Tag Archives: death-related taboos

ALIVE: In the face of death

Fashion photographer Rankin departs from his usual subject matter in his new project ‘ALIVE: In the face of death‘.

Highlighting taboos surrounding death and dying, Rankin is photographing people with life limiting illnesses. The portraits make his subjects uniquely visible at a time when many experience profound loss of identity.

An exhibition of the portraits can be viewed at The Walker Gallery, Liverpool.

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Welcome to our virtual book club!

Every month we will review a book that influences, or has influenced, research on culture and end-of-life care. To kick off our book club series we’ll be having a look at Ernest Becker’s Pulitzer Prize–winning, ‘The Denial of Death’.

In Denial of Death, published nearly 40 years ago, Becker builds on previously developed ideas (in his earlier books, “The birth and death of meaning: a perspective in psychiatry and anthropology” and “The escape from evil”) to eloquently argue that fear of death is the primary, unconscious, motivating force underpinning all human action.

Becker reinterprets the theories of Freud: taking inspiration from the works of the philosopher Søren Kierkegaard and the psychologist Otto Rank, he uses an ‘existential’ rather than sexual framework.

Becker argues that humans are caught in an existential dilemma: we are mortal beings conscious of our own mortality. Differentiated from the animal kingdom due to our symbolic identity, we are nonetheless consigned to the same fate as every animal. Hence this is our core problem: we are “simultaneously worms and Gods”.

As they grow, children become aware of their bodily, and hence mortal, nature. This awareness produces anxiety – a ‘terror’ – that must be repressed in order to continue as a member of society. Repression of the fear of death is therefore innate and universal; as Becker puts it, ‘Everything man does in his symbolic world is an attempt to deny and overcome his grotesque fate’.

‘Heroism’ is a reflex response to this ‘terror’: the need to triumph over death through forming part of something larger and immortal. Not only is our character formed to repress awareness of death, but also culture is described as a symbolic action system designed to serve human heroism.

Such a description of human society sounds, from the outset, rather noble: a system that supports heroic intentions. Becker however argues that from these noble intentions, ‘evil’ develops: conflicts and wars are, essentially, battles over immortality projects.

In addition to developing a theory of character, culture and even evil, Becker convincingly reinterprets Freud’s most famous theories, applying his existential ‘death anxiety’ framework, and outlines how mental illness is linked to too little or too much repression of the terror of death. ‘Good’ mental health is associated with not having too many, or the wrong sorts, of repressions. However, as everyone experiences death anxiety, freedom from repression is impossible. The most anyone can hope for is ‘a kind of relaxed openness to experience that makes him less of a burden on others’. This openness can be achieved by exploring the fear of death to get closer to the ‘authentic self’

Becker’s theory of culture can be seen as functionalist: immortality projects are a latent function of cultural-systems. Critiques of sociological functionalist perspectives are therefore also applicable to Becker’s work. Even though functionalist approaches remain unfashionable, the influence of the Denial of Death is still huge; a quick search in google scholar reveals over 10,000 articles published on terror management theory (directly derived from Becker’s work) in 2012 alone.

The enduring appeal of Becker’s work may lie in its hopeful message: facing our fear of death can, ultimately, lead to better lives and better societies.

Reviewer: Natalie Evans

Next month’s book club choices look at the end of life from a Tibetan Buddhist perspective. Natalie will review ‘The Tibetan Book of Living and Dying’ by Sogyal Rinpoche  and ‘Life, Death and the After Death’ by Lama Yeshe on December 20th.

 If you would like to suggest a book for review, or indeed review a book yourself, please get in contact with Natalie –  n.evans@vumc.nl

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

A recently published article from the PRISMA project provides a general overview of cultural issues in end of life care in seven European countries.

The abstract can be found below or the full article can be accessed here.

Aim

Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries.

Methods

We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes.

Results

A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities.

Conclusion

This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

Death: Southbank Centre’s Festival for the Living (27-29 January, London)

‘Death’ is a taboo breaking festival held by London’s South Bank Centre.

The festival aims to confront attendees with the universal truth of their own mortality. This is done with humour and creativity and through ‘music, workshops, literature and installations’.

The festival runs from the 27th to the 29th January. For more information and to book tickets click here.

Spotlight on India

In July we reported that the UK came top of the Economist Intelligence Unit’s ranking of ‘quality of death’ across 40 countries.

India, in contrast, was ranked last – scoring 39 out of 40 for ‘cost of end-of-life care’, 39 out of 40 for ‘basic end-of-life care environment’, 37 out of 40 for ‘quality of end-of-life care’ and 35 out of 40 for ‘availability of end-of-life care’.

The availability of end-of-life care in India is low, and physicians are reluctant to prescribe morphine due to fears concerning addiction.  In addition, due to cultural taboos surrounding cancer, many patients seek treatment at an advance stage of the disease, and face stigma in their communities. A number of organisations are, however, providing holistic end-of-life care and challenging negative attitudes held by both members of the general public and the medical professions in uniquely Indian ways.

CanSupport provides end-of-life care to patients with cancer in and around New Delhi. Their founder, Harmala Gupta, is the subject of a recent Readers Digest article.

Ganga Prem Hospice provides cancer care facilities in Northern India.

Cipla Palliative Care Centre provides end-of-life care in Maharashtra.

Jeevodaya is a Hospice which provides care for advanced stage cancer patients in Chennai.

The Dean Foundation provides end-of-life care in Chennai for patients with a range of conditions, including cancer, HIV/AIDS , diabetes, neurological and kidney diseases.

The Ruma Abedona Hospice provides end-of-life care in West Bengal, India.

Life before death: portraits of the dying

Photographer Walter Schels and journalist Beate Lakotta made portraits of 26 hospice patients before and immediately after death.

This beautiful and sensitive photographic initiative from northern Germany aimed to tackle taboos concerning death and dying.

The photos can be viewed on the following link.

In addition, the portraits and the patients experiences have been turned into a book (German language only).

UK comes first in ‘Quality of Death’ Index across 40 countries

A recently published study from the Economist Intelligence Unit measures and ranks the ‘quality of death’ across 40 countries.

The Index, commissioned by the Singaporean ‘Lien Foundation’, reveals that the UK has the highest quality of death. Measured variables include: the basic end of life healthcare environment; availability of end of life care; quality of end of life care; and, cost of end of life care.

For more information see the ‘Quality of Death’ page on the ‘Life Before Death’ website.

Although, for some, the tone of the website may be a little irreverent (for example ‘it’s no big secret that Death has a bad rep. It is after all the End-of-Life. Boo-hoo’), much of the content provides practical ways in which people can start to ‘talk about death’.