemic had made this worse.
“Several people believed that, if over the age of 80, a DNACPR decision is automatically made, some people believed this system was introduced during the Covid-19 pandemic. People also talked about how badly society treated older people in the UK. Some felt the NHS and Government lacked humanity, empathy and compassion and that blanket DNACPR decisions were a symptom of this.”
Compassion in Dying research, page 7
Learning disability nurses 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.
“Having the do not resuscitate, it’s got to be everybody’s personal decision. Just because you’ve got a learning disability or physical disability does not mean to say that you cannot make a decision with support.”
BIHR, page 1
Doctors, nursing staff and patients said further training around managing these conversations when working with disabled patients would be useful to build empathy and understanding of rights in clinical practice.
Diagnostic overshadowing
It was concerning that diagnostic overshadowing was raised during conversations with stakeholders across the system, from healthcare staff to member-led organisations. According to NHS England, diagnostic overshadowing happens “when the symptoms arising from physical or mental ill health are misattributed to a person’s learning disability or autism leading to delayed diagnosis or treatment” (NHS England, ‘Clinical guide for front line staff to support the management of patients with a learning disability and autistic people – relevant to all clinical specialties’).
The groups we heard from were deeply worried about diagnostic overshadowing. Any training on DNACPRs needs to make it clear that this is a service failing, breaches patients’ rights and should be challenged if witnessed in practice.
Learning disability nurses gave examples of terms such as ‘learning disability’ and ‘Down’s syndrome’ being used on DNACPR forms, despite there being other medical reasons for the decision. In these instances, the language was challenged by the nurses and changed. But it was recognised that not all healthcare staff would feel able to challenge this, particularly those at a junior level.
Diagnostic overshadowing and the COVID-19 pandemic
We heard repeated testimony from people with learning disabilities, and healthcare professionals who work with them, that they felt the COVID-19 pandemic was a setback in terms of attitudes around learning disability and how people with learning disabilities are prioritised in healthcare.
“It just makes me feel like if you have a disability your life is worth less than a person that hasn’t.”
BIHR, page 1
“People with learning disabilities, their families, carers, and supporters, repeatedly share concerns about differential treatment, which is worse, on the basis of learning disability, throughout DNACPR decision-making, systems, and processes.”
BIHR, page 36
Accountability for this lies with the broader system as well as individual healthcare professionals who have collective responsibility to consider people’s rights, no matter the situation. A perception that some people’s rights around end-of-life care were not prioritised during the COVID-19 pandemic has had a lasting impact on trust for older people and disabled people.
Failings in applying and communicating about DNACPRs based on ableist and ageist attitudes
The case below shows what can happen when human rights are not taken into account in the DNACPR process. It is an example of when someone did not want a DNACPR notice on their record, but this issue goes beyond DNACPRs. It is about the perceived value of people’s lives and people’s wishes for the end of their life not being understood or, in some cases, respected.
Case study 7: Learning disability and mental health condition documented as reasons to not resuscitate
Miss F’s sister, Miss M, was in full-time residential care. She was in her fifties and had diabetes, high blood pressure, learning disabilities and schizophrenia. She was admitted to hospital in April 2020 with suspected COVID-19 symptoms but was discharged back to her care home to be treated in isolation. Miss M’s condition got worse, and she was admitted to hospital twice more over the next few weeks. During her first admission, a DNACPR decision was made for Miss M, referring to ‘frailty’ and ‘poor physiological reserve’ as reasons for not recommending CPR. It also said there was no discussion with Miss M as she did not have capacity, but that a discussion had taken place with her mother and Miss F.
Two days later, during her second admission, a second DNACPR decision was made referring to Miss M’s frailty, poor physiological reserve and multiple co-morbidities (having more than one health condition at the same time). The form also said this had been discussed with Miss M’s mother and Miss F.
During her third admission, another DNACPR form was completed and referred to Miss M being frail, having a learning disability, being dependent for daily activities and having schizophrenia. The Trust ticked the box reflecting that the decision was not discussed with Miss M’s next of kin or carers, but it did not give a reason for this. During this admission, Miss M sadly died following a heart attack.
We found failings in relation to the DNACPR decisions the Trust made for Miss M, which added to the significant distress Miss M’s family experienced. We found that:
- doctors should not have used the clinical frailty scale (CFS) to assess Miss M. The NICE COVID-19 rapid guideline at the time explained the CFS should be used when appropriate to assess baseline health and inform treatment decisions. It advised that the CFS should not be used to assess people with learning disabilities or with stable long-term disabilities
- there were conflicting notes about Miss M’s mobility and the level of help she needed with daily activities. The Trust’s entries appeared to be incorrect and painted a worse picture for Miss M when compared with information from her care home and family. This likely gave the medical team the impression that she had poor functional reserve and poor capacity to recover from severe illness
- Miss M’s DNACPR forms and medical records did not provide evidence that the Trust’s decisions were carefully considered in the context of her background health conditions and usual functional abilities. This does not reflect the FREDA principles of fairness, respect, equality, dignity or autonomy
- there was no evidence that the DNACPR decisions were fully explained and discussed with Miss M’s mother or Miss F. The Trust missed opportunities to involve Miss M’s family in its decision and show that Miss M was being treated as an individual.
Case study 8: Older person was not communicated with about a ReSPECT form filled out for her in hospital
Mrs R was in her eighties. She went to hospital for a scheduled knee procedure for an existing chronic condition. Mrs R had a fall in hospital and needed further rehabilitation in October 2019. In March 2020, the doctor treating her completed a ReSPECT form which said Mrs R did not wish to be resuscitated in the event of a cardiac arrest (when the heart stops pumping blood around the body). A few days later, Mrs R became aware of the DNACPR and discussed this with a ward matron, stating she was not happy with the decision. She was then discharged to a care home and the Trust sent the ReSPECT form to the care home approximately a week later.
We found that it was likely the Trust did not communicate effectively with Mrs R about the DNACPR decision. It also failed to make detailed notes of the conversation about the ReSPECT form in Mrs R’s records. These failings caused Mrs R to experience significant stress and upset, which had a lasting impact on her.