CIPD | Terminal illness: Guidance for people professionals (2024)

The UK's NHS defines a terminal illness as “a health condition you’ll most likely die from”, although some people may use a different definition or language such as ‘life-limiting illness’ or ‘incurable illness’.

Marie Curie defines terminal illness as “an illness or condition which cannot be cured and is likely to lead to someone’s death”. Someone with a terminal illness may live for days, weeks, months or years. It often depends on their diagnosis and any treatment they are having. It can be difficult for healthcare professionals to predict exactly how long someone with a terminal illness will be likely to live.

Marie Curie says there is no set list of illnesses which are terminal, and people who are terminally ill may have a single illness or several different conditions. Examples of some illnesses which can be terminal include:

• advanced cancer
• dementia (including Alzheimer’s)
• motor neurone disease (MND)
• lung disease
• neurological diseases, like Parkinson’s
• advanced heart disease.

When managers manage well and build trust-based relationships, they help to create an environment that is open, respectful and kind. This helps people to feel ‘psychologically safe’. More information on psychological safety is available in our evidence review.

Individuals with a terminal diagnosis are more likely to feel able to speak about it without fear of judgement or discrimination, and knowing they will be listened to and receive support and understanding. It also means support for employees whose family member or close friend has received a diagnosis, and creates a safe environment for colleagues to speak up about any concerns, for example if there are any work or safety concerns.

No one should feel pressured to discuss their health situation if they don’t want to. However, they should still be able to access support. The onus should be on the organisation to create a compassionate culture where people can talk and seek support if they want to, and can access information and resources easily.

Employers should communicate an empathetic and sensitive approach around terminal illness, so that everyone knows their employer is supportive.

Some people who are living with a terminal diagnosis may not want to talk about it, or may not want to frame their condition in that way. Others may be more open and feel able to share their situation with colleagues. It’s important to be led by the individual, including in terms of the language they prefer to describe their situation. This means mirroring the tone and language they use to have a conversation. For example, understandably, some employees will not want to use the term ‘terminal’.

Developing awareness and understanding among employees can help to build a compassionate and supportive culture. Information and education should be included as part of any relevant training for line managers, for example, and there should be clear signposting to internal and external sources of support.

Some employees might not want to approach their line manager, so other options should be available. This may be through HR, an employee resource group (ERG) or a welfare officer. Many employers have employee assistance programmes (EAPs) that can be a confidential source of help and advice. Other routes of support can also help if a manager feels unable to support their team on this issue. There should also be support in place for the line manager. Don’t forget that they might have their own difficulties in this area.

To develop an effective framework, people professionals should:

• Consider what existing policies and practices are in place and what else is needed.
• Develop a policy that outlines the support available, written in a compassionate and supportive way.
• Integrate support within people practices, recognising this is a health and wellbeing, inclusion and diversity, and people management issue. The organisation needs to develop a holistic approach, and align relevant provision.
• Draw up a plan on how the policy will be embedded throughout the organisation, for example through awareness-raising, by promoting the policy through channels such as the staff intranet and by training and guiding line managers.
• Ensure that senior management are visible role models in developing a culture that is empathetic and inclusive.
• Equip managers with the knowledge, abilities and confidence to support employees with a terminal illness, including holding sensitive discussions and signposting to expert sources of help where needed.

Not every organisation will decide that a stand-alone policy is appropriate for its culture or people management framework. Some may prefer to incorporate provision within existing policies, such as a wider health and wellbeing policy.

Whatever approach is best for your organisation, having explicit policy provision on terminal illness support should:

• prompt HR to systematically audit existing provision related to the topic and think strategically and practically about how to develop the most effective provision
• show employees that the organisation values the health and wellbeing of its workforce and is ready to support anyone who is diagnosed with a terminal illness
• provide clarity for managers and employees, for example by setting out key responsibilities, access to reasonable adjustments, entitlements such as benefits and health insurance coverage, and sources of support
• enable HR to collaborate with health providers, for example occupational health (OH) services or EAP partners, to develop a policy that is informed by specialist input and ensures an integrated approach to policy and practice
• encourage consistency in how employees are supported, for how absence and time off for appointments is managed
• establish the process for evaluating the impact of the organisation’s provision.

A policy covering terminal illness should be consistent with the organisation’s framework for supporting employees with long-term health conditions and disabilities as well as its wider people management provision. It should cover key areas, such as those shown in the table below.

Table 1: Key policy areas

Attitudes to working can also vary considerably, but don’t assume that someone with a terminal illness necessarily wants to stop working or even change their working pattern initially. Some employees may want to access ill health retirement as soon as possible, but others may need or want to carry on working. This could be for financial reasons but also because people value their job for more intrinsic reasons, such as the purpose and sense of belonging it provides.

It’s important not to make assumptions and to take the lead from the employee. For example, don’t assume that people with a terminal illness won’t want to participate in new work opportunities or join social events. Even if an employee is off sick, they may still want to hear about organisation news. However, other people may find certain work activities difficult and prefer not to participate. Every situation is unique to that individual. The key is to understand what each employee wants in terms of support and compassion, which is why a sensitive conversation is key to understanding their needs and concerns.

In any conversation, HR professionals and/or managers should be proactive and tell the employee what support and policies are available. This means people don’t need to ask for support at the outset. The next step is to ask, “How else can we support you?” This approach will allow the employee to feel more confident to ask for help that suits their circ*mstances and needs. Ongoing dialogue is important as health needs will likely change over time.

Providing effective support for individuals to remain in work will require flexibility and different adjustments at different times as part of a regular review.

Organisations should develop clear guidance on making adjustments and incorporate specific examples of the kind of adjustments that could be helpful, such as workload or task adjustments, flexible working, reducing working hours temporarily or working from home where possible.

Adjustments should be considered in relation to a specific individual and their role. The aim is to understand the barriers the employee is experiencing and put adjustments in place to resolve or mitigate them. It’s very important, therefore, that a manager involves the employee in discussions about adjustments that could help. One employee’s experience of a terminal diagnosis and associated symptoms will be very different from another’s, so there is no uniform set of adjustments that an organisation can put in place.

It’s also important to highlight the ‘softer’ range of adjustments that could make a difference, such as allowing for more frequent breaks, access to a quiet space or additional support such as a mentor or buddy.

Any guidance on adjustments should be promoted across the workforce but particularly targeted at line managers, who will typically have responsibility for having sensitive, supportive and informed conversations with employees about adjustments. The guidance should encourage managers to consider ways they can be flexible about how a job is done, and discuss options. The individual is likely to have the best ideas on what changes can make the biggest difference to how well they can do their job in the context of their health and wellbeing needs.

An ‘adjustments’ or ‘inclusion’ passport could help employees to manage their ongoing health and adjustments needs. This is a practical and confidential tool that captures any adjustments and support needed. Owned by the employee and shared with their manager, it forms the basis for an ongoing sensitive and supportive conversation to help the employee manage their work and health situation. At a time when the employee can feel they have little control over their life, it can give them autonomy and choice to access the support and flexibility they need.

An employee with a terminal illness can experience a range of wellbeing impacts, including on their mental health. On the journey of identifying the most appropriate treatment, the treatment or medication may impact the employee’s mood, behaviours or wellbeing and have several side effects. It is important to make employees aware of the wider wellbeing support available to help them, such as an EAP and counselling services.

The CIPD guide to mental health has useful tips and a conversation checklist that can be followed when opening a compassionate conversation about someone’s health.

Occupational health (OH) has an important role to play in understanding the medical aspects of someone’s condition and how their symptoms impact on their ability to perform their role. If your organisation uses an external provider, make sure that the service level agreement includes dealing with cases of terminal illness.

OH specialist knowledge means they are in the best position to discuss helpful adjustments with the employee and manager and give ongoing advice about someone’s fitness to work. They can also carry out a risk assessment to identify any duties that could be difficult or unsafe to perform. Their specialist advice will be invaluable in helping individuals to alleviate any impact that work can have on their condition. It will also be instrumental in helping managers to understand the impact of the individual’s condition on their ability to work and the type of reasonable adjustments that could help. OH advice is also needed to assess any health and safety implications if an employee wants to carry on working and whether it’s safe for them to perform some duties.

OH services, if available, can also help to support the employee and their family through any ongoing treatment and change in symptoms as their illness progresses and their health declines. This includes the impact of any treatment, such as chemotherapy.

The best approach is to involve OH at the earliest stage possible, in agreement with the employee and in line with confidentiality requirements. This will ensure that the employee and their line manager have access to the best possible advice to help them manage their condition with the demands of their job.

The CIPD’s factsheet on occupational health is a useful resource.

It’s important to ensure that employees with a terminal illness can easily access information to support their situation. This includes all relevant company policies and support, including:

• employees’ rights (for example, those under the UK’s Equality Act)
• absence management and return-to-work processes
• flexible working and work adjustments
• an EAP and/or counselling services
• OH services
• health insurance benefits
• ill health retirement
• occupational pensions advice.

Even if an organisation doesn’t have access to OH services and/or an EAP, every employer can also signpost employees to external sources of specialist support. This should include signposting to relevant welfare and benefits provision.

Employees with a terminal diagnosis will have very individual needs and attitudes about whether they want to continue working, and their decision will be influenced by factors other than financial. Nonetheless, most people will need to consider the financial implications of whether to remain in employment. Having access to reliable information and advice about the benefits that they could be entitled to will be crucial for employees to make decisions about whether or not to carry on working with their terminal illness.

A sensitive and compassionate approach to absence management is needed to:

• create an environment where people feel able to tell their employer
• reduce any additional burden on the employee
• facilitate planning to cover absence where possible
• support people’s emotional wellbeing.

Managers need to understand how to manage leave and sickness absence in an empathetic and supportive way. The absence management system should be easy to navigate, so that everyone understands what’s required of them when someone is off sick.

Make clear what leave is available to people. An employee may be able to take sick leave and qualify for sick pay (such as statutory sick pay (SSP) in the UK) if they are too ill to work, as well as any contractual occupational sick pay provided by the organisation.

Other leave options for organisations to consider include:

• Compassionate leave for people where needed, for example where an employee is struggling to manage the wider wellbeing impacts of their diagnosis and needs some time and space from work. If an employee is caring for someone with a terminal illness, they could also need to take time off to look after their loved one.
• Flexible working/temporary adjustments to working hours, for example reduced hours if undergoing treatment and/or experiencing ongoing symptoms. However, you and the employee should be mindful of any financial implications of reducing hours, as this could have an impact on reward and benefits, such as death-in-service benefits.

Not all employees with a terminal illness need time off sick, although this is likely to change over time. Be prepared to flex your absence management approach to support people on an individual basis.

Some absences related to treatment and/or symptoms can be hard to plan for and people may not know in advance when or for how long they will be off work. Given the progressive nature of someone’s illness, and what they and their family are dealing with on an emotional level, you should respond with as much flexibility as possible.

The use of trigger systems and formal processes around absence can place additional pressures on employees with a terminal illness and are not helpful in this situation. Organisations should avoid having a rigid approach to absence management and treat absences related to an employee’s illness outside any trigger system to ensure employees aren’t unfairly penalised for taking any genuine sickness absence.

Some employees will need to be on long-term sickness for certain periods, while others could need a few days at a time. If someone is off sick due to illness, their manager should have a sensitive conversation about how best to keep in touch during their absence, and how frequently. This will depend on the employee’s situation, their symptoms and individual preference. Some employees may want to keep up to date with news about work while others may prefer minimal contact, especially if they are very unwell. It could be that the employee would like to nominate an alternative contact such as a family member.

Any keeping-in-touch conversations should be approached with empathy and without the employee feeling any pressure to return to work before they are ready. This could include indirect pressure, for example if no cover for tasks or workload is allocated. In the conversations, managers could discuss how they are, whether or not they need any further support or information from the organisation, and share any relevant medical advice or recommendations from their health professionals and/or occupational health.

An effective return-to-work interview can build trust and engagement, and support a smooth and sustainable return to work. This should be planned before the employee returns so that they know what to expect and have the opportunity to think about any issues they would like to raise, such as potential adjustments. Someone returning to work with a terminal illness is likely to be dealing with the emotional as well as the physical effects of their symptoms, and managers should take a holistic approach to supporting their ongoing health and wellbeing needs.

The CIPD guide Managing a return to work after long-term absence sets out some guiding principles to follow when navigating key return-to-work activities.

Much of the day-to-day responsibility for supporting people’s health and wellbeing at work falls on line managers. They are responsible for implementing the policies and workplace adjustments that can help people to balance work responsibilities with challenging personal and health issues. A line manager will typically be the first point of contact if someone needs to discuss their diagnosis and health needs. It’s therefore essential that managers are knowledgeable about the organisation’s framework for supporting people with a terminal illness.

The role of line managers is to offer compassionate support and not solutions. Line managers cannot be experts on the issue, or act as counsellors. Their role is to help employees with the work aspects of the situation and ensure that work is not part of the problem. Organisations should ensure that line managers understand the boundaries of their role, as well as when and how to make helpful adjustments and signpost people to specialist support where needed.

Having someone in their team who is terminally ill can take a toll on a manager. Some employees with a terminal diagnosis could understandably show significant emotional distress, including anger and tearfulness. While this reaction is only to be expected, it could be very challenging for a line manager to deal with. Therefore, it’s important managers know they can also ask for help and support, and HR should provide effective signposting for them.

People professionals should ensure that managers:

• are trained in the organisation’s framework and policies relating to health and wellbeing and terminal illness
• feel confident, comfortable and competent to have empathetic conversations about sensitive and complex issues like terminal illness
• understand how to respond to an employee who shares health information about a terminal illness and what actions to take as well as the specific support and policies available
• develop a basic knowledge of the progressive illness that the employee has been diagnosed with – not so that they are expected to play a medical role or give advice, but so that they can have a broad understanding of the condition’s likely impact and what adjustments may help
• understand how to maintain clear boundaries – they need to be clear on what their role is and isn’t when supporting a colleague with a terminal illness
• have ready access to appropriate support for their own health and wellbeing needs, and know where to turn if they feel unable to effectively support a team member and/or they find the situation triggering
• can access training at the point of need (instead of trying to recall a one-off training event they attended a year ago)
• be knowledgeable about the organisation’s wellbeing services, absence management framework, leave provision and benefits
• are confident to signpost to expert sources of support, such as OH, EAP, external support charities or medical services.

Managers will need easy access to practical advice and tools to help them manage someone with a terminal illness in real time, rather than relying on a one-off training event. It could be helpful to provide guidance for line managers, such as a checklist of different activities to carry out at specific times, as well as helpful prompts on when and how to have sensitive conversations with people.

Some line managers may not feel equipped to support someone from a wellbeing perspective. The employee may also want to have a conversation or seek support from someone in addition or as an alternative to their line manager. Your policy and/or guidance should offer other named contacts, such as HR.

Managing and supporting someone with a terminal illness can be complex and also affect the wider team in terms of work responsibilities as well as have an emotional impact on some team members. There could be potential conflict even if they don’t know about someone’s diagnosis, so managers should be prepared to deal with any wider impact. They could also need support themselves, so make sure you promote the wellbeing services available, as well as a named HR contact who has the expertise to advise on cases involving terminal illness.

An employee with a terminal illness is very likely to experience mental and physical health impacts that could affect their performance. The effects of symptoms and/or treatment could mean people experience unpredictable side effects, including low mood and fatigue. It’s understandable that their performance will be affected at times, so organisations need to take a flexible and supportive approach.

Performance management should in essence be a positive and supportive process, and the manager needs to have an ongoing discussion with the employee to discuss potential adjustments and support that could help. Managing performance can be a challenging area for line managers to navigate, especially if an employee wants to continue working but isn’t able to perform their role effectively. If this happens and the person is underperforming, encourage managers to be flexible and understanding. As a last resort, difficult decisions may need to be made around, for example, redeployment, so ensure this is covered in your policies.

Your framework for supporting people with a terminal diagnosis should also support the needs of employees who are caring for someone with a terminal diagnosis. As well as signposting to helpful advice and guidance for employees in this caring role, you should link to the organisation’s policies and support for carers.

Combining work with caring for a loved one with a terminal illness is likely to be a challenging balancing act that can have a significant impact on someone’s emotional wellbeing. Offering compassion and understanding can make a big difference to how someone copes. They are also likely to need practical support, such as temporary changes to their role as well as flexibility and/or time off to attend some medical appointments with the person they are caring for.

Line managers should be knowledgeable about any carer’s leave (paid or unpaid) your organisation offers and be prepared to discuss this with employees according to individual need. They should also be able to discuss and deal with any requests for compassionate leave if the employee is supporting their loved one at the end of life. Some requests for time off could be unpredictable and the organisation should be as flexible as possible when dealing with requests for time off at short notice.

See our guidance for creating a carer-friendly workplace.

The death of a colleague can be very upsetting for the people they worked with, and be destabilising for the team, even if the employee has left the organisation. Your framework needs to offer compassionate bereavement support for anyone affected and ensure that the line manager has the guidance and support they need to manage the wider team.

The CIPD guide on compassionate bereavement support has more details of the policies and support you can develop. There is separate guidance for line managers.

This guide has been developed by Rachel Suff, Senior Policy Adviser, CIPD. The CIPD is grateful to the organisations, people professionals and experts who gave their time and expertise to provide feedback to help inform this guide. These include the people professionals, occupational health professionals and other stakeholders who generously gave their time to contribute to the workshops hosted by Marie Curie and What Works Wellbeing, supported by the CIPD.

The CIPD is also grateful for the insights provided by:

• Dr Jo Yarker, Affinity Health at Work
• Government People Group, Civil Service
• Marie Curie
• What Works Wellbeing.