Seeking a home close to the end

A Department of Health and Human Services spokesperson said consultation about improving care and support for patients and carers took place late last year.

“The government is developing a new statewide end-of-life-care framework that will ensure all Victorians have access to the best quality end-of-life care,” the spokesperson said.

“The government supports quality end-of-life care that relieves pain and suffering, and provides empowering support to family, friends and carers.”

It comes amid concerns that it is difficult to find accommodation for patients stuck between acute hospital treatment and end-of-life hospice care.

Dealing with cancer is a harrowing journey not only for patients, but for everyone around them.

Even with public awareness about the illness growing, few people suddenly dealing with a terminal cancer diagnosis in their family have likely thought about having to find a bed for themselves or a loved one during the final weeks of life.

But for some, that very issue is compounding the already stressful situation they are in.

The family of Elizabeth* remember her words as she was dying of cancer, still facing uncertainty about where she would be sleeping during her final days.

"She said, 'I don't know where I'm going to be. I just need to know where I'm going,'" her daughter-in-law Catherine* said.

Elizabeth, in her eighties, passed away last year. 

In her finals weeks, Elizabeth was discharged from hospital because she was no longer considered in need of acute care.

Rather than being able to enter a dedicated hospice for palliative care, she was told to find a nursing home. It was a search that took her family longer than expected. 

Elizabeth’s family said they were given little support to find a home other than being given a list of facilities and some advice to take the first bed available.

"We went around to all the nursing homes and made appointments to look at them,” Catherine said.

“We couldn't find anywhere that suited her needs.”

Elizabeth was billed for a private bed for seven nights before she found a facility. 

“We still hadn't found anywhere, so they started charging us a bed charge ... even though she had the top level hospital cover.”

She died four days after moving to the nursing home never having made it to a dedicated palliative care facility.

Elizabeth’s family is not blaming the hospital she was discharged from. But they believe the health system could be improved to spare patients and relatives from the stress of finding alternative accommodation during an already traumatic time.

“The most disappointing thing was she had to spend her final days in a nursing home,” Catherine said. 

"What upset me as well was I didn't know where we were going and what we should be doing and who we should be talking to.”

As well as the overwhelming grief of losing a loved one, Catherine says her family has been left feeling “fractured” by a system that seemed disjointed.

"I think we just need a co-ordinated approach so people know who to go to,” she said.

“Where is the support to help people navigate the system when you have no idea of the rules and policies?"

Both major health providers in Bendigo – St John of God and Bendigo Health –  say the length of time that a terminally ill patient can stay in their hospital depends on their needs.

But if a patient requires ongoing care once their acute care period is over, families need to be prepared to search for alternative accommodation – including at nursing homes.

Jayne Boyle, director of nursing and clinical services at St John of God Hospital Bendigo, said the length of a patient’s stay was based on how much acute care he or she needed.

"The length of stay for acute care is determined by the patient’s doctor in consultation with the patient’s multi-disciplinary team that includes nursing, pastoral care and discharge planning as well as the patient and their family," she said. 

"A patient is continually assessed by their care team throughout their hospital stay for the level of care they require and whether that is best delivered within the hospital, the community or other health facility like a nursing home or hospice.”

Ms Boyle said a professional pastoral care team supported terminally ill patients at all stages of care and advice was given when it was time for them to leave hospital.

"A dedicated discharge co-ordinator supports the patient and their family with making difficult decisions about the continuation of their care and assists them through this journey," she said.

Bendigo Health acting chief executive officer Liz Hamilton said patients may be told to seek alternative accommodation when treatment had finished and ongoing care was still required. 

For someone unable to go home, this could mean finding a nursing home if they were not considered to need immediate hospice care.

“There is no particular point at which people enter palliative care,” Ms Hamilton said. 

“Each patient is assessed individually and a decision regarding admission will look at a multitude of factors including clinical requirements, the patients' condition, personal circumstances, patient wishes, level of assistance at home or within the current accommodation they are at.

“Residential care facilities have extensive expertise providing palliative care and can access the community palliative care service if additional expertise is required.”

Ms Hamilton advised families to plan ahead – where possible – to avoid stress when it came to accommodation for a patient with a terminal illness.

“We believe it is useful for people to have discussions early in relation to advance care planning and end-of-life wishes as this can reduce stress on patients and families,” she said.

Staff recognised it was a difficult time for patients and families and they worked hard to support patients during their journey, she added.

“This may be through personal contact, the use of social work staff, linking patients and families into support groups or offering advice and information about what to expect, both in the present and the future.”

The family of Elizabeth believe the introduction of case managers working across multiple health facilities could better organise where a patient spent their final weeks.

This, they say, would relieve pressure on families.

*Names have been changed for privacy reasons