Early palliative support critical for end-of-life care outcomes

Palliative care is, often, a taboo topic. With its connotations of death and dying, it is a subject many people shy away from. But research shows palliative care is also about life – for both patients and their carers. 

“There’s a lot of public misunderstanding about what palliative care is,” says Anna Collins, research fellow at the Centre for Palliative Care.

“Most people immediately think it’s care of the dying or of the terminally ill. And while palliative care is certainly for people with advanced incurable diseases in most instances – that’s not to say it happens only in the last weeks or months of life,” she explains.

The Centre is a collaboration between the University of Melbourne and St Vincent’s Hospital. Its focus is on improving methods of service delivery, improving support for family caregivers and improving the management of common symptoms associated with advanced disease.

Despite being a relatively new field in medicine, the evidence of palliative care’s importance is mounting. 

The key to success, Ms Collins says, is introducing the patient to palliative care early, to establish sufficient supports and reduce the chances of a crisis event later on.

“But the reality is people often don’t ask about palliative care or it’s not offered because of the difficult conversations that may come up,” she says. 

When palliative care was first suggested to Maureen and Jim Gorman to help manage Maureen’s pancreatic cancer symptoms, they were reluctant to get involved.

“I thought palliative care meant doom and gloom,” says the 70-year-old mother of three and grandmother of six. “But for me, palliative care has been the most wonderful part of the medical system. The total focus is on you, as if you are the only person the staff are thinking of. They have been such a wonderful support to Jim and me.”

Mr and Mrs Gorman were initially introduced to palliative care through one of the clinical studies being undertaken at the Centre, which was investigating optimal management for treating the symptoms of severe weight loss. She responded well to the trial and has since moved into the care of a community palliative care service, Melbourne City Mission.

“I know in my heart that if it wasn’t for Jim and the palliative care girls, I would not still be here,” Mrs Gorman says. “They are just beautiful people.”

The Centre’s own research, conducted with high-grade brain tumour patients at St Vincent’s Hospital, found palliative care was routinely engaged at a very late stage of illness.

“This was interesting, given the type of brain tumour these patients had is incurable, with a known poor rate of survival,” Ms Collins says. “When interviewed, bereaved carers almost universally said they would have preferred their relatives to receive palliative care earlier.” 

While the current norm is for people to be referred to palliative care either by request from the family, which happens infrequently, or by other medical teams late in illness, patients experience significant benefits when palliative care is received earlier.

“When you randomise people to receive usual care versus a proactive early palliative care intervention, the evidence is now showing those who receive palliative care earlier do better,” Ms Collins explains. “Patients experience improved quality of life, reduced symptoms, lower distress and importantly, they are more likely to be supported to die at home if that’s their choice.”

The Centre’s research shows that, across the state of Victoria, if a person had been engaged with palliative care at least three months prior to dying, they were more likely to die at home – the preferred outcome for most.

As part of its mission to improve methods of service delivery, the Centre is in its second year of piloting a new model of care for all patients who present to the St Vincent’s Hospital with a new diagnosis of glioma, a form of brain tumour. So far, the program has had a 95 per cent take-up.

Patients are looked after by a shared team of neuro-oncology and palliative care experts, and offered the right levels of information, at the right times. Importantly, their team remains consistent throughout.

The response to the program has been very positive, with patients appreciating guidance through the complicated healthcare system and valuing the consistency of care. It has proved particularly useful for rural patients and for carers during emergencies, when the opportunity to contact their nurses directly has been highly valuable.

“The preliminary data analysis suggests an approach like this, that is very much grounded in the illness trajectory and makes palliative care part of routine care, results in lower distress for patients and carers,” Ms Collins says.

Research also now shows that, when palliative care is introduced earlier in the illness trajectory, carers experience improved bereavement outcomes. 

“With better supports, carers may not go on to have prolonged or complicated grief,” Ms Collins says. “There will always be a period of normal grief but the experience can be made much more positive when families are adequately supported throughout their loved ones’ illnesses.”

For Mr and Mrs Gorman, their palliative care team provide a welcome source of support for both of them.

“They never leave without taking Jim aside and checking how he’s feeling,” says Mrs Gorman. “Even though we are blessed with three wonderful supportive children, he can say things to the nurses he wouldn’t say to the kids. It’s very important.

“I have no regrets and I am simply grateful this didn’t happen to me when I was 30 or 40,” says Mrs Gorman. “For that I am thankful, as I feel I have been blessed to see my three kids grow up and for having enjoyed the time I’ve had with my beautiful grandchildren.

“Thanks to the support of palliative care, I am now home and this is where I want to stay.”

www.mdhs.unimelb.edu.au