The rising death rate from COVID-19 and the pressure of the pandemic on a weakened NHS have caused warranted anxiety. There were reports from Italy of rationing, when life saving equipment was simply unavailable for some sick patients, and difficult triage decisions had to be made by doctors. Many deaths in the UK are occurring among elderly residents of care homes, and unlike deaths in hospital, these have not been given prominence in daily reports.
Press coverage has indicated that Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) agreements have been misused. Rather than an agreement on a one to one basis after full discussion and as part of advance care planning, marginalised groups such as the elderly and disabled have been asked for consent by letter. In some cases decisions have been made on their behalf.
Such agreements should only apply to what happens in the event of the heart stopping during an illness, but they have been wrongly interpreted as consent to not having treatment for illness, or not being admitted to hospital.
Professional bodies such as the British Medical Association are attempting to provide an ethical framework for health care staff faced with impossible decisions regarding rationing and who should take precedence. Not only has the government failed to provide guidance on this matter, perhaps because it undermines their narrative that the NHS is coping with the onslaught and will continue to do so. Their grotesque incompetence in failing to follow World Health Organisation advice has put front line workers in an unprecedented position: having to make decisions about who should and who should not receive care.
The government, policymakers, managers and clinicians have a responsibility to patients. They must ensure that any system used to assess the escalation or de-escalation of care does not disadvantage any one group disproportionately. Treatment should be considered irrespective of a person’s background when it can help them survive, balanced against the risk of that treatment causing harm.
A GP surgery in Wales sent letters to patients asking them to complete a DNACPR form, reportedly stating “several benefits” to its completion. The form explained that “your GP and more importantly your friends and family will know not to call 999” and that “scarce ambulance resources can be targeted to the young and fit who have a greater chance.”
In an “ideal situation”, it continued, doctors would have had this conversation in person with vulnerable patients, but had written instead due to fears the doctors may be asymptomatic carriers of coronavirus. The practice later apologised to recipients of the letter.
A GP surgery in Somerset also wrote letters to a support group for adults with autism, requesting they make plans to prevent their clients being resuscitated if they become critically ill. The letter was later withdrawn after criticism.
The Guardian has reported that “elderly care home residents have been categorised ‘en masse’ as not requiring resuscitation”, and that “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”.
The Mirror also reported that adult patients and parents of children with chronic conditions were sent letters asking if they wanted to have DNACPR statements agreed in case of admission to hospital with coronavirus.
A learning disability care provider described an unprecedented increase in the number of DNACPR letters it had received. In the Health Service Journal their spokesperson said “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”.
NHS Trusts, GPs and clinical commissioning groups have been told by NHS England they must not send out blanket DNACPR forms.
The British Medical Association, Royal College of Nursing and Resuscitation Council UK provide detailed guidance on decisions relating to cardiopulmonary resuscitation. CPR was introduced in the 1960s following recognition that some hearts could be restarted when they had stopped beating, often after a heart attack.
The probability of CPR being successful in other situations is generally low. It involves compressing the chest, delivering high voltage electric shocks to the heart, attempts to ventilate the lungs and giving intravenous drugs. Injury to ribs and internal organs may occur and some patients survive only to spend long periods in intensive care without full recovery. This is why people talk about the risks and benefits of CPR.
The heart and lungs stopping is a natural part of dying from any cause. When CPR is used in people who have been gravely ill it is very unlikely to work. Rather than a peaceful death, their lives could end in the context of aggressive but futile attempts to change an irreversible process.
To prevent this happening patients can be asked well in advance about their wishes, with a full exploration of the issues involved. In normal circumstances, the decision to not attempt CPR is made after a discussion between patient and doctor. An understanding can be reached that because of frailty, and because the heart stopping is the final stage of an irreversible process of multiple organ failure, the potential benefits to the patients are outweighed by the risks of pain and indignity.
Standardised DNACPR forms were introduced to attempt to ensure patients’ wishes were recorded and would be easily available to healthcare staff. They do not have to be signed by patients. The member of the healthcare team who has discussed CPR with the patient signs the form, as does the responsible senior clinician (this may well be the same person).
Doctors are told by their professional organisations that “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.
“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.
“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.”
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. For people with multiple conditions, or those who are severely unwell, the optimal time to undertake advance care planning is when they are relatively stable. Discussions are best had 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 or in hospitals. Making a decision in advance ensures that there is time for all the appropriate people to be involved in a decision. It allows time for reflection and scrutiny.
Decisions made may be written down, and described variously as a living will, personal directive, advance directive, medical directive, or advance decision. This is a legally enforceable document in which a person specifies what treatments or interventions they would not wish to undertake in the future if they are unable, due to illness, to give their opinion at that time.
Nearly one in five people over 80 may need hospitalisation with COVID-19. An estimated 1.28% of people diagnosed with 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 with underlying medical conditions.
Consequently asking people most at risk to decide what they would like to happen in the event of them becoming unwell is sensible, and good medical practice.
It is however important to distinguish this from a blanket application of DNACPR orders to particular groups. This is discriminatory and illegal. There must be full consultation with the individual concerned. A thorough face-to-face discussion with staff who know the patient well is required. This has clearly not happened in the examples cited in the press.
Care workers may worry about breaking social isolation rules and potentially infecting patients at home visits. There are ways around this, including video consultations. Poor communication over such sensitive issues breeds mistrust.
The risks and benefits of CPR may change in the context of coronavirus. In patients with COVID-19 pneumonia who then have a cardiac arrest, not only is there little likelihood of CPR restarting the heart, there is the potential for health personnel to become infected as a consequence of attempted resuscitation.
Professional guidelines are however quite clear. “A decision not to attempt CPR applies only to CPR. All other appropriate treatment and care for that person should continue. It is important that this is widely understood by healthcare professionals and 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.”
For example, if someone in a care home agrees to a DNACPR, it does not mean they cannot be admitted to hospital if appropriate, or that they cannot be considered for intensive care. It only means that if their heart stops, resuscitation would not be attempted.
There is an anxiety about the availability of resources if the number of patients overwhelms the amount of life saving equipment available. The COVID-19 pandemic is a major challenge for a weakened NHS. The elderly, care home residents and those with disabilities are being marginalised. The government mantra of “stay at home, protect the NHS, save lives” led people with acute medical conditions to avoid medical attention when they needed it, and encouraged some ill with COVID-19 to stay out of hospital, dying at home when they may have survived.
The idea of rationing life saving care is anathema to healthcare staff, but it may be on the horizon. In Italy, which has twice as many ventilators per 100,000 population as the UK, there were age cut-offs applied for admission to intensive care. Ventilator treatment was withdrawn from some patients expected to do badly in favour of younger patients with a better prognosis.
If rationing does become a reality, front line teams will try and work in accordance with accepted ethical principles. This will unfortunately not provide perfect answers.
Ethicist and barrister Daniel Sokol described the dilemma on April 7th. “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 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’.”
Sokol asked, “Where are the protocols setting out the triage criteria?” He suggested that senior officials in the 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 was threatened with judicial review on publishing its COVID-19 guideline for clinical care. This advice was subsequently amended due to concerns about unlawful discrimination against people with long-term conditions including autism and learning disabilities.
The 2019 National Security Risk Assessment also highlighted the potential for public outrage if health and care systems were seen to struggle, especially if provision of the remaining services was unevenly distributed.
There are no ethical guidelines from the Department of Health or NHS England for front line staff and senior managers relating specifically to COVID-19, but the British Medical Association (BMA), Royal Colleges and specialist medical bodies have produced their own.
The BMA suggests, “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 help decide which patients to treat, they ask doctors 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 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 says, “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 Department of Health and NHS England on how to manage if resources run out. In the absence of such guidance, individual clinicians will be using the available evidence to assist in making extremely challenging decisions.
This will not be an easy task, as illustrated by one Italian doctor speaking to the New York Times. “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”.
Dr John Puntis is the co-chair of Keep Our NHS Public