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Death’s ethical dimension

We are more likely to pass away in hospital, among strangers, than at home surrounded by our own, which places nurses in a new ethical position. 

Traditionally, before we entered the modern era of nursing, a large portion of people chose to die at home – with intimate care provided by family members at their bedside.

Today however, a growing number of people die at hospital. Approximately 54 per cent of the people who die each year do so in an acute care hospital, and this figure is only set to rise with the growth in the ageing population.

Nurses will take the place traditionally seen to by family members – not only responsible for providing care to the dying, but also possibly playing the most critical role in making sure the person is comfortable and feels cared for.

Professor Megan-Jane Johnstone, chair in nursing and director of the Centre for Quality and Patient Research at Deakin University believes that how nurses decide and respond in this situation can ‘make or break’ a person’s and their loved one’s dying experience.

“Nurses are influential in determining whether and what medical treatments will be continued or discontinued – for example, whether a patient should be made the subject of a ‘Do Not Resuscitate’ order; whether an advance care plan (ACP) should be initiated; whether food and fluids should be withheld; whether to fully disclose or provide just ‘adequate’ information concerning a fatal diagnosis and poor prognosis and whether visiting by family and friends should be permitted or restricted,” she said.

“These kinds of decisions have a profound ethical dimension and stand to have a profound impact on a person’s ‘best interests’ and dying experience.”

At the forefront of this care, nurses deal with patients from varying backgrounds, so it’s important that they are able to connect with patients in a meaningful way – being aware and understanding of different cultures and language backgrounds.

Johnstone believes that imperative to delivering such care is to understand how to connect in a meaningful way.

“To engage in a meaningful way with the patient is to engage in a way that is significant [in the sense that it is relevant and makes a material difference to the realisation of desirable moral ends], has purpose [in the sense that there are sound moral as well as practical reasons for taking one course of action rather than another], has intention [an aim or target; a designated moral end] and has value [i.e., demonstrates a worthy relationship between the significance, purpose and intention of proposed nursing care].”

If nurses are not aware of the individual meanings at play in terms of the end-of-life care for their patients, there is a greater chance of misunderstandings – which can be disastrous for not only the patient but also their loved ones.

Not being aware of a patient’s culture can mean the end-of-life care is approached in the wrong manner, and the wrong type of care given.

According to Johnstone, this can result in the care being perceived as ‘toxic service’ rather than care. “This can be disastrous for a grieving family and also a grieving patient – especially if the patient doesn’t want to die and doesn’t want to let their loved ones go and is grieving this pending unwanted uncontrollable loss,” she said.

“It can also be very damaging to family relations as family members ‘battle’ to protect their loved ones from ‘care’ that may be well intended, but nonetheless meaningless to the patient, or carrying the wrong meanings for the patient.

“I have seen cases where well intended comments and actions by nursing staff and doctors (e.g. trying to enact an advance care plan or deciding a patient should not be for resuscitation) have left patients feeling worthless. As one patient once put it, ‘I feel like a piece of meat’.”

The impacts of not receiving culturally appropriate care can extend further than just the emotional aspect. Not receiving the right type of care can give rise to what Johnstone describes as the “nocebo effect” – where negative health beliefs are prompted to such an extent that the patient may experience more acute symptoms and may even die prematurely.

For these reasons, researchers from Deakin University will be looking into the role of nurses and the strategies they employ in end of life decision making for patients with culturally diverse backgrounds.

The project, funded by a Nurses Board of Victoria Legacy Limited Ella Lowe grant, will see Johnstone, as well as professor Alison Hutchinson from Deakin University’s Monash Health Partnership and Dr Benice Redley, senior research fellow at the Deakin-Epworth Centre for Clinical Nursing Research, conduct a qualitative descriptive research inquiry – interviewing nurses working in acute care hospitals about their perceptions and experiences of caring for older people from culturally diverse backgrounds.

“We are focusing on acute care as this is where there exists a significant gap of knowledge in the field. We believe that we could learn a great deal by talking to nurses about the issues they face, the strategies they use to deal with these issues, and ultimately, to inform the decisions and actions they take,” said Johnstone.

“We further believe that the lessons learned from the nurses who come forward to participate in our study will be of interest and use to members of the profession as a whole and will help to improve their practice in this under-researched area.”

The main aim of this research is to put cross-cultural end-of-life care on the map, and results will form the basis of further investigation of the link between responsibilities and decision making of nurses and the appropriate death experience of patients and families from culturally diverse backgrounds.

Johnstone said little attention has been given to the end-of-life care experiences of people generally from diverse cultural and language background and of older people in particular, which means “their experience and the experiences of the nurses who are at the forefront of caring for them are largely invisible”.

“Whether nurse ‘involvement’ in end-of-life decision-making makes an appreciable difference to either the quality of end-of-life care that a patient receives, or to the “quality of death” that a patient may ultimately experience, is unknown. Also unknown is whether nurses are as involved in end-of-life decision making as is commonly assumed,” she said.

“We want to find out about what is actually going on in practice – what’s nurses believe and think is happening in practice – what’s working and what’s not working when caring for older people of diverse cultural and language backgrounds and what can be done to make end-of-life care ‘better’ for this population, which we know on the basis of anecdotal experience is not as good as it could be. We envisage this study being the first of a program of studies on the issue.”

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