End of life carers should have six months paid leave, say experts

November 04, 2019

People who look after loved ones nearing the end of their lives should be entitled to up to six months paid time off work and safeguards for their job so they can return to work, according to academics from the University of Sheffield's School of Nursing and Midwifery.

The experts are seeking to support family caregivers with new research published in Palliative Medicine.

The research has resulted in a new, simple guide which takes the hard work and confusion out of identifying the different types of financial support available for those caring for people approaching the end of life.

Dr Clare Gardiner, Senior Research Fellow from the University of Sheffield Health Sciences School, said: "Family caregivers often report that they take on considerable financial burdens and feel unsupported in their role, which impacts their ability to provide care.

"The costs family members take on when caring for a relative cover almost all aspects of daily life, from transport costs to hospital appointments, changes to working hours and employment resulting in loss of earnings, or even changes to housing or educational circumstances."

It is estimated that there are on average 500,000 family carers looking after a relative at the end of their life each year in the UK alone, and the value placed on their care, which would otherwise be done by the NHS, was valued at £132 billion - close to the annual cost of health spending in the UK in the year 2014-2015.

"While caring for a relative at the end of their life may be one of the most selfless acts of kindness we take on for our families, we can't forget that the cost of time spent caring itself provides a valuable service to society, and ultimately reduces the financial burden on the NHS," Dr Gardiner added.

Family caregivers take on the majority of in-home care in the last 12 months of a patient's life, but this can be expensive and accessing help and support can be complicated and time-consuming.

Even though support is available, little is known by the public about the range and adequacy of financial support, welfare and benefits for carers. The full study evaluated six countries with similarly performing healthcare systems and found that the amount of support varies between the UK, Canada, Australia, Ireland, New Zealand and the United States.

Financial support in the UK is not centralised, so many different agencies provide different types of support with differing eligibility criteria, and very little of the support available is targeted at people caring for those approaching the end of their life.

The study found there are also limited opportunities to support working carers to remain in employment while receiving any kind of benefits, alongside an inequity in provision itself. Those caring for relatives with a terminal cancer diagnosis were more likely to be in receipt of benefits than carers looking after patients with other conditions approaching the end of their lives.

"These barriers can cause significant financial hardship for carers," said Dr Gardiner. "Because of this it is vital that their contribution should be recognised and carers helped to access the right support, as they can find getting help and navigating eligibility criteria confusing and difficult."

Dr Gardiner said the new study offers significant potential for policymakers to learn examples of best practice from other countries' experiences within a complex and evolving policy area, particularly with regard to the scope of financial support and how it is organised for different groups of carers and patients.

"A great example is the Canadian Compassionate Care Benefit for caregivers of patients at the end of life," she said. "This benefit entitles carers to up to six months off work on a reduced wage, and safeguards their job for when they return.

"This offers a great deal of reassurance for family caregivers facing the prospect of having to give up paid employment to care for a dying relative."

People in the UK are able to take some time off work for compassionate reasons, but the law does not state a set amount of time, and there is no guarantee of being paid. It is usually down to employers to decide what a 'reasonable amount of time' consists of, and that can vary dramatically, and is often unpaid.

There are numerous benefits to supporting people to remain in work, giving people the ability to work flexibly, or take a set amount of time off while providing either a benefit or reduced wage to help with associated costs.

"In the short term this approach may require some government investment," said Dr Gardiner. "But in the long run it provides huge economic benefits as people are more likely to remain in work, or return to work after caring. It's not just about providing welfare, it's about recognising the valuable service family caregivers contribute to our society."
This study was made available online in July 2019 ahead of final publication in issue in October 2019.

Notes to editors:
The University of Sheffield

With almost 29,000 of the brightest students from over 140 countries, learning alongside over 1,200 of the best academics from across the globe, the University of Sheffield is one of the world's leading universities.

A member of the UK's prestigious Russell Group of leading research-led institutions, Sheffield offers world-class teaching and research excellence across a wide range of disciplines.

Unified by the power of discovery and understanding, staff and students at the university are committed to finding new ways to transform the world we live in.

Sheffield is the only university to feature in The Sunday Times 100 Best Not-For-Profit Organisations to Work For 2018 and for the last eight years has been ranked in the top five UK universities for Student Satisfaction by Times Higher Education.

Sheffield has six Nobel Prize winners among former staff and students and its alumni go on to hold positions of great responsibility and influence all over the world, making significant contributions in their chosen fields.

Global research partners and clients include Boeing, Rolls-Royce, Unilever, AstraZeneca, Glaxo SmithKline, Siemens and Airbus, as well as many UK and overseas government agencies and charitable foundations.

University of Sheffield

Related Caregivers Articles from Brightsurf:

Dementia caregivers' stress leads to sleep deprivation
New Edith Cowan University (ECU) research has found 94 per cent of Australians caring for a loved one with dementia are sleep deprived.

Family caregiving may not harm health of caregivers after all
For decades, family caregiving has been thought to create a type of chronic stress that may lead to significant health risks or even death, alarming potential caregivers and presenting a guilt-ridden obstacle for those needing help.

Do ER caregivers' on-the-job emotions affect patient care?
Doctors and nurses in emergency departments at four academic centers and four community hospitals in the Northeast reported a wide range of emotions triggered by patients, hospital resources and societal factors, according to a qualitative study led by a University of Massachusetts Amherst social psychologist.

Self-help groups empower caregivers of children with disabilities
Caregivers in low-income settings will be able to respond to the challenges of bringing up children with disabilities, thanks to a new model created by the University of East Anglia (UEA) and the Kenya Medical Research Institute (KEMRI).

When caregivers need care
People who regularly care for or assist a family member or friend with a health problem or disability are more likely to neglect their own health, particularly by not having insurance or putting off necessary health services due to cost, according to a study published by the American Psychological Association.

Symptoms of depression in caregivers may predict future health problems
Caregivers of stroke survivors who show signs of depression may have a higher risk of suffering their own health challenges down the line, according to research presented today at ESC Congress 2019 together with the World Congress of Cardiology.

Caregivers of people with dementia are losing sleep
Caregivers of people with dementia lose between 2.5 to 3.5 hours of sleep weekly due to difficulty falling asleep and staying asleep -- a negative for themselves and potentially for those in their care, according to Baylor University research published in JAMA Network Open.

Teaching happiness to dementia caregivers reduces their depression, anxiety
Caring for family members with dementia -- which is on the rise in the US -- causes significant emotional and physical stress that increases caregivers' risk of depression, anxiety and death.

Study: Mindfulness may help decrease stress in caregivers of veterans
Caregivers of veterans who engaged in mindfulness-based cognitive therapy found it relieved stress, anxiety and worry, according to a new study led by University of Illinois kinesiology and community health professor Sandraluz Lara-Cinisomo.

Caring for an older adult with cancer comes with emotional challenges for caregivers, too
Until now, no large study has evaluated whether or not caring for older adults with advanced cancer is linked to caregivers' emotional health or to their quality of life.

Read More: Caregivers News and Caregivers Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.