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Christina Warner investigates the unlawful and inappropriate application of ‘do not resuscitate’ orders to those with disabilities
The pandemic had a devastating impact on people with disabilities, who died from COVID-19 at far higher rates than the general population. Health and social care service providers faced questions on both the quality of care received by disabled people during the pandemic as well as the approach to their care. In 2021, while being questioned about mishandling during the early months of the pandemic, then Health Secretary Matt Hancock promised to investigate ‘inappropriate’ do not resuscitate (DNR) notices being placed unlawfully on patients with learning difficulties and autism, which was initially revealed during the height of the pandemic in 2020.
The issue was once again brought into the media spotlight in 2022 by Paralympian Helene Raynsford who was asked to sign a DNR form by someone with no medical training during an appointment with a primary care network. Raynsford raised the issue as she believed she was asked to sign the document purely due to being a wheelchair user as she is neither elderly nor suffering from a serious health condition. Raynsford, 42, is a former rowing champion who won a gold medal at the 2008 Beijing Paralympics.
The use of do not attempt cardiopulmonary (DNACPR) orders has been recorded since the 1970s. Primarily a talking point around end-of-life planning, they allow resuscitation to be withheld when it has little chance of success or where the risks of CPR outweigh the benefits. However, application is variable. In a 2011 study of 500 patients who sustained an in-hospital cardiac arrest during a two-week period, reviewers found that a quarter of patients who received CPR had substantial functional limitations, two-thirds had an underlying fatal disease and that a DNACPR decision could have been made prior to cardiac arrest in 85% of cases.
There is currently no direct legislation governing the application of DNR orders and warnings have been issued over their unlawful use.
In March 2021, NHS England’s national clinical directors wrote to hospital trusts and GP surgeries warning that use of a learning disability as a reason for the decision to issue a DNR order was unacceptable. Prior to this, in April 2020 NHS England warned that ‘treatment decisions should not be made on the basis of the presence of a learning disability and/or autism alone’.
Guidance from the British Medical Association, Resuscitation Council (UK) and Royal College of Nursing, issued in 2016, clarifies that a decision to delay or avoid communication of a decision to a patient must be based on the communication being very likely to cause patient physical or psychological harm. A decision to delay communication of a decision to those close to a patient without capacity must be based on that communication being either not practicable or not appropriate in the circumstances (The Mental Capacity Act 2005 Resource and Practice Toolkit).
The charity Compassion in Dying has uncovered poor and unlawful DNR practice including orders issued without explanation. What is the justification behind not communicating DNR decisions to patients or their families? Additionally, the question remains as to why people living with ‘functional difficulties’ – some of which have little to do with cardiovascular illness – received DNR orders.
A Care Quality Commission (CQC) report states that DNR orders cannot be applied as blanket orders against specific groups in society as this triggers human rights breaches. The report acknowledged that ‘during the COVID-19 pandemic between October 2020 and January 2021, the CQC acted upon concerns that decisions to not resuscitate were being made without involving (capable) people or their families and/or carers’.
Not only were people who satisfied the Mental Capacity Act, or those who care for them, not being informed or consulted about the care that was being revoked but the CQC also found in an interim report that DNR orders were being applied ‘to groups of people rather than considering individual patient circumstances’, defeating their purpose altogether. This included a GP sending DNR letters to care homes asking them to put blanket orders in place.
A decision to use a broad-brush approach towards the application of DNR orders without consulting individual patients or their carers and families is a clear infringement of rights to life and personal life and also a major concern for those who are being neglectfully targeted.
Overall, the CQC found that 3.8% (369 out of 9,679) DNR decisions put in place since 17 March 2020 (by adult social care providers who responded to its information request) had not been considered as part of a personalised care plan. This compares with its public survey which revealed that 48% of individuals with a DNR decision on their care file believed they had encountered unfair or discriminatory treatment during the decision-making process; and 44% of their relatives/carers who answered on their behalf.
The issue was compounded when the CQC stated in its interim report that potentially avoidable deaths were caused by inappropriate DNR orders. GPs were alleged to have told patients with learning disabilities they would be ‘too frail’ for ventilators and should sign DNRs. Further findings indicate that nursing staff and primary care physicians are less likely to administer further care treatments (including antibiotics, physiotherapy, intravenous fluids, pain relief, oxygen, airway suctioning) for patients with a DNR order in place.
David Tracey took University Hospitals Cambridge NHS Foundation Trust to the Court of Appeal (Tracey, R (on the Application of) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822). His wife Janet, who had been diagnosed with terminal cancer, was found to have had a DNR order placed unlawfully on her records at Addenbrooke’s Hospital without consultation. Since 2014, the law has stated that article 8 of the Human Rights Act 1998 (right to respect for private and family life) requires that DNR decisions be made by consulting the patient/their family, that patients know in advance how decisions are made and what to do in a disagreement. Lord Dyson also clarified there needs to be a ‘convincing’ argument not to involve the patient and that failure to do so triggers article 8.
This principle was further substantiated in Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB) where the imposition of a DNR order on a 28-year-old man with cerebral palsy without his family’s knowledge was found to be a clear violation of article 8 rights.
The approach to DNR orders and their application to patients with disabilities will continue to prompt discussion as to disparities in the level of medical care. The idea that long-term health conditions and disabilities can be considered the same as a life-limiting or terminal illness only perpetuates the idea that having a disability means having a lesser quality of life and so, a lesser right to appropriate medical care.
Champion rower Helene Raynsford who was asked to sign a DNR form by someone with no medical training.
Christina Warner is a multi-award-winning family, animal protection and international crime barrister at 33 Bedford Row.
The pandemic had a devastating impact on people with disabilities, who died from COVID-19 at far higher rates than the general population. Health and social care service providers faced questions on both the quality of care received by disabled people during the pandemic as well as the approach to their care. In 2021, while being questioned about mishandling during the early months of the pandemic, then Health Secretary Matt Hancock promised to investigate ‘inappropriate’ do not resuscitate (DNR) notices being placed unlawfully on patients with learning difficulties and autism, which was initially revealed during the height of the pandemic in 2020.
The issue was once again brought into the media spotlight in 2022 by Paralympian Helene Raynsford who was asked to sign a DNR form by someone with no medical training during an appointment with a primary care network. Raynsford raised the issue as she believed she was asked to sign the document purely due to being a wheelchair user as she is neither elderly nor suffering from a serious health condition. Raynsford, 42, is a former rowing champion who won a gold medal at the 2008 Beijing Paralympics.
The use of do not attempt cardiopulmonary (DNACPR) orders has been recorded since the 1970s. Primarily a talking point around end-of-life planning, they allow resuscitation to be withheld when it has little chance of success or where the risks of CPR outweigh the benefits. However, application is variable. In a 2011 study of 500 patients who sustained an in-hospital cardiac arrest during a two-week period, reviewers found that a quarter of patients who received CPR had substantial functional limitations, two-thirds had an underlying fatal disease and that a DNACPR decision could have been made prior to cardiac arrest in 85% of cases.
There is currently no direct legislation governing the application of DNR orders and warnings have been issued over their unlawful use.
In March 2021, NHS England’s national clinical directors wrote to hospital trusts and GP surgeries warning that use of a learning disability as a reason for the decision to issue a DNR order was unacceptable. Prior to this, in April 2020 NHS England warned that ‘treatment decisions should not be made on the basis of the presence of a learning disability and/or autism alone’.
Guidance from the British Medical Association, Resuscitation Council (UK) and Royal College of Nursing, issued in 2016, clarifies that a decision to delay or avoid communication of a decision to a patient must be based on the communication being very likely to cause patient physical or psychological harm. A decision to delay communication of a decision to those close to a patient without capacity must be based on that communication being either not practicable or not appropriate in the circumstances (The Mental Capacity Act 2005 Resource and Practice Toolkit).
The charity Compassion in Dying has uncovered poor and unlawful DNR practice including orders issued without explanation. What is the justification behind not communicating DNR decisions to patients or their families? Additionally, the question remains as to why people living with ‘functional difficulties’ – some of which have little to do with cardiovascular illness – received DNR orders.
A Care Quality Commission (CQC) report states that DNR orders cannot be applied as blanket orders against specific groups in society as this triggers human rights breaches. The report acknowledged that ‘during the COVID-19 pandemic between October 2020 and January 2021, the CQC acted upon concerns that decisions to not resuscitate were being made without involving (capable) people or their families and/or carers’.
Not only were people who satisfied the Mental Capacity Act, or those who care for them, not being informed or consulted about the care that was being revoked but the CQC also found in an interim report that DNR orders were being applied ‘to groups of people rather than considering individual patient circumstances’, defeating their purpose altogether. This included a GP sending DNR letters to care homes asking them to put blanket orders in place.
A decision to use a broad-brush approach towards the application of DNR orders without consulting individual patients or their carers and families is a clear infringement of rights to life and personal life and also a major concern for those who are being neglectfully targeted.
Overall, the CQC found that 3.8% (369 out of 9,679) DNR decisions put in place since 17 March 2020 (by adult social care providers who responded to its information request) had not been considered as part of a personalised care plan. This compares with its public survey which revealed that 48% of individuals with a DNR decision on their care file believed they had encountered unfair or discriminatory treatment during the decision-making process; and 44% of their relatives/carers who answered on their behalf.
The issue was compounded when the CQC stated in its interim report that potentially avoidable deaths were caused by inappropriate DNR orders. GPs were alleged to have told patients with learning disabilities they would be ‘too frail’ for ventilators and should sign DNRs. Further findings indicate that nursing staff and primary care physicians are less likely to administer further care treatments (including antibiotics, physiotherapy, intravenous fluids, pain relief, oxygen, airway suctioning) for patients with a DNR order in place.
David Tracey took University Hospitals Cambridge NHS Foundation Trust to the Court of Appeal (Tracey, R (on the Application of) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822). His wife Janet, who had been diagnosed with terminal cancer, was found to have had a DNR order placed unlawfully on her records at Addenbrooke’s Hospital without consultation. Since 2014, the law has stated that article 8 of the Human Rights Act 1998 (right to respect for private and family life) requires that DNR decisions be made by consulting the patient/their family, that patients know in advance how decisions are made and what to do in a disagreement. Lord Dyson also clarified there needs to be a ‘convincing’ argument not to involve the patient and that failure to do so triggers article 8.
This principle was further substantiated in Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB) where the imposition of a DNR order on a 28-year-old man with cerebral palsy without his family’s knowledge was found to be a clear violation of article 8 rights.
The approach to DNR orders and their application to patients with disabilities will continue to prompt discussion as to disparities in the level of medical care. The idea that long-term health conditions and disabilities can be considered the same as a life-limiting or terminal illness only perpetuates the idea that having a disability means having a lesser quality of life and so, a lesser right to appropriate medical care.
Champion rower Helene Raynsford who was asked to sign a DNR form by someone with no medical training.
Christina Warner investigates the unlawful and inappropriate application of ‘do not resuscitate’ orders to those with disabilities
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