Technology And Natural Death: A Study Of Older People
L218 25 2046
University Of Sheffield
Dr JE Seymour, Dr CM Gott, Professor D Clark,Professor SH Ahmedzai & Mr G Bellamy
February 2001- January 2003
Website
Abstract
This qualitative study will build on empirical evidence that older people fear euthanasia 'by the back door', while also worrying about practices which may prolong dying. Older people's beliefs and risk assessments will be examined regarding the use of innovative health technologies in end-of-life care and these will be related to their ideas about natural death. 'Life prolonging' and 'basic care' technologies applied in home, hospital or institutional settings, and including techniques of pain relief, sedation, artificial hydration and resuscitation, will be the focus of this investigation. 30 men and 30 women aged 65 and over will be systematically selected from the Sheffield Health Authority Age and Sex Register. The sample will be drawn from three contrasting electoral wards to reflect the broad socio-demographic characteristics of older people. Respondents will be interviewed using an approach developed in consultation with focus groups drawn from voluntary groups representing older people. Focus group participants will aid the researchers in assessing how older people are likely to prioritise issues regarding innovative health technologies at the end of life, in developing a sensitive vignette scenario, and in forming a steering committee to aid data analysis and dissemination. The vignette will facilitate respondents' reflection on the role and meaning of innovative health technologies during dying. The extent to which preferences for end of life technologies and ideas about natural death relate to respondents' quality of life, health and disability status will also be explored. The project will inform debates about end of life decision making by focusing on the cohorts closest to death, who have been characterised as the disadvantaged dying. The study outcomes will form the basis for other studies in this area; the further development of guidelines for clinical practice during end of life care; and information packages for older people and their carers.
Summary
Background
'Natural death' is an everyday phrase that embodies concepts of the manner,
timing and place of dying. However, we have little understanding of the
ways in which the availability of new technologies used to manage care at
the end of life can influence our ideas about natural death. Furthermore,
there is a developing awareness that technological changes are contributing
to new patterns of social exclusion during dying. In particular, concerns
have been raised that older people may not have the resources or be given
the opportunity to influence the style or setting of care they receive at
the end of life. Fears of euthanasia 'by the back door' and, alternatively,
concerns about practices that may prolong dying, have been highlighted in
the media and elsewhere.
This study will improve our understanding of these issues by exploring older
people's knowledge, beliefs and risk perceptions regarding the use of innovative
health technologies during care at the end of life.
Research Design
We are studying an area where little research has been previously conducted.
It is also a subject of great ethical sensitivity. For these reasons a qualitative
study is planned in which older people play an important role in the whole
research process. The project will be conducted in Sheffield in two phases.
Phase 1: Focus groups with older people from voluntary organisations.
Participants will be asked to comment on key themes from the literature
and to help in the development of sensitively worded vignette scenarios
introducing key options associated with 'life prolonging' and 'basic care'
approaches to end-of-life care.
Phase 2: Interviews with 60 older people living in three contrasting localities
The vignette scenarios developed in phase 1 will be used to aid interviews
in which respondents reflect on the role and meaning of innovative health
technologies during dying. It is anticipated that this approach will elicit
comparable responses for group analysis, while at the same time allowing
for the expression of individual views and experiences.
Policy and Academic Implications
This study will bring together research strands in the fields of gerontology and end of life ("palliative") care that have hitherto been pursued separately. Specific implications for policy making and future research include:
- The clarification of older peoples' perceptions of the relationship between the use of technology and 'natural death' will add to the knowledge base informing end of life decision-making.
- The illumination of emergent themes in sociological theories of death, dying and the body.
- The exploration of the extent to which older people's understandings correspond with currently available guidance about end of life care.
- Recommendations of how appropriately worded information can be designed to enable older people to play a greater part in end of life decisions.
- Risk and innovative technologies: by illuminating risk perceptions and meanings associated with technological intervention during dying.
- Identity and the body: by examining conceptions of bodily integrity and individual autonomy.
- Social inclusion and exclusion: by examining the contribution of knowledge and other factors to older people's potential ability to influence care giving during dying.
Contacts
Outputs
BSA Medical Sociology Group Conference 2001
Author
Dr. Jane Seymour, Sheffield Palliative Care Studies Group, The University
of Sheffield, Trent Palliative Care Centre, Little Common Lane, Abbey Lane,
Sheffield, S11 9NE. Tel: 0114 2620174 ext 31 Fax: 0114 236 2916 Email: j.e.seymour@sheffield.ac.uk
Other authors
Dr Merryn Gott, Professor David Clark, Professor Sam H. Ahmedzai, Mr Gary
Bellamy.
Presentation: Paper
EXPLORING DEATH AND DYING WITH OLDER PEOPLE: METHODOLOGICAL ISSUES
Background
We have little understanding of how new technologies used to manage care at the end of life influence ideas about natural death. However there is a developing awareness that technological changes are contributing to new patterns of social exclusion during dying. In particular, concerns have been raised that older people may not have the resources or be given the opportunity to influence the style or setting of care they receive. Fears of euthanasia 'by the back door' and concerns about practices that may prolong dying have been highlighted in the media and elsewhere.
Study design
This two-phase study, funded by the ESRC/MRC Innovative Health Technologies Programme, explores older people's knowledge and beliefs about the use of new health technologies during end of life care. In phase one, now nearing completion, focus groups have been held involving older people who belong to voluntary groups in Sheffield, UK. Participants have discussed key themes from the literature and helped to test 2 vignettes. These involve a cancer and non-cancer scenario. Phase two will involve interviewing a systematically selected sample of older people living in 3 contrasting localities within Sheffield using these vignettes.
Methodological issues
One of the barriers to conducting research in this area has been the perceived sensitivity of discussing death and dying with older people. This presentation will explore methodological challenges related to this in the first phase of the project, focusing on:
- Recruitment
- Informed consent
- Managing discussions of potentially distressing subjects
- Methodological conclusions drawn
British Society of Gerontology 2001
Author
Dr. Jane Seymour, Sheffield Palliative Care Studies Group, The University
of Sheffield, Trent Palliative Care Centre, Little Common Lane, Abbey Lane,
Sheffield, S11 9NE. Tel: 0114 2620174 ext 31 Fax: 0114 236 2916 Email: j.e.seymour@sheffield.ac.uk
Other authors
Dr Merryn Gott, Professor David Clark, Professor Sam H. Ahmedzai, Mr Gary
Bellamy.
Presentation: Paper
EXPLORING DEATH AND DYING WITH OLDER PEOPLE: METHODOLOGICAL ISSUES
Background
Technological changes in end of life care management are contributing to new patterns of social exclusion during dying. In particular, concerns have been raised that older people may not have the resources or be given the opportunity to influence the style or setting of care they receive as they face death. Fears of euthanasia 'by the back door' and, alternatively, concerns about practices that may prolong dying, have been highlighted in the media and elsewhere.
Study design
This two-phase study, funded by the ESRC/MRC Innovative Health Technologies Programme, explores older people's knowledge and beliefs regarding the use of innovative health technologies during care at the end of life. In phase one, now nearing completion, focus groups have been held involving older people who belong to voluntary groups in Sheffield, UK. Participants have discussed key themes from the literature and helped to develop and test 2 vignette scenarios. These describe decisions faced by people as they approach death, and involve a cancer and non-cancer scenario. Phase two will involve interviewing a systematically selected sample of older people living in 3 contrasting localities within Sheffield using these vignette scenarios.
Methodological issues
One of the barriers to conducting research in this area has been the perceived sensitivity of discussing death and dying with older people. This presentation will explore methodological challenges related to this in the first phase of the project, focusing on:
- Recruitment
- Informed consent
- Managing discussions of potentially distressing subjects
- Methodological conclusions drawn
Conference Papers
Seymour, JE; Gott, M; Clark, D; Ahmedzai, S; Bellamy, G. (Oral) Technology and Natural Death: A Study of Older People. Trans-Pennine Palliative Care Research Network. 2001, At Ann's Hospice, Manchester.
Seymour, JE; Gott, M; Clark, D; Ahmedzai, S. (Oral) Tehcnology and Natural Death: A Study of Older People. Sociology of Cancer Study Group. st Ann. Conf.: What is the Sociology of Cancer, 2001, University of Leicester.
Seymour, JE; Gott, M; Clark, D; Ahmedzai, S; Bellamy, G. (Oral) Exploring Death and Dying with Older People: Methodological Issues. BSA Medical Sociology Group. 33rd Annual Conference, 2001, University of York.
Seymour, JE; et al, . (Poster and Computer display) Technology and Natural Death: A Study of Older People. EU Association for Palliative Care. 2001, Palermo, Italy.
Seymour, JE; et al, . (Poster) Technology and Natural Death: A Study of Older People. Palliative Care Research Forum. 2001, Royal College of Physicians, London.
Seymour, JE; Gott, M; Clark, D; Ahmedzai, S; Bellamy, G. (Oral) Exploring Death and Dying with Older People: Methodological Issues. British Society of Gerontology Conference. 2001, University of Stirling.
Seymour, JE; Gott, M; Clark, D; Ahmedzai, S; Bellamy, G. (Oral) Technology and Natural Death: A Study of Older People. International Association of Gerontology. XVIIth World Congress, 2001, Vancouver.
Seymour, JE; et al, Title tbc. Between Technology and Humanity. 2002, University of Leuven and Caritas Flanders. Conference Papers. Leuven University Press, 2002.
Seymour, J. (Oral) Older People’s Views OF End of Life Care. Palliative Care for Older People. 2001, Royal College of Pathologists.
News
24 May 2005
Jane Seymour is made Sue Ryder Professor of Palliative and End of Life
Care Studies, University of Nottingham
http://www.nottingham.ac.uk/nursing/research/centres/sueryder.php
There is also a related peice in the Times 'Will they let you die with
dignity?'
http://www.timesonline.co.uk/article/0,,7-1624464,00.html
15 August 2003
Jane Seymour and team are awarded funds for a new project by the Health
Foundation
This 18 month project (starting in 2004) involves working with community
groups representing older people in Sheffield to develop and pilot a widely
applicable peer education service to enable older people to obtain information
about treatment and care options at the end of life and to exchange expertise
about approaches to discussing such issues with their families and health
professionals. The project is based on principles of advance care planning,
defined as a process of discussion and review about preferences and values
relating to end of life care. Advance care planning has been shown in the
USA to have the potential to help people to plan for their end of life care
and to assist in the prevention of unplanned and 'crisis' admissions to
hospital during the last year of life. All previous UK initiatives to improve
end of life care focus on the communication skills and knowledge of health
care professionals rather than those of potential care recipients. The project
is a new development which builds on a completed study funded by the Economic
and Social Research Council about older people's attitudes to end of life
care in which strong links were made with the targeted groups. The project
links to another project funded by The PPP Foundation, exploring the views
of older Chinese people about cancer and end of life care.
30 March 2001
Jane Seymour and her group have just had an abstract accepted for a poster describing their project for the Palliative Care Research Forum Annual One Day Scientific Meeting on 7th June 2001. Venue: The Royal College of Physicians, London
Also, next week, colleagues in their department will be going to Palermo, Italy for the European Association for Palliative Care Conference (April 1st-5th). They will be taking information about Jane's study and the programme web site (in paper form and as a computer presentation) for delegates. A summary of the project is on their web site now: www.sheffield-palliative.org.uk.
Finally, they have just carried out their first focus group and have 10,000 words of data!