Clair Fisher Blog Legacy - How can wellbeing evidence improve the lives of people living with terminal illness?

This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.

In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”

Wellbeing evidence: by Clair Fisher

On this World Cancer Day I want to ask the question about how the wellbeing evidence can help improve the lives of those living and working with a terminal illness.

Terminal illness is defined as ‘an incurable or life limiting condition that is likely to cause death’. It’s hard to know how many people this currently applies to:

• Around 42,000 people of working age die in the UK every year, mostly from cancer and cardiovascular diseases, where they are likely to have been given a terminal diagnosis in advance of their death. 

• We also know that around 29,000 working age people are in receipt of the terminal illness Personal Independence Payment at any one time, but this figure only covers people reasonably expected to live for less than 6 months.

• There are also lots of issues with claiming this benefit and so the number of people living with terminal illness is likely to be much higher.  

From these numbers a working assumption is that around 100,000 people of working age are living with a terminal diagnosis. Although that is a tiny proportion of our population it is a significant number of individual lives at any one time.  

Work and wellbeing

For the first time this year the Civil Service Working through Cancer Network have included a specific session in their World Cancer Day programme for those working with a terminal diagnosis.  

It might be surprising to realise that people who are approaching the end of their lives could be still working, but modern advances in palliative care have made this possible and it’s right that employers are expanding their thinking about inclusive culture and practice to support this group of people.  

Health is one of the most important drivers of our wellbeing, so while we might assume that it would remain the focus for people at the end of their life, we’re starting to understand that this skews towards autonomy and independence as people get sick – the ‘what we do’ factor becomes crucial. 

Loss of income and the breakdown of relationships are two other factors that can negatively affect the wellbeing of those with terminal illness. Employment can be important in helping to tackle this – as it affects so many other drivers of wellbeing, specifically relationships, finance and skills. 

Supporting people to work while they are able, and to make appropriate decisions at a time of their choosing could be the key to increasing their wellbeing.

“Living with incurable cancer is very isolating for me, being part of a work family allows me to be my best and true self, have a voice, feel respected and valued.”

Staying in work

Beyond those living with a terminal illness, we also know that around 10% of those who were previously employed leave their job mainly for health reasons and that health is one of the most often cited reasons for not searching for employment.

“I’m still working as a roofing contractor with stage 4 Cancer.  No work, no pay and it takes my mind off my diagnosis. But some days are hard as I get tired easily with the

side effects of chemo.”

While many workplaces have good practices in place for those returning to work after a period of sickness, anecdotal evidence suggests that many feel unsupported to keep working after a terminal diagnosis. This is despite the fact that a terminal illness is likely to be a “disability” under equality legislation, meaning the employee has the right not to be treated less favourably at work, and the employer must consider reasonable adjustments to enable them to stay in work.

“I’m currently on a phased return to work with my employer and am trying to navigate a lot of complex red tape with very little support.”

Effective support

We also need to look at whether our workplaces are organised in such a way to effectively support people with terminal illness.  

A terminal diagnosis doesn’t necessarily mean that you will die in the short-term, or that you will even be that sick immediately. The experience of many people is also that their illness isn’t a straight line decline, but more like a roller coaster – where episodes of sickness and treatment occur in phases where periods of relative ‘wellness’ are also experienced.

This means that it can be hard to plan or predict how much work a person with a terminal illness can manage, and they might be forced to make decisions too soon or too quickly.  Those who feel they can be honest with their line manager and take a flexible and short term approach to decision making are more likely to keep working for longer, reaping benefits for themselves and for their employer. Having the opportunities to be involved in short-term projects, and reviews that happen monthly or even fortnightly could be appropriate strategies to give support. 

“I love my job but fatigue is an issue although I’m relatively stable at the moment.  When I attended a return to work course no one in there was given a diagnosis like mine and it was all hope and rainbows for the future. We weren’t allowed to actually talk about death or the things we want to do before because other people find it uncomfortable.”

My own story is that I kept working full time for more than 2 years after my diagnosis and it has been a lifeline for me, a real connection with the normal world and people who don’t treat me like a patient. I’m grateful to those people who have been kind enough to share their stories, that appear throughout this piece.

My hope is that through starting this conversation we can share existing evidence and best practice to better support those of working age who are diagnosed with a terminal illness.