Foreword from the Ombudsman
End-of-life care provision is some of the best service the NHS has to offer. It is associated with an empathy-led, personalised approach at the heart of palliative practice.
Conversations about end-of-life care are sensitive and emotionally challenging. They need to be conducted by professionals who have had appropriate training, in partnership with patients and their families and supporters. The aim is to help them make the right decision, properly informed and at the right time. However, the evidence of this report shows that good practice is missing in some parts of our healthcare system, and that this can have profoundly traumatic consequences for patients and their families.
When the COVID-19 pandemic hit, it pushed many doctors, patients, families and carers to make end-of-life decisions in pressured and emotionally charged environments, often at a distance from affected relatives. These are not ideal healthcare settings for thorough, supportive and inclusive conversations to take place.
Perhaps unsurprisingly, we received many complaints about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) conversations during the pandemic, especially from or on behalf of disabled people and older people. Like many facets of the pandemic, this exposed issues that had been lying dormant in the health service for some time and have continued post-pandemic.
This report delves into the systemic reasons for failure and the inequitable impact this has on disabled people and older people. I am immensely grateful to all of the healthcare staff, people with learning disabilities, older people, regulators, member-led organisations, charities and researchers who gave their time and expertise to help us understand this further.
Viewing the rights of older people and disabled people together makes sure that supported, personalised decision-making takes precedence, rather than an imposed or guardianship model. This approach is integral to this report. Disabled people and older people can be marginalised as a result of a perceived heavier reliance on the support of others, and we know this manifests itself in health and social care systems.
I was struck by a quote from one person we spoke to: “You’re born with a learning disability, but you don’t die from it”. 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. In one case we upheld, the patient had ‘learning disability’ written as one of the reasons for their DNACPR notice. This clearly does not meet the FREDA principles of fairness, respect, equality, dignity and autonomy in healthcare (‘Care Quality Commission, ‘The importance of human rights in our approach’).
Having conversations about DNACPR is a legal requirement. Failing to do so constitutes maladministration and a breach of human rights. Time pressures or concerns of distress could be reasons for delay, but the conversation will still need to take place. A rights-respecting, interactive conversation on how someone wishes to end their life is a basic part of end-of-life care provision.
The COVID-19 pandemic was both a trauma and a national test. Now we have a chance to learn from the mistakes that exposed flaws in the system. Healthcare staff have told us they want help to make this happen around DNACPR conversations. I hope this report is a key step in making sure the health service supports them to do so.
Rob Behrens CBE
Parliamentary and Health Service Ombudsman