Call for more classes on life’s final chapter

A leading educator says nurses and other health professionals need to be taught more about how different cultural groups approach death and dying, reports Linda Belardi.

Renowned healthcare ethics expert Professor Megan-Jane Johnstone has called for a component of death studies to be introduced into nursing education.

Johnstone said an exploration of meaning of life issues and differing cultural world views, would help support nurses and other health professionals to better approach the dying person and to acknowledge cultural differences in end-of-life care.

Cultural considerations relevant to end-of-life care remain poorly understood, poorly guided and poorly resourced, she told Nursing Review.

“Despite health services the world over adopting an ethos of patient-centred care, patients of minority cultural backgrounds face a perpetual struggle in trying to get their care needs met in a culturally meaningful and safe way when at the end of their lives,” said Johnstone, who is the chair in nursing at Deakin University.

Death education would help nurses to understand the role and function of culture in people’s lives and how it helps to diminish people’s anxieties about death.

“Culture is a mechanism by which we repress our otherwise paralysing knowledge of our own inevitable mortality. It helps people to feel worth, significance and to mediate their sense of helplessness and vulnerability. Once health professionals understand that – I would really hope that they would start not to be so afraid of different cultural world views.”

This acceptance could help to challenge the thinking and behaviour of healthcare professionals around important issues such as disclosure, patient autonomy and informed consent. As more people who were born overseas age and enter care, the issue of cultural difference in end-of-life care decision making is set to come to the fore, she said.

For example, in some traditional cultural groups such as in Italian and Greek communities, autonomy and self-determination is not an empowering concept but actually means isolation. In these cultures, shared family decision-making is the dominant and over-riding value.

Autonomy is not universal but a construct of individualised culture, said Johnstone.
In many Western European cultures, it is the role of the extended family network to mediate when, where, and by whom information is presented to sick loved ones in order to sustain a sense of hope and dignity.

“In the dominant Western bioethical model there is this whole emphasis on control over the dying, hence the ‘living will’. Whereas for some cultural groups, having a ‘living will’ is actually ‘willing ill’. Instead, what they want to do is to empower and let live,” she said.

There is also an imperative for health professionals to be culturally sensitive and informed when discussing topics such as cancer that are considered taboo in some cultures. Johnstone said the decision to disclose a deadly cancer diagnosis to a patient against the specific request of family could have catastrophic consequences for the patient; not only negatively impacting on a patient’s will to live and their quality of life, but also potentially contributing to a premature death.

“To deny the expression of different cultural worldviews in end-of-life care contexts would be tantamount to stripping people of the security and serenity that their ultimate cultural beliefs give them when faced with uncertainty and fear,” she said.

Johnstone gave an example of a Greek family who asked their doctor not to disclose to their elderly father that he had terminal cancer, only to be told by the doctor that the father “has a right to know” and that this was “not about culture, but about ethics”. In these situations, the failure to take cultural differences into account and to understand the “culturally constructed” nature of ethics can ultimately be harmful to patients, she said.

“As health professionals, the onus is on us to understand the process of culture, because when we start to deny the expression of cultural worldviews, we are actually contributing to the breaking down of the processes that help people to feel less afraid, to feel esteem and that the world around them is manageable.”

Johnstone said she hoped the ultimate outcome of this type of education would be to help people “to improve their understanding of the cultural meanings of death and to develop a life-affirming awareness of it rather than seeing it in nihilistic terms.”

Johnstone’s ideas are explored in-depth in an essay published in the current issue of the Journal of Medicine and Philosophy.

Drawing on the work of the distinguished medical anthropologist Ernest Becker, Johnstone said that the field of bioethics and its support for euthanasia and advance care directives represents another cultural world view, among many.

Advocates of euthanasia and advance directives subscribe to a cultural world view that privileges choice, patient autonomy and control. But in its search for control in death it perpetuates a “grand illusion”. Euthanasia neither imbues death with dignity nor attains control, she said.

“Contrary to the claims of euthanasia advocates, rather than being an ultimate act of control, euthanasia is an ultimate act of surrender – of submission to inevitable death. Neither does euthanasia imbue death with dignity. This is because death is itself undignified since it calls into question the very meaning and worth of human life,” she said.

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