Skip to main content
Top
Published in: BMC Palliative Care 1/2014

Open Access 01-12-2014 | Research article

Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study

Authors: Magdalena Karlsson, Febe Friberg, Catarina Wallengren, Joakim Öhlén

Published in: BMC Palliative Care | Issue 1/2014

Login to get access

Abstract

Background

Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.

Methods

This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.

Results

This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.

Conclusions

People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
Literature
1.
go back to reference Penrod J: Living with uncertainty: concept advancement. J Adv Nurs. 2007, 57 (6): 658-667. 10.1111/j.1365-2648.2006.04008.x.CrossRefPubMed Penrod J: Living with uncertainty: concept advancement. J Adv Nurs. 2007, 57 (6): 658-667. 10.1111/j.1365-2648.2006.04008.x.CrossRefPubMed
2.
go back to reference Galloway SC, Graydon JE: Uncertainty, symptom distress and information needs aftersurgery for cancer of the colon. Cancer Nurs. 1996, 19 (2): 112-117. 10.1097/00002820-199604000-00005.CrossRefPubMed Galloway SC, Graydon JE: Uncertainty, symptom distress and information needs aftersurgery for cancer of the colon. Cancer Nurs. 1996, 19 (2): 112-117. 10.1097/00002820-199604000-00005.CrossRefPubMed
3.
go back to reference Norlyk A, Harder I: After colonic surgery: the lived experience of participating in a fast-track programme. Int J Qual Stud Health Well-being. 2009, 1 (4): 170-180.CrossRef Norlyk A, Harder I: After colonic surgery: the lived experience of participating in a fast-track programme. Int J Qual Stud Health Well-being. 2009, 1 (4): 170-180.CrossRef
4.
go back to reference Norlyk A, Harder I: Recovering at home: participating in a fast-colon cancer surgery programme. Nurs Inq. 2011, 18 (2): 165-173. 10.1111/j.1440-1800.2011.00519.x.CrossRefPubMed Norlyk A, Harder I: Recovering at home: participating in a fast-colon cancer surgery programme. Nurs Inq. 2011, 18 (2): 165-173. 10.1111/j.1440-1800.2011.00519.x.CrossRefPubMed
5.
go back to reference Corbeil A, Laizner AM, Hunter P, Hutchinson N: The experience of uncertainty in young adults with cancer. Cancer Nurs. 2009, 32 (5): E17-E27. 10.1097/NCC.0b013e3181a5690d.CrossRefPubMed Corbeil A, Laizner AM, Hunter P, Hutchinson N: The experience of uncertainty in young adults with cancer. Cancer Nurs. 2009, 32 (5): E17-E27. 10.1097/NCC.0b013e3181a5690d.CrossRefPubMed
6.
go back to reference McKechnie R, Mcleod R, Keeling S: Facing uncertainty: the lived experience of palliative care. Palliate support care. 2007, 5 (4): 367-376. McKechnie R, Mcleod R, Keeling S: Facing uncertainty: the lived experience of palliative care. Palliate support care. 2007, 5 (4): 367-376.
7.
go back to reference Hubbard G, Kidd L, Kearney N: Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health. 2010, 14 (2): 131-146.PubMed Hubbard G, Kidd L, Kearney N: Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health. 2010, 14 (2): 131-146.PubMed
8.
go back to reference Casell E: The Nature of Suffering and the Goals of Medicine. 1991, New York: Oxford University Press Casell E: The Nature of Suffering and the Goals of Medicine. 1991, New York: Oxford University Press
9.
go back to reference Öhlen J: Practical wisdom – competence required to enable alleiation of suffering in palliative care. J of Palliative care. 2002, 18 (4): 294-300. Öhlen J: Practical wisdom – competence required to enable alleiation of suffering in palliative care. J of Palliative care. 2002, 18 (4): 294-300.
10.
go back to reference Heidegger M: Varat och tiden. 2004, Göteborg: Daidalos Heidegger M: Varat och tiden. 2004, Göteborg: Daidalos
11.
go back to reference Merleau Ponty M: Phenomenology of Perception. 2002, London: C.Smith, Trans. Routledge, 1962/2002 Merleau Ponty M: Phenomenology of Perception. 2002, London: C.Smith, Trans. Routledge, 1962/2002
12.
go back to reference Berndtsson I, Claesson S, Friberg F, Öhlen J: Issues about thinking phenomenologically while doing phenomenology. J Phenomenol Psychol. 2007, 38 (2): 256-277. 10.1163/156916207X234293.CrossRef Berndtsson I, Claesson S, Friberg F, Öhlen J: Issues about thinking phenomenologically while doing phenomenology. J Phenomenol Psychol. 2007, 38 (2): 256-277. 10.1163/156916207X234293.CrossRef
13.
go back to reference Landmark BT, Wahl A: Living with newly diagnosed breast cancer: a qualitative study of 10 women with newly diagnosed breast cancer. J Adv Nurs. 2002, 40 (1): 112-121. 10.1046/j.1365-2648.2002.02346.x.CrossRefPubMed Landmark BT, Wahl A: Living with newly diagnosed breast cancer: a qualitative study of 10 women with newly diagnosed breast cancer. J Adv Nurs. 2002, 40 (1): 112-121. 10.1046/j.1365-2648.2002.02346.x.CrossRefPubMed
14.
go back to reference Westman B, Bergenmar M, Andersson L: Life, illness and death—existential reflections of a Swedish sample of patients who have undergone curative treatment for breast or prostatic cancer. Eur J Oncol Nurs. 2006, 10 (3): 169-176. 10.1016/j.ejon.2005.06.002.CrossRefPubMed Westman B, Bergenmar M, Andersson L: Life, illness and death—existential reflections of a Swedish sample of patients who have undergone curative treatment for breast or prostatic cancer. Eur J Oncol Nurs. 2006, 10 (3): 169-176. 10.1016/j.ejon.2005.06.002.CrossRefPubMed
15.
go back to reference Källerwald S: In the Shadow of a Threatened Existence – On the Unnecessary Battle between Biology and Existence in the Care of Malignant Lymphoma Patients. PhD thesis. 2007, Växjö University: Institutionen för vårdvetenskap och socialt arbete Källerwald S: In the Shadow of a Threatened Existence – On the Unnecessary Battle between Biology and Existence in the Care of Malignant Lymphoma Patients. PhD thesis. 2007, Växjö University: Institutionen för vårdvetenskap och socialt arbete
16.
go back to reference Winterling J, Wasteson E, Glimelius B, Sjödén P-O, Nordin K: Substantial changes in life. Perceptions in patients with newly diagnosed advanced cancer and their spouses. Cancer Nurs. 2004, 27 (5): 381-388.CrossRefPubMed Winterling J, Wasteson E, Glimelius B, Sjödén P-O, Nordin K: Substantial changes in life. Perceptions in patients with newly diagnosed advanced cancer and their spouses. Cancer Nurs. 2004, 27 (5): 381-388.CrossRefPubMed
17.
go back to reference Little M, Jordens CF, Paul K, Montgomery K, Philipson B: Liminality: a major category of the experience of cancer illness. Soc Sci Med. 1998, 47 (10): 1485-1494. 10.1016/S0277-9536(98)00248-2.CrossRefPubMed Little M, Jordens CF, Paul K, Montgomery K, Philipson B: Liminality: a major category of the experience of cancer illness. Soc Sci Med. 1998, 47 (10): 1485-1494. 10.1016/S0277-9536(98)00248-2.CrossRefPubMed
18.
go back to reference Kleem P, Miller MA, Fernsler J: Demands of illness in people treated for colorectal cancer. Oncol Nurs Forum. 2000, 27 (4): 633-639. Kleem P, Miller MA, Fernsler J: Demands of illness in people treated for colorectal cancer. Oncol Nurs Forum. 2000, 27 (4): 633-639.
19.
go back to reference Khatri S, Whiteley I, Gullick J, Wildbore C: Marking time: the temporal experience of Gastrointestinal cancer. Contemp Nurse. 2012, 41 (2): 146-159. 10.5172/conu.2012.41.2.146.CrossRefPubMed Khatri S, Whiteley I, Gullick J, Wildbore C: Marking time: the temporal experience of Gastrointestinal cancer. Contemp Nurse. 2012, 41 (2): 146-159. 10.5172/conu.2012.41.2.146.CrossRefPubMed
20.
go back to reference Moene M, Bergbom I, Skott C: Patients' existential situation prior to colorectal surgery. J Adv Nurs. 2006, 54 (2): 199-207. 10.1111/j.1365-2648.2006.03800.x.CrossRefPubMed Moene M, Bergbom I, Skott C: Patients' existential situation prior to colorectal surgery. J Adv Nurs. 2006, 54 (2): 199-207. 10.1111/j.1365-2648.2006.03800.x.CrossRefPubMed
21.
go back to reference Halldórsdóttir S, Hamrin E: Experiencing existential changes: the lived experience of having cancer. Cancer Nurs. 1996, 19 (1): 29-36. 10.1097/00002820-199602000-00004.CrossRefPubMed Halldórsdóttir S, Hamrin E: Experiencing existential changes: the lived experience of having cancer. Cancer Nurs. 1996, 19 (1): 29-36. 10.1097/00002820-199602000-00004.CrossRefPubMed
22.
go back to reference Andreassen S, Randers I, Näslund E, Stockeld D, Mattiasson A-C: Patients’ experiences of living with oesophageal cancer. J Clin Nurs. 2006, 15 (6): 685-695. 10.1111/j.1365-2702.2006.01412.x.CrossRefPubMed Andreassen S, Randers I, Näslund E, Stockeld D, Mattiasson A-C: Patients’ experiences of living with oesophageal cancer. J Clin Nurs. 2006, 15 (6): 685-695. 10.1111/j.1365-2702.2006.01412.x.CrossRefPubMed
23.
go back to reference Pascal J, Endacott R: Ethical and existential challenges associated with cancer diagnosis. J Med Ethics. 2010, 36 (59): 279-283.CrossRefPubMed Pascal J, Endacott R: Ethical and existential challenges associated with cancer diagnosis. J Med Ethics. 2010, 36 (59): 279-283.CrossRefPubMed
24.
go back to reference Sand L: Ph D thesis. Existential Challenges and Coping in Palliative Cancer Care. Experience of Patients and Family Members. 2008, Solna: Karolinska Institutet, Department for Oncology and Pathology Sand L: Ph D thesis. Existential Challenges and Coping in Palliative Cancer Care. Experience of Patients and Family Members. 2008, Solna: Karolinska Institutet, Department for Oncology and Pathology
25.
go back to reference Ferlay J, Shin H-R, Bray F, Forman D, Mathers C, Maxwell Parkin D: Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer. 2010, 127 (12): 2839-2917.CrossRef Ferlay J, Shin H-R, Bray F, Forman D, Mathers C, Maxwell Parkin D: Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer. 2010, 127 (12): 2839-2917.CrossRef
26.
go back to reference Fallowfield L: Giving sad and bad news. Lancet. 1993, 20 (8843): 476-478. 341CrossRef Fallowfield L: Giving sad and bad news. Lancet. 1993, 20 (8843): 476-478. 341CrossRef
27.
go back to reference Fallowfield L, Jenkins V: Communicating sad, bad and difficult news in medicine. Lancet. 2004, 24 (9405): 312-319. 363CrossRef Fallowfield L, Jenkins V: Communicating sad, bad and difficult news in medicine. Lancet. 2004, 24 (9405): 312-319. 363CrossRef
28.
go back to reference Öhlen J, Wallengren Gustafsson C, Friberg F: Making sense of receiving palliative treatment: its significance to palliative cancer care communication and information provision. Cancer Nurs. 2012, 36 (4): 265-273. 2012 Oct 9. [Epub ahead of print]CrossRef Öhlen J, Wallengren Gustafsson C, Friberg F: Making sense of receiving palliative treatment: its significance to palliative cancer care communication and information provision. Cancer Nurs. 2012, 36 (4): 265-273. 2012 Oct 9. [Epub ahead of print]CrossRef
29.
go back to reference Friberg F, Öhlen J: Searching for knowledge and understanding while living with impending death – a phenomenological case study. Int J Qua studies Health Well-being. 2007, 2: 217-226. 10.1080/17482620701523777.CrossRef Friberg F, Öhlen J: Searching for knowledge and understanding while living with impending death – a phenomenological case study. Int J Qua studies Health Well-being. 2007, 2: 217-226. 10.1080/17482620701523777.CrossRef
30.
go back to reference Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH: Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007, 21 (6): 507-517. 10.1177/0269216307080823.CrossRefPubMed Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH: Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007, 21 (6): 507-517. 10.1177/0269216307080823.CrossRefPubMed
31.
go back to reference Friberg F, Öhlen J: Reflective exploration of Beekman’s participant experience. Qual Health Res. 2010, 20 (2): 273-280. 10.1177/1049732309354988. 28CrossRefPubMed Friberg F, Öhlen J: Reflective exploration of Beekman’s participant experience. Qual Health Res. 2010, 20 (2): 273-280. 10.1177/1049732309354988. 28CrossRefPubMed
32.
go back to reference Ashworth P: The phenomenology of the lifeworld and social psychology. Soc Psychol Rev. 2003, 5 (1): 18-34. Ashworth P: The phenomenology of the lifeworld and social psychology. Soc Psychol Rev. 2003, 5 (1): 18-34.
33.
go back to reference Ricouer P: From Text to Action: Essays in Hermeneutics II. 1991, London: Athlone Ricouer P: From Text to Action: Essays in Hermeneutics II. 1991, London: Athlone
34.
go back to reference Lindseth A, Norberg A: A phenomenological hermeneutical method for researching lived experience. Scand J Car Sci. 2004, 18 (2): 145-153. 10.1111/j.1471-6712.2004.00258.x.CrossRef Lindseth A, Norberg A: A phenomenological hermeneutical method for researching lived experience. Scand J Car Sci. 2004, 18 (2): 145-153. 10.1111/j.1471-6712.2004.00258.x.CrossRef
35.
go back to reference Frid I, Öhlen J, Bergbom I: On the use of narratives in nursing research. J of Advanced Nursing. 2000, 32 (3): 695-703. 10.1046/j.1365-2648.2000.01530.x.CrossRef Frid I, Öhlen J, Bergbom I: On the use of narratives in nursing research. J of Advanced Nursing. 2000, 32 (3): 695-703. 10.1046/j.1365-2648.2000.01530.x.CrossRef
36.
go back to reference Dewey J: Human Nature and Human Conduct: An Introduction to Social Psychology. 2005, New York: Dover Publication Inc Dewey J: Human Nature and Human Conduct: An Introduction to Social Psychology. 2005, New York: Dover Publication Inc
37.
go back to reference Romanoff BD, Thompson BE: Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts. Am J Hosp Palliat Care. 2006, 23 (4): 309-316. 10.1177/1049909106290246. ReviewCrossRefPubMed Romanoff BD, Thompson BE: Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts. Am J Hosp Palliat Care. 2006, 23 (4): 309-316. 10.1177/1049909106290246. ReviewCrossRefPubMed
38.
go back to reference la Cour K, Johannessen H, Josephsson S: Activity and meaning making in the everyday lives of people with advanced cancer. Palliat Support Care. 2009, 7 (4): 469-479. 10.1017/S1478951509990472.CrossRefPubMed la Cour K, Johannessen H, Josephsson S: Activity and meaning making in the everyday lives of people with advanced cancer. Palliat Support Care. 2009, 7 (4): 469-479. 10.1017/S1478951509990472.CrossRefPubMed
39.
go back to reference Carlander I: Me-ness and We-ness in a Modified Everyday Life Close Death at Home. PhD thesis. 2011, Solna: Karolinska institutet, Department of Neurobiology, Care Sciences and Society Carlander I: Me-ness and We-ness in a Modified Everyday Life Close Death at Home. PhD thesis. 2011, Solna: Karolinska institutet, Department of Neurobiology, Care Sciences and Society
40.
go back to reference Friedrichsen M: Different Ways Cancer Patients, Family Members and Physicians Experience Information in the Transition to the Late Palliative Phase. PhD thesis. 2002, Linköping: Linköping University, Department of Biomedicine and Surgery, Palliative Research Unit Friedrichsen M: Different Ways Cancer Patients, Family Members and Physicians Experience Information in the Transition to the Late Palliative Phase. PhD thesis. 2002, Linköping: Linköping University, Department of Biomedicine and Surgery, Palliative Research Unit
41.
go back to reference Strang S: Spiritual/Existential Issues in Palliative Care. With Special Reference to Patients with Brain Tumours and their Spouses. PhD thesis. 2002, Gothenburg: Gothenburg University, Department of Oncology Strang S: Spiritual/Existential Issues in Palliative Care. With Special Reference to Patients with Brain Tumours and their Spouses. PhD thesis. 2002, Gothenburg: Gothenburg University, Department of Oncology
42.
go back to reference Browall M, Melin Johansson C, Strang S, Danielsson E, Henoch I: Health care staff´s opinions about existential issues among patients with cancer. Pall and supp care. 2010, 8: 59-68. 10.1017/S147895150999071X.CrossRef Browall M, Melin Johansson C, Strang S, Danielsson E, Henoch I: Health care staff´s opinions about existential issues among patients with cancer. Pall and supp care. 2010, 8: 59-68. 10.1017/S147895150999071X.CrossRef
43.
go back to reference Puchalski C, Ferrel B, Virani R, Otis Green S, Baird P, Bull J, Chochinov H, Handzo G, Nelsen Becker H, Prince Paul M, Pugliese K, Sulmasy D: Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med. 2009, 12 (10): 885-904. 10.1089/jpm.2009.0142.CrossRefPubMed Puchalski C, Ferrel B, Virani R, Otis Green S, Baird P, Bull J, Chochinov H, Handzo G, Nelsen Becker H, Prince Paul M, Pugliese K, Sulmasy D: Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med. 2009, 12 (10): 885-904. 10.1089/jpm.2009.0142.CrossRefPubMed
44.
go back to reference Rujis CD, Kerkhof AJ, van der Wal G, Onwuteaka-Philipsen BD: The broad spectrum of unbearable suffering in end-of-life cancer studied in Dutch primary care. BMC Palliat Care. 2012, 11: 12-10.1186/1472-684X-11-12.CrossRef Rujis CD, Kerkhof AJ, van der Wal G, Onwuteaka-Philipsen BD: The broad spectrum of unbearable suffering in end-of-life cancer studied in Dutch primary care. BMC Palliat Care. 2012, 11: 12-10.1186/1472-684X-11-12.CrossRef
45.
go back to reference Öhlén J, Bengtsson J, Skott C, Segesten K: Being in a lived retreat – embodied meaning of alleviated suffering. Cancer Nurs. 2002, 25 (4): 318-325. 10.1097/00002820-200208000-00008.CrossRefPubMed Öhlén J, Bengtsson J, Skott C, Segesten K: Being in a lived retreat – embodied meaning of alleviated suffering. Cancer Nurs. 2002, 25 (4): 318-325. 10.1097/00002820-200208000-00008.CrossRefPubMed
46.
go back to reference Hermann CP: Spiritual needs of dying patients: a qualitative study. Oncol Nurs Forum. 2001, 28 (1): 67-72.PubMed Hermann CP: Spiritual needs of dying patients: a qualitative study. Oncol Nurs Forum. 2001, 28 (1): 67-72.PubMed
47.
go back to reference Henoch I, Danielsson E: Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psycho-Oncology. 2009, 18: 225-236. 10.1002/pon.1424.CrossRefPubMed Henoch I, Danielsson E: Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psycho-Oncology. 2009, 18: 225-236. 10.1002/pon.1424.CrossRefPubMed
48.
go back to reference Barazzetti G, Borreani C, Miccinesi G, Toscani F: What “best practise” could be in Palliative Care: an analysis of statement on practise and ethics expressed by the main Health organizations. BMC Palliat Care. 2010, 9: 1-31. 10.1186/1472-684X-9-1.CrossRefPubMedPubMedCentral Barazzetti G, Borreani C, Miccinesi G, Toscani F: What “best practise” could be in Palliative Care: an analysis of statement on practise and ethics expressed by the main Health organizations. BMC Palliat Care. 2010, 9: 1-31. 10.1186/1472-684X-9-1.CrossRefPubMedPubMedCentral
Metadata
Title
Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study
Authors
Magdalena Karlsson
Febe Friberg
Catarina Wallengren
Joakim Öhlén
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2014
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-13-28

Other articles of this Issue 1/2014

BMC Palliative Care 1/2014 Go to the issue