New home-based care program bridges gap for patients with life-limiting illnesses

It was not long after he had a second bout of COVID-19 that John Pinto realised the breathlessness he was experiencing wasn’t going away.

This shortness of breath was something he’d had before prior to getting COVID, but back then, he’d thought little of it.

Now, concerned his breathing could be deteriorating, John sought help from St Vincent’s Emergency Department. After a series of tests, he sadly learned that he had lung cancer.

It was difficult news for the 62-year-old former wine maker to digest, especially as it came with a poor prognosis. When he slowly started to process what was happening to him, the first person he called was his ex-wife, Genevieve Gibson.

The pair, who have two adult children together, including a daughter with an intellectual disability, had divorced just a few months earlier and not spoken to each other for several years while separated.

“I knew this was something I couldn’t do on my own. I called Genevieve to let her and the kids know and she felt it was best that I move back home with the family,” said John.

After a short stay in hospital, John was connected with the PallCare@Home program, a newly established service offered by St Vincent’s Hospital Melbourne that assists patients with life-limiting illnesses transition between hospital and community-based care.

St Vincent’s is the first Victorian metropolitan hospital to pilot this type of multidisciplinary hospital in the home program to palliative care patients.

Image: John Pinto and Genevieve Gibson

Personalising palliative care at home

The PallCare@Home service provides short-term specialist care wherein the patient is ‘admitted’ but in the comfort of their home, rather than in hospital.

The focus is on improving symptom control and offering psychosocial support to manage distress and grief, as well as assistance with respite, referrals to community services, advance care planning and end-of-life care.

Twice daily visits from a clinician (specialist palliative care doctors and nurses, together with Hospital in the Home nurses) is a core offering, along with 24-hour support via an advice line, and access to personal care and allied health professionals.

Nicola Gorwell, the program’s Nurse Practitioner Coordinator, said PallCare@Home is helping bridge a gap.

“It allows a smooth transition at a time when people are grappling with so much new information. They come home with bags of medications and lots of paperwork and instructions – life for them has changed dramatically and it can feel quite overwhelming,” explained Nicola.

“When they go home, the patient and the carer become responsible for pain management, and that can be daunting. Part of our role is to educate them, so they feel confident in how to best manage the symptoms at home.”

Among the many benefits of this service is that it gives people an alternative to hospital-based care, so they can discharge from hospital more confidently and potentially earlier, and also helps reduce the need for patients to present again to hospital. It can be helpful as well for patients who are already at home, to delay or completely avoid needing to come into hospital.

“Having this type of medical support when he was discharged meant John was able to stay at home while the team did his drug titration, whereas you’d normally need to be in hospital to make any significant changes to medication,” said Jennifer Grace, a palliative care nurse who looked after John through the service.

Image (clockwise, bottom left): John Pinto, Nicola Gorwell, Jennifer Grace and Genevieve Gibson

A program that empowers

Receiving this type of care at home has been comforting for John.He appreciated the flexibility the program gave him to live surrounded by his family and things that put him at ease.

“It was difficult letting go of my independence and the things I took for granted and enjoyed, like walking and cooking,” said John.

“In hospital you tend to see yourself as just a patient; you forfeit control to others. This program helped me reclaim that at a time when I was having so much thrown at me. It has made me feel more like me again.”

As his carer, Genevieve also endured challenges, especially as she works from home and was suddenly faced with juggling John’s changing medical needs, as well as other life demands.

“It has allowed me to continue to work knowing John is being well-cared for. I think it would have been quite scary for him if he was on his own in those initial days trying to manage the pain and not really understanding what was happening as things changed,” Genevieve said.

The ability to provide more personalised patient care ensure the team is able develop a rapport with a patient that is not always possible in busy hospital settings.

“We are able to create stronger personal connections with the patient that gives them a chance to open up and talk more freely with us in an environment they know and feel happy in. It breaks down barriers and empowers them so they are able to live in the community without fear, knowing they have the right support around them to do so,” said Nicola.