Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-23T00:41:27.487Z Has data issue: false hasContentIssue false
  • English
  • Français

“All of a sudden, a lot less still makes it worthwhile to be alive:” Palliative care patients’ views on life

Published online by Cambridge University Press:  08 March 2018

Vanessa Romotzky Open the ORCID record for Vanessa Romotzky [Opens in a new window] ,
Julia Strupp Open the ORCID record for Julia Strupp [Opens in a new window] ,
Alexander Hayn ,
Jens Ulrich Rüffer ,
Judith Grümmer  and
Raymond Voltz
Vanessa Romotzky*
Affiliation:
Department of Palliative Care, University Hospital, Cologne, Germany
Julia Strupp
Affiliation:
Department of Palliative Care, University Hospital, Cologne, Germany
Alexander Hayn
Affiliation:
Department of Palliative Care, University Hospital, Cologne, Germany
Jens Ulrich Rüffer
Affiliation:
Take Part Media, Cologne, Germany
Judith Grümmer
Affiliation:
Journalist, self-employed
Raymond Voltz
Affiliation:
Department of Palliative Care, University Hospital, Cologne, Germany Center for Integrated Oncology, Cologne/Bonn, Germany Clinical Trials Center, Cologne, Germany Center for Health Services Research, Medical Faculty, University of Cologne, Cologne, Germany
*
Author for correspondence: Vanessa Romotzky, Department of Palliative Care, University Hospital, Kerpener Str. 62, 50937 Cologne, Germany. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

We aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them.

Method

Data were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients.

Result

Eighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41–80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD.

Significance of results

Results support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

Keywords

Palliative carequalitative interviewsattitudes towards lifepalliative patientsterminally ill
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 2 , April 2019 , pp. 214 - 220
Copyright
Copyright © Cambridge University Press 2018 

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.)

Footnotes

*

V.R. and J.S. contributed equally to this manuscript

References

Arman, M and Rehnsfeldt, A (2003) The hidden suffering among breast cancer patients: A qualitative metasynthesis. Qualitative Health Research 13(4), 510–527.10.1177/1049732302250721Google Scholar
Arman, M, Rehnsfeldt, A, Lindholm, L, et al. (2002) The face of suffering among women with breast cancer—being in a field of forces. Cancer Nursing 25(2), 96–103.Google Scholar
Blawath, S, Metten, R, and Tschuschke, V (2014) Achtsamkeit, Depression und Lebensqualität bei Krebs: Der nicht-lineare indirekte Effekt von Achtsamkeit auf die Lebensqualität von Krebspatienten. Zeitschrift für Psychosomatische Medizin und Psychotherapie 60(4), 337–349.Google Scholar
Borden, W (1989) Life review as a therapeutic frame in the treatment of young adults with AIDS. Health and Social Work 14(4), 253–259.Google Scholar
Brogan, P, Hasson, F, and McIlfatrick, S (2018) Shared decision-making at the end of life: A focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting. Palliative Medicine 32(1), 123–132.Google Scholar
Calhoun, LG and Tedeshi, RG (2006). Handbook of posttraumatic growth: Research and practice. London: Routledge.Google Scholar
Cottingham, AH, Cripe, LD, Rand, KL, et al. (2017) “My future is now”: A qualitative study of persons living with advanced cancer. American Journal of Hospice & Palliative Care 1049909117734826. Epub ahead of print.Google Scholar
Dantas, MM and Amazonas, M C (2016) The illness experience: Palliative care given the impossibility of healing. Revista da Escola da Enfermagem da USP 50 Spec, 47–53.Google Scholar
De Jong, JD and Clarke, LE (2009) What is a good death? Stories from palliative care. Journal of Palliative Care 25(1), 61–67.Google Scholar
de Ravon, PB (1983) The final task: Life review for the dying patient. Nursing 83 13(2), 44–46.Google Scholar
Dobríková, P, Macková, J, Pavelek, L, et al. (2016) The effect of social and existential aspects during end of life care. Nursing and Palliative Care 1(3), 47–51.Google Scholar
Dong, X, Li, G, Liu, C, et al. (2017) The mediating role of resilience in the relationship between social support and posttraumatic growth among colorectal cancer survivors with permanent intestinal ostomies: A structural equation model analysis. European Journal of Oncology Nursing 29(Suppl C), 47–52.Google Scholar
Etkind, SN, Bristowe, K, Bailey, K, et al. (2017) How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliative Medicine 31(2), 171–180.Google Scholar
Fish, JA, Ettridge, K, Sharplin, GR, et al. (2013) Mindfulness-based cancer stress management: Impact of a mindfulness-based programme on psychological distress and quality of life. European Journal of Cancer Care 23(3), 413–421.Google Scholar
Frankl, VE (2005) Der Wille zum Sinn, vol. 5. Bern: Huber.Google Scholar
Gysels, M, Shipman, C, and Higginson, IJ (2008) “I will do it if it will help others:” Motivations among patients taking part in qualitative studies in palliative care. Journal of Pain and Symptom Management 35(4), 347–355.Google Scholar
Gysels, M, Shipman, C, and Higginson, IJ (2008) Is the qualitative research interview an acceptable medium for research with palliative care patients and carers? BMC Medical Ethics 9(1), 7.Google Scholar
Hack, TF, McClement, SE, Chochinov, HM, Cann, BJ, Hassard, TH, Kristjanson, LJ and Harlos, M (2010) Learning from dying patients during their final days: life reflections gleaned from dignity therapy. Palliative Medicine 24, 715–723.Google Scholar
Hannon, B, Swami, N, Rodin, G, et al. (2017) Experiences of patients and caregivers with early palliative care: A qualitative study. Palliative Medicine 31(1), 72–81.Google Scholar
Johnson, JO, Sulmasy, DP, and Nolan, MT (2007) Patients' experiences of being a burden on family in terminal illness. Journal of Hospice and Palliative Nursing 9(5), 264–269.Google Scholar
Kars, MC, van Thiel, GJMW, van der Graaf, R, et al. (2015) A systematic review of reasons for gatekeeping in palliative care research. Palliative Medicine 30(6), 533–548.Google Scholar
Khanjani, MS, Younesi, SJ, Khankeh, HR, et al. (2017) Exploring facilitators of post-traumatic growth in patients with spinal cord injury: A qualitative study. Electronic Physician 9(1), 3544–3553.Google Scholar
Lee, V (2008) The existential plight of cancer: meaning making as a concrete approach to the intangible search for meaning. Supportive Care in Cancer 16(7), 779–785.Google Scholar
Lester, J (1990) Life review with the terminally ill. Unpublished master's thesis. University of Southhampton, Southhampton, UK.Google Scholar
Levenson, JW, McCarthy, EP, Lynn, J, et al. (2000) The last six months of life for patients with congestive heart failure. Journal of the American Geriatrics Society 48(S1), S101–S109.Google Scholar
Mayring, P (2004) Qualitative content analysis. Flick, U, Kardorff, E v, and Steinke, I (eds.). A companion to qualitative research (vol. 266–269). London: Sage.Google Scholar
Mosher, CE, Ott, MA, Hanna, N, et al. (2015) Coping with physical and psychological symptoms: A qualitative study of advanced lung cancer patients and their family caregivers. Support Care Cancer 23(7), 2053–2060.Google Scholar
Nissim, R (2008) In the land of the living/dying: A longitudinal qualitative study on the experience of individuals with fatal cancer. Dissertation Abstracts International: Section B. The Sciences and Engineering. 69.Google Scholar
O'Mara, AM, St Germain, D, Ferrell, B, et al. (2009) Challenges to and lessons learned from conducting palliative care research. Journal of Pain and Symptom Management 37(3), 387–394.Google Scholar
Pickrel, J (1989) “Tell me your story”: Using life review in counseling the terminally ill. Death Studies 13(2), 127–135.Google Scholar
Pierret, J (2003) The illness experience: State of knowledge and perspectives for research. Sociology of Health and Illness 25, 4–22.Google Scholar
Pinquart, M, Fröhlich, C, and Silbereisen, RK (2007) Cancer patients' perceptions of positive and negative illness-related changes. Journal of Health Psychology 12(6), 907–921.Google Scholar
Preisler, M, Heuse, S, Riemer, M, et al. (2017) Early integration of palliative cancer care: Patients' and caregivers' challenges, treatment preferences, and knowledge of illness and treatment throughout the cancer trajectory. Support Care Cancer 26(3), 921–931.Google Scholar
Rodin, G and Zimmermann, C (2008) Psychoanalytic reflections on mortality: A reconsideration. Psychodynamic Psychiatry 36(1), 181.Google Scholar
Rustemeyer, R (1992) Praktisch-methodische Schritte der Inhaltsanalyse. Eine Einführung am Beispiel der Analyse von Interviewtexten. Münster: Aschendorff.Google Scholar
Steinhauser, KE, Christakis, NA, Clipp, EC, et al. (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284(19), 2476–2482.Google Scholar
Tedeschi, RG and Calhoun, LG (2004) Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry 15(1), 1–18.Google Scholar
Thomas, C, Reeve, J, Bingley, A, et al. (2009) Narrative research methods in palliative care contexts: Two case studies. Journal of Pain and Symptom Management 37(5), 788–796.Google Scholar
Ussher, JM and Sandoval, M (2008) Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers. Psychology & Health 23(8), 945–963.Google Scholar
Voltz, R, Galushko, M, Walisko, J, et al. (2010) End-of-life research on patients' attitudes in Germany: A feasibility study. Supportive Care in Cancer 18(3), 317–320.Google Scholar
Vuksanovic, D, Green, HJ, Dyck, M, et al. (2016) Dignity therapy and life review for palliative care patients: A randomized controlled trial. Journal of Pain and Symptom Management 53(2), 162–170.Google Scholar
White, C and Hardy, J (2010) What do palliative care patients and their relatives think about research in palliative care?—a systematic review. Supportive Care in Cancer 18(8), 905–911.Google Scholar
Wholihan, D (1992) The value of reminiscence in hospice care. American Journal of Hospice and Palliative Medicine 9(2), 33–35. doi:10.1177/104990919200900210.Google Scholar
Wrubel, J, Acree, M, Goodman, S, et al. (2009) End of living: Maintaining a lifeworld during terminal illness. Psychology & Health 24(10), 1229–1243.Google Scholar
Zamora, ER, Yi, J, Akter, J, et al. (2017) ‘Having cancer was awful but also something good came out’: Post-traumatic growth among adult survivors of pediatric and adolescent cancer. European Journal of Oncology Nursing 28(Suppl C), 21–27.Google Scholar