In 2021, we highlighted wellbeing and terminal illness, exploring research to help design services and bringing together a network to share learning and ideas. This initial project was conducted in partnership with Clair Fisher, a collaborator of the Centre. Clair sadly passed away in January 2022, having lived with a terminal illness since 2018, during which time she was a passionate and influential advocate for improving wellbeing in palliative care.
Together with Marie Curie, our Work and terminal illness project seeks to build on this foundational work and to address a gap in research looking at working age people’s experiences of terminal illness. We’ve been identifying and developing research and practice to support employees at the end of life. This has included mapping and gathering evidence and putting learning into action with a guide for developing workplace policies and practice.
We worked with and collated insights from a range of people and organisations to further our understanding and knowledge – including Stephen Bevan, a Principal Associate from the Institute for Employment Studies. In January 2023, Stephen had a recurrence of oesophageal cancer and is now undergoing palliative treatment. Here, he talks to us about the difference job crafting can make in the workplace, drawing on his own experience and expertise.
For people living and working with cancer, their employers are legally obliged to make reasonable adjustments to their jobs.1Although the law is less explicit for non-cancer related terminal illnesses, the Equality Act and the accompanying duty to make reasonable adjustments is highly likely to apply This is about accommodating their changing capacity to perform the physical and cognitive parts of their jobs so that they can stay in work for as long as possible. While most employers manage to do this well, some find the whole process a real chore and a source of considerable resentment or even conflict, especially between line managers and employees.
In a survey of over 1,200 working-age cancer survivors, The Institute for Employment Studies (IES) and the social enterprise Working With Cancer found that many respondents who returned to work were still living with physical or cognitive limitations. For example, 93% reported fatigue, 68% brain fog, 54% pain, 60% anxiety, 55% loss of confidence and 43% peripheral neuropathy. As a result, the number working full time fell from 73% to 46%. The percentage of returning workers who were the primary breadwinner in their household fell only marginally from 58% to 51%.
In too many cases returning to work can also mean that cancer survivors struggle to get access to fulfilling or meaningful work. As one returner told us:
“While working in effect part time (due to chemo), I’ve faced low expectations from managers and I’m not given challenging or meaningful work. Because I am not present or very visible at work these days, my manager has also taken credit for some of my contributions.”
At their most rudimentary, so-called ‘reasonable’ adjustments can sound like they are just part of the array of concessions which an employee has managed to extract from their employer. In reality, a good-practice solution involves imaginative approaches to job redesign where the employee has played an active part in reshaping the job to accommodate their changing, or fluctuating, abilities.
Ideally, for employees with secondary, advanced, metastatic or even terminal cancer, it would be possible for employers to offer adjustments which conform to the principles of job crafting. Crafting is an approach to job redesign which is more explicitly led by the needs and aspirations of the employee.
There are several dimensions of ‘crafting’ which allow the demands of the job to be ‘ramped up’ or ‘ramped down’ depending on an employee’s need.
Task crafting, for example, may mean the employee gets to make changes to some of the tasks in their job by increasing the amount of challenge they face to enhance their motivation and learning. Conversely, they may temporarily shift to some less challenging tasks that decrease job demands which might hinder performance or reduce their wellbeing.
Relational crafting might involve changing the social resources available to an employee by securing more support, feedback or coaching or by securing more autonomy, responsibility and challenge in the job to operate more independently.
Cognitive crafting can ensure that employees are supported to revisit the purpose and scope of their roles to gain a refreshed perspective on the wider contribution and impact the job makes. For example, junior or ancillary employees in healthcare might benefit from a clearer understanding of how their job contributes directly or indirectly to improving patient care. Doing this in a way that improves their sense of ‘agency’ and aligns them more to the meaning and purpose of their role can, for some employees, help them to feel more engaged and empowered.
Most recently I have been pursuing a personal interest in how job crafting can provide a lens to look at improving access to meaningful work among those of us with a terminal illness as part of a project with the What Works Centre for Wellbeing and Marie Curie.
We were able to put together a practical guide for managers and HR professionals to help them support employees who have received a terminal diagnosis. It meant that in my own professional life as a researcher, I was able to work around the fatigue and treatment linked to my own terminal diagnosis by crafting my role differently.
For example, working on a project which involved conducting several detailed case studies, I agreed with my colleagues that my best contribution would involve designing the template for the case studies and writing up a section of the final report which drew out the main research findings and lessons rather than writing up each of the case studies themselves. This also offered me an opportunity to offer coaching support to a more junior member of the team on how to write up a research case study.
I’ve found that having a terminal illness has meant that I don’t want to feel patronised by my colleagues as they worry that they might expose me to excessive pressure or onerous deadlines. I’ve wanted to make sure that I’m still able to add value to a project, and to offer ‘know how’ to my colleagues as they design new studies and look for novel insights from their data. It’s here that I can play devil’s advocate or act as the ‘grit in the oyster’ as new project ideas are kicked around.
As my health impedes my ability to contribute, I know that I’m never again going to be the primary player in any future research project . I’m OK with this, and it’s great to be even peripherally involved as I make the kind of phased exit from work over which I feel I have a dignified and consensual degree of control.
Further links
Marie Curie: Work and terminal illness
Working with Cancer: A Last Hurrah? Reflections on a Terminal Diagnosis
Working with Cancer: Cancer Survival – Why Staying Positive is Never Enough
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