Tragic circumstances lead to passion for palliative care

Justine Betteridge, 49, is a remarkable woman.

She is a single mother of five children - Jack, Tom, Sophie, Ben and Amy - and for the past seven years, Justine has been surrounded by death.

In 2008 she lost her son Jack, when he was 13, from Sanfilippo Syndrome - a rare, severe and devastating neuro-degenerative disease. Just five years later, in 2013, she lost her son Tom, when he was 16, from the same disease. Earlier this year, Justine started work as part of HammondCare’s Palliative Care Home Support (PCHS) team.

“Some of my friends could not believe I was choosing a vocation that had caused me so much emotional pain and stress in the past. However, I felt I had so much to contribute in this area. And after going through such extremes in my life, it was about finding something that had meaning. My role is meaningful and rewarding. "

Inspiration behind her passion

Justine says her sons, Jack and Tom, have been the inspiration behind her passion.

“They are a constant reminder to me, that through adversity, no matter how great, there is always hope.”

At the start of this year, Justine felt she was ready to start working again. She needed to get some balance back in her life and work was to be an integral element of a new chapter.

Home support provides chance to serve

Tragic circumstances have led her to a passion for palliative care and as a palliative care support worker with PCHS, Justine’s role is about contributing to end-of-life care for a person in their home and supporting the family.

“HammondCare has given me the opportunity to put this passion into practice.”

"Every person and every family is different, so I need to be intuitive and listen well," says Justine. “A calm demeanour and effective communication are essential. As is the ability to treat every person with the utmost respect in a dignified and gentle manner.”

Her job involves personal care, documentation, monitoring pain and keeping the person as comfortable as possible during a time when they are often immobile and no longer eating.

Life lessons important

Justine says her life experience has taught her about the importance of palliative care and given her a deep understanding of how stressful it can be for the family at this time.

“My goal is to provide an exceptional level of care to every person and to relieve some of the pressure on the family, who at times can be overwhelmed by the intensity and constancy of providing round the clock care,” says Justine.

“People are not very good at talking about dying and death. Unfortunately, it is still a taboo subject, even though it is something that will happen to us all. Hopefully people will become more comfortable in discussing this topic, so that there can be more planning in regards to something which is significant.”

Packages enable choice

She believes the provision of PCHS packages is vital as many people want to die at home.

But she says, to enable this to happen, it is imperative that appropriate support and community health services are in place to allow the primary carer to cope with the challenging task of having their loved one at home, at the end of their life. And she says hospital is always an option, if and when needed.

“The home support packages allow people choice and choice is empowering. I believe having a loved one at home during this heartbreaking time, can leave a legacy of positive memories – and positive memories will help with the grieving process.

"For me the worst time of my life, was made as good as it possibly could be by an exemplary palliative care team. To now be part of a team that supports a person in need and their family during this complex and arduous time, is a privilege."

Touched by their journeys

Justine says she has enjoyed the job so far: "I feel comfortable, I love being there and making a difference. I have met some special people and been touched by their journeys. As time passes, the more I realise that the underlying theme that runs through every family I visit is unconditional love."

She hopes to do much more in the palliative care field in the future. And her advice for families and individuals facing this difficult time?

“One day at a time, try not to look too far ahead."

About the Palliative Care Home Support program

The Palliative Care Home Support program began in late 2013 as part of a $35 million NSW Government initiative aimed at improving access to palliative care. It provides a free package of 48 hours of end-of-life care, for people who are in the deteriorating or terminal phase of their illness.

HammondCare operates the service in a consortium with Sacred Heart Health Service and Calvary Health Care Sydney. Areas where the program is available include the Central Coast, Far West NSW, Murrumbidgee, Northern Sydney, South East Sydney, Southern NSW and Western NSW.

Initial figures released in May show that more than three-quarters of people referred to the program since it began in October 2013 have fulfilled their wish of dying at home. In comparison, Palliative Care Australia research shows that while 74 per cent of Australians would prefer to die at home, only 16 per cent do, with the vast majority of Australians dying in hospital.

- JENNY STEVENSON