In recent times there has been an increase in community conversations around death and dying. These conversations include topics such as how and where we die, the concept of a good death and the need to plan to die well. In Australia, 60 - 70% of people want to die at home but only 14% do. Fifty four percent of people die in hospitals and 32% in residential aged care facilities.
End of life care can involve multiple services across different settings. The care can be poorly integrated, disconnected, and involve duplications, gaps and delays. This can result in confusion, distress and frustration for patients and their families.
This project is identifying the care services provided to people during their last six months of life, and evaluating the degree of integration of the services.
A project advisory group has been established with a range of MARC partners with expertise in end of life and palliative care to oversee the project.
As of March 2018, MARC has gained approval for multi site ethics and research governance for all sites. Data collection has commenced with further recruitment of participants. Ongoing audit of data collected with aiming for end of April completion
Would you like to Help Improve End of Life Care Services for Older People?
The Melbourne Ageing Research Collaboration (MARC), led by the National Ageing Research Institute, is a partnership of 11 organisations that aim to improve the health and wellbeing of older people. MARC is conducting a research study to improve the integration and communication of care services for people towards the end of their life and for their families.
To participate in this study you have to be:
A family member or carer of a person aged 75 years or older who has died in teh past 12 months.
Able to read and write in English.
End of life care involves different service providers, different services and may involve different settings. A persons’ end of life preferences, and treatment decisions (medical and non-medical) need to be communicated and transferred between service providers.
The purpose of the project is to improve the integration and communication of care services for people towards the end of their life and for their families/carers. The project will provide the researchers with information about how integrated services are and how well end of life care is communicated to older people, to families/carers and amongst care providers. Understanding the specific gaps and specific areas of concern will assist in the developing ways to improve the care provided.
Participation will involve an interview of approximately one hour about your recent experiences of care services provided towards the end of your relative’s life.
This study has been approved by the Austin Health Human Research Ethics Committee Reference Number HREC/17/Austin/335.