During the first wave of the pandemic, doctors in England issued at least 500 “Do Not Resuscitate” orders without consulting the patients, their families or carers, and without taking into account each person’s individual circumstances, writes MedicalBrief. The failure to obtain informed consent was often accompanied by poor record keeping and a lack of oversight on decisions being made.
The final report of England’s Care Quality Commission, released last week, found “disturbing inconsistencies” and failures in obtaining informed consent with, on one instance, DNR orders – which for accuracy consistency, it renders as “Do Nor Attempt Cardio- Pulmonary Resuscitation” (DNACPR) orders – being applied to everyone over 80 with dementia. Decisions were made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person’s individual circumstances.
Best practice is for proper discussions to be held with the person involved and/or their relatives. While examples of good practice were identified, some people were not properly involved in decisions or were unaware that such an important decision about their care had been made. Poor record-keeping, and a lack of oversight and scrutiny of the decisions being made, was identified.
In its latest report, the CQC said that a combination of “unprecedented pressure” on providers and “rapidly developing guidance” may have led to situations where DNAR decisions were incorrectly conflated with other clinical assessments.
The report, Protect, respect, connect – decisions about living and dying well during Covid-19, calls for a ministerial oversight group – working with partners in health and social care, local government and the voluntary sector – to take responsibility for delivering improvements in this area.
The report surveyed a range of individuals and organisations, including care providers and members of the public, and identified:
- Serious concerns about breaches of some individuals’ human rights
- Significant increase in DNACPRs put in place in care homes at the beginning of the pandemic, from 16,876 to 26,555
- 119 adult social care providers felt they had been subjected to blanket DNACPR decisions since the start of the pandemic
- A GP sent DNACPR letters to care homes asking them to put blanket DNACPRs in place
In one care home a blanket DNACPR was applied to everyone over 80 with dementia
- Healthcare professionals emphasise that resuscitation is both invasive and traumatic with only a 15-20% survival rate when performed in hospitals and a 5-10% success rate when performed outside hospitals.
Rachel Clarke is a palliative care doctor and author writes in The Guardian:
As patients, we literally surrender our bodies and minds into our doctors’ hands. We could not be more vulnerable. For a clinician to exploit this power in any way at all is monstrous, an affront to decency.
No one is suggesting that any of the medics who, since March last year, signed more than 500 “do not resuscitate” (more accurately, “do not attempt cardiopulmonary resuscitation” (DNACPR) forms without first discussing the matter with the patients or their families had any intention of shortening life. But when you possess the power to save, prolong, shorten or end life – as all doctors, in theory, do – then it is essential for your integrity and professionalism to measure up to your patients’ faith in you. Your motives and values should be irreproachable.
It is this broader context of power dynamics in medicine that makes the new Care Quality Commission (CQC) investigation into decisions during the pandemic on “do not attempt CPR” such uncomfortable reading for both doctors and patients. The report reveals that 119 adult social-care providers felt they had been subjected to blanket “do not attempt CPR” decisions, imposed by GPs upon all their residents, since the start of the pandemic. Hundreds more such decisions were made without any prior discussion with patients or their families – a clear breach of both the law and best practice.
Eleanor Sturge, whose 62-year-old husband died of COVID in the care home where he lived following a stroke, shared with the CQC a letter she received from a GP. It stated that, after examining her husband’s medical notes and using a computer algorithm, the GP had decided: “There is less than 1% chance of resuscitation being successful. For this reason I have signed a ‘do not resuscitate’ order in their nursing notes.”
The notion of doctors making lofty life-and-death decisions without deigning first to discuss them with the minions they concern is deeply unnerving. If doctors’ intentions really are benign and uncontentious – based around the harms and benefits of a particular treatment – why would they choose not to share them? Might those judgments be less about the clinical efficacy of CPR and more about whether the life of a patient with dementia or disability is deemed to be worth living? Are they, in short, playing God: choosing who “deserves” the chance of resuscitation, according to the presumed quality of their life?
The CQC has done a great service in highlighting all these concerns. The only way for the medical profession to address suspicion and mistrust around “do not attempt CPR” is with openness and candour.
It is clear that something went very wrong during the first wave of the pandemic. Careful, sensitive, personalised conversations with patients and families didn’t always happen. We can blame the chaos of an unfolding pandemic – every aspect of the UK’s National Health Service faced exceptional stresses – but the bottom line is we need to do better.
First, we need to explain that CPR means something very specific. It is the term we use for chest compressions and electric shocks to a heart that has stopped beating – and is reserved exclusively for someone who has already suffered a cardiac arrest. In a sense, the patient has already died: we are trying our hardest to resurrect them.
A “do not attempt CPR” order does not mean we make no attempt to prolong a patient’s life. All manner of other treatments may well be appropriate, such as fluids, antibiotics, admission to hospital, or even treatment in an intensive care unit. The only thing ruled out is chest compressions and shocks to the heart.
Like every other medical treatment – from chemotherapy to major surgery, and transplants to antibiotics – CPR has harms as well as benefits. Resuscitation is an ugly, aggressive and often traumatic treatment. Only in around 10% of cases does all the effort reap rewards. It is nothing like what you see on TV. Too often, the heart cannot be restarted and all we achieve is a cacophony of alarms, wires, shocks and needles in place of dignified dying.
Even if the patient’s pulse is restored, there is a risk their cardiac arrest may leave them profoundly brain damaged. During the pandemic, we have also been acutely conscious of the risks of removing patients from their homes – places they know and love – into a hospital environment steeped in Covid. This may save their life, but it may also mean they never see another human face again – only people in masks and machines at their bedside.
I believe that those rushed, overwhelmed doctors who failed to conduct proper “do not attempt CPR” discussions last year never intended to discriminate, ration treatment or deny care on the basis of arbitrary features such as age. I suspect, rather, that they were trying to avoid patients being subjected to undignified and futile attempts at resuscitation. They were trying, clumsily, to minimise harm. One of the defining questions of modern medicine is, after all, whether it is better to facilitate a peaceful death or to administer a heroic but possibly distressing treatment. We can almost always keep going, but should we?
Last year’s failings give us an invaluable opportunity to do things differently in the future. Better training on discussions over treatment should be embedded into medical school from day one. And it’s not just doctors who need to talk openly and clearly with patients and families. We could, as a society, do better. Advance care planning – deciding how aggressively you would like your doctors to intervene on your behalf – could start now, over a cup of tea, with your family. Let your husband or daughter know if you’d ever want to be ventilated or receive CPR. Make sure your wishes are known and communicated. Because, as we all know, you only die once. How much better to do it on your terms.
The UK’s Health and Social Care Department asked CQC to conduct a rapid review of how DNACPR decisions were used during the coronavirus pandemic, building on concerns that they were being inappropriately applied to groups of people without their knowledge. It is unacceptable for any DNACPR decisions to be made without proper conversations with the individual, or an appropriate representative, taking into account their wishes and needs.
An interim report published in December 2020 found that a combination of unprecedented pressure on care providers and rapidly developing guidance may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around critical care. This latest report also drew on fieldwork in seven Clinical Commissioning Groups (CCGs), responses to a national information request to providers of adult social care, a national public survey and ongoing engagement with voluntary sector organisations working in the area.
While most providers of adult social care, primary care and secondary care that we spoke to reported they were not aware of inappropriate DNACPR decisions, or DNACPR decisions being applied to groups of people, CQC received feedback from stakeholders, people who use services and their families and carers, that ‘blanket’ DNACPR decisions had been proposed at a local level. The regulator also heard examples of these being quickly challenged and retracted.
Across the review process, whilst inspectors did find some examples of good practice, they also found a worrying picture of poor involvement of people using services, poor record keeping, and a lack of oversight and scrutiny of the decisions being made. In its interim report, CQC made it clear that all care providers must assure themselves that any DNACPR decisions have been made appropriately, in discussion with the person and in line with legal requirements and best practice. These shortfalls in governance must be addressed if providers are to assure themselves that decisions were, and are, being made on an individual basis, and in line with the person’s wishes and human rights.
The pressure of responding to COVID-19 was found to have had an impact, including on the time that staff had to hold meaningful conversations. A lack of training and a large amount of rapidly changing guidance about all aspects of providing care during the pandemic also presented significant barriers.
However, the issues raised in this report – including limited understanding of the importance of good conversations around what should happen if someone was to become very ill, and the need for proper and consistent processes around this – pre-date the pandemic.
Rosie Benneyworth, chief inspector of primary medical services and integrated care at the Care Quality Commission said: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times.
“It is vital we get this right and ensure better end of life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.
“COVID-19 has brought this to the fore but these are not new issues. While this rapid review was not asked to make judgments on how decisions might have impacted individual cases, we have to take this opportunity to address these problems. We need to make sure that people have the opportunity to discuss their wishes about care and treatment in a compassionate and person-centred way.”
From the beginning of the COVID-19 pandemic, there were concerns that ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions were being made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person’s individual circumstances.
DNACPRs are also known as DNRs and DNARs. In our report we use DNACPR for consistency.
In October 2020, the Department for Health and Social Care commissioned CQC to conduct a special review into these concerns. Our review, which took place between November 2020 and January 2021, looked at how DNACPR decisions were made in the context of advance care planning, across all types of health and care sectors, including care homes, primary care and hospitals.
During our review, we heard about the experiences of over 750 people and about the distress that people face when they do not feel involved in decisions about their care. When done well, DNACPR decisions are an important aspect of advance care planning, and people should be fully involved in discussions about their care.
Our findings show that there needs to be a focus on three key areas:
1. Information, training and support
The quality of people’s experiences is greatly impacted by having the time and information they need to talk about what care and support they want.
People’s experiences of DNACPR decisions varied. We heard that some people felt they had been involved in the decision-making process, as part of a holistic conversation about their care. However, others felt that conversations around whether they would want to receive cardiopulmonary resuscitation (CPR) came out of the blue and that they were not given the time or information to fully understand what was happening or even what a DNACPR was. In some cases, people were not always aware that a DNACPR decision was in place. This could be hugely distressing for people and their families and/or carers.
It is concerning that some people across a range of equality groups, including older people, people with dementia and people with a learning disability, told us that they were not supported to the extent they needed to be in advance care planning conversations, or given the information they needed in an accessible way.
Every DNACPR decision must take account of each person’s individual circumstances or wishes. While most providers we spoke with were unaware of DNACPR decisions being applied to groups of people, we heard evidence from people, their families and carers that there had been ‘blanket’ DNACPR decisions in place.
The training and support that staff received to hold these conversations was a key factor in whether they were held in a person-centred way, that met people’s needs and protected their human rights.
If people and health and care staff are not fully informed about advance care planning, or given the opportunity and enabled to discuss DNACPR decisions in a person-centred way, there is a clear risk of inappropriate decision making and a risk of unsafe care or treatment. It also raises concerns that people’s human rights and rights under the Equality Act 2010 had not been considered or were at risk of being breached.
2. A consistent national approach to advance care planning
There is a need for a consistent national approach to advance care planning and DNACPR decisions, and a consistent use of accessible language, communication and guidance to enable shared understanding and information sharing among commissioners, providers and the public.
Across all the areas that we looked at, there were many types of advance care planning in use. These included ReSPECT plans, local treatment escalation plans and DNACPR decisions.
Not only do these models use different approaches, but they also use different types of forms and documentation. This lack of consistency and the problems this causes could affect the quality of care received by the person, and result in missed opportunities to support them in the right way at the right time.
How health and care professionals talked about advance care planning and DNACPR decisions also varied. The huge number of acronyms and use of inaccessible language could be confusing and prevent people from being fully engaged in conversations around their care.
Every area we looked at had taken steps to make sure that services were aware of the importance of taking a person-centred approach to DNACPR decisions and advance care planning. However, we found that providers had to cope with a huge amount of guidance about all aspects of the pandemic that lacked clarity and changed rapidly, leading to confusion.
3. Improved oversight and assurance
There is an urgent need for regional health and care systems, including providers, clinical commissioning groups and patient representative bodies, to improve how they assure themselves that people are experiencing personalised, compassionate care in relation to DNACPR decisions.
Most providers and health and care professionals told us that people, their families, carers or advocates were involved in conversations about their care, including DNACPR decisions. But poor record keeping and lack of audits meant that we could not always be assured that people were being involved in conversations about DNACPR decisions, or that these were being made on individual assessments.
Once DNACPR decisions were in place, it varied whether providers and local systems reviewed them. We were also concerned about whether local areas had oversight of training and support for health and care professionals to ensure they were making sound clinical decisions that are person-centred and protect people’s human rights.
This is an overview of our recommendations. Read our recommendations in full, including the lead responsible bodies.
DNACPR decisions need to be recognised as part of wider conversations about advance care planning and end of life care, and these decisions need to be made in a safe way that protects people’s human rights.
Information, training and support
People must always be at the centre of their care, including advance care planning and DNACPR decisions.
Everyone needs to have access to equal and non-discriminatory personalised support around DNACPR decisions, that supports their human rights.
Clinicians, professionals and workers must have the knowledge, skills and confidence to speak with people about, and support them in, making DNACPR decisions.
A consistent national approach to advance care planning
People, their families and representatives need to be supported, as partners in personalised care, to understand what good practice looks like for DNACPR decisions.
People, their families and/or representatives, clinicians, professionals and workers need to be supported so that they all share the same understanding and expectations for DNACPR decisions.
People need to have more positive and seamless experiences of care, including DNACPR decisions, when moving around the health and care system.
Improved oversight and assurance
There must be comprehensive records of conversations with, and decisions agreed with, people, their families and representatives that support them to move around the system well.
Integrated care systems need to be able to monitor and assure themselves of the quality and safety of DNACPR decisions.
Health and social care providers must ensure that all workers understand how to speak up, feel confident to speak up and are supported and listened to when they speak up.
CQC must continue to seek assurance that people are at the centre of personalised, high-quality and safe experiences of DNACPR decisions, in a way that protects their human rights.
Full report in The Guardian (Open access)
Quality Care Commission material
Quality Care Commission review