Independent report

UK NSC ethical considerations in the restoration of adult screening pathways

Published 8 April 2021

Executive summary

There are strong health and ethical justifications for restoring adult screening pathways as soon as possible. However, current constraints in the system create practical and ethical dilemmas about how this task is best approached. This paper by the UK National Screening Committee (UK NSC) sets out ethical considerations for screening advisory teams and others to reflect on when approaching those dilemmas.

There are harms and benefits associated with different strategies and these will vary across the programmes and regions. For example, increasing screening invitation rates could reduce the invitation backlog more quickly and incentivise diagnosis and treatment services to increase capacity. However, if follow-up services cannot keep up, this could result in people with a positive screening result experiencing long, anxious waits for diagnosis and treatment.

Being open and honest with people about potential delays in the pathway would help them to make informed choices about screening during the restoration period.

Efforts should be made to understand and mitigate any effects of various restoration options on health inequalities.

It would be helpful to better understand the current views and concerns of the public to inform any decisions regarding strategies to restore screening pathways.

In the current situation, there are unlikely to be strategies that do not involve some level of compromise, but careful balancing of the practical and ethical considerations can help teams to reach robust and thoughtful decisions.

Introduction

Due to the COVID-19 pandemic, there are backlogs in issuing invitations for adult screening across the UK, as well as delays in the delivery of diagnostic tests and treatments for those who receive a positive screening result indicating a need for further intervention.

The effects of the pandemic have been felt particularly in screening programmes for breast cancer, bowel cancer and abdominal aortic aneurysm.

There are strong health and ethical justifications for restoring screening pathways as soon as possible in order to maximise the health benefits of screening and minimise harm to those waiting to be screened. Health services across the UK have been working hard to achieve this and therefore to meet the NHS constitution requirements.

However, there are constraints in the delivery system that affect how quickly backlogs can be reduced. For example, in bowel cancer screening, while the issuing of tests was affected, once a person has the FIT test kit they can do it at home as normal. But subsequent investigation after a positive FIT test result has been affected by the impact of the pandemic on the capacity of screening colonoscopy services.

In breast cancer screening, because mammography requires close contact with a health professional the screening test itself (screening mammogram) has been a rate limiting factor.

The NHS has been resolute in ensuring that those at highest risk are screened, tested and treated first, and has worked with Public Health England (PHE) and clinical advisers to ensure this is robust. For the most part, services for those at highest risk were maintained even at the height of the pandemic and, where they were not, they were first to restart. However, these groups are, fortunately, relatively small.

The issues arise when planning to restore screening for those millions of people who are at the usual population risk. Pre-existing workforce capacity issues have been compounded by illness in the current workforce and the requirements of infection control.

Constraints such as these create practical and ethical dilemmas about how the task of restoring screening pathways is best approached. For example, opinions differ on whether it is better to clear or substantially reduce the invitation backlog, potentially resulting in large numbers of people with a positive screening result waiting for diagnosis and treatment services, or whether it is better to manage the invitation process so that people are invited to participate in screening at a rate that is manageable and means fewer patients are awaiting follow-up services, but the invitation backlog is reduced more slowly.

These dilemmas can be felt as ethical burdens by healthcare professionals and others working in screening.

At the request of PHE’s screening division, the UK National Screening Committee (UK NSC) facilitated a discussion to explore the ethical issues raised by restoring adult screening pathways in the current context of the COVID-19 pandemic.

A meeting took place on 20 January 2021 of UK NSC members (including technical experts and patient and public voices), patient charities and advisors, from the 4 countries of the UK, with observers from NHS England and Improvement. The issues were also discussed by the Government’s Moral and Ethical Advisory Group on 17 February 2021.

This paper summaries those discussions and is intended to provide a framework for PHE and UK NSC members when their advice is sought. It has generated interest amongst commissioners and providers. The paper is the result of considerable discussion and debate and may be used by anyone in their deliberations if useful.

Ethical framework for screening

The ethical principles of health screening are encompassed within the UK NSC’s criteria for assessing the viability, effectiveness and appropriateness of a screening programme. To further clarify and elucidate the overarching goals of screening, the UK NSC is developing an ethical framework for screening, which is comprised of 4 broad ethical principles (this framework is currently in the development and piloting stage).

Deciding how these principles apply in any given situation is unlikely to be straightforward and often there will be a need for balancing between them. Circumstances also can change the balance, such as those created by the current pandemic. The restoration of screening pathways is discussed below in relation to the 4 principles.

Principle 1. Improve public health and wellbeing

The potential benefits of a screening programme for screened individuals should substantially outweigh the potential harms. Potential benefits include earlier diagnosis and prevention of death or avoidable illness, and improvements in health, quality of life, and reproductive autonomy. Potential harms include uncertainty, delayed, unnecessary or harmful follow up tests or treatment, false reassurance, and increased anxiety. Efforts should be made to reduce any risk of harms.

In order to gain the most benefit from adult screening programmes, as many eligible people as possible should enter the programme as informed choice allows, and all the steps of the programme carefully followed. An inability to invite, test, diagnose or treat people will all result in a reduction in population health. Therefore, the most important priority is to support restoration of the programmes as soon as possible.

Within screened populations, people with the greatest health need are already being prioritised. However, there are harms and benefits associated with different strategies for reducing the remaining backlogs, and these will vary across the different screening programmes and regions.

Temporarily increasing or maintaining usual screening invitation rates would be one approach to clearing or reducing invitation backlogs. Reducing invitation backlogs of potentially hundreds of thousands of people as quickly as possible might be helpful in maintaining public confidence in and uptake of NHS screening, which itself has important public health implications.

Increasing invitation rates could help identify need in the health system, thereby incentivising diagnosis and treatment services to increase capacity. This also carries the risk of overwhelming them. If diagnostic and treatment services cannot keep up with invitation rates, people who receive a positive screening result will experience long delays for these services.

Despite this, for some people and for some conditions, having a positive screening result could be beneficial. For example, it could inform discussions between a GP and a patient who is worried about their health, or it could alert a person to seek urgent medical care if worrying symptoms develop.

It could also allow individuals with the means to seek follow-up care in the private healthcare sector if they wished, although this may not be in line with NHS quality-assurance standards and could raise issues of inequality of access to health care (see principle 3 below).

Delays in diagnostic and treatment services have the potential to cause additional anxiety and distress to people with a positive screening result. Taking part in screening is already associated with anxiety and we know that during the pandemic the number of people reporting high levels of anxiety more generally has sharply increased.

Distress caused by delays in the pathway is likely to vary depending on the stage of the pathway in which the delay occurs and the condition being screened for. People may experience anxiety if there is a delay in receiving a screening invitation or test result, but the anxiety generated by waiting for investigations after a positive cancer screening test result is likely to be much greater.

The UK NSC criteria for assessing screening programmes provide further justification for minimising delays between screening and diagnostic and treatment services. The criteria state that adequate staffing and facilities for testing, diagnosis, treatment and programme management should be available prior to the commencement of the screening programme.

The acceptability of screening takes into account the need for the entire testing and treatment pathway to operate within certain standards, and this applies both during and outside of a pandemic or other national crisis.

Principle 2. Treat people with respect

People should be treated with dignity, honesty and respect. People’s rights, wishes and feelings as an individual should be taken seriously. This includes enabling people to make autonomous, informed choices about screening that align with their personal values. Their choices must be respected and supported. Screening decisions about people who are not able to make decisions for themselves should be made in their best interests.

If there are likely to be delays in the screening pathway, being open and honest about these delays when people are contacted about screening would help them to make informed choices about, for example, whether to accept an invitation to have screening or postpone having a screening test until services have been fully restored.

Being clear about the length of delays in their area and programme, and how likely they are to change, could help people form realistic expectations for when they might receive their results and any diagnostic testing and follow-up treatment they might need.

Avoiding further uncertainty in what has been a very uncertain and turbulent year for many people would be an opportunity to act with kindness and respect. These communications may create opportunities to highlight the circumstances in which it would be advisable to seek medical advice for worrying symptoms.

Screening uptake rates have been affected by the pandemic for a variety of reasons. Any effects on the uptake of screening programmes of informing people about delays would need to be carefully considered and monitored, and modifications to the approach made if required.

Inviting people to have screening and providing screening or diagnostic test results, even when there are delays in follow-up services, would respect a person’s right to be told information that is relevant to their health and medical care. It could provide them with information that they may wish to act on while waiting for NHS follow-up of diagnostic and treatment services.

Conversely, inviting people to have screening and not being able to provide screening or diagnostic test results in a timely manner would mean a person’s right to be provided with high quality healthcare would not be respected.

It would be helpful to better understand the current views, needs and concerns of the public to inform any decisions regarding strategies for restoring screening pathways.

Principle 3. Promote equality and inclusion

Screening should aim to reduce health inequalities and should not aim to increase them. Access to and delivery of screening pathways should be equitable. Any potential wider consequences of screening for society in the initiation and implementation of screening, both in the short and long term, should be considered.

In the resetting of health systems, it will be important to pay attention to the interaction between COVID-19 and longstanding health and socioeconomic inequalities. Adjusting screening invitation rates could affect people disproportionately and unfairly.

For example, if invitation rates are increased, some individuals who experience delays after receiving screen-positive results will be more able and likely than others to seek follow-up care through private healthcare providers (although these may not meet published quality-assurance standards).

Efforts should be made to understand how different restoration options will affect vulnerable groups, such as adults who lack capacity and people who are less health literate or lack confidence to seek healthcare for symptoms. If these fall in a way that will create or exacerbate health inequalities, then mitigations should be discussed and put in place.

Principle 4. Use public resources fairly and proportionately

The entire cost of a screening programme should entail the fair and proportionate use of public resources.

Strategies for restoring screening pathways that attempt to maximise benefit, reduce harm and treat people with respect could have cost implications. For example, any changes to the frequency or method with which screened populations are contacted, or offering people the option to postpone their screening test for a few months, is likely to require significant resource and effort.

In addition, if strategies result in a reduction or increase in pressure on the screening pathways, this might have implications for other NHS services, many of which are also experiencing pressure and backlogs. The needs of people who do not yet have symptoms and are due to be invited for screening will need to be considered alongside the needs of symptomatic people who would also benefit from early diagnosis and treatment.

Again, public engagement on these matters would be helpful to understand public attitudes on, for example, levels of solidarity felt within families, communities, regions and countries and how this relates to the issues being faced by screening services. This would help inform and explain decisions about the restoration of screening and other NHS services as we recover from the pandemic.

Conclusions

National PHE and UK NSC advisory teams will need to consider the range of factors within this paper when advising the NHS on strategies for restoring screening pathways. These will vary across screening programmes and regions. This paper sets out ethical considerations for teams to reflect on when weighing those different factors, many of which will inform practical actions.

In the current situation, there are unlikely to be solutions that do not involve some level of compromise across the ethical principles, but a process of thinking about each principle and careful balancing can help teams to reach thoughtful and robust decisions.

In summary, attempts should be made to strike a balance between:

• clearing invitation backlogs as quickly as possible
• delivering screening tests and results to as many people as possible
• incentivising diagnosis and treatment services to increase capacity without overwhelming them
• minimising the number of people with a screen positive result experiencing delays in diagnosis and treatment services
• being open and honest with people about potential delays in the pathway
• understanding and mitigating any effects of various restoration options on health inequalities

Strategies and decisions should be reviewed regularly to ensure any developments are taken into consideration.