I rise to speak about the use of “Do not attempt cardiopulmonary resuscitation” notices during the pandemic. Last year, the health service was hit by the worst crisis in its history. The whole country was told to stay at home for one simple reason: to save the NHS. That meant not overwhelming the system with too much demand—too many people needing care. We faced a real nightmare scenario of the NHS not being able to treat people who were sick and dying. The horrific idea emerged of doctors or local health managers or the NHS itself having to play God to decide who should live and who should die by deciding who should get treatment and who should not. Thankfully, the NHS was not overwhelmed. This, of course, was mostly due to the heroic work of frontline staff. It is also because every measure possible was put in place to reduce pressure on hospitals. That included people staying at home, building new hospitals at record speed and getting people out of hospital as fast as possible, including to care homes. This is where the occasion for the DNACPR notices came about.
Care homes found themselves under enormous pressure, too. Stories emerged last spring of blanket DNACPR policies being put in place in care settings. They were for people with certain characteristics—people with learning disabilities, people with certain complex needs, and people with life-limiting illnesses. This was done, the report said, without consultation with patients themselves or with families. All this was quite wrong and against all the guidance. Indeed, in April last year, the Care Quality Commission issued a joint statement with the British Medical Association, the Care Provider Alliance and the Royal College of GPs, reminding all providers that it is unacceptable for advanced care plans with or without DNAR notices to be applied to groups of people of any description. I am pleased that they did it. I am particularly pleased that the Department of Health and Social Care— I understand that the Minister herself was responsible—asked the CQC to investigate these reports and to review how DNAR orders were used during the pandemic. I will come to its findings in a moment.
I want to make it clear that DNACPR orders are an appropriate part of our health and care system and can be a right and proper part of an individual’s care plan. We need to distinguish between what might be called beneficial and futile uses of CPR. An obvious example of beneficial CPR is for young people with neuro-degenerative conditions. Respiratory arrest is common for these patients, but with CPR they have an almost 100% survival rate. For them, it is essential and necessary. If a patient’s other vital organs are shutting down—if they are dying—CPR can do little.
The hon. Gentleman and I share a very common cause, and I appreciate him bringing this debate forward. Does he not agree that for families such as mine who, last year, lost a loved one—my mother-in-law—we would like to believe that any and every measure was taken to save life? The stories that we have heard and that he has referred to are certainly heartbreaking. I very much share his concern.
I thank the hon. Gentleman for his intervention and I extend my condolences to him and his family for the loss that they have suffered. I absolutely agree with him. The value of this debate is perhaps to help communicate the expectation that all patients receive the care that they need right up until the moment of death.
CPR can greatly distress the patient and their family in the last moments. CPR involves a team rushing to the bedside, shoving aside any family members who are gathered around and using what is basically a violent procedure, sometimes involving the breaking of ribs to try to restart the heart. As one doctor interviewed about CPR described it, it can be chaotic, traumatic and brutal. That is not what any of us would wish when our death is imminent, even if it extends life for a few minutes or hours. I have every sympathy with doctors and care home staff who want patients who are approaching death and their families to consider using DNACPR notices, but we have to be really careful about how they are used. That is not just because of the obvious immorality of a blanket policy that effectively judges some people as worth saving and some people as better off dead without consideration for their circumstances or their wishes, but because having a DNACPR notice influences the care people get more generally. There is anecdotal evidence from care homes that patients who have requested they are not resuscitated are not cared for as well as others. They might miss out on antibiotics for a chest infection, for example, or some other treatment for a reversible condition.
The essence of the responsibility of doctors and care staff is that care should persist for all, whatever their condition or capacity. That responsibility is well established in law and guidance, and I particularly value the principles in the Mental Capacity Act 2005, which seeks fundamentally to honour the dignity of the individual, no matter their capacity or condition. The 2005 Act also sets out guidance on best interests, which is the test that should be used to determine medical treatment in the event of the individual being unable to decide for themselves. Crucially, a best interests consideration requires decision makers to take a view as if they were the patient. It is not about what they think is best, but what they think the patient would want, and that is vital.
I thank my hon. Friend the Member for Devizes (Danny Kruger) for securing this debate on the important issue of the use of “Do not attempt cardiopulmonary resuscitation” orders and the decisions that were taken during the pandemic.
We remain crystal clear that the blanket application of DNACPR decisions is unacceptable, and that standards and quality of care should be maintained even in pressurised circumstances such as we have had over the past year with the recent pandemic. Reports of inappropriate or blanket application of DNACPR decisions across groups of people, particularly our most vulnerable, have been—I think my hon. Friend used this word himself—shocking, and failure to consult people and their families on decisions around CPR causes significant distress.
My hon. Friend mentioned that the review undertaken by the CQC also saw examples of good practice. Much work has taken place over the past year, and I would like to take this opportunity to update the House on the action that the Department, the NHS and clinical leaders have taken to tackle this issue and to ensure that excellent patient-centred care is maintained.
In April and May last year, clinical leaders issued a number of joint statements and letters to health and care providers and professional bodies, making it clear that there has never been an instruction or a directive issued by the NHS to put in place blanket DNACPR orders. Those communications also directly addressed and clarified best practice around the use of DNACPRs for people with learning disabilities, and rightly challenged assumptions about clinical frailty regarding that particular group of people.
Clear messages on the use of DNACPR decisions were also reinforced in our adult social care winter plan in September last year. We made it crystal clear that any advanced care decision, including DNACPR decisions, should be fully discussed with the individual and their family, where possible and appropriate, and signed by the clinician responsible for their care.
The CQC review concluded in February, and I am greatly relieved by some of its findings and very concerned by others. I am relieved that it did not find evidence of blanket DNACPR policies being applied as official practice by any health or care provider. It also found evidence of really good care being provided, including with the use of DNACPR orders on an individual case-by-case basis, with proper consultation and consideration of the patient’s best interests.
The CQC report also causes me concern that de facto blanket policies may have been in operation largely because we simply cannot tell everything that has been going on. The report highlights some very serious failings. Of the 166 care records that the CQC reviewed, 103 should have included a best interests assessment. In only 33 of these cases is there evidence of an assessment being carried out. Talking to patients and their families, the CQC found that 30% of patients with a DNACPR decision and 43% of families and carers did not feel that the patient’s best interests were fully considered. I am glad to say that the opinion of people with learning disabilities and their families was more positive about best interests considerations in their DNACPR decisions.
I do not believe that providers have been applying blanket policies, but what I am concerned about is the potential for such a thing. I am concerned that not all health and care providers are properly applying best interests considerations in the advance care planning they do with patients.
As the CQC said, we need to take a number of essential steps to prevent the possibility of abuse. There are three main practical recommendations, and I hope the Minister can confirm that her Department is working to implement all of them. The first is that we need a more consistent national approach to the use of these notices. That emphatically does not mean a blanket policy for which patients should receive them, but the opposite: a process to ensure that all patients are treated as individuals. The CQC report particularly highlighted the recommended summary plan for emergency care and treatment—or ReSPECT—process, which helps everyone involved to make informed decisions about an individual’s future care and treatment.
Secondly, we need to enable these conversations through proper investment in the training and support of the staff who will have them. Thirdly, and crucially, we need proper oversight and assurance that the decisions made have proper record keeping. It really is scandalous that that was not in place already last year. We need comprehensive records of conversations and decisions. Integrated care systems should be responsible for monitoring the use of DNACPR notices, and the CQC should be responsible for investigating anomalies, such as particularly high or low numbers of orders in particular places.
I conclude with a final and more general observation about what we need, which goes beyond these vital but ultimately technical remedies to the potential for abuse. We need a moral framework that honours the dignity of sick, disabled, elderly or dying people. That is not something that the CQC or the DHSC or this Parliament can simply draw up on a piece of paper. Indeed, I am nervous about the idea of over-regulating end-of-life care and reducing it to a process, because at the end of that road lies the awful scenario we are trying to avoid—a blanket rule on who should live and who should die.
We are never going to be able to write the rules of life and death and every attempt to do so is ultimately dystopian. That is why the ultimate locus of decision making should be in the conversations between doctors and patients, and those who know and love them. We cannot regulate for good conversations, but we can certainly do our best to facilitate them, and the CQC recommendations will help that. The only way to ensure good conversations is to ensure that doctors and families have at heart the best interests of patients. We in this place can encourage good conversations and the right decisions by stating as clearly as we can that human life is infinitely precious, right until the end.
I have personally been through this process recently. It is true, as my hon. Friend mentioned, that every end-of-life scenario is different. No two cases are ever the same. In my particular case, it was someone with very late stage 4 cancer, and the discussion was very simple and very easy and took a matter of moments. It involved family and clinician, but the person making that decision was very precise about what they wanted. That scenario exists frequently, but there are also people who may not have the full capacity or may require further input and discussions around the decisions that are being taken.
To ensure that we could take early learnings and address directly concerns about inappropriate DNACPR decisions, because we are aware of the variation, I commissioned the CQC to review how DNACPR decisions were being made during the pandemic. The CQC worked at pace to gather insight from across the health and care system. It took in views from experienced staff, and from patients, their families and representatives, to produce an in-depth thematic review of such an important yet complex—and it is complex—issue. I thank the CQC once again for its work, which was speedily and efficiently completed, as well as all those who participated in the review and shared their valuable insight and experience.
The review shone a light on what good conversations around end-of-life care should look like, illustrating examples of clinicians and care staff going above and beyond to deliver these conversations in a caring and compassionate way, despite the pressures posed by the pandemic. However, it also drew a worrying picture of the reasons that some of those conversations fell short of the high-quality and personalised care that people deserve. As my hon. Friend mentioned, the report identified three key areas where improvements must be made.
First, the CQC found a greater need for information, training and support for health and care professionals to hold DNACPR conversations. In particular, the report raised concerns that a range of equality groups, including
“older people, people with dementia and people with a learning disability,”
were not being supported in the right way.
Secondly, the report found that there lacked a consistent national approach to advanced care planning. The language used in holding DNACPR conversations was often complex, with many different types of advanced care plans in use. Clearly, this lack of consistency runs the ongoing risk of affecting the quality of care that people receive.
Finally, the report found that the right processes were not always in place to ensure that people experienced personalised, compassionate care in relation to DNACPR decisions. Poor record keeping and inconsistency in how DNACPR decisions were reviewed, as well as a lack of system oversight, meant that it was not always possible to understand how effective these conversations actually were.
Over the last year, our NHS and adult social care sectors have truly been the backbone of our nation, and staff have worked tirelessly to deliver outstanding care. Nevertheless, we must use these learnings as an opportunity to do better in areas where we can do more. Going forward, we must ensure that staff across health and social care have the tools required to hold these conversations appropriately and compassionately. We must also begin the journey towards normalising these conversations and giving patients, their families and representatives the knowledge to truly be equal partners in their care.
When staff, patients and their families have concerns, we must put in place the best processes to ensure that people feel supported to speak up. That is why we strongly recommend the findings of the review and, as the Minister responsible for this, why I am personally committed to driving forward its recommendations. To that end, I will be heading up a ministerial oversight group that will bring together partners from across the health and social care system, as well as the voluntary and advocacy sector, ultimately to ensure that everyone experiences the compassionate care that they deserve.
Sensitive and well communicated DNACPRs can and should be an important part of patient care. I am not sure whether my hon. Friend is aware that nhs.uk has now put up a public facing message to explain the process of DNACPRs, how those decisions should be taken and how those conversations should happen, so that everybody who wants to know what the process is can go to the website and see it for themselves. We deliberately made it a public facing message and wanted it to be part of the general conversation around this issue. We are committed to taking continued action to ensure that these decisions are managed and communicated well in all settings.