Kerry’s daughter, Stephanie died after aggressive brain cancer immobilised her. She was aged 22. At diagnosis three years earlier, there were medical specialists aplenty. In death, no weekend doctors were on duty while she was in palliative care.
Her mother Kerry says her family’s cancer journey is like many others she’s heard about – “you get small glimmers of hope within a dark black cloud of fate”. Stephanie was a beautiful person who faced her illness with “incredible faith, perseverance and character”, says Kerry.
Stephanie went through surgery and treatment and when the cancer progressed, initially received medical care at home but was admitted into palliative care at a private hospital in 2014 when her health deteriorated and she lost the ability to talk and express her needs.
Kerry says hospital staff who cared for her daughter were “amazing” and “bent over backwards to care for her”, encouraging her family to pour love on her while they took care of her nursing needs “with much gentleness and kindness”.
“We could not fault them and would never speak ill of their standards of nursing and support,” Kerry says.
“We had access to pastoral carers, chaplains and were offered massages, which were all helpful.”
But Kerry says uncertainty about access to palliative care left her family scared. While Stephanie was extremely ill in hospital her family was repeatedly told that Stephanie’s palliative care wasn’t guaranteed when she needed it most, with inpatient care at the Sydney hospital caring for her usually lasting a maximum of two weeks.
“We were therefore often told that after two weeks we may have to be discharged,” Kerry says.
Stephanie was dying but nobody knew when she would pass away. Meanwhile, doctors weren’t available to provide specialist palliative care for her on weekends and Stephanie arrived at the hospital on the weekend of a public holiday, Kerry says.
“By then she was very sick and we had so many questions but no one to answer them,” Kerry says.
“This was after having medical specialists who explained everything throughout Steph’s illness but here, access was very limited.”
Stephanie died 13 days into her stay at the palliative care facility.
Services that are vital for people who are terminally ill and their families need improvement, because cancer patients need help throughout their whole journey, Kerry says.
“We who walk the journey with our loved ones and do everything we can to make their life as comfortable as possible are going to walk away from the palliative care experience at some point and it needs to be seen as just as important as all the treatment and care that occurs during the illness,” Kerry says.
“I really want to emphasise that I was entirely grateful to the staff and their care of my daughter and us… we need to investigate staffing of these services to not only provide plenty of doctors and nurses to give quality palliative care but also to support them as they care for patients and families through very difficult circumstances. Some of the nurses were not much older than Steph and were impacted emotionally whilst having a lot of demands on their time in a busy ward.”
“We need to ensure facilities are available statewide in cities and rural areas to allow access for all, including the Aboriginal community.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.