Terminal illness: Guidance for people professionals

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’. 

End of life support charity 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.

Under the Equality Act 2010 (the Act), a person is defined as 'disabled' if they have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. 'Long term' specifically covers conditions that are 'likely to affect the employee for the rest of their life'. 

Many employees with a terminal illness are likely to meet the Equality Act definition of disability from an early stage, depending on the nature and impact of their condition. Some conditions such as cancer, HIV and multiple sclerosis are automatically protected from the point of diagnosis.

Some terminally ill employees may not be able to continue in their role, for example those in highly hazardous or emergency roles. If a person is unable to work, or chooses not to, the employer can discuss a mutually agreed departure, bearing in mind that if the employee leaves, they may not be entitled to any death-in-service benefits. Overall, an employer’s duty of care encompasses supporting the employee, considering the points below.

Employer's duty to make reasonable adjustments 

Employers must make reasonable adjustments under the Act with the aim of removing or reducing 'substantial disdvantages' that a disabled employee might face in carrying out their role. Changes to hours and working patterns, reduced workload, reallocating duties, granting time off for treatment and medical appointments, and working from home are all potentially areas to consider when looking to make reasonable adjustments – and there may also be an overlap with the right of the employee to request flexible working, which is covered below. 

To avoid discrimination claims, employees should be allowed to work in their original role or an adjusted one for as long as they wish, subject to capability, medical advice, and health and safety considerations. 

If the employee needs time off, four main types of leave may be available.

Sick leave

Usual sick leave agreements and policies apply to employees with a terminal illness, unless further special arrangements are agreed in a contractual variation. In some cases, adjustments to sick pay policies may amount to 'reasonable adjustments' under the Act, but recent case law has confirmed that it is unlikely to be reasonable for an employer to extend paid sick leave significantly unless it is the employer's action which is preventing the employee from returning to work.

Extended, special or compassionate leave

If the employee has exhausted all sick leave that is available through statutory and contractual schemes, it is open to employers and terminally ill employees to agree for extended time off to be taken as extra paid or unpaid leave. 

Please note, the expression ‘compassionate’ leave has no strict meaning under UK law, but employers may offer compassionate leave to provide time off.

Annual leave

An employee can request holiday/annual leave to cover sickness absence if this is helpful for them. If an employee does not request this, any accrued holiday at the date of death should be paid to the employee’s beneficiaries as payment for the holiday untaken, together with any outstanding salary. 

Flexible working

Someone facing a terminal illness may initially request changes to working hours or location of work. Requests can be made informally to employers, or the flexible working regime can be used. 

Employers are not obliged to accommodate every flexible working request, but requested arrangements from the terminally ill are likely to be short term and employers are more likely to be able to accommodate them. The response time for requests is within two months, but in cases of terminal illness employers should consider responding more promptly. A request for flexible working can only be refused by an employer for one (or more) of eight statutory grounds, including the detrimental effect on the ability to meet customer demand or inability to reorganise work among existing staff. The guide on planning and managing flexible working requests can support people professionals in these decisions.

Refusal of requests for flexible working may trigger disability discrimination or reasonable adjustments claims (see above). 

Statutory sick pay (SSP)

For the purposes of SSP, terminal illnesses are not legally different from other illnesses. As a legal minimum, all employees will be entitled to SSP provided they meet the requirements. 

SSP can only be paid for a maximum of 28 weeks. For sick leave that exceeds the 28-week limit, employers can agree their own contractual terms or seek Employment and Support Allowance for the employee before the SSP period ends by completing an SSP1 form. 

Contractual sick pay

Employers’ occupational or contractual sick pay terms and conditions or schemes will differ. Common provisions include a period of absence on full pay, for example for three or six months. Sometimes pay is phased so the fraction of pay reduces and ends after a set period. Sick pay policies may provide that in exceptional circumstances, for example for the terminally ill, employees can apply for an extension. Such discretionary options may include extending contractual sick pay for a fixed period or the remainder of the life expectancy. The pay may be ongoing or subject to review. If it is not possible for an employer to extend contractual sick pay to cover periods of absence, there may be other options available to the individual, for example through the benefits system.

Special arrangements

If policies do not provide for an extension to standard sick pay, employers can agree to extend occupational sick pay on a discretionary basis for any employee with a terminal illness. Any discretionary decision should be consistent with other similar decisions, and recoreded clearly, both to esnure there are no misunderstandings, should personnel working with the employee change, and to ensure future decisions can be made consistently too.

Experiences of terminal illness are not universal. For example, different cultural attitudes to death and dying, faith considerations, family structures, language preferences and disability identity can all influence the support someone wants at work. It's important to treat everyone as an individual with their own unique preferences and needs in relation to their illness and respect their wishes.

Encouraging peer support is an important part of tackling stigma and fostering an environment where employees feel able to talk about health and ill health, including terminal illness. Employers should work with staff networks, such as any that exist for wellbeing, carers and disability, to help raise awareness and openness around the topic and encourage active supoort for each other.

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 then 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. Creating a safe and inclusive working environment also means considering support for employees whose family member or close friend has received a diagnosis. It's also important that colleagues feel comfortable to speak up about any concerns, for example if there are any work or safety issues.

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 access information and resources easily.

Employers should communicate an empathetic and sensitive approach around terminal illness, so that everyone knows their organisation 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 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 channels 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, as well as occupational health services if available. There should also be support in place for the line manager. Don’t forget that they might have their own difficulties in this area.

Some employees with a terminal illness may find it challenging to navigate some aspects of how their diagnosis and/or symptoms interact with their job and work-related policies. There are a lot of different issues for someone in this situation to deal with that could be especially hard at certain stages of their illness. Some employees may wish to involve a family member in certain workplace discussions and the organisation could facilitate this approach where possible. This could be particularly helpful in discussions involving complex matters where there is a lot of information to absorb and/or a need to make decisions, such as benefits entitlement and financial matters. 

To develop an effective framework, people professionals should:

1. Take stock with empathy: Consider what existing policies and practices are in place and what else is needed. 
2. Develop a clear and compassionate policy that outlines the support available. 
3. Integrate support within people practices. 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.
4. 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. 
5. Ensure that senior management are visible role models in developing a culture that is empathetic and inclusive.
6. Equip managers with the knowledge, capability and confidence to support employees with a terminal illness, including training and support on holding sensitive discussions and signposting to expert sources of help where needed. 

Not every organisation will decide that a standalone 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 framework that is informed by specialist input and ensures an integrated approach to policy and practice 
• encourage consistency in how employees are supported, for example, how absence, leave and time off for appointments are 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: Example policy template

It’s important to respect the privacy of any employee affected by a terminal illness diagnosis. No sensitive information of any kind should be shared without the individual’s prior consent. There will be practical issues to manage, such as cover of their work if they need to take time off, and so it’s a good idea to sensitively ask for permission to inform certain colleagues of their health situation. It’s important that the employee has the say over when and how this information is communicated, however, and it remains their decision. If close work colleagues are aware of the situation and it’s handled sensitively, the employee could also benefit from the support and understanding of their team. 

Attitudes to working can vary considerably, so 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 circumstances and needs. Ongoing dialogue is important as health needs will likely change over time.  

Here are some conversation prompts you could use to help employees feel supported and at ease:

• "What would be most helpful to you right now?"
• "How would you like us to communicate with colleagues?"
• "Do you want us to review adjustments regularly?"
• "What information would you like about benefits and support?"

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. 

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

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 and behaviours and have 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 sensitive 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 effect 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. 

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 and for how long. 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. 

UK government guidance states that people with less than 12 months to live (previously six months) can:

• get faster, easier access to certain benefits
• get higher payments for certain benefits
• avoid a medical assessment.

People can use special rules to claim:

• Universal Credit
• Employment and Support Allowance
• Personal Independence Payment
• Disability Living Allowance
• Attendance Allowance.
• Occupational benefits and health insurance

GRiD, the industry body for the group risk protection sector, says that expert advice should always be taken when setting up or reviewing a group risk insurance scheme to ensure that: 

• optimum cover is provided
• any extra support services offered alongside the policy are used
• all tax efficiencies are maximised. 

Some existing policies could be expanded or tweaked to tailor support specifically for those with a terminal diagnosis. You should also consider investing in additional benefits and insurance cover to provide adequate financial assistance for employees who may lose income if they are unable to work. This applies to income that could be payable both during their employment and afterwards.  

Occupational pension schemes vary and it’s important to review your organisation’s scheme. 

An employee who needs to retire early due to ill health may be eligible for an immediate pension in the case of a terminal diagnosis. The employee may be able to get higher payments if they need to take their pension early because of a health condition. There are also specific tax rules meaning the employee could be eligible to take the whole of their pension pot as a tax-free lump sum if they: 

• are under 75
• are expected to live less than a year and
• the lump sum is no more than the 'lump sum and death benefit' (LSDBA) allowance of £1,073,100.

This is a complex area and individual employees will get the best advice from speaking with an independent financial adviser who can consider all the relevant circumstances and advise accordingly.

PMI, also known as private health insurance, means that all or some of an employee’s medical bills are paid if they are treated privately following the employer developing a policy with a third-party provider. According to CIPD research, a quarter of employers (25%) offer PMI to all employees, while the same proportion restrict it to some workers, based on seniority.

Critical illness cover is a group risk benefit and can be used to supplement sick pay and private medical insurance. The employer takes out a policy with a third-party provider to pay a tax-free lump sum to an employee if they are diagnosed with a serious illness. 

This is a form of group risk insurance, where the employer pays an employee unable to work through sickness or injury a proportion of their normal salary. It can be set up in different ways. For example, some policies include a ‘limited term’, which means they only pay out up to a set period, such as two, three or five years off work, rather than to retirement age. A number of private providers also offer additional support, such as return-to-work guidance, an EAP and fast-track access to health and wellbeing services like physiotherapy and counselling.

Group life assurance, often known as ‘death in service’, provides a benefit if an employee dies in service. This can be a lump sum payable to nominated beneficiaries and/or a taxable pension to the employee’s dependants. Generally, payments can be offset against corporation tax and are not regarded as a benefit in kind. 

It’s important that the employee understands the financial implications of stopping work in terms of their eligibility for certain benefits and insurances. For example, termination of their employment contract could mean they are no longer eligible for some benefits, such as life assurance/death-in-service cover. Because the terms of most life assurance policies require the employee to still be in employment when they die, this situation needs very careful handling. 

Some organisations have signed a voluntary charter as part of the TUC’s Dying to Work campaign. The charter aims to give people with a terminal illness choice about their options in relation to work. Organisations that sign the charter are committing to supporting people in the choices they make. It also means undertaking to protect the death-in-service benefits of a terminally ill employee for their loved ones.

Offering referrals for reputable financial advice and counselling could be a valuable resource for employees and their families to help them deal with the financial challenges caused by a terminal diagnosis. This could cover welfare benefits, any medical costs, estate planning and insurance claims. 

A sensitive and flexible approach 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 attendance 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 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 cover. 

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 terminal 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 conversation 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 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 also affect the wider team in terms of work responsibilities and 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. Do 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 suffer 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 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, or time off to deal with short notice emergencies. There is an interaction here with relevant statutory rights, which should be covered in your organisation's policies around support for carers.

Line managers should be trained so they understand and can explain 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 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. 

There could be a situation where it is known that a family member or other dependant of an employee is close to death and a member of staff requires time off to be with them before they die. Additionally, some religions and cultures have particular pratices that take place at the end of life. While none of the statutory provisions for bereavement leave cover time off in advance of a death, you should consider requests for such time off in the same sympathetic and caring manner as you would for bereavement leave. You may also want to reflect this approach in your bereavement policy.

See our guidance for creating a carer-friendly workplace and our guide on compassionate bereavement support. 

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. 

• A review on working with terminal illness by What Works Wellbeing and Marie Curie, as part of a Dying Well project supported by the CIPD.

• Gov.uk: provides advice on claiming benefits if someone is nearing the end of their life, including advice on how the ‘Special Rules’ can support them, as well as information on ill-health retirement and pensions. 

• Macmillan Cancer Support: a charity providing a wide range of information and support about cancer, including a free helpline, an online community, and advice about work and cancer. 

• Marie Curie: the UK’s leading end-of-life charity. It provides frontline nursing and hospice care, a free support line, and a wealth of information and support on all aspects of dying, death and bereavement, including advice about work and terminal illness.

• Mind: provides advice and support to empower anyone experiencing a mental health problem. Mind Infoline – 0300 123 3393 or email info@mind.org.uk

• Money Helper: offers impartial and free advice, including guidance about ill-health retirement and pensions. 

• National Health Service (NHS): The NHS provides information and advice on coping with a terminal illness and links to other sources of specialist support. 

• Samaritans: has a 24-hour listening service and offers other support via email, letter, online chat and face-to-face, including through their Welsh language service. Call freephone 116 123 or email jo@samaritans.org

• TUC’s Dying to Work campaign: aims to give people with a terminal illness choice about their options in relation to work. Organisations can sign up to the voluntary charter. 

• Working with Cancer: provides a range of support and services for people affected by cancer, including employers; also, see this blog by Ambassador Stephen Bevan reflecting on a terminal illness. 

• Cancer Support UK offer Cancer Coach, a range of free cancer support services to help people move on with life post cancer treatment

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.