Health consumer research points to perceived gaps in palliative care

WA led research has highlighted opportunities for further improvement in palliative care. From the perspectives of patients and carers, it has identified gaps in awareness, access issues and a need for more consideration of the consumer experience and patient preferences.

Those receiving the best quality end-of-life care were those aware of palliative care as an end-of-life option and able to access a specialist palliative care program.

People who fared less well, receiving end-of-life care that was adequate rather than best practice, were either unaware of the palliative care option, did not qualify or were unable to access specialist palliative care. They also tended to have a non-cancer diagnosis.

Both groups were well supported by family and wider social network, but support for family carers by health services during caregiving and bereavement was perceived as inadequate.

Among issues identified were the need for earlier access to palliative care, help completing documentation on advance care planning and ensuring these wishes are followed by staff.

Improving consumer knowledge, referral processes, staff training and staffing levels, better delivery of pain medication and after-hours access emerged as other areas of need. Also, assistance to stay at home and increasing family carer support and consumer involvement in decision making and care choices.

Two under-served population groups in palliative care were people with non-malignant diseases such as motor neurone disease and dementia and those in rural and remote areas.

The research, in the form of a consumer survey and extensive literature review, was led by Palliative Care Professor Samar Aoun (Perron Institute and La Trobe University) and Associate Professor Bruce Rumbold (Director Palliative Care Unit, La Trobe University). It was funded by the WA Department of Health’s End-of-life and Palliative Care Program and published recently in the international journal, Healthcare.

“Our research indicated that in Australia and internationally, the consumer experience of palliative care was investigated poorly and that consumer contribution to service and policy design was limited and selective,” Professor Aoun said.

“Evidence points to a consensus that optimal end-of-life care integrates formal services and informal networks of care along the illness pathway,” Professor Aoun said. “Any comprehensive model must take very seriously the intersection between health service provision and social network support.

“In WA, a public health approach is proposed to integrate tertiary, primary and community services, with active consumer engagement in the design and delivery of care.”