Ensuring quality palliative care for people near the end of their life is an important part of primary health service provision in Australia. For people who live outside of major cities in Australia, access to appropriate end-of-life and palliative care can be challenging.
Most Australian palliative care patients say they prefer to be cared for at home and the majority want to die at home, though less than 10 per cent achieve that wish, according to a 2017 report by the Australian Productivity Commission. People who live in rural or remote areas often need to travel long distances away from home to seek symptom management.
caring@home, a project funded by the Australian Government and led by Brisbane South Palliative Care Collaborative, provides resources for health care professionals, community service providers and carers to help manage breakthrough symptoms safely in a palliative care patient who wants to be cared for and to die at home.
One of the most common reasons a person receiving palliative care at home is transferred to hospital is because their symptoms, such as pain, anxiety or shortness of breath, are difficult to manage at home. Sometimes even with regular medicines, ‘breakthrough’ symptoms occur and the person may require an extra dose of medicine.
Often, towards the end of life, breakthrough symptoms need to be managed using subcutaneous injections. Medicine for breakthrough symptoms needs to be given quickly and in rural and remote areas, given resourcing and distances, a healthcare professional may not be able to do that.
Apart from unwanted hospital admissions, failure to achieve timely and effective control of symptoms can result in tremendous distress to patients, carers and community service providers, even more so for rural or remote patients who may live several hours away from medical assistance.
Resources for carers
Research from the Queensland Caring Safely at Home project shows that carers, when they are taught by nurses using high-quality education and resources tailored to their needs, can confidently, safely and competently manage subcutaneous medicines to relieve breakthrough symptoms in home-based palliative care patients. The caring@home resources support carers in this role. The resources include a handbook, diary, step-by-step guides, training videos, and a practical demonstration kit that allows carers to practise giving medicine using a needle-free injection technique.
Carers report feeling a strong sense of achievement and satisfaction from being able to contribute to the comfort of the person they are caring for. Conversely, they report feeling disempowered when unable to provide adequate and timely symptom management.
“We knew that when the pain hit we were able to do something to try and relieve it immediately, without having to sit waiting powerless for someone else to come and do it”. A carer from the caring@home project
Resources for health care professionals
General practitioners in rural and remote areas are the principal managers of care for community-based palliative patients. As a part of holistic care, GPs can promote effective palliative care symptom management in many ways. One aspect of symptom management is anticipatory prescribing for common end-of-life symptoms. caring@home has produced the palliMEDS smartphone app to familiarise GPs with eight palliative care medicines that have been endorsed by the Australian and New Zealand Society of Palliative Medicine (ANZSPM) for management of common terminal symptoms.
General practitioners can also involve carers in symptom management by using the caring@home resources to train carers to manage subcutaneous medicines safely. Online education modules are available for nurses on how to train carers to manage breakthrough symptoms safely using subcutaneous medicines.
"I am often called to attend patients at home who are in an unstable or terminal phase and the majority are not under the care of a community palliative care service. …The education resources from caring@home will make it much easier for GPs and nurses who are starting to work in community end-of-life care.” Dr Claire Hepper, MBBS FRACGP, Associate, Creswick Medical Centre, Victoria
The Guidelines for the handling of palliative care medicines in community services, developed by NPS MedicineWise can be used by community service providers to inform the development of detailed protocols and procedures tailored to the requirements of individual rural and remote services that are caring for terminally-ill people at home.
caring@home resources are applicable Australia-wide and can be ordered or downloaded from www.caringathomeproject.com.au or phone 1300 600 007 for more information.
caring@home is a sponsor of the 15th National Rural Health Conference.