Receiving a terminal diagnosis can obviously be a devastating experience for someone and extremely difficult to come to terms with. Many of us find it very uncomfortable to talk about end-of-life illness and death, and there can be considerable stigma and silence around these issues in society and at work. While respecting confidentiality and people’s individual wishes, it’s vital that organisations are ready to provide compassionate, flexible, and practical support for an employee who is facing a terminal diagnosis. However, new research reveals that there is variable support available across UK workplaces.

An ‘employer lottery’ of support

A survey of more than 1,000 UK HR decision makers, conducted by YouGov, revealed very patchy provisions in terms of the support that terminally ill employees can expect in the workplace. The survey of HR decision makers revealed an ‘employers’ lottery’ in which the support people receive, whether it be on flexible working, sickness absence, changes to duties, insurances, or direct financial support varies significantly. For employees working for small organisations, this variation is particularly marked.

The survey was part of a research study carried out by What Works Centre for Wellbeing and Marie Curie and, which was also supported by the CIPD. It’s part of a wider project to identify where research and practice need to go next in supporting the wellbeing of people with a terminal diagnosis. 

The HR survey found that, although 60% of organisations have in place enhanced flexible working options and reasonable adjustments to support people, less than half (43%) manage an employee's terminal illness outside of standard sickness reporting processes. This means many people who are still working with a terminal diagnosis could theoretically face a formal procedure if they have a certain amount of sickness absence due to their condition. In some organisations, this rigid approach could reflect a lack of focus and the fact that employers haven’t reviewed their policies and procedures in relation to terminal illness. However, even if unintentional, the negative impact of such an inflexible and punitive approach on someone’s wellbeing could be very detrimental at the most difficult time of their life. Further, such an approach does not reflect the compassionate, supportive and inclusive approach we would appreciate for ourselves and our loved ones if unfortunate enough to be living and working with a terminal diagnosis. 

Further findings include:

  • almost half of HR decision makers said their organisation had policies in place for terminally ill employees (44%)
  • just over a third of organisations (36%) had guidance for line managers on how to manage and support employees with a terminal illness
  • when HR decision makers were asked what they thought would make the biggest difference to improving the work experience of people living with a terminal illness who would like to keep working, flexible working, and organisation/team culture were the most frequently cited approaches.

Supporting individual needs and preferences

How someone responds to a terminal diagnosis can vary enormously from individual to individual. This includes their needs and preferences in relation to work. Some people may have no choice but to carry on working for financial reasons while others may opt for ill health retirement. However, one study in the scoping review of literature, carried out as part of the research study, found intrinsic reasons for some people wanting to carry on working.  It found that those people motivated by personal enjoyment, purpose, and passion were more likely to carry on working compared to those driven solely by financial reward. 

The TUC’s Dying to Work campaign is pressing for additional employment protection for terminally ill workers. It raises awareness about the importance of every person coping with terminal conditions having the choice of how to spend their final months. 

Guiding principles

The CIPD’s guidance on Managing and supporting employees with long-term health conditions has some guiding principles on support for employees with terminal diagnoses. These include the need to: 

  • Recognise the differences in experiences – some people will want, or need, to carry on working, while others may not want to.
  • Recognise the unpredictability of a terminal illness – it’s likely that the individual won’t know how long they might live for and therefore might not know what they want to do about work.
  • Appreciate that employees may not know their rights in terms of protection from discrimination – they might be worried that they will be made redundant or forced to retire if they disclose that their illness is terminal.
  • Provide information about the organisation’s ill health retirement policy and accessing their occupational pension. Where possible, provide employees access to advice about drawing their pension early as it could affect any life cover through work (which could be more valuable than their pension) and personal affairs such as writing a will and making a lasting power of attorney. 
  • Signpost people to external sources of advice as they could need a range of different sources of help and information. For example, Marie Curie is a leading end-of-life charity. They provide front-line nursing and hospice care, a free support line, and a wealth of information and support on all aspects of dying, death and bereavement. 
  • Agree with the employee what information they would like to be shared with colleagues and clients, and when. Remember it is their decision whether to tell others or not, but many people find that because of the effects of treatment, or being absent from work, telling colleagues can help them understand the reasons behind any changes to the employee’s role or working pattern.
  • If an employee sadly dies during employment, there could be a significant impact on their close colleagues and the organisation should be prepared to provide compassionate bereavement support for those affected and grieving. See the CIPD’s guidance for Compassionate bereavement support

About the author

Rachel Suff, Senior Policy Adviser, Employee Relations

Rachel Suff joined the CIPD as a policy adviser in 2014 to increase the CIPD’s public policy profile and engage with politicians, civil servants, policy-makers and commentators to champion better work and working lives. An important part of her role is to ensure that the views of the profession inform CIPD policy thinking on issues such as health and wellbeing, employee engagement and employment relations. As well as conducting research on UK employment issues, she helps guide the CIPD’s thinking in relation to European developments affecting the world of work. Rachel’s prior roles include working as a researcher for XpertHR and as a senior policy adviser at Acas.

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