Supporting carers can help keep people out of hospital and at home, where they want to be

How can we help more people living with a terminal illness to spend their final days at home rather than in hospital? New research tells us we need to focus on the needs of their carers too.

Family carers usually play a big role in caring for the needs of their loved ones who wish to spend their last days of life at home.

However, new findings from researchers at the University of Manchester and University of Cambridge show that the support needs of these carers aren’t considered as much as they should be.

Why giving support to carers is important

When carers needs aren’t identified and addressed, it can lead to a breakdown of the care they’re able to provide to their loved ones at home. This increases the likelihood of unnecessary emergency hospital admissions.

As well as the pain and distress this can cause to people who are terminally ill and their families, we know from the recent NHS winter crisis that emergency admissions are putting a huge pressure on our hospitals. Many of them are already operating at capacity and struggling to cope with record numbers of patients.

Couple at end of life

Fewer than 1 in 10 of us say we would prefer to die in hospital. (‘Dying: Discussing and planning for end of life’ NatCen Social Research, 2012 British Social Attitudes survey.) But when carers aren’t given support it can lead to their loved ones being admitted to hospital at the end of their lives.

What the researchers found

From their research at three NHS trusts, the researchers found several key barriers which have made it harder for healthcare professionals to identify and address the needs of carers. 

Carers were often not aware their loved ones were approaching the end of life

The researchers found that, healthcare professionals often weren’t confident having conversations about death, and carers were not always aware that the person in their care was nearing the end of their life. 

In these cases, carers weren’t able to express concerns about their caring role, and healthcare professionals weren’t able to arrange the right community support services for them.

Carers often did not realise what to expect when their loved ones were discharged from hospital

The researchers found that hospitals currently don’t have any formal procedures to help identify the support needs of carers.

Although carers are usually involved in discussions with healthcare professionals prior to a discharge, these conversations often focus on the practical aspects of a person’s care, such as equipment needs. There is often little consideration of the carer’s physical or emotional needs.

Carers were not prepared for the challenges of caring for their loved ones at home

The carer role is physically and emotionally demanding. The research findings show that carers lacked a clear understanding of what it’s like to provide 24-hour care to a dying family member.

Carers also tended to overestimate the level of community support that they would receive or have access to at home.

Person living with terminal illness and their carer

Doctors often focus on addressing the practical needs of patients who are being discharged, rather than the needs of their carers.

We need to address carers’ needs

Someone who is nearing the end of their life may be forced to go back into hospital if their carer doesn’t get the support they need – this should never happen to anyone.

That’s why we must start recognising the burden of care on carers and family members, so we can start addressing some of the issues concerning hospital discharge and unnecessary readmissions.

Importantly, these research findings show that professionals need to discuss carers’ needs when they’re discharging patients nearing the end of their lives.

These conversations should start before the patient is ready to go home, and continue after they’re discharged to make sure their loved ones are supported.

Couple looking after each other

Nursing care and support at home can make a huge difference to carers. As an example, people who had care from the Marie Curie Nursing Service were twice as likely to die at home compared with similar people who did not get Marie Curie Nursing care.

A great starting point

Healthcare professionals and carers in the study felt that use of the Carer Support Needs Assessment Tool (also known as The CSNAT Approach) would help identify areas where carers may need more support.

Carers may also use this tool to discuss any further support they need to help them to care for their loved ones at home, including support for their own health and wellbeing.

Using this approach is a great starting point for us to understand what carers need, and how we can give them the support they deserve.

What to ask carers

You can use the Carer Support Needs Assessment Tool (CSNAT) Approach to support carers when their loved one is discharged from hospital.

More about the CSNAT Approach