Research has suggested that employers are underprepared when it comes to supporting an employee with a terminal illness. Rachel Suff shares some best practice.
Receiving a terminal diagnosis can be the most difficult news someone will ever hear, and yet few employers have developed support for employees with a terminal illness.
CIPD research with Simplyhealth shows that just a third of organisations have specific provisions for workers with a terminal illness, such as a policy, guidance or line manager training.
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We don’t typically talk about serious illness in society, let alone death and dying, and this stigma spills into the workplace. Often, people are afraid to talk about sensitive issues for fear of saying the wrong thing and so they say nothing at all, which can feel very isolating.
Employers can play an important role in breaking down these taboos. By creating a supportive and compassionate environment at work, employees are more likely to feel able to discuss a challenging life event, including a terminal illness, and to ask for help when needed.
The 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”.
Someone with a terminal illness may live for days, weeks, months or years. There is no set list of terminal illnesses 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
- lung disease
- neurological diseases, like Parkinson’s
- advanced heart disease.
Gaps in support
A review on working with terminal illness by What Works Wellbeing and Marie Curie, as part of the Dying Well project supported by the CIPD, found that:
- only a third of organisations offered tailored occupational health support for terminal illness
- under half (43%) of organisations manage terminal illnesses outside of standard sickness reporting processes. This means that an employee, already dealing with the physical symptoms of their condition and the accompanying emotional challenges, could also face the added stress of a rigid policy that penalises them for taking genuine sickness absence.
A lack of experience by line managers and employers may account for the absence of a policy framework in many organisations, as just over a third (35%) of respondents reported that their organisation had supported an employee with a terminal diagnosis.
As advances in treatments allow more people in this situation to live well for longer, there is a growing need to support employees with terminal diagnosis.
Role of employers
A lack of experience by line managers and employers may account for the absence of a policy framework in many organisations.”
Another review for the Dying Well project shows there is very little evidence about the experiences and wellbeing related to work among people who have a terminal illness. However, we do know that people of working age experience significant financial and legal challenges, in addition to the challenges of their diagnosis.
No one should feel pressured to discuss their health situation if they do not want to. However, they should still be able to access support. The onus is on the organisation to create a compassionate culture where people can talk and seek support if they want to, as well as be able to access information and resources easily.
It is important not to make assumptions and to take the lead from the employee in terms of what they would like to share and what support they might need. We should not assume that people with a terminal illness do not 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 what it going on in the organisation.
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, which is why a sensitive conversation with them is vital.
People professionals play a crucial role in supporting employees with a terminal illness. You can put in place policies and practices to ensure that the organisation treats them with compassion, empathy and dignity during this difficult time.
New CIPD guidance for people professionals on supporting people with a terminal illness offers further information.
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