Long read: Grave concern over DNR’s

Stories in the press concerning DNACPR

A GP practice in Wales sent letters to patients asking them to complete a DNACPR form (1). The letter was reported to state: “Completing a DNACPR will have several benefits: 1. your GP and more importantly your friends and family will know not to call 999. 2. scarce ambulance resources can be targeted to the young and fit who have a greater chance.”The letter also stated that in an “ideal situation” doctors would have had this conversation in person with vulnerable patients but had written to them instead due to fears they themselves might be asymptomatic carriers of the virus. The practice later apologised to recipients of the letter.

Other stories included a GP surgery in Somerset writing to adults with autism and telling them they should have plans to prevent them being resuscitated; the letter was later withdrawn after criticism (2). According to the Guardian newspaper, “Elderly care home residents have been categorised “en masse” as not requiring resuscitation, in a strategy branded unacceptable by the healthcare regulator. People in care homes in Hove, East Sussex and south Wales are among those who have had “do not attempt resuscitation” notices applied to their care plans* during the coronavirus outbreak without proper consultation with them or their families” (3). The Mirror also carried an article about letters sent to adult patients as well as parents of children with chronic conditions who were asked if they wanted to have DNACPR statements agreed in case of admission to hospital with coronavirus (4).

The Health Service Journal publicised concerns from a learning disability care provider of an unprecedented increase in the number of DNACPR letters it had received. A spokesperson from the provider commented: “Making an advance decision not to administer CPR if a person’s heart stops, solely because they have a learning disability, is not only illegal, it is an outrage. We are seeing DNR orders that have not been discussed with the person themselves, the staff who support and care for them, or their families. This is very concerning as it may potentially lead to people being denied life-saving treatment that other patients would be granted” (5). NHS Trusts, GPs and clinical commissioning groups have been told by NHS England they must not send out blanket DNACPR forms.

 What is CPR and what is a DNACPR?

In a 34-page document, the British Medical Association, Royal College of Nursing and Resuscitation Council (UK) provide detailed guidance on decisions relating to cardiopulmonary resuscitation (6). CPR was introduced in the 1960s when it was found that for some people, the heart could be restarted after it had stopped beating, the usual scenario being after having a heart attack. The probability of CPR being successful in other situations is generally low. CPR involves compressing the chest, delivering high voltage electric shocks to the chest, attempts to ventilate the lungs and giving intravenous drugs. Injury to ribs and internal organs may occur and some patients may survive only to spend long periods on intensive care without full recovery. This is why people talk about ‘risks and benefits’ of CPR.

The heart and breathing stopping is a natural part of dying from any cause. If CPR is used in people who have been gravely ill it is very unlikely to work and means their life could end in an undignified manner with what amounts to a violent assault because their wishes were not known. To prevent this happening patients can be asked in advance about their wishes following a full exploration of the issues. In normal circumstances, therefore, the decision not to attempt CPR is made after a discussion between patient and doctor when an understanding is reached that because of frailty, or because the heart stopping is the final stage of an irreversible dying process, the potential benefits to the patients are outweighed by the risks (7). Standardised DNACPR forms were introduced to try and make sure patients’ wishes were recorded and would be available for care staff to action.

The detailed document from the professional bodies (6) starts with these three points:

1. 1. Considering explicitly, and whenever possible making specific anticipatory decisions about, whether or not to attempt CPR is an important part of good-quality care for any person who is approaching the end of life and/or is at risk of cardiorespiratory arrest.

1. 2. If cardiorespiratory arrest is not predicted or reasonably foreseeable in the current circumstances or treatment episode, it is not necessary to initiate discussion about CPR with patients.

1. 3. For many people, anticipatory decisions about CPR are best made in the wider context of advance care planning, before a crisis necessitates a hurried decision in an emergency setting.

What is advance care planning?

The purpose of advance care planning is to allow each individual to choose in advance what interventions, including CPR, they wish to receive in the event of deterioration in their health, whether that is due to progression of a known condition or to an unexpected sudden illness or injury. For many people with advanced or multiple medical conditions the optimal time to undertake advance care planning is when they are relatively stable, in their home or usual care environment where planning can be supported by the healthcare professionals who know them well. These may include doctors and nurses based in general practice, in the community, in hospices and in hospitals. Making a decision in advance also ensures that there is time for all the appropriate people to be involved in any decision. It also allows time for reflection and scrutiny of any decision.

 Decisions made may be written down in an ‘advance healthcare directive’, known variously as living will, personal directive, advance directive, medical directive or advance decision. This is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity (https://en.wikipedia.org/wiki/Advance_healthcare_directive).

Who is at risk of death from covid-19?

Data from China suggests that nearly 1 in 5 people over 80 years of age may need hospitalisation (8) making the elderly most at risk. It is estimated that around 1.28% of people who have confirmed covid-19 will die. Around half of patients ill enough to be admitted to ICU in the UK for ventilation have died; 95% of UK covid-19 deaths have occurred in patients who have underlying medical conditions. What we can see from the above is that asking people most at risk to decide what they would like to happen in the event of them becoming unwell and their heart stopping is sensible, and is good medical practice. There should never be a blanket application of DNACPR orders to particular groups (this would be discriminatory and illegal), and it should never be agreed without full consultation with the individual concerned. A complex face-to-face discussion with staff who know the patient is required - and this has clearly not happened in the examples cited from the press. Communication over DNACPR agreements may be affected by a real concern on the part of care workers of breaking social isolation rules and potentially infecting patients at home visits, however, poor communication over such sensitive issues breeds mistrust.

Considerations about advisability of CPR may also change with a shift in the risk-benefit ratio of interventions, for example in patients with covid-19 pneumonia who have a cardiac arrest, not only is there little likelihood of CPR restarting the heart, there is a potential for health personnel to become infected as a consequence of attempted resuscitation (7). “It is important to note that a ‘decision not to attempt CPR’ (DNACPR) applies only to CPR. All other appropriate treatment and care for that person should continue. It is crucial that this is widely understood not only by healthcare professionals but that it is made clear to patients and those close to them. This is essential as it is a common fear amongst members of the public that a ‘DNACPR’ decision will lead to withholding of other elements of treatment – this is not the case” (6). For example, if someone in a care home signs a DNACPR agreement it does not mean that they cannot be admitted to hospital if appropriate or that they cannot be considered for intensive care. It does mean that with their prior agreement, if during treatment their heart stops there would not be an attempt at full resuscitation.

There is genuine anxiety about availability of resources and how to use these to best effect should a situation arise that there are more patients than life saving equipment. The covid-19 pandemic is imposing a major challenge on a weakened NHS, with some groups such as the elderly and residents of care homes (9) and those with disabilities (10) clearly being marginalised. The simplistic government mantra of ‘stay at home, protect the NHS, save lives’ is not only leading people with other acute medical conditions not to seek attention when they need it, but is also encouraging those ill with covid-19 to stay out of hospital, sometimes dying at home when they might have survived.

Will there have to be rationing of intensive care?

The need to ration is a real worry.  We saw in Italy there were age cut offs applied for admission to intensive care, and ventilator treatment was withdrawn from some patients expected to do badly in favour of younger patients with a better outlook (11). These facts have been widely reported and discussed in our press, together with the fact that Italy had twice as many ventilators per 100,000 population as the UK and that we are following a similar trajectory to Italy in terms of cases. This idea of rationing life saving care is horrifying to medical and nursing staff and a truly novel situation with no current national guidance from the government or NHS England. It is easy to see how these sorts of worries mean that even when DNACPR agreements have been properly agreed with patients, they are misconstrued by others as denial of care. In addition, pandemics are breeding grounds for conspiracy theories which ultimately have negative consequences for patients (12,13), These can even be found in irresponsible mainstream media such as the Daily Mail, arguing that ventilators kill you – just look at how many people die in ICU! (14).

If there are not enough ventilators/ITU beds, how will life and death decisions be made?

Decision making will not be easy and will torment staff. Front line teams will try and work in accordance with accepted ethical principles, although this will not provide them with ready made answers. Daniel Sokol is an ethicist and barrister who writes a blog for the British Medical Journal and discussed the lack of national guidance. On 7th April he wrote: “It is no secret that intensive care unit (ICU) capacity may be overwhelmed if the pandemic worsens. Why then is there so little published guidance on ICU triage (the process of determining the most important people to focus on among a much larger number – JP) from the UK government and NHS Trusts? The Royal College of Physicians’ ethical guidance on covid-19, published on 2nd April 2020, stated that “any guidance should be accountable, inclusive, transparent, reasonable and responsive.” The British Medical Association’s ethical guidance, published the next day, emphasised the need for decisions to be made “openly, transparently, by appropriate bodies and with full public participation” (15).

Sokol posed the question: “where are the protocols setting out the triage criteria?” His suggested answer was that senior officials in government and NHS England may be reluctant to publish anything that might clash with the current messaging that the NHS is managing present demand and is likely to continue to cope: “The official message is that with continued communal efforts the NHS can be protected, ICU need not be overwhelmed, and tragic choices will be avoided. Publishing a document that contemplates an NHS in chaos and tragic choices aplenty sits awkwardly with that message”. He also wondered if fear of legal challenge was a factor. The National Institute for Health and Care Excellence (NICE), for example, was threatened with judicial review on publishing its Covid-19 guideline for clinical care, causing it to amend its advice due to concerns about unlawful discrimination against people with long-term conditions such as autism and learning disabilities. It may also be relevant that the 2019 National Security Risk Assessment identified the possibility of public outrage directed against the authorities if the health and care systems were seen to struggle, especially if provision of the remaining services was unevenly distributed (16).

Where does that leave front line staff and those of us who may become patients?

As stated, it is appropriate for DNACPR agreements to be discussed with people at higher risk of admission to hospital with covid-19. Such discussions should take place whenever possible in advance of any admission and according to the existing clearly laid out guidance and should usually be part of advance care planning (17). There is no national DHSC or NHSE ethical guidance for front line staff and senior managers relating specifically to covid-19, but some has been produced by the British Medical Association (BMA), Royal Colleges and specialist medical bodies. The guidance has been provided in recognition of the unique situation of possibly running out of life saving intensive care equipment.

The BMA advises members (18) that:

All patients should be given compassionate and dedicated medical care including symptom management and, where patients are dying, the best available end-of-life care. Nevertheless, it is legal and ethical to prioritise treatment among patients. This applies where there are more patients with needs than available resources can meet.” To decide which patients to treat:“You need to follow your organisation’s guidelines and protocols, including relevant procedures for making complex ethical decisions. The speed of patient's anticipated benefit will be critical. Other relevant factors include: severity of acute illness; presence and severity of co-morbidity; frailty or, where clinically relevant, age.

Managers and senior clinicians will set thresholds for admission to intensive care or the use of highly limited treatments such as mechanical ventilation or extracorporeal membrane oxygenation (heart-lung machine – JP) based on the above factors. Patients whose probability of dying, or requiring prolonged intensive support, exceeds this set threshold would not be considered for intensive treatment. They should still receive other forms of medical care. Prioritisation decisions must be based on the best available clinical evidence, including clinical triage advice from clinical bodies. These criteria must be applied to all presenting patients, not only those with Covid-19.

The Royal College of Physicians guidance (19) emphasises:

Any decisions made to begin, withdraw or withhold care must also comply with the shared decision-making policies of the NHS. This means that these decisions should include the patient and their wishes (as much as is feasible for the given situation) and, if appropriate, the patient’s carers. This is true regardless of whether the patient has Covid-19.

Front-line staff, policymakers, management and government have a responsibility to patients to ensure that any system used to assess patients for escalation or de-escalation of care does not disadvantage any one group disproportionately. Treatment should be provided, irrespective of the individual’s background (e.g. disability) where it is considered that it will help the patient survive and not harm their long-term health and wellbeing.

Many front-line staff will already be caring for patients for whom any escalation of care, regardless of the current pandemic, would be inappropriate, and must be properly managed. We strongly encourage that all front-line staff have discussions with those relevant patients for whom an advance care plan is appropriate, so as to be clear in advance the wishes of their patients should their condition deteriorate during the pandemic.

There is an urgent need for national guidance from the DHSC and NHSE on how to manage if resources run out. 

In the absence of such guidance, clinicians in individual hospitals or through specialist societies will be using the available evidence to assist in making extremely challenging decisions (20) and trying to work within the ethical framework outlined above. This will not be an easy task as illustrated by one Italian doctor who commented:

If you admit an 82-year-old with hypertension, in a situation where you have two or three patients waiting outside your I.C.U. who have many more chances of survival that you cannot admit because your I.C.U. is full, then it becomes really inappropriate, or I would say, immoral (11).

It is outrageous that medical staff in the UK may be put in this position, particularly since it will in part be due to government incompetence (21,22). The situation is summed up in a statement from Doctors in Unite (23):

Medical ethics is based on four broad principles: doing good, avoiding doing harm, respect for personal autonomy, and justice or fairness. Justice is also a fundamental principle of our NHS, that effective treatment must be available on the basis of need, rather than ability to pay, sex, gender, race ethnicity, marital status or, crucially in this situation, disability. As a union we believe that more could have been done, and still should be done in the Covid-19 epidemic to ensure that there are sufficient critical care beds, ventilators and staff to support  all who need them. While resources remain scarce we reluctantly recognise that services may need to be rationed. We affirm that this must be on the basis of case by case decision making as to who has the best chance of returning to the level of function they had before they fell ill. Blanket decisions covering large groups are unlikely to be fair and may result in harm, or even preventable deaths.  It would be manifestly unjust and unethical, to exclude people from critical care simply on the basis of pre-existing disability.

 

John Puntis Co-Chair Keep Our NHS Public

References

1. https://www.theguardian.com/society/2020/mar/31/welsh-surgery-says-sorry-after-telling-the-very-ill-not-to-call-999
2. https://www.bbc.co.uk/news/uk-england-somerset-52217868
3. https://www.theguardian.com/world/2020/apr/01/uk-healthcare-regulator-brands-resuscitation-strategy-unacceptable
4. https://www.mirror.co.uk/news/uk-news/vulnerable-kids-parents-covid-coronavirus-21852510?fbclid=IwAR0fj0gnZLUfOe8JZnKMpBAycBs3i6POiou8T_y1cGn-7DTe_zA1BvRdooo
5. https://www.hsj.co.uk/coronavirus/unprecedented-number-of-dnr-orders-for-learning-disabilities-patients/7027480.article?mkt_tok=eyJpIjoiTldOaFlUQm1OVFpqTkRVdyIsInQiOiI4cXVZcjd1amN1QzF5N0NEeE1mUEw2V0ZSVkcxUzZIR1M3cVRXeE9HZStEbklKSTNWSisxOHg3MlZPYXlQM3dXNGxxVXRaV2lGNVlyQ284VnZEVEw3UTYrREd1SDc4d2ZwUWNRQUFyNFdDc1dCRkViUm1sTXFhelN3SUlwc1BcL0MifQ%3D%3D
6. https://www.resus.org.uk/dnacpr/decisions-relating-to-cpr/
7. https://www.bmj.com/content/bmj/369/bmj.m1387.full.pdf
8. Verity R, Okell LV, Dorigatti I et al. Estimates of the severity of coronavirus disease 2019: a model based analysis. Lancet. https://doi.org/10.1016/S1473-3099(20)30257-7
9. https://www.hsj.co.uk/patient-safety/prejudiced-hospital-admissions-guidance-for-the-elderly-dropped-by-nhse/7027414.article
10. https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people
11. https://www.nytimes.com/2020/03/23/world/europe/italy-coronavirus-hospitals.html
12. https://www.bbc.co.uk/news/health-52337951
13. https://www.newstatesman.com/science-tech/coronavirus/2020/04/why-pandemics-create-conspiracy-theories
14. https://donotlink.it/AlYnB?fbclid=IwAR34iyInz8R6QcXWJ88jvgAMV_Hi_grmKDLQeOqWIReyUQLmhlZCzuD2HIw
15. https://blogs.bmj.com/bmj/2020/04/07/daniel-sokol-where-are-the-icu-triage-protocols/
16. https://www.theguardian.com/world/2020/apr/24/leaked-cabinet-office-briefing-on-uk-pandemic-threat-the-key-points
17. https://www.bmj.com/content/356/bmj.j813
18. https://www.bma.org.uk/advice-and-support/covid-19/ethics/covid-19-faqs-about-ethics
19. https://www.rcplondon.ac.uk/news/ethical-guidance-published-frontline-staff-dealing-pandemic
20. https://www.ft.com/content/d738b2c6-000a-421b-9dbd-f85e6b333684
21. https://www.theguardian.com/world/2020/apr/19/government-under-fire-failing-pandemic-recommendations
22. https://www.thetimes.co.uk/article/coronavirus-38-days-when-britain-sleepwalked-into-disaster-hq3b9tlgh
23. https://doctorsinunite.com/2020/04/07/medical-ethics-during-the-coronavirus-pandemic/

*Age UK says “you should be involved in putting together your care plan so make sure to share your views and preferences Your care plan shows what care and support will meet your care needs. You’ll receive a copy of the care plan and a named person to contact.

Your care plan should cover:

• outcomes you wish or need to achieve
• what your assessed needs are
• which needs your local council will meet and how they will meet them
• information and advice on how to prevent, reduce or delay your future needs for social care
• your personal budget figure - the amount of money to arrange the care and support you need
• details of any direct payment that is agreed
• https://www.ageuk.org.uk/information-advice/care/arranging-care/care-needs-assessment/care-plans/