It is said that nobody on their deathbed regrets not spending more time at work, but it seems this may no longer be true. Kate Hilpern investigates the growing trend of people working with a terminal illness and looks at the role of HR.
According to cancer charity MacMillan, more people than ever are working through terminal illnesses, often to within days of their death. “Certainly with cancer, people are living much longer than they used to. In fact, people now live for an average of between four to eight years post diagnosis of ‘incurable’ cancer,” says Hannah Lee, MacMillan’s HR business partner. “In some cases, they want to work to help restore a sense of normality; in others, they can’t afford not to work.”
Research by MacMillan shows that seven out of 10 cancer patient households suffer a loss in income. with an average fall in income of 50%. With 90,000 people of working age diagnosed with cancer every year, this is an issue HR can’t ignore. News that the state retirement age is set to increase in the long-term is also significant. It will mean more people work into their old age – when terminal illnesses ranging from heart disease to cancer are most likely to occur.
The role of HR
The workplace is not set up for the very ill, often leaving HR feeling stumped on a number of issues. How long should the person be “allowed” to work? What if they don’t want anyone else to know they’re ill? What about colleagues who faced with extra work and emotional distress?
While watching an employee become increasingly ill can be hard, employers should first and foremost be mindful of the law. “A terminally ill person is likely to be considered ‘disabled’ for the purposes of the Disability Discrimination Act 1995 (DDA) and section 6 of the Equality Act 2010,” explains Emma Bartlett, partner at law firm Speechly Bircham.
Resources for employers
MacMillan has created a guide for employers and managers on issues such as how to talk about cancer, how cancer affects people and relevant legislation. There are also templates for a comprehensive cancer policy that set out policies relating to individuals upon diagnosis, working through cancer, returning to work after treatment, and deciding to stop work.
The Chartered Institute of Personnel and Development (CIPD) has also produced a template policy and guidance. “The idea of the policy is to encourage employers to ensure terminal illness is dealt with in a consistent way, while at the same time accepting there is huge variation,” says CIPD adviser Ben Wilmott.
Source: NHS Employers.
This means employers are obliged to consider making reasonable adjustments, which can include flexible working arrangements, such as working from home, reducing working hours, allocating duties to other employees, allowing the employee time off for treatment and/or consider transferring them to another job (with their consent).
The DDA also states that the individual should be allowed to work as long as they want, subject to medical advice and any concerns around health and safety. If in doubt, ask, advises Lee, who says terminally ill people’s ability to work productively is often underestimated and that sometimes the person does, against all odds, pull through.
Conversely, Andy Moffat, HR director at insurers Aviva Europe, who has dealt with two such cases, says: “I know this is going to sound harsh, but sometimes you can over-compensate and try to care too much when it’s best to let the professionals take over. I’ve worked for great organisations whose social conscience is extremely high, so as an HR practitioner it’s easy to feel obligated towards the dying person’s wishes.
“But with one man, he was in such a bad state that I felt I had to take two medical opinions over and above him. But it was dealt with very sensitively, with both professionals and me explaining our reasons both on a moral and medical basis.”
Duty of care
This case also threw up the common challenge of an employee not wanting colleagues to know they are terminally ill. Here again, the individual is legally protected, in this case by the Data Protection Act. The problem is that physical deterioration, coupled by the amount of time people need off work, gets noticed.
“In the initial weeks, it was easy to respect the individual’s wishes,” says Moffat. “But once he was having chemotherapy, there were visible signs and people were asking outright if he had cancer. He agreed it was time to put them in the picture, but we kept him in control of the process and asked him how he would like the news relayed,” explains Moffat. “He asked us to hold a meeting with seven people to whom he explained his circumstances. We gave him the option of HR or his manager doing it, but he felt that was too formal.”
If there’s one phrase often said in relation to terminally ill employees, it is “duty of care”. But what Moffat’s experience flags up is the importance of remembering that duty extends to other employees. Making counselling services available, as well as employee assistance programmes, can help in adhering to this duty, as well as helping keep up morale - although Moffat says colleagues leaned on each other more than any external services in both cases he’s dealt with.
If he’s learned anything, says Moffat, it’s the importance of flexibility. “You can have all the strategies in the world but terminal illness is distressing and even the most experienced HR person won’t know what to say when it actually happens.” He adds: “Of course your starting point has to be sickness and absence policies, but any decent employer stretches this provision when it comes to terminal illness and the degree to which you decide to do this will depend on the individual case.”
Hannah Lee agrees with this principle. She says: “Money and time off for hospital appointments should be the last thing the person has to worry about, so normal policies should indeed be stretched. It’s also true that every case throws up new and often unforeseen challenges. But we’ve found HR deals with such issues most effectively when it plans ahead.”
Five top tips
1. Don’t overestimate the risks of a terminally ill person returning to work – or their potential for continued achievement.
2. Don’t leave communication to chance – agree a communication plan with the employee, including what information should and shouldn’t be shared.
3. If the employee remains adamant the illness is to be kept secret, you must respect this or risk breaching the Data Protection Act.
4. Terminal illness is a disability, so remember your legal obligations under the DDA.
5. Consider a policy but be flexible – terminal illness is unpredictable and every individual experiences it differently.