Death & Dying: Social Perspectives

Julie Ellis: julie.ellis@sheffield.ac.uk Sociological Studies

Aims today

1. Examine social perspectives of

death and dying

2. Discuss key sociological work/ concepts that help us understand dying experiences

3. Consider relevance of these concepts/ perspectives for contemporary end-of-life care and your future relationships with dying patients

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https://www.youtube.com/watch?v=KIWbuxYW7dQ

20/10/2016 5http://www.goodlifedeathgrief.org.uk/content/cartoons/

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20/10/2016 7https://www.goodlifedeathgrief.org.uk/content/resources/GLGDGG_Conversation_Menu_-_updated_Jan_2016.pdf

20/10/2016 8http://www.dyingmatters.org/news/brits-leaving-it-too-late-make-wishes-known

Taboo or not taboo?

Is death and dying taboo in modern western societies?

Psychology (individual level): humans can’t face own mortality - it threatens sense of self and place in the world

Sociology (collective level): argued modern societies also struggle - they are ‘death-denying’

(Howarth, 2007)

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It’s personal‘In some circles, not least the quality media, death andour feelings about death are no longer taboo but thenew radical chic. And yet some dying people still feelisolated, many bereaved persons find themselves anembarrassment to their friends, and many funeralsremain cold and impersonal’ (Walter, 1994, p.2)

‘Death is not a taboo. It is more that we aren’tencouraged to discuss our own individual demise’(Troyer, 2014, The Conversation)

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‘…we’ve fallen out of practice when it comes to the “everydayness” of death and dead bodies…’

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Troyer, 2014 The Conversation

Dying in a different era

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Staithes: fishing village in Scarborough, North Yorks

Death in the early 20th Century

– In the home

– Responsibility of family

– Laying-out the dead person (local women did this)

– Community event: involvement with roles shared

(Clark, 1993 [1982] in Death, Dying & Bereavement, D. Dickenson & M. Johnson (eds.) London: Sage)

Institutionalising death

In the 19th Century institutions established to manage social ‘problems’ (prisons, asylums, hospitals)

Sickness perceived as social problem and a process of separation began: sick from well

By mid 20th century it was the norm to die in hospital

Death had undergone a process of institutionalisation and professionalisation (Howarth, 2007)

Today, around 60% of people die in hospital. Research suggests 70% want to die at home (Dying Matters: www.dyingmatters.org/faqs)

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‘The removal of the sick and dying from thehome to the hospital has stimulated a great dealof criticism. In the context of dying, manycommentators have argued that in removingdying from the wider community to aninstitution, people have become distanced from,and unfamiliar with, death and that this hasnegatively impacted on the dying individual’

Howarth, 2007, p.118

Medicalisation of death

Aspects of ‘normal’ life (birth, ageing, death) are framed in biomedical terms (Howarth, 2007, p. 120)

• Death as failure

– Undermines the curative endeavour of biomedicine

• Use of medical expertise to control and ‘master’ it

– Technological intervention

• Assumption of need to prolong life – at what cost?

• Death as a natural part of life challenged (see Illich, 1976)

= Inappropriate and inadequate care for dying people and their families? (see Clark 2002 for overview of the debate)

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Studying dying experiences

• Glaser and Strauss (1965) Awareness of Dying

- Observational study of interactions between dying people, relatives and staff in US hospitals. Do dying people know they are dying? Should they be told?

‘Americans are characteristically unwilling to talk openly about the process of dying itself; and they are prone to avoid telling a dying person that he is dying’ (Glaser and Strauss, 1965, p.3)

- 4 awareness contexts: closed awareness, suspicion awareness, mutual pretence, open awareness

- Typically, being open with patients and families is now accepted as best practice, although how to break bad news remains a challenging issue…

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• Kubler-Ross (1969) On Death and Dying

- Psychiatrist who spent time with dying people and medical professionals

- Concluded ‘management’ of death was impersonal, inhumane and lacked interpersonal contact

• Sudnow (1967) Passing on. The Social Organization of Dying

- Observational study of how death managed in 2 US hospitals

- Observed instances of staff treating dying patients as though dead before they actually were: ‘what occasionally occurs here is that portions of the wrapping are done before death, leaving only a few moments of final touch-up work with the dead body’ (Sudnow, 1967, p. 82)

- Found unwillingness to do ‘death-work’ and interact with dying/dead bodies

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Social death

Death in social and interpersonal terms before actual biological death (see Mulkay, 1993)

Fearful society hides the dying person away - institutionalised, lonely, impersonal death (see Elias, 1985)

Implications for personhood of dying individuals

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A ‘good death’

Modern hospice movement developed in 1950s and 1960s

Paved way for palliative care speciality

Often synonymous with a ‘good death’

Aim to ‘demedicalise death’ as founder Dame Cicely Saunders explained:

‘a reaction against the impersonal medical city’

(cited in du Boulay, 1984, p. 137)

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http://www.stchristophers.org.uk/about/damecicelysaunders

Death the hospice way

‘Hospice refers not only to a place but also to a philosophy of care that incorporates the notion of palliative care’ (Howarth, 2007, p.138)

• Open awareness, communicate compassionately and honestly

• Multi-disciplinary teams/ no hierarchy

• Emotion and relationships - modelled on a family approach

• Total pain (address social, psychological, spiritual and physical needs)

• Holistic care: treat the whole patient

Although…

• Issues about equality of access to palliative care (especially for those with non-cancer diagnosis)

• Need for training for non-palliative care specialists (e.g. to provide good quality EOLC in hospitals)

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GMC: support doctors in care of the dying

20/10/2016 21http://www.gmc-uk.org/news/28655.asp http://www.gmc-uk.org/guidance/28733.asp

A doctor and a dying person

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Read Kate’s Blog: http://drkategranger.wordpress.com/

Watch Kate: http://www.edinburghfilmcompany.com/kate-granger-talk-goes-viral-1605/https://www.youtube.com/watch?v=sixOl7FIhl8

#Hellomynameis

Summary points

Dying is not just a biological process – it is social and relational

Experiences of dying are shaped by institutional norms and practices. These interact with and inform societal attitudes and approaches to death and dying

In modern western societies the management of death and its related experiences continues to predominantly occur within medicialised contexts

However, alternative approaches and ideas about how to manage death and promote personhood continue to challenge policy-makers and practitioners to consider what a ‘good’ death is

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