Improving talk about death

Aged care residents need to be able to express their end-of-life preferences and have them supported by the health professionals who care for them, says the lead investigator of an end-of-life care study underway.

Aged care residents need to be able to express their end-of-life preferences and have them supported by the health professionals who care for them, the lead investigator of an end-of-life care study underway told Australian Ageing Agenda this week.

The Melbourne Ageing Research Collaboration (MARC) is investigating how well end-of-life care services are communicated to older people including aged care residents and their families during the last six months of life.

Aged care provider Mercy Health is among those collaborating on the Victorian-based project, which involves the auditing of health records of people aged over 75 who have died and interviews with older people and family members.

MARC project manager and research clinician Sue Williams said conversations about death were difficult, but they were necessary to improve the services received in residential care and to avoid frustration.

“Aged care residents need to ensure their preferences for end-of-life care are expressed and supported,” Ms Williams told Australian Ageing Agenda.

Sue Williams

“Advanced care planning can improve the likelihood of end-of-life wishes and preferences being known and followed by health care staff. This can in turn improve residents and family satisfaction with end of life care services,” she said.

The study will also identify what care services were commonly used by participants in the last six months of life plus evaluate the amount of integration involved with the services and how the communication of information can be improved.

“There is a considerable variation in the quality of end-of-life care provided by Victorian aged care facilities and many people report experiences where services have been poorly integrated,” Ms Williams said.

Some of the biggest issues faced by aged care residents during the last six months of life are unnecessary transfers from residential facilities to hospital following an increased demand for palliative care.

“There needs to be improved skills and confidence of non-palliative care specialist staff in providing end-of-life care, particularly in aged care,” Ms Williams said.

Residents are often led to believe that hospitals are the most appropriate setting for end-of-life services instead of care homes however is not always the case, she said.

“Palliative care should be considered a core business for aged care providers.”

Early discussion and referral to palliative care specialist services will enable flexibility and ensure older people can be cared for and die in their place of choice, Ms Williams said.

Up to 70 per cent of Australians want to die in their own homes, however only 14 per cent do. Around 32 people of people die in aged care facilities, but the majority die in hospitals (54 per cent).

Researchers are still recruiting older people and families to take part in this study. Information on how to become involved in the project is available here.

MARC is a partnership of 11 organisations led by the National Ageing Research Institute that aims to improve the health and wellbeing of older people.


NARI and Advance Care Planning Australia recently developed a resource to support aged care managers and senior staff to embed advance care planning within their organisations (read more here). The guide, which was launched earlier this month, is available here.

Other advance care planning resources for aged care and health sector workers and individuals are available on ACPA’s website here.

National Advance Care Planning Week, which runs until 22 April, aims to raise awareness about end of life care preferences.

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Tags: acpa, advance-care-planning, MARC, Melbourne ageing research collaboration, nari, national-ageing-research-institute, palliative care, slider, Sue Williams,

1 thought on “Improving talk about death

  1. I work in aged care. We are well aware that palliative care and providing end of life care at aged care facilities are preferable to transferring dying aged care residents to hospital. I find it ignorant and a generalisation when you state relatives of residents in nursing homes are led to believe hospitals provide end of life services. We provide adequate time, education and emotional support when we need to inform relatives of the impending deterioration of a loved one. We tell them about all the palliative care resources available to aged care facilities such as palliative care teams; pastoral care and empathetic staff. It is not staff who are responsible for unnecessary hospitalisations. The relatives have the ultimate say and we are unable to override this. We do not have the legal authority. So we call an ambulance; cop abuse from paramedics for wasting their time and an unnecessary hospitalisation occurs.Though many relatives have insight that hospitals are not the right option, others will change their minds at the 11th hour out of fear of not doing enough or that they don’t want to make a mistake and don’t want to feel guilty. In short, EOL is often not about the dying resident; it is about the relatives unresolved feelings surrounding death. The generation we are nursing and their relatives see the hospital as fixing up all their problems. At the hospital there are doctors to take away the burden of decision making. There is someone else to pull the plug. I agree education on palliative care and EOL care is crucial so people; both health personnel; residents and relatives have a chance to make good informed decisions both in the community and in aged care facilities. However emotions rule in the end and emotions are not always rational, clinical or convenient.

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