Palliative care deficits added insult to injury for motor mechanic and family
The NSW Health Minister is denying equity to dying people in the Nepean Blue Mountains region
The lack of a palliative care unit in the Nepean Blue Mountains local health district worsened the end-of-life care for a local motor mechanic and caused frustration and anger for his family.
This wasn’t what mechanic Joe Bartolo or his close-knit family wanted but the steadfast refusal of the NSW Health Minister, Brad Hazzard and the Berejiklian government to fund a palliative care unit in the Nepean Blue Mountains local health district means that thousands of people like Mr Bartolo are receiving sub-standard end of life and palliative care.
Nepean Blue Mountains local health district is the only health service in greater Sydney without a dedicated palliative care unit. Most other health districts have either two or three dedicated palliative care units.
Motor mechanic Joe Bartolo died last September at Mt Druitt Palliative Care Unit after being transferred from Nepean Blue Mountains LHD because none of its 11 palliative care beds were available.
He had been under the care of Nepean Blue Mountains Palliative Care service for six months before his death from a rare, aggressive cancer called sinonasal undifferentiated carcinoma.
In early September, Mr Bartolo had to return to hospital for treatment but there were no available palliative care beds at Nepean Hospital.
“We were told a bed was available at the Mt Druitt Palliative Care Unit, just 20 minutes from Nepean and closer to the family home,” said Ms Bartolo.
“After some discussion about the services there, Joe was transferred.”
Mt Druitt Palliative Care Centre is operated by a different local health district (Western Sydney), and Mr Bartolo was not known by staff there.
“That’s when the problems started and I feel now that all this might have been avoidable if Nepean Blue Mountains LHD had adequate palliative care resources,” said Ms Bartolo.
“There was no continuity of care after Joe was transferred to Mt Druitt Palliative Care Unit,” said Ms Bartolo.
Transferring to another health service meant getting to know a new team of doctors, nurses and allied health staff.
“The nurses there didn’t seem to fully appreciate his symptoms or how to accommodate him.”
Mr Bartolo became deaf shortly after his diagnosis and he had increasing difficulty swallowing and communicating in his last two weeks of life in the Mt Druitt Palliative Care Unit.
“Joe’s ability to communicate was severely limited by his deafness,” said Ms Bartolo, “but we made use of an iPad and Etch-A-Sketch device but as his symptoms worsened, it was nearly impossible for him to write messages or understand the messages we wrote to him. This was heartbreaking.”
The lack of continuity of care meant Ms Bartolo felt she had to act as his de facto carer and nurse instead of simply being able to be his grieving wife.
“I feel angry, confused and sad about this,” Ms Bartolo said.
“I felt like we needed a guide or advocate about Joe’s treatment at Mt Druitt. Someone who could tell us our options and what Joe’s remaining time there might be like. However, this didn’t happen and I made it clear to the nursing staff and the nursing unit manager that we weren’t happy with Joe’s care.”
Ms Bartolo said her husband received good care at Nepean Hospital, where he was admitted three times during his six-month illness. He also received at home visits from Nepean’s palliative care team.
“The doctors and nurses at Nepean Hospital and Palliative Care team knew him, understood his illness and there was good rapport and continuity of care,” said Ms Bartolo. He also received physiotherapy and occupational visits at home organised by the Nepean palliative care team, which aided his symptoms.
The palliative care service in the Nepean Blue Mountains local health district (NBMLHD) is at a breaking point and it is the only health service in the greater Sydney region without a dedicated palliative care unit.
Every other local health district in greater Sydney, including in NSW Health Minister Brad Hazzard’s electorate, has a dedicated, properly staffed, multidisciplinary palliative care unit, excepting the central coast, where the government announced a commitment last year to build a 10 bed unit at Gosford Hospital.
Northern Sydney local health district, which encompasses the Minister’s electorate has three specialist palliative care units, as do the South Western Sydney and Central Sydney local health districts.
These are purpose-built facilities that offer a comprehensive array of palliative and end of life services. They are staffed by trained palliative care nurses and doctors, together with an array of allied health carers, such as physiotherapists, pharmacists, dieticians, music and art therapists, and counsellors. They have kitchens where family and friends can prepare meals for loved ones, accommodation for family members, and they often have large verandas opening onto gardens and play areas for children.
How the NSW Health Minister is denying equity to dying people in Nepean, Hawkesbury, Mountains
NSW Health Minister, Brad Hazzard says 3 doctors, 7 nurses and 11 beds is enough to meet the unmet needs of dying people in the Nepean Blue Mountains Local Health District (LHD).
This is despite a briefing he received in August 2020 confirming an urgent need for more specialist doctors, nurses and palliative care beds to for the 390,000 people living in the four local government areas served by the Nepean Blue Mountains LHD. It also called for the establishment of a “dedicated multidisciplinary palliative care centre at Nepean Hospital.”
The briefing, developed by local palliative care staff and concerned citizens, was sent to the Minister by Trish Doyle MP for state member for The Blue Mountains and Brad Park MP, Shadow Minister for Health.
It said the Local Health District needs 8 doctors, 48 nurses and 26 specialist palliative care beds to meet the complex needs of dying people and to comply with national palliative care guidelines.
The briefing revealed that demand for palliative care in the Nepean Blue Mountains is overwhelming capacity: 70 per cent of potential patients in the region never receive supportive or palliative care.
It also described a range of other impacts of inadequate staffing and facilities, including:
Inadequate and poorly co-ordinated services that don’t meet the needs of vulnerable patients;
Increased healthcare costs due to admissions via Emergency Departments and delayed discharges;
Poorer symptom control;
Poor support for families and carers;
An inability to provide best practice specialist palliative care in dedicated settings.
Mr Hazzard didn’t reply to the letter. Instead, the Labor MPs received a short four paragraph letter from junior minister Natasha Maclaren-Jones MLC saying nothing beyond “consideration” being given to a specialist palliative care unit in “future clinical services planning”.
Lack of palliative care staff and infrastructure in Nepean Blue Mountains local health district
The Nepean Blue Mountains region has 11 hospital beds nominally assigned to palliative care but these are scattered across different wards in three hospitals spread across the vast geography of four local government areas. Palliative care patients can be admitted to any ward, or hospital, depending on bed availability among patients with conditions and needs far different to palliative care patients. Most admissions are via the emergency department.
According to national palliative care guidelines Nepean Blue Mountains LHD should have eight palliative care doctors, 48 specialist palliative care nurses and 26 specialist palliative care beds to meet the complex needs of people like Joe Bartolo.
Dozens of reports and enquiries have noted that just a tiny fraction of dying Australians get proper palliative care. In May 2020, a report by KPMG and Palliative Care Australia put that figure at just two per cent.
In Nepean Blue Mountains region just 700 people each year get any form of palliative care; far fewer get seen by specialist care staff while none have access to a dedicated palliative care unit.
Nepean hospital is undergoing a $1 billion redevelopment to upgrade a range of services, including an expanded emergency department, birthing suites, a new neonatal intensive care unit, new community health services, 200 hospital beds in new accommodation, and a multi-story car park.
But despite years of advocacy by Nepean’s small cadre of palliative care staff, there is no money and no commitment to upgrade palliative care staffing or infrastructure within the billion-dollar redevelopment.
Further reading
Penrith Press April 7, 2021: Nepean Local Health: calls for specialised palliative care unit
