Supporting end-of-life wishes through caring@home
By Liz Callaghan, CEO Palliative Care Australia
The caring@home project is an important project that will assist in supporting people in the community to live and die in their own homes, ensuring optimal symptom control. Palliative care is a multi-disciplinary approach to care which aims to improve the quality of life for people living with a life-limiting illness, their families and carers. As dying is a normal part of life, it is important for all Australians to have discussions about death and dying and make decisions on the type of care they wish to receive. Palliative Care Australia research has shown that eight in ten Australians think it’s important to talk about their end-of-life wishes however only one in four have actually had the conversation.
Australians, when asked, overwhelmingly see themselves as being able to die in their own homes should their situation allow it. The ability for loved ones to be able to support someone to die at home is largely reliant on support provided to them to be able to give medicines when required. There is a strong need for education and resources to assist them to confidently manage this aspect of their caregiving role. And this is where caring@home is so important, it will be delivering that education to enhance the ability of carers to manage subcutaneous medicines thereby assisting palliative patients access to timely symptom management.
Palliative Care Australia’s (PCA) National Palliative Care Standards recommends that care is based on current and comprehensive clinical assessment, delivered in accordance with a person’s expressed values, goals of care and preferences as evidenced in their care plan, and informed by the best available evidence. Effective care enables a person to live as well as possible, to the end of their life.
A person’s carers and family play a key role in providing physical, emotional, social and spiritual support and care. It is very important that services value and understand this role, appreciate its importance, and support the person’s family and carers by working with them to understand the level of care that they are willing and able to provide. The caring@home project will help achieve and implement these standards and help to emphasise that patient choices about their care should be at the centre of decisions at all times.
Last month, PCA, Consumers Health Forum of Australia (CHF) and Carers Australia (CA) released a Consensus Statement: Carer and Consumer Engagement in Palliative Care and End-of-Life Care which recognises the contributions of all those involved in the delivery of palliative and end-of-life care and the need to support individuals, families, carers and staff through all stages of the illness and in bereavement. This includes access to palliative care services which should be based on the individual, and available regardless of diagnosis or location.
With the help of the caring@home project, awareness and information of home care and community-based palliative care services will help families and carers become aware of palliative care options that are available. It is important Australians have conversations early in their lives about what people want at the end-of-life so families are not overwhelmed with hard decisions. It is important too that practical support for families and carers is part of that conversation and considered when then thinking about what the setting of choice may be for loved ones.
People must be empowered to direct their own care whenever possible, as the more choice and control a person has over their own health and care, the better the outcomes. By having the conversation with loved ones and health professionals about end-of-life wishes, people can ensure their treatment and care best aligns with their values and preferences regarding both the type and place of care and place of death. Key to these conversations must be an outline of what support families and carers can expect to be provided in the care of their loved ones. The caring@home project offers the practical support required to deliver subcutaneous medicines. Palliative Care Services are encouraged to share these resources with their clients and assist them to support carers to help manage breakthrough symptoms safely.