Hostname: page-component-7479d7b7d-767nl Total loading time: 0 Render date: 2024-07-08T10:30:52.992Z Has data issue: false hasContentIssue false
  • English
  • Français

Preferences around the disclosure of dying: A vision from Portuguese society

Published online by Cambridge University Press:  29 May 2019

Ana Patrícia Hilário Open the ORCID record for Ana Patrícia Hilário [Opens in a new window]
Ana Patrícia Hilário*
Affiliation:
Instituto de Ciências Sociais, Universidade de Lisboa, Portugal
*
Author for correspondence: Ana Patrícia Hilário, Instituto de Ciências Sociais, Av. Professor Aníbal de Bettencourt, 9, 1600-189 LISBOA, Portugal. E-mail: patriciahilario@gmail.com
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

This paper aims to explore the extent to which the “revivalist” discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.

Method

An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.

Results

The “revivalist” good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The “social embeddedness narrative” offers an alternative to the “revivalist” good death script.

Significance of results

The “revivalist” discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.

Keywords

dyingawarenesspatientsfamilypalliative care
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 1 , February 2020 , pp. 63 - 68
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Andreotti, A, Garcia, S, Gomez, A, et al. (2001) Does a Southern European Model Exist? Journal of European Area Studies 9, 43–62.CrossRefGoogle Scholar
Broom, A, Kirby, E, Good, P, et al. (2014) The troubles of telling: Managing communication about the end of life. Qualitative Health Research 24, 151–162.CrossRefGoogle ScholarPubMed
Broom, A (2012) On euthanasia, resistance, and redemption: The moralities and politics of a hospice. Qualitative Health Research 22, 226–237.CrossRefGoogle ScholarPubMed
Cardoso, A (2009) A comunicação na transição para cuidados paliativos: um estudo exploratório da realidade portuguesa. Porto: Faculdade de Medicina do Porto.Google Scholar
Clark, D (2002) Between hope and acceptance: The medicalization of dying. British Medical Journal 324, 324–327.CrossRefGoogle Scholar
Exley, C and Letherby, G (2001) Managing a disrupted lifecourse: Issues of identity and emotion work. Health 5, 112–132.CrossRefGoogle Scholar
Field, D and Copp, G (1999) Communication and awareness about dying in the 1990s. Palliative Medicine 13, 459–468.CrossRefGoogle ScholarPubMed
Field, D and James, N (1993) Where and how people die. In Clark, D. (ed.), The Future for Palliative Care. Buckingham: Open University Press, pp. 6–29.Google Scholar
Glaser, B and Strauss, A (1965) Awareness of Dying. Chicago: Aldine Publishing Company.Google Scholar
Ferraz Gonçalves, J and Castro, S (2001) Diagnosis disclosure in a Portuguese oncological centre. Palliative Medicine 15, 35–41.CrossRefGoogle Scholar
Gordon, DR and Paci, E (1997) Disclosure practices and cultural narratives: Understanding concealment and silence around cancer in Tuscany, Italy. Social Science & Medicine 44, 1433–1452.CrossRefGoogle ScholarPubMed
Gott, M, Small, N, Barnes, S, et al. (2008) Older people's views of a good death in heart failure: Implications for palliative care provision. Social Science & Medicine 67, 1113–1121.CrossRefGoogle ScholarPubMed
Hilário, AP (2016) In-patient hospice: A qualitative study with Portuguese patients, family and staff. Death Studies 40, 290–297.CrossRefGoogle Scholar
Long, SO (2004) Cultural scripts for a good death in Japan and the United States: Similarities and differences. Social Science & Medicine 58, 913–928.CrossRefGoogle ScholarPubMed
MacArtney, JI, Broom, A, Kirby, E, et al. (2017) The liminal and the parallax: Living and dying at the end of life. Qualitative Health Research 27, 623–633.CrossRefGoogle ScholarPubMed
MacArtney, JI, Broom, A, Kirby, E, et al. (2016) Locating care at the end of life: Burden, vulnerability, and the practical accomplishment of dying. Sociology of Health & Illness 38, 479–492.CrossRefGoogle ScholarPubMed
MacArtney, JI, Broom, A, Kirby, E, et al. (2015) On resilience and acceptance in the transition to palliative care at the end of life. Health 19, 263–279.CrossRefGoogle ScholarPubMed
Miyaji, NT (1993) The power of compassion: Truth-telling among American doctors in the care of dying patients. Social Science & Medicine, 36, 249–264.CrossRefGoogle ScholarPubMed
McNamara, B (2004) Good enough death: Autonomy and choice in Australian palliative care. Social Science & Medicine 58, 929–938.CrossRefGoogle ScholarPubMed
Neto, I, Marques, A, Gonçalves, E, et al. (2010) Palliative care development is well under way in Portugal. European Journal of Palliative Care 17, 278–281.Google Scholar
Observatório Português dos Sistemas de Saúde (OPSS) (2017) Relatório de Primavera 2017: Viver em tempos incertos. Sustentabilidade e equidade na saúde. Lisboa: Observatório Português dos Sistemas de Saúde.Google Scholar
Seale, C (1995) Heroic death. Sociology 29, 597–613.CrossRefGoogle Scholar
Seale, C (1998) Constructing Death: the Sociology of Dying and Bereavement. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Strauss, A and Corbin, J (1998) Basics of Qualitative Research: Grounded Theory Procedures and Technique. London: Sage.Google Scholar
Tavora, I (2012) The southern European social model: Familialism and the high rates of female employment in Portugal. Journal of European Social Policy 22, 63–76.CrossRefGoogle Scholar