Supporting employees with a life-limiting or terminal illness

When supporting an employee with a life-limiting or terminal illness there can be a lot of things to consider. How your employee is affected will depend on a range of different factors and will change over time. There is the diagnosis itself, the stage the condition has reached and the likely prognosis, as well as questions such as the treatment options.

They may only have a short time to live or they may have years of active life ahead of them.

It is up to the employee how much they want to share with their HR team but the more they feel able to confide the better the organisation will be able to support them.

People are likely to want to carry on working for as long as possible. This may be for their mental health or financial reasons. Staying in work may be good for both them and the organisation, but the time will come when they need to stop

Hearing that one of your staff has received a terminal diagnosis can be very emotional. You may worry about how to support them emotionally and practically. There are also considerations such as their legal rights and contractual rights.

• If you’re unsure what to say, keep it simple and honest. For example, “I’m really sorry to hear this news. We’re here to help.”
• Take time to listen. Not everyone will want to talk in more detail, but some might. The guide below may help you feel more confident.
• Be clear on what is confidential and what information will be shared
• If they do want their diagnosis to be shared with others, ask how they would like this to be done
• Ask about their support needs and what they would find helpful during this time. Be clear about what support is already available as they may not be aware.
• Ask if they'd like regular catch ups. This can help to ensure you’re aware if the support needs change

The Equality Act 2010 requires employers to make reasonable adjustments for employees with a disability – which includes terminal illnesses. Some conditions are automatically treated as a disability, including:

• Cancer – including skin growths that need removing before they become cancerous
• Multiple Sclerosis
• An HIV infection – even if the person doesn’t have any symptoms.

If someone is disabled by their condition, they are entitled to reasonable adjustments to help them in the workplace.

An employer only has to make reasonable adjustments if they know or could reasonably be expected to know someone is disabled, and that they are disadvantaged because of it.

The first step is a discussion to work out what the employee wants; these conversations could involve HR, their line manager, or occupational health. It is a good idea, following the meeting, to ensure everything agreed is documented.

There is no limit on the kind of changes employers can make, but they could include:

• Changing hours of work, permanently or for a short while, if someone is coming back to work after being off sick
• Changing someone’s work duties – like reducing their workload if they have work-related stress
• Allowing someone with back pain more breaks to allow them to stand and move away from their desk
• Providing a chair with the right support.

Beyond legal requirements, there are other support needs to consider, such as emotional or financial support.

Flexibility

• If employees are receiving treatment they may have appointments during working hours. There also may be side effects that impact them at work, or they may be more comfortable working from home. Employers should offer flexibility wherever possible.

Financial support

• Reducing work or stopping work can bring financial worries. Being clear about sick pay entitlements, pensions, and any relevant policies can help alleviate some of these concerns. Employee Assistance programmes can also offer financial support if you have one.

Open communication

• Whether the employee is in work or taking time away, make sure to stay in touch. Not only does this highlight to the employee that their organisation is compassionate but can also help to highlight any further support needs. Asking for the employee’s communication preferences is also helpful.

Managing their workload

• If an employee’s health fluctuates or deteriorates you may need to consider talking about their workload and whether any adjustments should be made.

Mental health support

• Receiving a terminal diagnosis can impact an employee’s mental health. They may be very emotional or stressed. Signpost to your Employee Assistance Programme if you have one, where they can receive emotional support and potentially counselling. There are also a range of helplines and support organisations available.

Further support can be found in the Diagnosis Signposting section.

Long-term sick leave

If someone is off sick for more than four weeks, this counts as long-term sick. They may still be able to return to work, maybe by working flexibly or part-time, or doing different or less stressful work.

Managers may ask HR for advice on the organisation’s policies and on what options might be available, such as whether it is possible to move someone to a different role in the organisation.

Stopping work

A life-limiting or terminal illness may eventually mean that an employee has to give up work. This is likely to be a tough decision. HR needs to be able to advise on any schemes the organisation offers such as income protection, ill health retirement, or whether the employee can take their pension early.

• Ensure you have a policy in place for employees who are terminally ill
• HR teams should clearly communicate legal rights, practical and emotional support that an employee has access to
• Be flexible – every employee will be different and may require different support at different stages
• Discussing sick pay and pensions can alleviate financial stress
• Stay in touch – have regular check ins to discuss their support needs