‘In the place of their choice’

Community aged care workers are being upskilled in palliative care as part of an integrated approach to supporting more people to die at home, reports Linda Belardi.

Until the night of Mary’s death, Frances sat vigil at Mary’s bedside.

When she arrived in the evening she would softly greet Mary and tell her that she would be with her throughout the night while her daughters slept in the room next door.

For eight nights she sat at her bedside from 10pm to 6am, keeping watch while Mary’s family took a break from the physical and emotional tolls of caring for their dying mother at home.

Frances* is one of more than 200 community aged care workers so far to receive dedicated training in palliative care home support.

As part of its four-year palliative care strategy, the NSW Government is funding the state-wide roll-out of home-based palliative care packages to support more people to fulfil their wish to die at home. Funding has been provided for the roll-out of up to 2,863 home-based palliative care packages by 2015-16.

Aged care providers HammondCare and Silver Chain have successfully tendered to deliver the new packages, which work in partnership with the state’s Local Health Districts (LHDs) to top up existing specialist services with additional hours of personal care and home support for terminal patients and their families.

As part of its service, Silver Chain is working with eight LHDs to provide personal care and evening nursing visits, as well as video support via a tablet device with a night nurse.

HammondCare’s model, however, is focused on building a palliative home support workforce by tapping into their experienced aged care workforce across the state. HammondCare’s packages, which began in November 2013, deliver up to 48-hours of flexible home support by community care workers trained in palliative care.

HammondAtHome general manager Sally Yule says the Palliative Care Home Support Program is supplementing the work carried out by specialist palliative care services in the community. “This is the coming together of the health and the aged care workforce,” she says.

“The specialist palliative care teams do what they can to help people to die at home, and they do a magnificent job, but they don’t have the resources to be able to stay with a patient overnight,” Yule tells Australian Ageing Agenda.

She says the availability of care workers specifically trained in palliative care to provide overnight care or short-term respite to stressed and fatigued family carers may mean the difference between a peaceful death at home and an unwanted hospital admission.

“There is a lack of well-trained supportive palliative care workers to work alongside and under the guidance of specialists to help terminally ill people to die at home and so one of the most things about this program is that it is about enabling choice. People want that choice and this program is giving people a real option,” she says.

Most Australians say they want to be cared for and die at home. Yet across Australia only 16 per cent of people achieve this outcome, and more than half die in acute care hospitals.

At the end of June, Yule says 80 per cent of people who have died while receiving a home support package have died in their homes.

The program, which can deliver up to 18 packages a week, is targeting seven LHDs and is a consortium project involving HammondCare, Sacred Heart Health and Calvary Health Care Sydney.

Tailored support

Bathurst palliative care nurse Cheryl Green says the HammondCare packages have helped take the pressure of families experiencing high carer stress and have been flexibly used to suit the needs of the family.

“With a care worker available throughout the night, families have felt comfortable to sleep rather than being on constant alert,” she says. “We have had another instance of a family carer who hadn’t had any respite for three months and she had missed seeing her grandchildren, so the hours were arranged so she could have an outing over a couple of weekends.”

Green says a request for a second package for a patient needing more than 48 hours of support can be made and the availability of the packaged support to families has been fast.

An additional workforce

As part of the program, generalist community workers receive training in palliative and supportive care through the Learning and Research Centre at Greenwich Hospital under international palliative care expert Professor Rod Macleod and specialist clinical nurse consultants.

The care workers are trained in pain and symptom management, the ethics of palliative care, understanding loss and grief, and self-care. Once the package is approved, the care worker joins the specialist palliative care team and is involved in a range of tasks including personal and domestic care, shopping, basic nursing care and observation.

One care worker involved in the program described her experience of nursing a client in her final hours: “During the last night Claudia* had lots of discharge coming out of her lungs and I had to wipe and change her napkin under her face frequently. Her bible and songbook were on her bedside table. I took her bible and read. After a long time reading I wondered if I should sing a spiritual song and I did. By the end of the song, she opened her eye’s wide, moved her shoulders and changed her breathing pattern.”

Local collaboration

In the areas where HammondCare does not have an existing pool of community aged care staff available, the organisation has signed a memorandum of understanding with aged care organisations to recruit and train their staff to deliver the service. HammondCare is currently working with 12 other aged care organisations to build this additional workforce.

Yules says:

“We have partnered with other aged care providers as recommended to us by the specialist palliative care teams in the LHDs. Across NSW we have now trained 200 community care workers in palliative care. In addition to HammondCare staff, we have MOUs in place with the other organisations where we don’t have a presence. It’s been a very collaborative program.”

Yule says due to the large geographical areas covered by the seven participating LHDs, the program has required the commitment from partner organisations to release and back-fill care workers that have been rapidly deployed to deliver a palliative care package.

“We’re all working towards the common goal to support people in our community to be able to die in the place of their choice. The local support and collaboration has been incredible.”

Yule says a key challenge for the program has been the limited availability of after-hours specialist support for care workers observing a client overnight. To address this gap, the NSW Health Ministry has plans to introduce an after-hours telephone support service to be staffed by specialist palliative care nurses.

Evaluation

In addition to the quantitative cost savings to the public hospital system, the program will also evaluate the qualitative impact of the support packages and the impact on family bereavement.

“Many families I have spoken to have a story about someone who they have lost where they wished they could have done better,” says Yule. “They feel like they have let their loved one down. A key question we have is does a better death improve the bereavement for the families left behind.”

Whole of community project

In addition to the development of the personal care worker role and workforce, James Daley, clinical nurse consultant palliative care with the Western NSW LHD, says other community resources such as expanded volunteer roles and networks also need to be developed.

He says death and dying should be a whole-of-society project and he advocates for greater community awareness and discussion of palliative care from an early age.

“In the same way we have sex education in schools, we need death education,” he says. “We need to promote healthier attitudes towards death and dying so that people enter into dialogues a lot earlier.”

He says the medicalisation of death has had the effect of disempowering communities.

In September, the Western NSW LHD’s Palliative Care Unit in partnership with the Program of Experience in the Palliative Approach (PEPA) will bring a Bay Street Productions play called ‘Four Funerals in One Day’ to three regional towns in the district. A public forum will follow the production to engage local communities on the topic of death and grief.

Daley says such efforts help to encourage the discussion of death and dying as not just the domain of specialists and health professionals but as a whole of community responsibility.

*Names have been changed.

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Support a call away

For the first time providers of aged care services in Australia will have access to a dedicated national telephone support line for advance care planning (ACP) and specialist palliative care advice.

The ACP phone advisory service started taking calls from 1 July and the palliative care phone line is due to be launched in September.

Project manager for the Decision Assist program Karen Conte said the ACP advisory service will assist aged care staff to work with clients to discuss and document their care preferences and help staff to understand relevant state and territory advance care planning legislation.

The ACP advice line can also discuss specific case scenarios and refer staff to specialised resources.

Aged care staff can call the ACP phone line, 1300 668 908, seven days a week from 8am – 8pm, while the palliative care advisory service will be available 24/7.

The two phone lines are part of Decision Assist, a Commonwealth Government funded program to enhance the skills of aged care providers and GPs in palliative care and advance care planning first announced as part of the Living Longer Living Better package.

The phone support will also be completed by a national roll out of face-to-face training workshops and online training for aged care staff. Over 350 aged care workshops will be delivered nationally from September until December 2015.

Other elements of the Decision Assist program including a smart phone app will be rolled out later in the year.

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