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May 10, 2023 | by Joanne Smithson

Working with a terminal diagnosis – putting research into practice

Each year Hospice UK’s Dying Matters Awareness Week encourages conversations about end of life, and this year from 8 to14 May 2023 they’re inviting people to come together to talk about death, dying and grief in the workplace.

Here, we revisit learnings from our work and terminal illness project in partnership with Marie Curie and set out the next phase of our research, putting our findings into practice. We’ll be building a cohort of people professionals to support the development of workplace policies, welcoming examples of existing policies and practices, and hosting a webinar to discuss this topic further.

Terminal illness affects people of all ages. In partnership with Marie Curie, we are exploring what is known about working with terminal illness, and what can change. As the population ages, works longer, and treatments continue to improve, it is highly likely that more people will be working with a terminal illness. The next step is to build consensus on measures of workplace wellbeing in this context, and develop the evidence of ‘what works’ to effectively support employees.

We have already conducted a scoping review and survey of HR decision-makers, which you can explore in more detail at the end of this blog.

Policy and process to support employees 

Discover opportunities to engage with the next phase of our project:

  • Join our cohort of people professionals, such as those working in HR or organisational development, to develop a working with terminal illness policy for your organisation. We are providing free workshops between June and September 2023. The closing date to get involved is Friday 16 June 2023.
  • Share your terminal illness workplace policies with us confidentially by responding to our call for practice to help identify the ‘active ingredients’ of effective support.
  • Register for our webinar taking place on Friday 12 May, 2023, at 12:00 BST. It will bring together research and practice to explore work and terminal illness. Led by Joanne Smithson (the Centre’s Head of Implementation), the session will include conversations with Clare Fuller (Advance Care Planning Advocate), Ruth Parry (Conversation Analyst), and Jo Armstrong (Physiotherapist). 

What we know so far

Our work to date has produced a number of important findings:

  • People of working age experience significant financial, social, welfare and legal challenges as a direct result of terminal illness. This can interact with demands of their diagnosis, and compound the poor mental wellbeing of individuals and close family members.

Diagram with arrows connecting four different areas: 'Social, welfare and legal needs', 'financial stress', 'mental wellbeing', and 'factors affecting continuation of work.'

  • Less than half of companies are managing an employee’s terminal illness outside of standard sickness reporting processes.
  • An ‘employer lottery’ in which the support people receive varies significantly. 
  • Too often employees are likely to find themselves unclear on the help available and unsure of how to access it.

From these insights, we have generated a range of resources including:

  • Scoping review – Experience of terminal illness in working age people. We convened experts from academia, policy and practice to share their learnings, and identify evidence gaps. Our scoping review, conducted by the team at Kohlrabi Consulting, helped us to understand what is currently known about the experiences of terminally ill people of working age.

Discover more from our broader work in this area, looking at how society can support the wellbeing of people with a terminal illness. There is further information on our project page Dying well, in a blog How can wellbeing evidence improve the lives of people living with terminal illness?, and in Dying Well: podcast mini series.

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