LIVING WITH LIFE-LIMITING ILLNESS: EXPLORING THE NARRATIVES OF PATIENTS WITH ADVANCED LUNG CANCER

Audrey Roulston, Gavin Davidson, W George Kernohan, Kevin Brazil

Research output: Contribution to journalArticle

Abstract

Lung cancer is common in males as well as females and is one of the most common causes of cancer related deaths worldwide. To gain an in-depth understanding of the ‘pedagogy of suffering’ (Frank, 1995: 145), the lived experiences of 12 adult patients in Northern Ireland diagnosed with advanced lung cancer were captured during two qualitative interviews with each patient (one month apart), which were audio-recorded. This article outlines analysis which used Frank’s (1995) narrative structures of restitution, chaos and quest, to provide rich insights into how patients narrated their ‘suffering’ over time. Findings revealed frustration and loss of faith in medical physicians due to a delayed diagnosis; resignation regarding treatment options and outcomes; externalisation of a disease that society fears, curbs life expectancy and causes biographical disruption; and powerlessness underpinned by a heroic return to put affairs in order, encourage others and share hopes for the future. In an era of health and social work practitioners experiencing increasing bureaucracy and caseloads, these findings highlight the importance of prioritising the psychosocial needs of patients, supporting patients with the emotional and practical challenges of living with a life-limiting illness, and of skilful practitioners promoting peaceful closure in end of life care.
LanguageEnglish
Pages1-18
JournalBritish Journal of Social Work
Volume47
Issue number8
Early online date8 Jan 2018
DOIs
Publication statusE-pub ahead of print - 8 Jan 2018

Fingerprint

Lung Neoplasms
cancer
illness
narrative
resignation
cause
chaos
life expectancy
frustration
qualitative interview
Hope
bureaucracy
faith
social work
Northern Ireland
physician
Frustration
Terminal Care
anxiety
Delayed Diagnosis

Keywords

  • Lung Cancer

Cite this

@article{11e3a6c909424ef8b29ad0d9e965442e,
title = "LIVING WITH LIFE-LIMITING ILLNESS: EXPLORING THE NARRATIVES OF PATIENTS WITH ADVANCED LUNG CANCER",
abstract = "Lung cancer is common in males as well as females and is one of the most common causes of cancer related deaths worldwide. To gain an in-depth understanding of the ‘pedagogy of suffering’ (Frank, 1995: 145), the lived experiences of 12 adult patients in Northern Ireland diagnosed with advanced lung cancer were captured during two qualitative interviews with each patient (one month apart), which were audio-recorded. This article outlines analysis which used Frank’s (1995) narrative structures of restitution, chaos and quest, to provide rich insights into how patients narrated their ‘suffering’ over time. Findings revealed frustration and loss of faith in medical physicians due to a delayed diagnosis; resignation regarding treatment options and outcomes; externalisation of a disease that society fears, curbs life expectancy and causes biographical disruption; and powerlessness underpinned by a heroic return to put affairs in order, encourage others and share hopes for the future. In an era of health and social work practitioners experiencing increasing bureaucracy and caseloads, these findings highlight the importance of prioritising the psychosocial needs of patients, supporting patients with the emotional and practical challenges of living with a life-limiting illness, and of skilful practitioners promoting peaceful closure in end of life care.",
keywords = "Lung Cancer",
author = "Audrey Roulston and Gavin Davidson and Kernohan, {W George} and Kevin Brazil",
note = "Reference text: Addington-Hall, J., Bruera, E., Higginson, I. J. and Payne, S. (2007) Research Methods in Palliative Care, Oxford, Oxford University Press. Baker, M. (2006) ‘Facilitating forgiveness and peaceful closure: The therapeutic value of psychosocial intervention’, Journal of Social Work in End of Life and Palliative Care, 1(4), pp. 83–96. Bekker, H. L. (2009) ‘Using decision-making theory to inform clinical practice’, in Edwards, A. and Elwyn, G. (eds), Shared Decision-Making in Health Care, 2nd edn, Oxford, Oxford University Press, pp. 45–51. Briggs, L. (2003) ‘Shifting the focus of advance care planning: Using an in-depth interview to build and strengthen relationships’, Journal of Palliative Medicine, 7, pp. 341–9. Bury, M. (1982) ‘Chronic illness as biographical disruption’, Sociology of Health and Illness, 4(2), pp. 167–82. Campbell, J. (1972) The Hero with a Thousand Faces, Princeton, Princeton University Press. Cancer Research UK (2015) Lung Cancer Mortality by sex and region, http://www. cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ lung-cancer/mortality (accessed 2 January 2018). Cassell, E. J. (2004) The Nature of Suffering and the Goals of Medicine, 2nd edn, Oxford, Oxford University Press. Department of Health (2008) End of Life Care Strategy—Promoting High Quality Care for all Adults at the End of Life, London, Department of Health, available online at https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-highquality-care-for-adults-at-the-end-of-their-life (accessed 2 January 2018) Deschepper, R., Bernheim, J. L., Stichele, R. V., van den Block, L., Michiels, E., van der Kelen, G., Mortier, F. and Deliens, L. (2007) ‘Truth-telling at the end of life: A pilot study on the perspective of patients and professional caregivers’, Patient Education and Counseling, 71, pp. 52–6. Desharnais, S., Carter, R. E., Hennessy, W., Kurent, J. E. and Carter, C. (2007) ‘Lack of concordance between physician and patient: Reports on end of life care discussions’, Journal of Palliative Medicine, 10(3), pp. 728–40. Durkheim, E. (1961) The Elementary Forms of the Religious Life, New York, Collier-Macmillan. Eatough, V. and Smith, J. A. (2008) ‘Interpretative phenomenological analysis’, in Willig, C. and Stainton-Rogers, W. (eds), The Sage Handbook of Qualitative Research in Psychology, Part I, London, Sage Publications. Elwyn, G., Edwards, A., Kineersley, P. and Grol, R. (2000) ‘Shared decision making and the concept of equipoise: The competences involving patients in healthcare choices’, British Journal of General Practice, 50, pp. 892–7. Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics, Chicago, University of Chicago Press. Glaser, B. G. and Strauss, A. L. (1965) ‘Closed awareness’ in Glaser, B. G. and Strauss, A. L. (eds), Awareness of Dying, Chicago, Aldine Publishing Company, pp. 29–46. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs, NJ, Penguin Books. International Federation of Social Work (IFSW) (2014) ‘Global definition of social work’, agreed at the IASSW General Assembly, available online at http://ifsw.org/ get-involved/global-definition-of-social-work/ (accessed 19 December 2017). Kleinman, A. (1989) The Illness Narratives: Suffering, Healing and the Human Condition, New York, Basic Books. Llewellyn-Thomas, H. A. (1995) ‘Patients’ health-care decision making: A framework for descriptive and experimental investigations’, Medical Decision Making, 5(2), pp. 101–6. Marks, D. F., Murray, M., Evans, B. and Estacio, E. V. (2011) Health Psychology: Theory, Research and Practice, 3rd edn, London, UK, Sage. Martin, D. K., Emmanuel, L. L. and Singer, P. A. (2000) ‘Planning for the end of life’, Lancet, 356, pp. 1672–6. McIlfatrick, S., Noble, H., McCorry, N. K., Roulston, A., Hasson, F., McLaughlin, D., Johnston, G., Rutherford, L., Payne, C., Kernohan, G., Kelly, S. and Craig, A. (2014) ‘Exploring public awareness and perceptions of palliative care: A qualitative study’, Palliative Medicine, 28(3), pp. 273–80. Northern Ireland Cancer Registry (NICR) (2015) Lung Cancer: Cancer in Northern Ireland 2013, available online at http://www.qub.ac.uk/research-centres/nicr/ FileStore/PDF/FactSheets/Filetoupload,531396,en.pdf (accessed 19 December 2017). Northern Ireland Cancer Registry (NICR) (2016) Cancer Statistics by Health Trust, available online at http://www.qub.ac.uk/research-centres/nicr/CancerInformation/ official-statistics/ByGeography/HealthTrust/ (accessed 19 December 2017). O’Grady, E., Dempsey, L. and Fabby, C. (2012) ‘Anger: A common form of psychological distress among patients at the end of life’, International Journal of Palliative Nursing, 18(12), pp. 592–6. Rabinach, A. (1992) The Human Motor: Energy, Fatigue and Origins of Modernity, Berkeley, CA, University of California Press. Ramondetta, L. M., Tortolero-Luna, G., Bodurka, D. C., Sills, D., Basenengquist, K., Gano, J. and Levenback, C. (2004) ‘Approaches for end of life care in the field of gynaecologic oncology: An exploratory study’, International Journal of Gynaecological Cancer, 14, pp. 580–8. Rutherford, L., McAuley, J. and Fitzsimons, D. (2008). Patients’ and Carers’ Experiences of Living with Lung Cancer, report for Macmillan Cancer Support, Belfast, MacMillan and Belfast Health and Social Care Trust. Siminoff, L. A., Rose, J. H., Zhang, A. and Zyzanski, J. (2006) ‘Measuring discord in treatment decision-making: Progress toward development of a cancer communication and decision-making assessment tool’, Psychooncology, 15, pp. 528–40. Smith, J. A., Flowers, P. and Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research, London, Sage Publications. Sontag, S. (1978) Illness as a Metaphor, New York, Farrar, Strauss and Giroux. Wahidin, A. (2004) Older Women in the Criminal Justice System: Running Out of Time, London/Philadelphia, Jessica Kingsley Publishers. Willard, C. and Luker, K. (2006) ‘Challenges to end of life care in the acute hospital setting’, Palliative Medicine, 20, pp. 611–15. Winkler, E. C., Hiddenmann, W. and Marckmann, G. (2013) ‘Evaluating a patient’s request for life-prolonging treatment: An ethical framework’, Journal of Medical Ethics, 38, pp. 647–51.",
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LIVING WITH LIFE-LIMITING ILLNESS: EXPLORING THE NARRATIVES OF PATIENTS WITH ADVANCED LUNG CANCER. / Roulston, Audrey; Davidson, Gavin; Kernohan, W George; Brazil, Kevin.

In: British Journal of Social Work, Vol. 47, No. 8, 08.01.2018, p. 1-18.

Research output: Contribution to journalArticle

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T1 - LIVING WITH LIFE-LIMITING ILLNESS: EXPLORING THE NARRATIVES OF PATIENTS WITH ADVANCED LUNG CANCER

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AU - Davidson, Gavin

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N1 - Reference text: Addington-Hall, J., Bruera, E., Higginson, I. J. and Payne, S. (2007) Research Methods in Palliative Care, Oxford, Oxford University Press. Baker, M. (2006) ‘Facilitating forgiveness and peaceful closure: The therapeutic value of psychosocial intervention’, Journal of Social Work in End of Life and Palliative Care, 1(4), pp. 83–96. Bekker, H. L. (2009) ‘Using decision-making theory to inform clinical practice’, in Edwards, A. and Elwyn, G. (eds), Shared Decision-Making in Health Care, 2nd edn, Oxford, Oxford University Press, pp. 45–51. Briggs, L. (2003) ‘Shifting the focus of advance care planning: Using an in-depth interview to build and strengthen relationships’, Journal of Palliative Medicine, 7, pp. 341–9. Bury, M. (1982) ‘Chronic illness as biographical disruption’, Sociology of Health and Illness, 4(2), pp. 167–82. Campbell, J. (1972) The Hero with a Thousand Faces, Princeton, Princeton University Press. Cancer Research UK (2015) Lung Cancer Mortality by sex and region, http://www. cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ lung-cancer/mortality (accessed 2 January 2018). Cassell, E. J. (2004) The Nature of Suffering and the Goals of Medicine, 2nd edn, Oxford, Oxford University Press. Department of Health (2008) End of Life Care Strategy—Promoting High Quality Care for all Adults at the End of Life, London, Department of Health, available online at https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-highquality-care-for-adults-at-the-end-of-their-life (accessed 2 January 2018) Deschepper, R., Bernheim, J. L., Stichele, R. V., van den Block, L., Michiels, E., van der Kelen, G., Mortier, F. and Deliens, L. (2007) ‘Truth-telling at the end of life: A pilot study on the perspective of patients and professional caregivers’, Patient Education and Counseling, 71, pp. 52–6. Desharnais, S., Carter, R. E., Hennessy, W., Kurent, J. E. and Carter, C. (2007) ‘Lack of concordance between physician and patient: Reports on end of life care discussions’, Journal of Palliative Medicine, 10(3), pp. 728–40. Durkheim, E. (1961) The Elementary Forms of the Religious Life, New York, Collier-Macmillan. Eatough, V. and Smith, J. A. (2008) ‘Interpretative phenomenological analysis’, in Willig, C. and Stainton-Rogers, W. (eds), The Sage Handbook of Qualitative Research in Psychology, Part I, London, Sage Publications. Elwyn, G., Edwards, A., Kineersley, P. and Grol, R. (2000) ‘Shared decision making and the concept of equipoise: The competences involving patients in healthcare choices’, British Journal of General Practice, 50, pp. 892–7. Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics, Chicago, University of Chicago Press. Glaser, B. G. and Strauss, A. L. (1965) ‘Closed awareness’ in Glaser, B. G. and Strauss, A. L. (eds), Awareness of Dying, Chicago, Aldine Publishing Company, pp. 29–46. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs, NJ, Penguin Books. International Federation of Social Work (IFSW) (2014) ‘Global definition of social work’, agreed at the IASSW General Assembly, available online at http://ifsw.org/ get-involved/global-definition-of-social-work/ (accessed 19 December 2017). Kleinman, A. (1989) The Illness Narratives: Suffering, Healing and the Human Condition, New York, Basic Books. Llewellyn-Thomas, H. A. (1995) ‘Patients’ health-care decision making: A framework for descriptive and experimental investigations’, Medical Decision Making, 5(2), pp. 101–6. Marks, D. F., Murray, M., Evans, B. and Estacio, E. V. (2011) Health Psychology: Theory, Research and Practice, 3rd edn, London, UK, Sage. Martin, D. K., Emmanuel, L. L. and Singer, P. A. (2000) ‘Planning for the end of life’, Lancet, 356, pp. 1672–6. McIlfatrick, S., Noble, H., McCorry, N. K., Roulston, A., Hasson, F., McLaughlin, D., Johnston, G., Rutherford, L., Payne, C., Kernohan, G., Kelly, S. and Craig, A. (2014) ‘Exploring public awareness and perceptions of palliative care: A qualitative study’, Palliative Medicine, 28(3), pp. 273–80. Northern Ireland Cancer Registry (NICR) (2015) Lung Cancer: Cancer in Northern Ireland 2013, available online at http://www.qub.ac.uk/research-centres/nicr/ FileStore/PDF/FactSheets/Filetoupload,531396,en.pdf (accessed 19 December 2017). Northern Ireland Cancer Registry (NICR) (2016) Cancer Statistics by Health Trust, available online at http://www.qub.ac.uk/research-centres/nicr/CancerInformation/ official-statistics/ByGeography/HealthTrust/ (accessed 19 December 2017). O’Grady, E., Dempsey, L. and Fabby, C. (2012) ‘Anger: A common form of psychological distress among patients at the end of life’, International Journal of Palliative Nursing, 18(12), pp. 592–6. Rabinach, A. (1992) The Human Motor: Energy, Fatigue and Origins of Modernity, Berkeley, CA, University of California Press. Ramondetta, L. M., Tortolero-Luna, G., Bodurka, D. C., Sills, D., Basenengquist, K., Gano, J. and Levenback, C. (2004) ‘Approaches for end of life care in the field of gynaecologic oncology: An exploratory study’, International Journal of Gynaecological Cancer, 14, pp. 580–8. Rutherford, L., McAuley, J. and Fitzsimons, D. (2008). Patients’ and Carers’ Experiences of Living with Lung Cancer, report for Macmillan Cancer Support, Belfast, MacMillan and Belfast Health and Social Care Trust. Siminoff, L. A., Rose, J. H., Zhang, A. and Zyzanski, J. (2006) ‘Measuring discord in treatment decision-making: Progress toward development of a cancer communication and decision-making assessment tool’, Psychooncology, 15, pp. 528–40. Smith, J. A., Flowers, P. and Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research, London, Sage Publications. Sontag, S. (1978) Illness as a Metaphor, New York, Farrar, Strauss and Giroux. Wahidin, A. (2004) Older Women in the Criminal Justice System: Running Out of Time, London/Philadelphia, Jessica Kingsley Publishers. Willard, C. and Luker, K. (2006) ‘Challenges to end of life care in the acute hospital setting’, Palliative Medicine, 20, pp. 611–15. Winkler, E. C., Hiddenmann, W. and Marckmann, G. (2013) ‘Evaluating a patient’s request for life-prolonging treatment: An ethical framework’, Journal of Medical Ethics, 38, pp. 647–51.

PY - 2018/1/8

Y1 - 2018/1/8

N2 - Lung cancer is common in males as well as females and is one of the most common causes of cancer related deaths worldwide. To gain an in-depth understanding of the ‘pedagogy of suffering’ (Frank, 1995: 145), the lived experiences of 12 adult patients in Northern Ireland diagnosed with advanced lung cancer were captured during two qualitative interviews with each patient (one month apart), which were audio-recorded. This article outlines analysis which used Frank’s (1995) narrative structures of restitution, chaos and quest, to provide rich insights into how patients narrated their ‘suffering’ over time. Findings revealed frustration and loss of faith in medical physicians due to a delayed diagnosis; resignation regarding treatment options and outcomes; externalisation of a disease that society fears, curbs life expectancy and causes biographical disruption; and powerlessness underpinned by a heroic return to put affairs in order, encourage others and share hopes for the future. In an era of health and social work practitioners experiencing increasing bureaucracy and caseloads, these findings highlight the importance of prioritising the psychosocial needs of patients, supporting patients with the emotional and practical challenges of living with a life-limiting illness, and of skilful practitioners promoting peaceful closure in end of life care.

AB - Lung cancer is common in males as well as females and is one of the most common causes of cancer related deaths worldwide. To gain an in-depth understanding of the ‘pedagogy of suffering’ (Frank, 1995: 145), the lived experiences of 12 adult patients in Northern Ireland diagnosed with advanced lung cancer were captured during two qualitative interviews with each patient (one month apart), which were audio-recorded. This article outlines analysis which used Frank’s (1995) narrative structures of restitution, chaos and quest, to provide rich insights into how patients narrated their ‘suffering’ over time. Findings revealed frustration and loss of faith in medical physicians due to a delayed diagnosis; resignation regarding treatment options and outcomes; externalisation of a disease that society fears, curbs life expectancy and causes biographical disruption; and powerlessness underpinned by a heroic return to put affairs in order, encourage others and share hopes for the future. In an era of health and social work practitioners experiencing increasing bureaucracy and caseloads, these findings highlight the importance of prioritising the psychosocial needs of patients, supporting patients with the emotional and practical challenges of living with a life-limiting illness, and of skilful practitioners promoting peaceful closure in end of life care.

KW - Lung Cancer

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DO - 10.1093/bjsw/bcx147

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