Supporting employees with terminal illness: a guide to workplace policies and practice

This guide is designed to provide insights and information that you can use to develop policy and recommendations that are aligned to your particular organisation and employees.

It sets out the most important things you should think about, including:

• What people working with a terminal illness tell us about their experience and needs at work;
• What managers need to know, and how to support them in their role;
• How to build a positive and compassionate working culture around terminal illness;
• How to make the case for a dedicated policy to directors or trustees.

The guide has been developed in collaboration with HR leads and occupational health professionals from across different sectors and workplaces, including local authorities, universities, hospitals, charities, retail chains, broadcasting companies and others. It also draws on contributions of those with a terminal illness, who have shared their experiences – positive and negative – of work after a diagnosis.

It is an introduction to the topic, rather than a comprehensive set of instructions given the current lack of strong evidence on ‘what works’ to most effectively support employees with a terminal illness.

Developing and adopting written guidance on how cases of terminal illness are managed within your organisation supports trust, fairness, consistency and inclusion.

In this guide, we cover six areas:

1. Attendance flexibility
2. Adjustments to work arrangements
3. Managing absence
4. Sources of support
5. Financial wellbeing
6. Stopping and leaving work

The way in which you put a policy into practice influences its effectiveness.

As there is no quality published research on factors that make terminal illness policies effective, we extrapolate from broader research on successful workplace health and wellbeing practices to describe three principles for effective action:

1. Compassion
2. Communication
3. Consistency

This guide is for people looking for advice on how to enhance their organisation’s capability in supporting employees with a terminal diagnosis.

You may be:

• Responsible for HR policies and procedures in your workplace, whether or not you are an HR professional;
• Responding to the sudden diagnosis of a colleague, or to the experience of family, friends or peers who are dealing with this;
• Tasked with writing a policy or guidance on this topic, or with making recommendations to directors or trustees;
• Working in an organisation that has signed the TUC’s Dying to Work Charter, or the Working with Cancer Pledge, and exploring how to put this commitment into practice.

When we talk about terminal illness, we mean an illness or condition which cannot be cured, and which is likely to lead to someone’s death within months or sometimes years.

We’d like you to take the guide and test it out, check it against your own experience and that of your employees, and let us know what you think. You can send us your feedback by filling out our form.

Smithson, J., Abreu Scherer, I., Baverstock Poppy, I., Bevan, S., and Parry, R., 2023. Supporting employees with terminal illness: a guide to workplace policies and practice.
What Works Centre for Wellbeing and Marie Curie.