To date there have been nearly 150,000 deaths in the UK with covid-19 listed on the death certificate. We have all been touched with the loss of a loved one over the last year, or will know people who have. Many of these lives lost have been in the elderly and frail. Early in the pandemic, as hospitals were overwhelmed, instructions were sent to doctors to ensure that anticipatory care planning was in place for at risk patients. This of course included updating documentation regarding patient’s wishes for resuscitation in the event of cardio-respiratory arrest, and ensuring that paperwork was in place, in the form of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms.
While this should always be done in an individualised and holistic manner, reports from regulators such as the Care Quality Commission, from voluntary sector organisations including Compassion in Dying, and in the media suggest that under the pressures of the pandemic, decisions may have been made in haste, without the normal levels of discussions—or in a minority of cases as a blanket decision.
These important and sensitive conversations should be made in a careful and protected environment, and then need to be translated into concrete and clearly documented action plans, including, if appropriate, a DNACPR form. Patients may also wish to discuss other patient-led documents such as an Advance Decision (also known as a Living Will—to refuse other life-sustaining treatments), an Advance Statement (to record other information that is important to them regarding their care and treatment) and/or a Lasting Power of Attorney for Health and Welfare (to appoint a trusted person to make these decisions on their behalf in case of a future loss of capacity).
These plans need to stay with the patient between health and care settings, need to be available to out-of-hours services, and should ideally give clear directions on what to do or NOT to do in an emergency situation—for example whether or not to admit to hospital, to intubate, to start CPR, or to have intravenous medications or blood products—according to the patient’s wishes.
Advance care planning (ACP) can be a complex, time-consuming process. The discussions around end of life decisions can, for some, be very emotive and or difficult. From experience, they are best made in advance of any emergency situations, ideally by doctors who know the patient and the family. I would go as far as suggesting that these discussions can be best done by GP teams who have an ongoing knowledge of their patients, are able to take their wishes into account and can liaise with next of kin or appointed advocates where necessary.
However, research by Compassion in Dying suggests that there is significant variation in the awareness and understanding among GPs across the UK of advance care planning tools, particularly patient-led forms such as Advance Decisions. Improved training and support for medical teams is necessary to ensure that we all feel confident and equipped to have these important conversations with our patients in a calm, timely fashion. And ideally well in advance of any health crisis.
In contrast where DNACPR (Do not attempt cardio-pulmonary resuscitation) forms are filled in an emergency setting, they will likely be made at a time of stress, and will probably be completed by a medical team who are unaware of the full psycho-social and physical background, and who have no ongoing relationship with either the patient or relatives. During the pandemic this has been made all the more difficult due to the unprecedented pressures on hospitals and the fact that relatives have been unable to be present in person.
An odd quirk of the traditional DNACPR forms is that they do not require the signature of either the patient or an approved advocate. They are completed by medical teams following discussions with the patient, their families or advocates. If necessary they can be signed in “best interests.” Under current UK law, a DNACPR decision is made by clinicians and does not require consent, however after a High Court case in 2014 clinicians are required to consult the patient or their families, except in limited circumstances. A decision not to resuscitate a patient should always be an individual one. However, it has become clear that during the coronavirus pandemic there have been examples of blanket DNACPR orders made for care home residents and some patients with learning difficulties, on this basis alone. The distressing impact this may have caused patients and families, and the erosion of trust in the medical profession cannot be underestimated. The NHS has clearly stated that having a learning disability does not justify use of a DNACPR order and that doing so could be a breach of human rights.
The CQC (Care Quality Commission) were asked to investigate in October 2020 and published their findings “Protect, Respect and Connect” on 18 March 2021. They have found that 508 “do not attempt resuscitation” (DNAR) decisions made since March 2020 may not have been properly discussed with the person or their family. Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care for CQC 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 loved 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.”
In a recent recent Blog from BMJ Supportive and Palliative Care, Linda Dykes, Mark Taubert, and Usha Grieve stated that “reports of blanket decision-making, where decisions about CPR are made on the basis of characteristics such as age or whether a person has a learning disability, are completely unacceptable (and unlawful). The impact that this and poor communication has on patients and family members is huge. It causes significant distress and, importantly, risks eroding trust between people and their doctors.
However, DNACPR decisions—when done well, and communicated in a timely and sensitive way—can play an essential part in making a person’s end-of-life experience a good one. It is vital that everyone working in health and care collaborates to learn from the lessons of the pandemic. Just as importantly, we must work to build public trust and understanding of the role DNACPR decisions play in providing high-quality, personalised care.”
The issues highlighted by covid-19 and analysed in the recent reports, including the 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—all pre-date the pandemic. There are excellent resources available from Compassion in Dying, and The Resuscitation Council UK has produced a range of resources called ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) to assist clinicians. The ReSPECT process is far more comprehensive and flexible than the traditional simple DNACPR and can help to provide, “personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices….created through conversations between a person, their families, and their health and care professionals to understand what matters to them and what is realistic in terms of their care and treatment.”
It is clear that the issues around ACPs and DNACPR decisions are highly emotive, predate the pandemic, and have now been highlighted. It is also clear that there is marked variation in the use of DNACPR forms with widespread use of the newer ReSPECT process in many areas including Shropshire, the Midlands and Nottingham. There is a pressing need for a consistent, national approach to ACP and DNACPR decision-making. There must be training in place to ensure that patients experience standardised, personalised, and compassionate care in relation to these important conversations regarding end of life care decisions. Any forms used should be patient centred, clear, and ideally be nationally accepted and used by both community and hospital teams. There must also be a universal approach to record-keeping and sharing of DNACPR forms and other advance care planning tools.
There will never be a better time than now to make positive changes in response to the pandemic and recent CQC report—and this should include the involvement of patients and carers in end of life care decisions unless in exceptional circumstances and the adoption of a standardised, universally accepted national DNACPR form such as the ReSPECT process.
- See also: David Oliver: Improving DNACPR discussions, decisions, and documentation
Simon Hodes has worked as a GP partner in the same Watford practice since 2001, and is also a GP trainer, appraiser and LMC rep. The views expressed above are his own. Twitter: @DrSimonHodes
Competing interests: none declared.