Questions of fairness: how should the NHS prioritise people waiting for care?

Alongside the devastating impact of the Covid-19 virus itself, there are now around 4.7 million people in England waiting for operations, and almost 388,000 who have been waiting over a year. There is also an unknown but potentially very large number of people who have not yet come forward and are therefore not yet in the system.

When waiting times are relatively short, the question of how to prioritise patients is relatively uncomplicated. However, given the potential for very long waits and unmet demand, this question becomes very salient. This is not just an issue of cost or efficiency. An accompanying blog from Rebecca Rosen discusses some of the practical and clinical challenges, but the backlog also raises questions about fairness, value and equity.

Balancing all of these factors inevitably involves difficult decisions and trade-offs, and it is important that ethics are at the forefront of these policy decisions. Indeed, the newly announced UK Pandemic Ethics Accelerator includes prioritisation and health inequalities within its initial areas of focus.

Transparent discussions and public engagement will be essential to grasping the nettle on some of these difficult issues. Without this, it is likely there will be clashes between patients, clinicians, managers and politicians about competing ideas on what constitutes a priority and how this should be decided.

Sir Simon Stevens recently highlighted the need to innovate and redesign care pathways in light of the pandemic, and others have discussed this as an opportunity to “do things differently” by concentrating more on supporting patients who are waiting. This applies not just in the pandemic response, but in the way the NHS delivers care in future. Here we highlight three key questions that we think should be central to this discussion.

What does fair prioritisation look like?

The plan for prioritising the backlog must be clinically appropriate and realistic given the limited resources available, but the NHS is also committed to using its resources fairly. There are two aspects to fairness to consider in this context:

• whether the process for making decisions is fair
• whether the results of those decisions are fair.

A fair process must be seen as legitimate and accountable. Daniels has discussed the importance of this in the context of health technology assessments. Before the pandemic, time waited was a significant factor used to prioritise patients, regardless of the severity of their condition.

At the moment, people are being prioritised depending on clinical urgency, but within this there are grey areas. Solely focusing on waiting time targets does not necessarily account for this complexity. Given the numbers of people waiting, there are other factors to consider such as:

• How far does a person’s condition affect their ability to work or fulfil an essential role such as an informal carer?
• How far is a person’s condition impacting their mental health or wellbeing?
• Are there alternative options available to support someone (for example by using technology or non-medical interventions)?

These are not easy questions, but ensuring there is a transparent process for considering the different options is essential. NICE does this extensively when making decisions about the cost effectiveness of new treatments or technologies.

How can we ensure that prioritisation decisions do not exacerbate existing health inequalities?

Having a fair process is very important, but it is also essential to ensure that any decisions about prioritisation do not exacerbate existing health inequalities.

At the recent Nuffield Trust Summit, Dr Hannah Barham-Brown echoed others when she referred to Covid-19 as “the great revealer” – exposing the vast inequalities and weaknesses in our society and health care systems. We know that patients from deprived communities already have poorer access to health care, and prior to the pandemic there was evidence of inequality between socioeconomic groups on waiting lists. NHS guidance for managing the waiting list notes that tackling inequalities must be a priority during the Covid recovery.

The other blog discusses some of the practical ways to manage the process, but we need to consider the wider implications of these measures too.

As highlighted after the first wave of Covid, plans that rely on or encourage individuals to act may lead to worsening inequalities, as those with greater knowledge, resources or self-advocacy skills are more likely to benefit. Similarly, we need to account for those who may not have sought care in the earlier phases of the pandemic. Our research with the British Heart Foundation indicated that people avoided seeking treatment because they did not consider their situation important enough.

This is similarly the case with the emphasis on self-management, or increased use of technology. Providing patients with more control over their own health care is a key policy goal and, while routine care has been restricted, people have been encouraged to self-manage. But the need to support people who are waiting without over-burdening the NHS may encourage increasing reliance on self-management tools and digital technologies, while depending on patients to navigate the system. We also need to recognise the implications of approaches such as increased use of remote consultations for access, particularly the risks of digital exclusion.

An emphasis on supported self-management will be crucial for ensuring that these tools work for everyone. Self-management is an integral part of, rather than an alternative to, ongoing care.

What is owed to those who wait?

Agreeing on what appear to be fair decision-making criteria is not enough – we must also consider the consequences of any approach that is used.

Treating people with respect and compassion is essential. In some cases, people may be declined treatment, or be expected to wait even longer as those with greater need are seen more quickly. Clinicians must be kind and clear in their conversations with patients. It is important that if procedures are declined, people are able to access alternative and personalised support and given clear information throughout.   

Beyond the pandemic

These are not straightforward questions to answer, but discussions about ethics, including fairness and equity, must be at the heart of decision-making. These questions are not just relevant to the current waiting list but also in addressing the longer-term impact of Covid-19 on the NHS.

Considering fundamental ethical questions is necessary to strengthen patient-centred care, and to ensure that we do not go backwards on health inequalities. This is a prime opportunity to put patients at the centre and understand what matters to people in the coming months and years.

Rachel Hutchings is a Researcher at the Nuffield Trust, and Dr Polly Mitchell is a Post-Doctoral Research Fellow in Bioethics and Public Policy at King’s College London.

*Please don’t forget to read the accompanying blog by Rebecca Rosen on the practical challenges of managing the waiting list.