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Research to explore nurses' role in end-of-life care

18 April, 2013

The role of nurses in ensuring a 'good death' experience for patients and their families is being explored by researchers with Deakin University’s Centre for Quality and Patient Safety research.

Of the estimated 143,500 Australians who die each year, around 54 per cent (77,500) will die in acute care hospitals.

These figures are expected to rise as our population ages and older people with chronic illnesses are increasingly admitted to hospital when their end-of-life care becomes unmanageable at home. It is also projected that overseas-born older Australians will be overrepresented in these hospital admissions.

With nurses at the forefront of providing acute hospital care, their involvement in end-of-life decision making can 'make or break' the dying experience for patients and their families, making effective communication that crosses cultures all important, Deakin’s Professor Megan-Jane Johnstone said.

"With older Australians from a wide range of cultural backgrounds forming a large proportion of people spending their final days in acute care hospitals, it is imperative that nurses, and the health care system as a whole, accommodate cultural worldviews on death and dying, even if these differ from the prevailing and more commonly accepted views," she said.

Among the key challenges nurses face in caring for people from different cultural and language backgrounds is understanding and connecting in a meaningful way with them.

"Culture is about meaning and ‘meaning making’," Professor Johnstone said.

"If nurses don’t inquire about or try to understand the meanings people attribute to their end-of-life care experience this can sometimes result in patients and families being approached in the 'wrong way' and 'wrong care' being given. In either case this could have devastating consequences for patient and family alike – even though unintended.

"Ultimately, all patients and their families should experience a 'good death', one that is free of avoidable distress and suffering for the patients, families and caregivers; generally accords with the patients’ and families’ wishes; and is reasonably consistent with clinical and ethical standards and is culturally appropriate."

Through the project, funded by a Nurses Board of Victoria Legacy Limited Ella Lowe Grant, the researchers will look at the role of nurses and the strategies they employ in end-of-life decision making involving people from culturally diverse backgrounds.

"We are interested in understanding nurses’ 'death literacy'; how do they broach the subject of death and address the concerns that the subject may evoke in the patient, the patient’s family, co-workers or even themselves," Professor Johnstone said.

"What we find with this project will form the basis of further investigation of the link between nurses' end-of-life decision making and the appropriate 'good death' experience of patients and families from culturally diverse backgrounds."

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Mary | Tuesday, April 30, 2013, 1:02 PM
A definition of what a "good death is" will be the initial challenge for this research project ... many other studies have acknowledged that the "good enough death" is both more realistic and manageable/achievable in an era of high expectation and stretched resources. One Victorian palliative care service (some years ago now) identified that "culture" applied to everyone and didn't exclude Australian-born people (indigenous and non-indigenous)from the "culturally diverse" landscape (as so many practitioners, service providers, researchers and policy-makers do). Another challenge is to always invite the question "who makes the meaning/s'in culture and end-of-life care? Death literacy and a 'good death' is everyone's business, not just a nursing or healthcare domain.
kerrie | Saturday, May 4, 2013, 7:54 PM
Iam an RN CC In an Aged Care Facility and I am at the moment reviewing 60 Residents Advanced Care Directives. For the Residents I can not communicate with I have sent them to the NOK or POA. The others I will spend some time going thru the questions with them. Iam excited by the process and no I will learn a great deal from these Residents. When ever we call for MAS the first question they ask is, 'What is there NFR status'. It should be mandatory when ever someone enters an aged care facility that they complete an Advanced Care Directive.
Mary Tehan | Sunday, May 5, 2013, 3:22 PM
Part of the challenge for everyone is to get agreement across clinical settings that teh requests in ACPs are to be respected. Each time my 94-99yo mother was admitted to acute care from an aged care facility her ACP was not accepted ... only an NFR sufficed. On re-admission to the aged care facility another ACP was required in case there had been any changes to the overall instructions whilst in hospital. We all (mum and family) got sick to death (pardon the pun) of being constantly confronted with questions about death and dying when we were trying to embrace the preciousness of mum's life, relationships and story. For mum and a family who were very comfortable with facing these questions in their professional lives, it was a nightmare that had been imposed on us because some clinical staff couldn't see how easy we were making it for them (and they wouldn't talk to each other across healthcare settings)! Talk about the left hand not knowing what the right hand is doing ... Ultimately, mum died peacefully in the presence of family in her bed in the nursing home.