Responding to pandemic influenza - The ethical framework for policy and planning

Such decisions can be personal – How should I behave? – or wider, for example, affecting the organisation and delivery of health or social care services. In some cases, particularly with regard to planning, decisions may have to be taken despite considerable uncertainty about relevant facts (for example, about exactly how many people will be affected in a pandemic).

However, delaying decisions until the facts are certain might mean that it would not be possible to respond effectively to a pandemic.

Decisions will need to be made in accordance with the law but, within that context, this ethical framework is designed to help people think about the ethical aspects of their decisions, and about how to put their decisions into practice within their specific context. Some of the implications of each principle are illustrated below but these illustrations are not exhaustive.

The framework is designed for use by planners and strategic policy makers at national, regional and local level, both before and during a pandemic. It is also designed to assist clinicians and others (who will also be guided by their own professional codes) in developing policies on clinical issues for use during a pandemic. Although not designed to address individual clinical decision-making, clinicians and members of the public who want to think about the ethical implications of their own behaviour during a pandemic are welcome to use it for such purposes.

The UK’s plans for responding to an influenza pandemic are set out in Pandemic Flu:A national framework forresponding to an influenza pandemic. The ethical framework has been designed to assist in the response to a pandemic in the UK. However, a pandemic is a global event and the implications that actions in the UK may have on the rest of the world have to be kept in mind. The Government is contributing to international efforts related to pandemic influenza through its support to the World Health Organization and other relevant international bodies.

Equal concern and respect is the fundamental principle that underpins this ethical framework. This means that:

• everyone matters
• everyone matters equally – but this does not mean that everyone is treated the same
• the interests of each person are the concern of all of us, and of society
• the harm that might be suffered by every person matters, and so minimising the harm that a pandemic might cause is a central concern.

Using the framework

The principle of equal concern and respect draws together a number of different ethical principles, each of which is outlined below. The individual principles are numbered for convenience but are not ranked in order of significance – they are all important.

When a particular decision has to be made, using the list of principles systematically as a checklist can help to ensure that the full range of ethical issues is considered. In thinking about the principles, decision-makers will need to use the best information that is available to them at the time (for example, about the likely effects of a particular decision). Whether or not a decision was ethically appropriate has to be judged in relation to the situation that existed at the time it was made, rather than by reference to facts that only became apparent at a later stage.

The individual principles

Sometimes, there will be tension both within and between these principles – in weighing different sorts of harm, and in trying both to minimise harm and to be fair, for example.

There are often no absolute right answers. A judgement may have to be made on the priority to be given to each element of a principle (such as the potential impact of different types of harm) and to the principles themselves in the context of particular circumstances. Sometimes, use of the first seven principles may indicate that more than one possible decision would be ethically justifiable and would accord with the fundamental principle of equal concern and respect. In such a case, the principle of good decision-making should be used to decide which one to take.

1. Respect

This principle means that:

• people should be kept as informed as possible
• people should have the chance to express their views on matters that affect them
• people’s personal choices about their treatment and care should be respected as much as possible
• when people are not able to decide, those who have to decide for them should take decisions based on the best interests of the person as a whole rather than just based on their health needs.

There should be the widest possible involvement of people in planning for a pandemic. During a pandemic, the urgency of the situation may mean that it is not possible to consult widely (or indeed at all). However, treating people with respect means keeping them informed of the situation, what is happening and what is going to happen, as much as possible. Communication will be needed on many different levels, from keeping the public informed as a whole, to a doctor discussing with one person how to treat that person’s health problem.

People’s choices about their treatment and care are very important. This does not mean that they are entitled to have treatment that those caring for them consider would not work or is not suitable for them. It may not be possible to provide all the treatment that people would like and that might benefit them.

2. Minimising the harm that a pandemic could cause

During a pandemic, some harm is likely to be unavoidable. This principle means that there is a need to:

• help other countries to fight a pandemic if it starts abroad, to stop it developing further and reaching this country
• try to minimise the spread of a pandemic if it reaches this country. Everyone has a role to play, for example by covering the face when sneezing, or staying at home when ill
• minimise the risk of complications if someone is ill, for example by the appropriate use of antiviral treatment
• learn from experience both at home and abroad about the best way to fight the pandemic and to treat people who are ill
• minimise the disruption to society caused by a pandemic.

‘Harm’ is a broad concept and this principle is intended to cover the physical, psychological, social and economic harm that a pandemic might cause. Examples of actions relevant to minimising harm include those that save lives, that support the health service in saving lives, and that are designed to ensure that society copes with and recovers from the pandemic.

3. Fairness

The principle of fairness means that:

• everyone matters equally
• people with an equal chance of benefiting from health or social care resources should have an equal chance of receiving them; however, it will not be unfair to ask people who could get the same benefit from an intervention at a later date to wait.

The implications of the principles of minimising harm and fairness arise in many planning and policy decisions. So, in considering a particular decision, a first question might be: How could harm be minimised? Then it is necessary to ask: Would it be fair to do this? Could the same outcome be achieved in a fairer way? This involves thinking about the interests of everyone who may be affected by the decision. There need to be good reasons to treat some people differently from others, which the decision-maker should be prepared to explain. Decision-making also needs to be fair, which is considered as part of the principle of good decision-making below.

4. Working together

This principle means:

• working together to plan for, and respond to, a pandemic
• helping one another
• taking responsibility for our own behaviour, for example by not exposing others to risk
• being prepared to share information (for example on the effects of treatment) that will help others.

Everyone will have a role in responding to the pandemic. This may include helping family and friends who become ill, helping in the local community if possible, and helping the UK to keep going by continuing to work and carry out normal day-to-day activities unless there is a particular reason not to do so (for example, when infectious)

Because a pandemic will affect the whole of society, it is important that the different public agencies (such as health and social care services and the voluntary sector) work together at both local and national level. Similarly, there needs to be appropriate coordination between planning and response activities at national, regional and local level.

Health and social care staff will have particular roles to play in responding to the pandemic. Sometimes, if it is reasonable to do so, this may mean using their skills where they are most needed, even though this may involve them acting outside their normal area of expertise.

5. Reciprocity

The principle of reciprocity is based on the concept of mutual exchange. Therefore:

• if people are asked to take increased risks, or face increased burdens, during a pandemic, they should be supported in doing so, and the risks and burdens should be minimised as far as possible.

Some people, including health and social care staff, may face very heavy burdens in trying to help us through a pandemic; it is important to think about how to minimise those burdens.

6. Keeping things in proportion

This principle means that:

• those responsible for providing information will neither exaggerate or minimise the situation and will give people the most accurate information that they can
• decisions on actions that may affect people’s daily lives, which are taken to protect the public from harm, will be proportionate to the relevant risk and to the benefits that can be gained from the proposed action.

At the start of a pandemic, much will remain unknown about how it is going to affect people and the country as a whole. However, things need to be kept in proportion. The media and other people responsible for communications will have an important role to play in ensuring that people know what the real situation is and what they need to do, without exaggerating or minimising the situation.

7. Flexibility

This principle means that:

• plans will be adapted to take into account new information and changing circumstances
• people will have as much chance as possible to express concerns about or disagreement with decisions that affect them.

8. Good decision-making

Respect for this principle involves the following components:

i. Openness and transparency

This means that those making decisions will:

• consult those concerned as much as possible in the time available
• be open about what decisions need to be made and who is responsible for making them
• be as open as possible about what decisions have been made and why they were made.

ii. Inclusiveness

This means that those making decisions will:

• involve people to the greatest extent possible in aspects of planning that affect them
• take into account all relevant views expressed
• try to ensure that particular groups are not excluded from becoming involved.Some people may find it harder to access communications or services than others, and decision-makers need to think about how to ensure that they can express their views and have a fair opportunity to get their needs for treatment or care met
• take into account any disproportionate impact of the decision on particular groups of people.

iii. Accountability

This means that those responsible for making decisions:

• are answerable for the decisions they do or do not take.

iv. Reasonableness

This means that decisions should be:

• rational
• not arbitrary
• based on appropriate evidence
• the result of an appropriate process, taking into account how quickly a decision
• has to be made and the circumstances in which a decision is made
• practical – what is decided should have a reasonable chance of working.

Appropriate records should be kept of decisions taken and the justification for them. This is important for accountability, but such records can also help people learn from experience in order to respond to further pandemic waves, or to a different pandemic in the future.