Ethical Guidance on COVID-19 and Primary Care
During the COVID-19 Pandemic, primary care staff are working under considerable pressure, are required to work differently and are making challenging decisions. We all need to consider our responsibilities to our patients, our practices, ourselves, our family and friends and the public. This guidance is intended to support with such decisions. It does not look to replicate or replace national guidance; it seeks to answer frequently asked questions (FAQs) by members using an ethical prism.
These FAQs will be updated as new guidance is added, events emerge, and new questions arise. Click on the heading to skip to the section.
An Ethical Framework
Prior to the 2009 flu pandemic, the Government issued an ethical framework in 2007 – revised in 20171 – designed to help people think through strategic aspects of decision making during a pandemic, as well as providing an ethical compass for clinicians. The following is a summary of the framework`s guiding principles and is also consistent with the relevant BMA COVID-19 guidance2.
Equal concern and respect: everyone matters equally, but this does not mean that everyone will be treated the same. The interests of each person are the concern of all of us, and of society.
Respect: people should be kept as informed as possible, have the chance to express their views on matters that affect them, have their personal choices about care and treatment respected and where they cannot decide, have decisions made in their best interests.
Minimising the harm of the pandemic: we should try to reduce the spread (of the pandemic), minimise the risk of complications, learn from experience (home and abroad), and minimise disruption to society.
Fairness: everyone matters equally. People with an equal chance of benefiting from resources should have an equal chance of receiving them – although it will not be unfair to ask people who could get the same benefit at a later date, to wait.
Working together: we need to work together to respond to the pandemic, helping one another, taking responsibility for our own behaviour and being prepared to share information that will help others.
Reciprocity: based on the concept of mutual exchange, if people take increased risks or face increased burden, they should be supported in doing so and risks and burdens should be minimised as far as possible.
Keeping things in proportion: information should neither exaggerate nor minimise the situation and should be as accurate as possible. Decisions taken to protect the public from harm should be proportionate to risks and benefits.
Flexibility: plans should be adapted to new information and changing circumstances.
Good decision-making: good decisions will be open and transparent, inclusive, accountable and reasonable.
Sometimes, there will be tension within and between these principles and a judgement may have to be made on the priority to be given to each principle in the context of particular circumstances.
Dr Victoria Tzortziou Brown (RCGP Joint Honorary Secretary) and
Professor Simon Gregory (Chair RCGP Ethics Committee)
We would like to thank the following colleagues, including GPs, ethicists, and lay members for their thoughtful contributions, constructive comments and generous effort to put this guidance together in a short timeframe.
Frances Cranfield, Grainne Doran, Kamila Hawthorne, Martyn Hewett, Richard Huxtable, Jonathan Ives, Richard Knox, Carey Lunan, James Matheson, Margaret McCartney, Catherine Millington-Sanders, Andrew Papanikitas, Owen Richards, John Spicer, Simon Stockley and Jonathan White.
COVID-19 related treatment decisions
As GPs, when we make clinical decisions, we often have to balance the needs of the individual patient and the needs of the population that we serve. The COVID-19 pandemic is likely to make such decisions more challenging because need for in-patient treatment and support may exceed the resources available.
When considering a referral, the following factors are usually taken into account:
- What treatment or other support the patient needs and is willing to accept (this question focuses on the individual patient`s clinical need and preferences); and
- What treatment or other support is available (this question refers to the public interest and therefore includes considerations of distributive justice and resource allocation).
GPs will need to assess whether the individual patient is likely to benefit from a referral to the hospital, taking into account relevant national and local guidance e.g. NICE Guideline (NG) 191 on COVID-19 rapid guideline: managing COVID-19 (https://www.nice.org.uk/guidance/ng191) incorporating the latest evidence on the effectiveness of clinical interventions (evidential approach to decision making). Decision-making should not be disease specific (see Royal College of Physician's Ethical guidance published for frontline staff dealing with pandemic)
Information on the potential benefits and risks of a hospital admission needs to be communicated to the patients and their family/carers to facilitate a shared decision-making approach which incorporates the patient`s preferences and best interests. Having proactive conversations and anticipatory care planning with the most at-risk patients, can improve the quality of such decision making.
Good communication and close working between ambulance and secondary care colleagues and commissioners are important in order to ensure the maximum benefit from the available resources.
Increasingly such decisions may need to be made by remote consulting and primary care professionals have developed experience in the assessment of COVID-19 symptoms and patients’ conditions remotely. The setting up of ‘hot hubs’ has also increased patient safety by reducing the presence of potential COVID-19 cases in practices whilst providing a more in-depth assessment of possible cases where necessary. Useful advice on remote working can be found within the COVID-19: a remote assessment in primary care, Greenhalgh T, Koh G H, Car J, British Medical Journal (BMJ) 2020; 368: m1182 (https://www.bmj.com/content/368/bmj.m1182) and the NICE Guideline (NG) 191 on COVID-19 rapid guideline: managing COVID-19 has a section on assessment in the community (https://app.magicapp.org/#/guideline/L4Qb5n/section/ERY1zn). Working together and consulting colleagues, as much as possible, can assist with making difficult decisions and provide mutual support.
Whilst referral for hospital treatment may not be always clinically appropriate or acceptable to the patient, all patients should receive compassionate medical care, including appropriate symptom management and, where patients are dying, the best available end-of-life care.
Communication with patients has changed dramatically during the COVID-19 pandemic. GP consultations are primarily done using remote methods (telephone/video) even when discussing complex issues. Other communications have been by post, (e.g. shielding letters) or media (including TV, radio, internet and social media groups). There has been a lot of conflicting or confusing information/ guidance, e.g. on facemasks or between UK nations.
The effect on recipients of the shielding letter
- The policy of shielding patients at the highest risk of severe morbidity and mortality from COVID-19, was developed in March 2020 based on expert consensus (the NHS England Clinical Reference Groups). Patients were sent letters informing them they were 'clinically extremely vulnerable to COVID-19’ and at ‘greatest risk of severe illness’. They were advised to undergo strict social isolation for at least 12 weeks.
- Justification for protecting this group of people lies within the ethical principles of Fairness, Equal Concern and Respect as well as harm avoidance.
- There is a balance of risk. The patient may benefit from avoiding infection, from additional support, such as food boxes and prioritisation for social care. The harms may include the anxiety of being told that they are in a high risk group, particularly if it is very difficult for them to self-isolate due to overcrowded accommodation, the stress of self-isolation for a protracted and possibly extended time, the potential for psychological distress and mental illness, and there may also be a risk attached to family or other members who must endure separation from the patient.
- One of the challenges of the original shielding letters was that they were sent out without oversight from the patient`s own GP. This original list included some patients who were not at higher risk and needed to be removed (for example, people receiving oxygen intermittently for cluster headaches) and missed other patients. GPs had to review these lists at a later stage.
- As the COVID pandemic progressed, and new evidence became available, the robustness of the risk stratification has been questioned. For example, it is now realised that people from certain ethnic minorities and in certain occupations are at higher risk.
- The guidance relating to patients with some conditions (e.g. Sarcoidosis) has repeatedly changed leading to increased confusion.
- Further, because of some of the social benefits of shielding, including increased chances of being allocated supermarket delivery slots, or the delivery of food parcels and prescriptions to their doors, doctors may have been put under pressure to list patients where there was no clear evidence of very high risk.
- Receiving the shielding letter may have caused anxiety to a number of vulnerable patients. According to anecdotal reports, some called it the ‘death letter’. Others received more than one letter from different sources, who were not joined-up in their approach. In some cases, the letter may have contributed to deterioration of mental health and anxiety symptoms. This may have been compounded by being socially and physically isolated for many weeks.
- Calls from GPs to patients with shielding letters may have made such anxiety worse. Offers to set up Advanced Care Plans, so that patients with their families and carers can, in good time, determine what happens to them, may have been perceived as attempts to side-line them into expecting reduced efforts to ‘save them’ if they are seriously ill.
The ethical approach to communicating with patients
- In all our dealings with our patients, we need to stress that everyone matters equally.
- We should show compassion and try to understand what the impact of being labelled as ‘vulnerable’ or ‘very high risk’ means to the individual. It will mean different things to different people. We should be ready to repeat and interpret information in lay terms and listen to our patients’ requests remembering that people often only hear and retain a small proportion of what is said, and the topic of conversation can be frightening. It may be worth writing down the main points of a conversation for the patient to read again and discuss with their family or sending them relevant online information.
- We should be honest, both about what we currently know (for example, that some medical conditions seem to increase the severity of COVID-19 infection), and what we don’t know (that the prognosis and treatment of COVID 19 is still evolving). There is a need to be flexible when new information emerges. When information from different specialist societies is conflicting, we should attempt to clarify it, acknowledging the challenges.
- We should actively try to tell our patients that we are ‘open for business’, even if our work is being conducted differently due to the need for social distancing and we should support our vulnerable patients to access our services accommodating for any restrictions due to their vulnerabilities. We could use our practice websites and answerphone messages to convey useful information about local arrangements for COVID-19 and to explain how to access care both routinely and in an emergency.
- Fairness means that doctors should not agree to add a patient on the shielding list where there is no evidence that they can benefit from it and only do so if they meet the published criteria, thus leaving more resource for others. However, because the evidence is new, emerging and uncertain, we should be involving individuals in these decisions taking into account their perception of risk.
- Autonomy means that individuals have the right to accept or reject advice. To make an autonomous decision, an individual must have the capacity to do so, and do so freely, on the basis of appropriate information. Ensuring that patients are appropriately informed may be challenging, given the uncertainties in the available evidence, and careful communication will be needed including a dialogue and shared decision-making. Informed individuals may autonomously decide to reject advice, even if this might have a detrimental effect on their own health or wellbeing, provided that they still honour their obligations to others, for example by ensuring they do not pose a risk to others.
- Talking about the options of management if the patient caught COVID-19, can help people to think about what they and their family would want to do. However, we need to recognise that not everyone is ready to talk or think about this possibility. A sympathetic and sensitive approach may be the best approach, ensuring the patient can raise questions or revisit the issue in the future. Roger Neighbour’s adage that the patient may not remember what you said, but will remember how it made them feel, is a very useful guide.
Non-COVID-19 management decisions
Elective procedures concern issues which improve quality rather than quantity of life. In view of the COVID-19 pandemic, there are greater waiting times for elective procedures. (https://www.bma.org.uk/media/3932/bma-getting-nhs-back-on-track-covid-report-march-2021.pdf)
Whilst the reduction in elective procedures may result in reduced quality of life for some patients due to symptoms such as pain and reduced function, it should be balanced with concerns about safety at a time of a pandemic in view of a) risk of cross-infection with coronavirus b) risk from potentially reduced access to intensive care if there are post-operative complications.
It is important that patients have access to resources on self-care and appropriate symptom management in the community as much as possible.
There needs to be a system for appropriate escalation of care where delayed access to elective procedures may lead to complications in the intervening time (e.g. strangulation of a hernia) and there should be a system of prioritisation in addressing the backlog, taking into account the level of clinical need and waiting times.
Medical and surgical emergencies should continue to be treated. Treatment should be expedited to avoid delays and access to rehab should be prioritised to minimise length of hospital stay as much as possible.
Diagnostic procedures and admissions for elective procedures should be risk-assessed and deferred or delayed, if appropriate.
Access to outpatient services has been reduced in some areas for to safety reasons and due to redeployment of staff and resources, though, similarly to general practice, some are being remotely. With anticipated reduced access to specialist follow-up and proactive management, long-term conditions may deteriorate whilst the workload and clinical risk within general practice can increase. With higher chronic disease prevalence and poorer anticipated outcomes, people from deprived areas are likely to be more disadvantaged by disruption to elective services.
Good communication with secondary care colleagues and use of remote consultation methods can be helpful in ensuring we maintain and optimise the health of individuals with long-term conditions over the course of the pandemic. Continuous risk assessment and flexibility are important as the risk-benefit analysis of everything we do changes and evolves.
As the health service adjusts to the ongoing demands presented by COVID-19, indirect effects also need consideration. Preventative medicine is a significant and important part of the role of primary care. When considering the delivery of preventative measures, appropriate risk-benefit analysis should occur. Certain aspects of preventative medicine may be deliverable via remote consulting, but even this may be scaled-back due to staff shortages.
Where vaccinations have been missed, prioritisation should be given to appropriate catch-up programmes as soon as is possible.
In response to front-line demand, there was a period of pausing of some screening programmes at a local or national level.
Even where screening is running normally, individuals may not be able to attend appointments due to self-isolation or care-giving responsibilities. Local staff availability may also be a factor – practices will understandably need to prioritise urgent activity and will need to work closely with public health services to execute catch-up provision at a later stage where possible.
Irrespective of whether screening is paused, it is important to ensure that patients are encouraged to report symptoms that could be suggestive of cancer. There is the risk that patients confound screening and investigation of early symptoms and may therefore delay presentation unnecessarily.
Personal versus professional
This is incredibly hard and represents a genuine dilemma. As a healthcare professional you have obligations to patients and your employer, but also have obligations to your family. What can you do if those obligations clash? There is no straightforward answer, and much may depend on the exact nature of your concern. Are your concerns about leaving your family whilst you are working, or are they about exposing your family to risk of infection?
How you resolve this will be very personal and will depend on your unique situation. Are you a single parent? Are you struggling with childcare? Do you live with people who have care needs or who are particularly vulnerable? Are you at increased health risk from COVID-19 infection? Are there ways that you can amend your working hours or duties according to your circumstances and needs?
The GMC requires doctors to ‘make the care of the patient your first concern’ (Good Medical Practice). At first glance, this would seem to negate all personal and family-related responsibilities. Sokol argues in his BMJ critique of this edict that ‘in extreme circumstances – such as epidemics, where treating patients involves a high risk of infection and modest benefit to patients – doctors’ obligations to their children, parents, siblings and loved ones may take priority over the care of patients.’ His suggested amendment to the original edict is ‘Make the care of your patient your first concern, bearing in mind your other patients and their particular needs, as well as any protective obligations to the broader community and obligations you may have towards others for whom you are responsible.’ (BMJ 2011;342: d646)
Overall, a 'greater good' approach might suggest that you should do whatever you can to mitigate the possible harms to your family and continue to work. But it is not that simple if you are unable to mitigate those risks and harms (see qualitative study on Healthcare workers' attitudes to working during pandemic).
According to the principle of reciprocity, if people are asked to take increased risks, or face increased burdens, during a pandemic, they should be supported in doing so. Employers and organisations need to minimise these risks and burdens as far as possible.
In summary, you may have a clash of obligations that cannot be easily and simply reconciled. You need to think about the risks and harms of working versus not working, reflect on which are more serious and consider with your practice/employer how either can be mitigated. Ultimately, if you can find ways to mitigate the risks for your family, then you do have a professional responsibility to do that and continue to work. If you haven’t already done so, you may wish to discuss your particular situation with appropriate colleagues and your employer.
We often feel guilty if we feel we are letting others down, but, feeling guilty does not always mean you have done/are doing something wrong.
If you are self-isolating because you may pose an infection risk to others, you are doing the right thing by staying away. You must observe the current social distancing and self-isolation measures in order to protect your colleagues and patients. If you are feeling well enough, there may also be remote work that you can be engaging with to help your practice or health care organisation.
Where testing for COVID-19 is offered, this should be taken up, and the results appropriately acted upon. It should of course be noted that you may be unwell for reasons other than COVID-19. A negative test does not negate you from legitimately being unable to work because of symptoms you are experiencing from a different illness.
You do have an obligation to care for your patients - which applies to any patient to whom you have formal 'duty of care'. For primary health care professionals, that is almost always the registered patient.
However, that duty is limited by the risk that you might be exposed to in discharging it. For example, it would not be an obligation to enter a burning building to care for a patient. The GMC recognises this limitation. You are not required to sacrifice your own health and/or wellbeing. At the same time, there are some situations when one may be morally required to accept some risks in order to care for others. It is important to keep in mind that any risk you choose to expose yourself to, should be proportionate to the good you can bring about.
All clinicians must consider their obligations to patients as well as to themselves, their families, and their future ability to contribute. The risks of caring for COVID-19 patients can be mitigated to some degree by the provision of appropriate PPE (gloves, masks etc.) where there is face to face interaction, or the use of remote consultation methods as a first choice (or where PPE is not available).
You will have to use your own discretion about what risks are acceptable for you to take – and this may change on a daily basis, depending on the patients you are seeing, the availability of PPE, as well as your own personal health risk factors.
This is an absolutely healthy and normal response at times of threat. Anxiety tells us that there is a threat (COVID-19) which needs to be responded to (social distancing, isolation, handwashing, PPE).
It is experienced as physical symptoms (restlessness, tension, palpitations, butterflies) and mental ones (worry, rumination, preoccupation and intrusive thoughts and imagery). There are also anxious behaviours such as excessive checking of news items and social media feeds, avoidance of everyday mundane tasks and repetitive reassurance seeking from colleagues and loved ones.
Symptoms tend to subside for most of us as the situation evolves, as we gain more control over our environment, learn more about the threat and its consequences and use task-orientated activities to distract our bodies and our minds.
If symptoms do not subside or if they begin to interfere with daily living or sleep then this might be the time to take action, even to pause what you are doing, including work, and seek help. Continuing regardless may put patients, and yourself at risk through, for example, being unable to concentrate, easily distracted and overly cautious.
If you are feeling anxious, overwhelmed and uncertain: plant both feet on the ground, take a few deep breaths and think about what you do know and what you can do today.
It may be useful to talk to colleagues, and it is important to cultivate, as much as you can, a supportive working environment, where people who are struggling, feel safe to be open about the difficulties they are facing. The Intensive Care Society have issued some helpful guidance on sustaining staff wellbeing: Intensive Care Society: Wellbeing Resource Library. Also, the NHS Practitioners Health website has advice on wellbeing and the Academy of Royal Medical Colleges has relevant resources.
As a primary health care professional, you will be called upon to make decisions about who is referred to hospital and about how to prioritise care amongst your usual patient populations. There will be other less dramatic, but equally important decisions such as who should be given rescue medicines or medicines ‘just in case’, who to see on a home visit, who to allow to come for a face to face appointment. We are used to treating the patient in front of us and moving to a virtual and triage mindset can be difficult and uncomfortable.
The clinical decisions you may have to make during a pandemic are decisions that few have ever had to make outside wartime or emergency situations. Clinicians will not be able to ‘do everything they can for their patients’, rather ‘do the best they can, given the current situation’.
Moral distress or injury is a negative emotional response to being unable to act in the way you feel you should, or simply unable to determine the right course of action. It is important to remember that these kinds of decisions will often be moral dilemmas, where you have an obligation to do two or more mutually incompatible courses of action and are forced to choose between them. In making a choice – even if that choice is justified and correct - you unavoidably fail to meet the other obligation. See also:
- BMJ article on Managing mental health challenges faced by healthcare workers during COVID-19 pandemic
- Guardian article with title “Coronavirus may force UK doctors to decide who they’ll save”
It is important to remember that feeling that you have done something wrong is not always a sign that you have done something wrong. It may simply be a sign that you have been in a moral dilemma, in which there are no good alternatives. The left-over feeling, like you have still done something wrong, is termed 'moral residue', and it is likely to be unavoidable in a situation like this pandemic.
The importance of appropriate debriefing cannot be overemphasised. Although incredibly difficult to maintain, the continued cultivation of mutually supportive working environment should be prioritised.
Anticipatory Care Planning (ACP) is about having conversations with patients and their family/carers before they become ill, and less capable of making treatment or care decisions. This is not new. It is about respecting patient autonomy and choice as expressed before a situation arises. It is considered that many patients who are vulnerable to the serious complications of COVID-19 should have such conversations with their GPs, or any trained member of the Primary Care team. Ideally it should be a clinician known to the patient, but this may not be possible. Good clinical communication skills are important.
Flexibility will be required when choosing the method and place for ACP conversations given the social and workload constraints of the COVID-19 pandemic. Such conversations take time to do well. Primary care teams should exercise their judgement as to how and where such time is utilised, bearing in mind other clinical commitments and the availability of remote (telephone or video) ways of consulting.
The principle underlying these conversations is to establish and respect the autonomous preferences of patients, who are often vulnerable, on the types of care they would like to receive in the event of getting infected with COVID-19, or any other serious or life-threatening illness. The place where they would ideally like to receive that care, is also important to discuss. A personalised, shared decision between patient and clinician is the goal.
The high-level communication skills and sensitivity needed for these conversations may be compromised by factors such as deafness, lack of understanding or language barrier. Efforts to address these factors should be made and such challenges should not alter the ethical mandate to have such conversations.
In principle, COVID-19 is like any other potentially serious illness. However, the effectiveness of different interventions can be different depending on the diagnosis. In general, patients can, as part of an ACP, determine what type of treatments or interventions they would accept and which they wouldn’t.
The detail of the ACP conversation should be tailored to the scope of the patient’s wishes. Is, for example, admission, intravenous treatment, CPR, or ventilation acceptable to the patient?
It is not possible for an ACP to cover all the possible interventions that might be considered after admission for COVID-19 but the clinician conducting the conversation will get a sense of the overall preferences of the patient and should record these accordingly.
Relevant information to assist such conversations can be found at https://www.criticalcarenice.org.uk/ which also includes patient information on the different treatments and outcomes in hospital and critical care.
During the COVID-19 pandemic the processes in relation to death registration and management across the UK have been changing to ensure the deceased are treated with the utmost respect, to help minimise delays and distress for bereaved families and to protect public health. In these extraordinary times, there is a need for various groups of workers to work differently and together as one system.
This is why, we have worked with our ethics committee, our EoL clinical leads and with the BMA, to produce guidance for the verification of expected death with the remote assistance of other workers so that the verification process can be completed by a clinician safely, ensuring that bereaved families do not experience needless delays, reducing the risk of unnecessary exposure to the virus and allowing clinicians to continue on the front line. You can find this guidance here: https://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2020/covid19/RCGP-guidance/BMA-RCGP-Guidelines-For-Remote210420.ashx?la=en
Other questions on ethical issues
Dr Margaret McCartney advises on the importance of recognising the lack of robust evidence at times such as these, thinking critically and supporting the generation of new evidence through research.
Dr Roger Neighbour advises on the importance of choosing the right medium, maintaining continuity as much as possible, avoiding platitudes and on the importance of listening.
You can find advice on having such conversations with patients here. Further resources are available in the 'End of life care' section of the COVID-19 resource hub. There is also a helpful video presented by Professor Alf Collins, Professor Neil Maskrey, Dr Liz Moulton, Professor Richard Lehman, Dr Libby Maskrey, Dr Sam Finnikin and Dr Nick Price below.