Managing workers with terminal illness: a guide

Growing numbers of people will be working into older age, a period when many “critical illnesses” such as heart disease and cancer are most likely to be diagnosed
Growing numbers of people will be working into older age, a period when many “critical illnesses” such as heart disease and cancer are most likely to be diagnosed

With growing numbers of employees set to work into older age, managing those with terminal illness will be a priority for HR and OH in the future. Sarah Silcox offers good-practice guidance, while Zoe Dudgeon, associate for Charles Russell Speechlys LLP, advises on the legal requirements.

According to research from Macmillan Cancer Support, about 90,000 people of working age are diagnosed with cancer every year. Managing staff with a terminal illness is an issue that HR cannot ignore.

State and occupational pension ages are set to increase steadily in the medium term, meaning that growing numbers of people will be working into older age, a period when many “critical illnesses” such as heart disease and cancer are most likely to be diagnosed.

This guide covers the following:

  • The workplace context for managing employees with life-limiting conditions such as, but not restricted to, cancer.
  • Policies and procedures, including the case for implementing a separate workplace terminal illness policy.
  • The role of line managers – for example, in holding sensitive conversations with employees and managing work retention.
  • The role of HR professionals in ensuring that organisations meet duty of care obligations to employees – for example, under disability and employment legislation.
  • The role of occupational health practitioners, such as in assessing fitness for work and supporting employees to access employer-provided benefits.
  • Reward and benefit issues, including the interface between statutory/contractual sick pay, group income protection insurance and early ill-health retirement.
  • The role of the organisation when an employee dies.

Context

Managing employees with terminal illness is becoming an increasingly relevant HR issue for a number of regulatory, campaigning, demographic and health reasons.

The UK is one of a number of EU countries with a relatively old population and an ageing workforce, according to research from the European Occupational Safety and Health Agency (European Agency for Safety and Health at Work, 2016). The proportion of people aged 65 and over is expected to account for nearly 27% of the total EU-28 population by 2040.

The latest report from the chief medical officer, Professor Dame Sally Davies, reinforces this EU-wide data: the average age at which men and women left work rose by a year between 2004 and 2010, to 64.6 and 62.3 respectively (CMO, 2015).

There is also evidence that older people are returning to work after initially retiring early, as a result of financial push factors such as lower than expected retirement income. The latest chief medical officer’s annual report shows that about one-third of people who stopped work between 50 and the state pension age from 2008-10 experienced an immediate drop in income of more than 50%.

Falling pension contributions and a more general switch from defined benefit to contribution bases in much pension provision is likely to increase the risk of lower incomes later in retirement.

One in five people who return to work after cancer face discrimination from their employer or colleagues, according to research from Macmillan Cancer Support and YouGov (2011). Fifteen percent say they returned to work before they felt ready.

The issue has achieved prominence as a result of campaigns such as Dying to Work, which aims to extend the legal rights of terminally-ill people at work. The campaign’s charter commits employers to provide security of work, peace of mind and the right to choose the best course of action in employment.

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.

However, the situation of the worker with a terminal illness is complex; they may not be able to adapt to an adjustment and, due to the degenerative and fluctuating nature of the condition, what is “reasonable” one day may not be so the next.

Also, the termination of their employment contract due to, for example, capability or fitness to work, is likely to mean the loss of entitlement to certain benefits, including death-in-service payments.

Data from group income protection insurers Unum (2016) provides a reminder that all age groups can receive a terminal diagnosis. Twenty-two per cent of people claiming under its group income protection insurance are below the age of 40.

There is a strong legal, moral and business case for managing employees with terminal illness sensitively. This includes supporting people to stay in work with a terminal diagnosis, and/or helping them to leave work at an appropriate point, which has both reputational and business benefits:

  • Effectively managing an employee in this situation can help limit the cost of long-term absence and the potential costs of recruiting a replacement.
  • The protection in disability and equality law for staff with terminal illnesses places a legal obligation on employers, particularly as discrimination awards are uncapped.
  • Managing those with life-limiting conditions should be part of becoming an “employer of choice” – giving managers the tools and policies to handle the situation sensitively reflects on the organisation, helping to bolster its reputation as caring.

Policies and procedures

Absence management policies and procedures should contain, or point to, guidance for managers and employees on the specific instance of terminal illness. In particular, an organisation’s guidance on long-term absence should make managers aware of the sensitivities of dealing with a case involving terminal illness.

For example, guidance should ensure that managers explore benefit options for the person concerned, including early ill-health retirement and access to any support services, such as an employee assistance programme (EAP) or OH service.

The Chartered Institute for Personnel and Development (CIPD) has developed a cancer policy template in conjunction with Cancerbackup and Working with Cancer (CIPD, 2016). It covers employees diagnosed with cancer and staff who are carers, or family members, of those affected by cancer.

It sets out: employee, manager and organisational actions on diagnosis; working during treatment; time-off during treatment; after treatment; disability caused by cancer; giving up work; and potential unfair treatment. The overriding objective for any terminal illness policy should be to make the affected employee’s experience at work as supportive and positive as possible given the often very traumatic circumstances.

Line manager role

Line managers have an important role to play in managing team members with terminal illness and need to be given the tools and training to perform this role sensitively and effectively:

  • Managers are often the first point of contact in the workplace for an employee who has received a terminal diagnosis.
  • They are central to discussions on work adjustment, work retention and workload.
  • By handling communications well, managers can do a great deal to ensure the situation is as stress free as possible.

Employment experts Acas have recently issued guidance on managing progressive illnesses in the workplace and recommend having an early conversation with the affected employee to establish whether or not they wish to share their news with others, suggesting that colleagues may be more understanding about subsequent changes in work arrangements if they are aware of the situation (Acas, 2016).

Line managers should also be encouraged to obtain an understanding of the progressive illness and its likely effects on the employee, including what adjustments might be considered. This includes understanding the possible fluctuating nature of a condition and the fact that an employee may need additional time off for medical appointments/treatments.

Managers should also ensure that individuals are aware of their employment rights, including sick pay, time off and any access to private medical insurance, and/or occupational health services.

Macmillan Cancer Support has produced guidelines covering talking about cancer at work, with tips for managers on holding sensitive conversations (Macmillan, 2014). However, it is important to recognise that everyone is different and what is an appropriate approach with one person will not necessarily be helpful for someone else.

When sharing information, managers should concentrate on the impact an employee’s illness may have on people and projects at work, using positive language and without dramatising the matter.

A communication plan should be agreed with the affected employee early on. However, if the employee is adamant that their illness should not be disclosed to others, this must be respected.

HR role

Managing an employee with a progressive illness is a complex HR issue. The person’s condition is likely to be a “disability” under the Disability Discrimination Act 1995 and s.6 of the Equality Act 2010. This means the organisation must explore reasonable adjustments – for example, changes to hours and working patterns, reallocating duties and granting time off for treatment.

HR will also need to bear in mind the employee’s ongoing employment as disability legislation states that individuals should be allowed to work as long as they wish, subject to medical advice and any health and safety considerations.

The organisation continues to have a duty of care to the employee, so should ensure that they are supported – for example, by highlighting the availability of any employer-provided health services, such as an EAP and OH services.

Policies and procedures, including those covering long-term absence and sick pay, are obviously helpful, but many HR professionals find these have to be implemented flexibly, or even stretched, in the case of an employee with a terminal illness. HR should also consider supporting employees with their personal finances and affairs, such as signposting to agencies providing help to write a will or register a lasting power of attorney.

OH role

Occupational health services have a vital role to play in supporting staff through terminal illness and, crucially, in helping line managers and HR to perform their duties.

However, this is a complex area, according to Dr Julia Smedley, registrar at the Faculty of Occupational Medicine. She suggests that, although organisational guidelines are useful, “each case will need to be assessed on its individual merits, using the same OH approach as that used for other workplace health issues”.

OH professionals should provide managers with information and support, including guidance on the employee’s condition (with due respect to maintaining confidentiality) and how it might affect work ability, advice on work adjustments and fitness for work.

OH can support employees (and their families) as they manage any ongoing treatments and declining ability in situations where the employee decides to continue working. This might, for example, cover the side effects of cancer treatments, many of which may not become apparent until after treatment has finished.

OH has a vital role to play in supporting managers, including advising on fitness for work. “Some people will want to carry on working so the OH team will need to disentangle the medical and job aspects of the case, assessing whether or not it is safe and appropriate for the individual to carry on, possibly with the help of adjustments,” Dr Smedley suggests.

If an individual is not able to work, or chooses not to continue in work, OH services should help them explore eligibility for benefits and exiting the workplace.

This should include liaising with any occupational pension scheme on getting fast-track access to an early ill-health retirement pension, using any special rules applying. For example, many pension schemes will allow members to commute larger amounts of pension for a lump sum in cases where they are expected not to live more than 12 months. “The OH team can make sure this happens quickly where it is appropriate,” Dr Smedley adds.

It is also important for OH professionals to consider whether or not the individual’s terminal illness may be work-related, ensuring they receive appropriate advice, particularly if the exposure is historical as is likely to be the case in many work-related cancers.

Reward and benefit issues

There will be a number of reward and benefit issues to consider in the case of an employee with a terminal illness, including statutory sick pay, contractual sick pay, group income protection, critical illness cover, private medical insurance, occupational pension scheme benefits, death-in-service benefits and employee assistance programmes (EAP).

Statutory sick pay (SSP): all sickness is treated the same for the purposes of SSP, including terminal illness, and employers are not able to claim SSP back from the Government. There is an argument that terminal illness should be taken out of SSP and treated in a similar way as maternity pay, so that employers can claim it back.

Contractual sick pay: each scheme will have its own rules, but many will provide for a period of absence on full pay, tapering off so that all contractual sick pay ends after, for example, 12 months. Organisations will need to consider whether or not it is appropriate to extend contractual sick pay on a discretionary basis in the case of an employee with a terminal illness, with review points, but also making it clear that extensions to sick pay will not normally be refused.

Occupational pension scheme: defined benefit, employer-sponsored schemes have different rules relating to early ill-health retirement in the case of a member with a terminal diagnosis, but most will pay an immediate pension in cases where the member’s health is poor enough to stop them working. There are special tax rules so that an individual may be able to take the whole of the pension as a tax-free lump sum if they are expected to live less than a year. In these circumstances, it may also be possible to buy an “impaired life annuity”, which pays out a higher level of annual income than a standard annuity. Further information on pension rights and terminal illness is available on the Pensions Advisory Service website.

Employee assistance programme (EAP): these typically provide staff with counselling and support via a 24/7 confidential telephone helpline, plus referral to face-to-face support.

Critical illness cover: a form of insurance paying out a tax-free lump sum in the event that an employee is diagnosed with a specified illness or condition during the term of the policy.

Group income protection: this provides employees with an income if they are unable to work for health reasons and often kicks in after contractual sick pay is exhausted. It typically pays a percentage of normal salary and starts when an employee has been off work for a defined period.

Death-in-service benefit (DIS): the provision of DIS creates something of a moral issue for the organisation and needs sensitive handling. Under the terms of most schemes, an employee has to die in service to benefit, whereas many people with terminal illness have been managed out of the organisation by this point, often after a period on paid/unpaid contractual sick leave.

Managing the situation when an employee dies

Acas has produced a guide on managing bereavement in the workplace, including the death of an employee (Acas, 2014). It recommends that flexibility and empathy are guiding principles, and that communicating the news of a death to other employees needs to be personal and sensitive. Practical issues should not be overlooked – for example, contacting the employee’s family to offer condolences and exploring appropriate ways of commemorating the person who has died.

Terminal illness at work and the law

Duty of care

Employers’ have a duty to take reasonable care of the health and safety of their employees. This extends to mental as well as physical health. These duties arise in tort and statute, and are implied into all contracts of employment.

Disability discrimination

Long-term illnesses are likely to fall within the statutory definition of disability under the Equality Act 2010. The Act sets out the key elements to determine a disability. They are as follows:

  • Does the employee have a physical or mental impairment?
  • Does this have an adverse effect on their daily activities?
  • Is that effect substantial and long term?

Illnesses such as cancer, HIV and multiple sclerosis are “deemed disabilities” and do not require an analysis of the above elements. Certain conditions, such as addictions to alcohol or drugs, tattoos or piercings and seasonal allergies, are specifically not disabilities (although these conditions could give rise to a disability – for example, kidney failure caused by alcohol abuse). Note: the legal definition does not always correlate with the medical definition.

Disabled employees have the right not to be treated less favourably in the workplace based on their condition. Less favourable treatment includes the following:

  • direct discrimination (doing something because of the condition);
  • indirect discrimination (a policy or practice that has a more detrimental effect on people with the condition);
  • discrimination arising from disability (doing something, not because of the condition, but because of something caused by the condition);
  • failure to make reasonable adjustments (failing to make reasonable changes to the workplace or the role to lessen the impact of the condition);
  • harassment (unwanted conduct relating to the condition); and
  • victimisation (doing something because the individual has complained about discrimination).

Is an employee required to disclose a long-term illness?

Staff are not obliged to disclose long-term illnesses to their employers. However, it will be beneficial to the worker/employer relationship if an employee discloses a long-term medical illness that affects their performance and/or attendance a work. This may prevent disciplinary action in relation to performance or attendance.

Telling the employer will also ensure that they is aware of the disability and can make reasonable adjustments to help the employee. An employer cannot discriminate against an employee if it did not know (and had no information from which it should not reasonably have assumed or undertaken further investigation) that the employee was disabled.

Does terminal illness always count as a disability?

It is very unlikely that a terminal illness would not count as a disability under the Equality Act.

The illness is very likely to be a physical impairment which is long-term in the sense that it is likely to last for the rest of the person’s life.

At the beginning of the illness it is possible that it might not have an adverse effect on the individual’s daily activities.

For example, some inoperable cancers do not immediately cause significant physical effects and some people are able to manage the mental side very well. As the illness progresses, however, it is more and more likely to become a disability.

Terminal illnesses are therefore likely to be covered by discrimination law.

Data protection

There are three main points of reference for dealing with employees’ health records:

  • the contract of employment;
  • Access to Medical Reports Act 1988 (AMRA); and
  • Data Protection Act 1998 (DPA).

Contracts of employment should contain a clause under which the employee consents to the employer requesting an occupational health report.

This clause does not override the employee’s rights at law to refuse medical advice or provide a report, but could give rise to a breach of contract claim.

AMRA provides that an employer must have the consent of an employee to obtain a medical report from their GP or another practitioner.

An employee has the right to see the medical report before it is disclosed to their employer, and can request amendments or changes and/or refuse to allow the report to be disclosed.

Under the DPA, information about an employee’s health is sensitive personal data. In addition to complying with the normal data processing principles, employers must also ensure they meet additional conditions, such as obtaining the employee’s express consent or acting under a legal obligation.

References and sources of information

Acas (September 2016). “Conditions automatically treated as a disability – The Equality Act and Cancer, MS and HIV”

Acas (2014). “Managing bereavement in the workplace: a good practice guide”

Chief Medical Officer (2015). “Annual report of the chief medical officer 2015 On the state of the public’s health baby boomers: fit for the future”

CIPD (2016).“Working with cancer”

Dying to work campaign.

European Agency for Health and Safety at work (July 2016). “Safer and healthier work at any age – Final overall analysis report executive summary” 

Macmillan Cancer Support. (2014) “How to talk about cancer at work”.

Macmillan (2011) “Facts and figures: Working through cancer”

Unum (2016) “Group income protection benefit paid, July-August 2016” 

Working with Cancer

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