Do you know how an employer treats an employee who has just received a terminal diagnosis? Or how much support an employee who is caring for a terminally ill loved one receives from their employer? Currently, there is no legal requirement for employers to offer their employees any workplace support.
There’s no escaping it, death and dying will impact us all, touching every aspect of our lives, including at work. Research from Macmillan Cancer Support estimates that 890,000 people of working age are living with cancer in the UK.1 As people are working and living longer, along with a permanent shift in workplace wellbeing in the aftermath of COVID-19, employees are expecting more from their workplace, and employers can’t ignore this sensitive issue or its impact on their business. Yet, when it comes to best practice for how employers should treat their employees who are living with a terminal diagnosis or caring for a dying relative, it remains unclear and there is no legislation or benchmark for workplaces.
If an employer searches on the keywords ‘terminal illness and work’, they will find thousands of results, many of them relating to legal or financial advice. Far less common is any helpful guidance on psychological support for employees on how to lead difficult conversations about death and dying with compassion. This means that when it comes to workplace support, it is often both inconsistent and insufficient.
At Hospice UK, we’ve witnessed how it impacts on people and organisations, and in response in 2019 we developed our workplace programme, Compassionate Employers. We currently support over 41,000 employees through grief, caring and illness in the workplace by sharing our expertise in end-of-life care and helping them to create a compassionate culture. Organisations often come to us because they may have made mistakes in the past, or had a death in the workplace, and are looking to develop best practice. We’ve learnt that workplaces need a clear framework for providing tailored and holistic support to employees affected at any stage of the end-of-life cycle. The result is a win-win for everyone – employees can continue to enjoy the benefits of work, while their employer retains their skills and expertise.
What is the current situation in the UK?
A cancer diagnosis is currently affecting over a million working people in the UK – if you also account for the 700,000 employees who are juggling work and caring for someone with cancer.1 Yet, shockingly, there is no legal requirement for employers to provide any workplace support. Employees have limited protection, most of which comes from the Equality Act 2010. This lack of legal protection often means that an employer’s response is unpredictable, and some employees are reluctant to share their diagnosis with their employer.
Luck of the draw
A lack of standardisation means that employees may receive completely different levels of support, even within the same organisation. Vague wording in policies can mean the quality of support comes down to what employees often refer to as the ‘luck of the draw’. It’s not uncommon to hear that one manager in an organisation approves paid leave and allows a terminally ill employee to work flexibly to get to appointments, not because the law says they have to, but because their own loved one had the same diagnosis five years previously, while another manager in the same organisation does not.
At Hospice UK, we often hear about the length of time employees spend navigating their employers’ policies or trying to find support information. Limited awareness and a lack of thorough process can lead to hours wasted, reduced productivity and increased workplace stress for an employee. Simply having a policy in place is not sufficient. What really makes a difference to an employee’s overall experience of navigating a terminal illness or caring for a terminally ill loved one, is the wraparound support and processes involved in enacting a workplace policy.
Why work matters
We often hear that employers can make unhelpful assumptions about what an employee will want to do after sharing their news of a terminal diagnosis. This may reflect our society’s wider discomfort with having conversations about death and dying. We caution employers against assuming anything and recommend an open and ongoing conversation between an employee and their manager or an HR representative to explore all possible options. It’s common for employers to overlook the importance of work to our wellbeing. Being in work can provide a vital sense of routine and consistency, particularly when a diagnosis disrupts other parts of our day-to-day life. It can also provide a sense of purpose, a stable income and the opportunity to develop skills and gain experience. It allows us to continue living, to connect with others and provide a meaningful contribution, giving us a sense of belonging. For some employees, stopping work may not be possible, for many reasons, including financial ones.
Unfortunately, we hear of too many cases of poor practice from employers; in particular, employees who disclose their terminal diagnosis, looking for support, and are instead put on a performance review, or even made redundant. Naturally, this is incredibly upsetting for the employee and their loved ones. Businesses often underestimate the ripple effect of this on colleagues, as well as on their public brand reputation, if employees share their experience with others.
Employers in care-based sectors can also be susceptible to making assumptions when the employee is a professional carer. For example, Ellen, a palliative care worker looking after her terminally ill husband, told us, ‘I’m sure I was treated differently because of my professional role, and not necessarily in a good way. Many of my palliative care colleagues assumed I knew how to cope, how to access help and support; but in truth, I was all at sea.’ Most of the negative experiences that employees report experiencing will be when assumptions have been made or if there is poor communication or a lack of flexibility.
What does Hospice UK do?
As the national charity for end-of-life care, Hospice UK is determined to provide a benchmark and establish best practice for workplaces. The Compassionate Employers programme supports employers and their employees through every stage of end-of-life, including a diagnosis, caring responsibilities or bereavement. The programme focuses on benchmarking and upskilling organisations. We assess an organisation every 12 months, comparing them with our other members and the wider market. We offer tailored recommendations to improve their workplace support and training, as well as 24/7 access to our members’ hub. This contains practical guidance, which we know is often missing for managers and colleagues, such as, ‘What to say to a bereaved employee’ or ‘How to share difficult news with your team’.
We have the expertise of our hospice workers, who are involved in delivering the training, and our lead workshop facilitator Laura Barrett is also a bereavement support worker at St Oswald’s Hospice. Trainees come from across industry, and include HR professionals, wellbeing leaders, line managers and mental health first aiders. There are some common concerns, as Laura explains: ‘Most often, I hear line managers who are worried because they lack the confidence in initiating or leading difficult conversations. They want to know exactly what to say or how to say it, and in particular, they have concerns about not wanting to upset their colleague.’
It’s good that there is a safe training space to talk about what line managers find difficult, so they are better prepared when, inevitably, they have to have the conversation, as Laura points out: ‘Managers are reassured to know that there is no perfect thing to say, and it can help to know what to avoid, including cliches such as “every cloud has a silver lining”. I tell them that bereaved people most often say that they would rather their manager said something than not have the conversation at all. Our role is to help this process, and we know that giving workplaces guidance, as the Compassionate Employers programme does, can give people the confidence they need to get started.’
Alongside virtual and in-person workshops, the Compassionate Employers programme recently launched an e-learning tool, which includes three simulated bereavement conversations, based on the real-life stories of Nikki, Ross and Dan. This way, employees can build their confidence and practise conversations in a psychologically safe, private space.
In a difficult wider workplace environment, it’s heartening to know that Hospice UK is providing a practical solution for some employers, while also raising money for the future of hospice care. We can see the effects and impact already: for example, managers who tell us they’ve had a conversation they were previously too scared to have, or employers increasing their paid bereavement leave or introducing a Carers’ Policy for the very first time.
Power of compassion
The need for programmes like Compassionate Employers is growing. As people live longer and work longer, employers are likely to experience more cases of terminal illness in the workplace, which they need to be prepared for. Forward-thinking organisations recognise that wellbeing benefits, such as offering staff terminal illness support, can help to build trust and a positive reputation with customers and clients, as well as helping employees to feel valued and supported.
Next in this issue
It’s worth pausing to acknowledge the effect on other employees of seeing a colleague at work go through a terminal diagnosis. It can be incredibly upsetting; but a supportive and compassionate approach from their employer can boost employee engagement and positive feelings towards the organisation. On the flip side, a poor experience can lead to the erosion of trust in a workplace, which can have long-lasting consequences for morale and relationships.
Interestingly, there is a growing body of research, which suggests that compassion in the workplace can have real benefits for an organisation, including reducing job-related stress and increasing staff retention.2 We’ve also seen how wellbeing support, such as offering a carers’ policy or flexible working, can boost an organisation, helping it to attract and retain more talent.
What is the legal position?
Employers do have legal obligations to consider, in particular the Equality Act 2010. The recent introduction of the right for workers to request Day One Flexible Working, and the Carer’s Leave Bill, introduced by Wendy Chamberlain MP, are both significant examples of changing approaches to workplace support. Employers can show that they are leading the way by becoming early adopters of these movements, creating a terminal illness policy and having a programme like Compassionate Employers in place, to give themselves a head start against any further employment changes.
From a moral perspective, I’d argue that supporting an employee who is facing a terminal diagnosis or caring for a dying partner, is quite simply the right thing to do. UK workers give such a lot to their employers, both time and expertise. In return, employees often simply ask for fair treatment and compassion, particularly at such a vulnerable time in their life. While employers may see the workplace as just one part of an employee’s life, they often underestimate just how much their approach and the support they offer can influence how a person experiences the care they receive at the end of life.
Death is one of the only certainties, and inevitably it will affect every workplace at some point. We are seeing a massive shift post pandemic, with the Bereavement Commission stating: ‘The COVID-19 pandemic means that there are an additional 750,000 bereavements across the UK’.3 As compassionate and flexible workplaces are becoming the expected norm, a good reputation is priceless in a competitive market, and stories of mistreatment or unsupportive employers often carry on long after the death of an employee.
What does best practice look like?
It’s encouraging to see employers that are implementing best practice on their own initiative. Our Compassionate Employer members and those organisations who have received our Gold Award for workplace support are excellent examples of employers who are leading the way. There are a range of initiatives that employers can offer to support someone with a terminal illness, and when we assess our members, we look for practical support in the form of having clear terminal illness policies in place, the provision of an employee assistance programme (EAP), peer support networks and forums, as well as how the organisation communicates with employees overall.
The need for flexibility comes up repeatedly – employees want to be able to fit work around their diagnosis and any changes that may come from this. A compassionate employer acknowledges this and makes suitable adjustments and accommodations, such as offering home working or flexible hours to allow them to attend medical appointments. However, given the number of working people in the UK who are facing a terminal illness, having a terminal illness policy at work in place is surprisingly rare. It is often just a small note in a sick leave policy or not mentioned at all. Having a standalone policy that is accessible and clearly outlined is an easy but often overlooked starting point.
A holistic approach
We have learnt that generous and flexible policies are great, but more often it is how managers use these policies, and how colleagues treat the employee that make a real difference. It is about a holistic approach, where everyone in the workplace feels confident and capable of talking about death and dying and of supporting employees through difficult moments.
This means everyone must get involved. From HR teams and colleagues to the services they signpost to – ideally, everyone in the organisation needs to be on the same page in terms of the overall approach and the experience that employees have as they face this difficult chapter in their lives.
What psychological support is available?
Psychological support offered to employees in the workplace can include providing an EAP or ‘We often hear that employers can make unhelpful assumptions about what an employee will want to do after sharing their news of a terminal diagnosis’ signposting to external helplines. An EAP is often viewed as a short-term, ‘catch-all’ support for any life, work or relationship issues employees may be facing – from managerial concerns to financial worries. This can of course be helpful, but it may not be suitable for everyone.
In my experience of referring employees to these services, it can be a frustrating process if employers are unclear of the service limitations or if employers fail to offer signposting to alternatives. For example, Ellen, a palliative care worker, who I referred to previously, was signposted to bereavement helplines by her employer, without success. She explains: ‘Four years after my husband died, I was at a very low ebb and phoned a bereavement charity, only to be told that the waiting list for counselling was at least six months long! I did manage to work through this period, but I remain very disappointed that I had no professional help at the very time I desperately needed it.’
This emphasises the need for managers to understand the remit of these services and to be able to communicate clearly about the actual support that is available. If this isn’t clear, employees can be left feeling dejected and less likely to reach out for support again. Unfortunately, I’ve heard of cases where employees have been referred to their employer’s EAP service and shared their experience with multiple people, only to be told that their circumstances were too complicated for the service. This is not to apportion blame with the service providers, as death and dying can indeed be complicated, but it comes back to the need to have clear communications and processes in place to support employees.
In reality, every employee is different and will have different needs. Some will take some or all of the counselling sessions offered by their EAP, while others won’t require any at all. However, it’s likely that some employees will need further psychological support, and employers do need to have a process in place for a referral.
It will depend on the employer whether or not they are able to provide longer-term counselling support for their employees. While we know that some employers are generous in their offering, it’s good practice to be able to clearly signpost employees to appropriate services for further help, including to BACP’s directory of therapists, which can be helpful if an employee is unsure where to turn next.
Practical steps for therapists working with employees, employers or EAPs
There is so much that therapists and psychologists can offer to employees who are living with a terminal diagnosis or caring for someone who has one, not just in terms of their one-to-one client work but as champions for better workplace support. Therapists have the capacity to hold difficult conversations about death and dying and can be an important part of an organisation’s feedback loop, helping an employer to become better educated and resourced to respond to the issue of death and dying at work.
It’s worth keeping an eye on key dates nationally, as therapists are well placed to seek opportunities to collaborate and create interventions that help facilitate conversations – such as during Dying Matters Awareness Week, which takes place from 8 May to 14 May this year – as this too comes under the umbrella of workplace wellbeing.
However, it’s important to recognise that workplaces may have wildly varying approaches, depending on their commitment to being a compassionate employer. It’s best to avoid making assumptions about what support is offered to employees or how easy it is for them to access that support. Too often, employers will only refer employees to psychological support when they reach a ‘breaking point’, yet we know there are so many effective strategies that can be put in place to prevent employees getting to this point, such as asking for workplace adjustments or flexible working, and therapists can help identify these needs with their clients.
The landscape of employee wellbeing is constantly moving, and thankfully I see a shift towards improving workplace cultures and the expectations employees have of their employer. It’s true that we’ve come a long way in being able to talk about what were once taboo topics at work, such as mental health, the menopause and financial wellbeing, and we are getting better at talking about topics like illness, death and dying. But you only need to look at the different ways in which terminally ill people are treated in the workplace to see how unfair that spectrum can be. There’s still a very long way to go.
Until we have a law that mandates that employers demonstrate a consistent approach towards their employees, I suspect that we will continue to see this unfairness across the UK. For now, Hospice UK is proud to run the Compassionate Employers programme, offering a solution which encourages workplaces to make positive, compassionate changes, regardless of the law. Employers can stand out as a compassionate place to work by introducing the key support that we know makes an invaluable difference to employees: flexibility, compassion and open communication.
1 https://be.macmillan.org.uk/be/s-1068-work-and-cancer.aspx (accessed February 2023).
2 Lilius JM, Worline MC, Dutton JE, Kanov JM, Maitlis S. Understanding compassion capability. Human Relations 2011; 64(7): 873–99.
3 https://bereavementcommission.org.uk/media/xube5elb/ukbc_summary_report_low-res.pdf (accessed February 2023).