Improving the wellbeing of family carers

The first 40 years of Sue Binzer’s life were untouched by death. At 54 she has a very different story to tell, having not only provided support to terminally ill friends, but cared for her dying husband, mother and father. 

As a Consumer Representative for the Centre for Palliative Care, (St Vincent’s Hospital and the University of Melbourne), Ms Binzer speaks regularly about her experiences.

“Not many carers are comfortable talking about their experiences. But it’s so important that the voice of the carer is heard,” she says.

“I was pleased to be able to contribute to initiatives to improve the wellbeing of carers and ultimately the care they give their loved ones.”

A team of researchers led by Professor Peter Hudson, Director of the Centre for Palliative Care, has developed a program of evidence-based strategies to help family carers prepare for and manage the role of supporting a relative with a life-threatening illness.

This work, believed to be the most comprehensive of its kind, was recently published in the prestigious British Medical Journal.

“These strategies, which are underpinned by rigorous research, will help health professionals provide much-needed support to family carers,” Professor Hudson says.

According to Carers Australia, there are 2.6 million unpaid carers and more than 770,000 primary carers in Australia. The estimated annual replacement value of overall care provided in 2012 was over $40.9 billion.

Professor Hudson says family carers are prone to physical and psychological illness, and can be financially disadvantaged and socially isolated.

“The good news is our strategies have already shown that in many instances family carer distress can be alleviated,” he says.

These strategies have been tested in a research program, which involved several hundred family carers. During the program, health care professionals taught family carers what to expect, how to support their relatives and how to look after their own wellbeing. 

As a result, the strategies have demonstrated improvements in confidence about how a family carer feels about their ability to undertake their role and also proved to increase their overall wellbeing.

One of the initiatives developed as part of this program of research was the establishment of clinical practice guidelines to assist health professionals support family carers. 

Considered to be a world-first and endorsed by multiple national and international institutions, the guidelines are being implemented throughout Australia as part of the National Standards for Palliative care provision program. 

The World Health Organization advocates that palliative care should not only improve the quality of life for patients but also for their families.

“However, despite a mandate for health professionals to support family carers of patients with advanced, incurable disease, in many instances such support is inadequate,” Professor Hudson says.

“Family carers’ psychological needs are frequently considered secondary to those of the patient or overlooked and there is neither consistency nor a systematic approach to assessing needs.

“The burden of providing such support is high, with up to 50 per cent of family carers suffering emotional distress,” Professor Hudson says.

While most healthy Australians nominate home as their preferred place to die, only approximately 16 per cent of people will do so.

When Sue Binzer’s husband was diagnosed with kidney cancer, she informally built a team of doctors and nurses because she worked part time at a local clinic. 

“They were my friends and colleagues, but I realised later that it was exactly what you need to help you care well at home,” she says.

It was when her mother was diagnosed with aggressive bowel cancer and she found herself caring for two terminally ill family members at home, she realised the importance of a formalised arrangement with palliative care professionals.

The palliative team helped to set up a makeshift hospital room and would visit on a daily basis. 

“I couldn’t have done it without them. I would ask things like, am I doing this right and have I managed their pain?

“All I wanted to do was shower my family with love and they made it easier for me to manage it all,” she says.

Ms Binzer says it was definitely a grueling, but also an intensely special, period of her life living with her mother and husband during their last months and days at home.

“I have five boys and they helped me to look after Mum and my husband Brian.  We would pull all the good couches into the garden and enjoy the sun. Those times together were very precious,” she says.

“I believe with more support people can care for the dying in their homes. These moments are so valuable. I have come through it now and feel we did it as well as was possible,” she says.

centreforpallcare.org

www.mdhs.unimelb.edu.au