Ten case studies highlight Queensland’s palliative care shame

These are the heartbreaking stories of 10 Queenslanders who have been failed by a broken palliative care system.

The following unidentifiable case studies were provided by palliative care staff in Queensland.

Solutions for these issues are embedded in the Palliative Care Qld, AMAQ and Queensland Palliative Care Medical Directors system transformation request of $275 million per year.

CASE 1 - MUM TAKEN FROM HER FAMILY HOME

A female in her 40s with children aged 5 and 8 was being treated for advanced stage breast cancer. Her husband was struggling to juggle his roles as provider, carer, husband and father, as well as being ‘taxi driver’ to transport children to school and activities.

The family desperately needed additional nursing support at home but a state government program providing subsidised funding for home-based nursing for people aged under 65 was stopped last December 31.

A woman died a week after she was taken from her home and admitted to hospital.

Patients and families must now pay the full nursing cost which can often amount to over $500 a week if multiple visits are required including paying for the use of medical consumables.

The husband reported feeling overwhelmed with the stress and cost of everything but it was their final wish that she reman at home until the end. But when the wife’s condition deteriorated at home, she was taken to hospital where she died a week later.

If home-based palliative care packages to support nursing were available, it is likely she would have been able to die at home with her family around her.

CASE 2 - DEVASTATING TOLL OF AMBULANCE RAMPING

A female in her 40s with advanced and metastatic cancer. She told her family she wished to die at home but was unable to fund her own home based nursing care, therefore when her condition required additional support in the home, her family called an ambulance which took her to hospital but due to ambulance ramping problems, she waited three hours to be admitted to the Emergency Department (ED).

A woman with advanced and metastatic cancer waited three hours outside hospital due to ambulance ramping. Picture: David Clark

She remained in hospital, being treated ED overnight and staff sourced a palliative care bed for her in another hospital, but an ambulance wasn’t available to transfer her for two days.

When she was finally transferred and admitted to the palliative care unit she died the next day.

If rapid response palliative care teams were available, it is likely she would have been reviewed by the palliative care team in ED and a quality palliative care plan put in place to care for her, no matter where she was in the hospital.

CASE 3 - VICTIM OF POSTCODE LOTTERY

A male in his 40s had an advanced terminal illness living on the north side of Brisbane. He lived at home, supported by a roster of family and friends who acted as his carers.

He received a home-based specialist palliative care package provided by a private hospital. His condition deteriorated over a number of days and his carers called an ambulance.

The patient was unable to be admitted to the private hospital for palliative care as they were not funded to provide palliative care beds for northside patients (if he lived on the southside he would have had access to a palliative care bed). The patient was transferred to a public hospital and died in ED.

If there was more transparency and accountability of palliative care funding at the Hospital and Health Service level, the inequities of funding and postcode lottery of access to palliative care would be reduced.

CASE 4 - DISCHARGED WITHOUT BEING SEEN

A female in her 70s, diagnosed with end stage cancer, was discharged from a major public hospital without being seen by the specialist palliative care team, due to their large workloads and not enough specialist staff available.

She was discharged while on a waitlist for an aged care package.

A woman aged in her 70s with end stage cancer was discharged from a major public hospital without being seen by the specialist palliative care team.

Her family and GP struggled to control her symptoms at home with medication and although referred to a home-based specialist palliative care team, there was a wait time of several weeks. The woman had a fall at home and was transferred back to ED by ambulance. She died soon after in the ED.

If there was increased palliative care staffing throughout Queensland, to the level suggested by Palliative Care Australia, it is likely she would have been discharged with a palliative care plan to support her family and inform her GP.

They would have also had access to a home-based specialist palliative care team.

CASE 5 - TEEN DIED 500KM FROM HOME

An 18-year old female from a rural area underwent many months of treatment for a brain tumour in a Brisbane hospital and the constant travel put a massive strain on her family.

They requested to take her back home but due to her complex oncology treatment she required specialist palliative care treatment and that was not available in her town. She died in a city hospital more than 500km from home.

“The sad thing is that she didn’t get to say goodbye to her family, her animals and the place she loved and to go on her own terms in the place she wanted to be,” said a palliative care doctor involved in the case.

If specialist palliative care roles in regional areas were less part time and short term (often only one year positions) they would be able to attract more regional specialist palliative care clinicians and more palliative care would be available when and where people need it.

In a similar case, a lady in her 30s also from a regional Queensland area spent many months undergoing chemotherapy at a major Brisbane hospital with her mother driving 450km every few weeks to take her to hospital for treatment.

When the patient and her family understood that active treatment was no longer beneficial and quality of life through a comfort care model of palliative care was the best care at her end of life, she was discharged to her regional town as her family had “promised her she would die at home.”

The hospital’s palliative care team provided education and ongoing support to the local GP and community nurse who would drive to the family property several times a week and use telehealth consultations when required. On her final day, the local GP stayed at her house all day until she died comfortably at home, with family and friends close by.

The GP later thanked the Brisbane-based palliative care team for the education and support, saying “it was the finest medical experience of his career.”

The palliative care doctor, who oversaw the case, has met with the patient’s family several times in Brisbane to “catch up for a cuppa and a chat”, which is actually part of bereavement care. “The bereavement care during and after death of a loved one is incredibly important,” the doctor said. The majority of Queensland specialist palliative care services are not funded to provide bereavement care.

If GPs were able to access MBS items for home-based palliative care visits, more GPs would be available to provide care such as this rather than in their own time.

If a statewide bereavement care program was available across the state and palliative care teams were funded to provide bereavement care for at least 12 months post-death, there would be a reduction of complex grief issues and families would have access to support to help them move forward, through the grieving process.

CASE 6 - LACK OF GP SUPPORT AND EDUCATION

A male in his 60s with pancreatic cancer was being treated by his GP at home. His wife was his carer and due to her work not providing flexible work arrangements, she had to resign from her job. Due to his cancer, his pain increased.

His GP wasn’t experienced in palliative care, but did not refer them to a palliative care team. The wife requested that the GP organise a syringe driver for his pain medication as she had learned from other carers that this provided more consistency in pain management (rather than the peaks and troughs of injections), however the GP was reluctant to do so.

The wife was exhausted and up during the night assessing his pain and providing him with medication every few hours. He died at home.

If specialist palliative care teams were easily available for people at home, then GPs would have increased support and education to learn the latest, best practice treatment for palliative care and have access to equipment

If a statewide palliative care volunteer program was available throughout Queensland (as it is in Victoria, NSW and ACT) then carers would have more access to palliative care volunteers to help them care for their loved ones at home.

CASE 7 - NO SUPPORT FOR AGED CARE TEAMS

A female in her 90s lived in a residential aged care facility and had multiple health conditions including dementia (dementia is a life-limiting condition). She fell while at the facility and was admitted to a nearby major hospital.

When the emergency department staff reviewed her and identified there was no bone breaks, they discharged her back to the aged care facility. She then began to deteriorate rapidly the next morning and the aged care service tried to access medical support to prevent another hospital admission.

Aged care teams don’t have enough support to allow people to die in their place of choice.

Her GP was on holidays and a locum GP wasn’t available to visit the aged care facility for another 10 hours. Fortunately, one of her family members worked at the local palliative care service and organised for another GP to refer her to the local specialist palliative care service.

The palliative care team nurse practitioner visited her within two hours, she was assessed and a care plan was put into place.

The aged care staff were educated regarding the plan of care and she died comfortably in the facility two days later.

If there was increased palliative care staffing throughout Queensland, nurse practitioners and other palliative care teams could provide additional support for aged care teams to prevent unnecessary hospital admissions and people can die in their place of choice.

CASE 8 - NDIS SUPPORT CUT OFF

A male in his 50s with motor neurone disease (which is a life-limiting illness) was admitted to hospital with health complications and then was transferred home on his NDIS package of care.

His condition continued to deteriorate, he was given a prognosis of three months to live and he was referred to a specialist palliative care community team.

Once the palliative care team started providing care for him, all his NDIS support stopped, as his condition was not classed as a ‘health issue’, but rather than a ‘functional issue’ and under NDIS rules, state health teams then need to provide all the care.

The health support was much less than his NDIS support and he ended up being transferred to hospital and died there a few weeks later.

If NDIS packages continued to be available even when people are cared for by palliative care teams, then patients can receive appropriate care right up to their last day

If palliative care was available for people from the diagnosis of any life limiting condition – even if they have a prognosis of many years – then the palliative care team can provide early support and prepare patients and their family for the journey ahead.

The palliative care teams do not need to provide ongoing care, they simply provide consultancy support to the other health care teams.

CASE 9 - REFUSAL TO ACCEPT DEATH

A female in her 30s developed severe heart failure, she struggled to understand that her prognosis was short, and she kept asking “why me?”.

Her cardiologist suggested palliative care to particularly provide emotional and spiritual support. She refused stating that there was nothing they could do anyway and she had heard there was no point to palliative care.

The cardiologist saw a palliative care doctor in the hospital stairwell and mentioned the case, but because she refused a referral, they could not see the patient. The patient died a few weeks later, continuing to suffer emotional distress, not accepting that she was dying, right up to the end

A woman aged in her 30s would not accept she was dying, right up to the end.

If a statewide spiritual care program was funded to provide free palliative care throughout Queensland there would be increased opportunity for people to receive support regarding existential questions, including dealing with emotional distress when they are dying

If there was a public awareness and education campaign across Queensland, people would understand the benefits of palliative care and would be more accepting of referrals to palliative care.

CASE 10 - HUSBAND LEFT TO CARE FOR CANCER PATIENT

A female in her 50s with cancer was undergoing palliative chemotherapy as an outpatient while living at home. She had developed a serious chronic wound that required regular changes of dressing and her husband was doing this for her.

They requested a nurse to provide these dressing changes, but because she was under 65, she did not qualify for support in the home and they would have been required to fund the nursing support themselves.

Her cancer progressed and the wound became infected. She was transferred to hospital and died a week later.

If flexible home-based palliative care packages were available, she would have received nursing care to provide the wound dressings, taking the burden off her husband.