Nordic Research Meeting for Faith and Health

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Netværksmøde. Deltagelse med oplæg:Paper:Meaning-making among dying patients - a qualitative study in a Danish hospice settingLene Moestrup, RN, cand. scient. san., PhD student, University of Southern DenmarkAt the Nordic Research Meeting for Faith and Health in Honne, Biri 22.-23. October I would like to present some of the results from my study about existential considerations among dying patients and their relatives in a hospice setting. This abstract deals with a not yet published article according dying patients concerns about death. I would therefore ask the participants at the meeting who receive this paper to destroy the paper after the meeting. At the meeting I would like to discuss the results and the theoretical perspectives presented in the discussion section extended with a specific focus on implications to existential palliative care. The results will be presented more detailed at the conference.BackgroundSeveral studies have revealed that life-threatening disease leads to an intensification of existential concerns and these concerns are intensified as the likelihood of death increases [1-3]. However, different studies emphasize that both healthcare professionals and palliative patients find that existential questioning from the palliative patients is not being met adequately in the healthcare system [2, 4-10]. Research suggests that support focusing on existential concerns may help cancer patients and their families to cope with the encroaching death and thereby improve the quality of life in the palliative phase [1, 11-14]. Furthermore ignorance about patients existential concerns can contribute to uncertainty about how to best support the patients with their concerns [13, 15]. Knowledge of modern, secular existential concerns about death is under-researched, and therefore, it is difficult to develop and implement specifically targeted support to dying patients. AimThe aim of this paper is to present the results from a qualitative field study illuminating the variety of dying patients´ existential concerns about their impending death.MethodThe study was conducted in 2011 by LM. The study included 38 days (about 7 hours each day) of participant observation in three Danish hospices and semi-structured interviews with 17 patients and 9 relatives. The empirical data presented in this paper rely primarily on the semi-structured interviews with the patients. Still, the participant observation was important for getting access to the participants and for setting the context for the interviews.ParticipantsThe 17 participants were selected in close cooperation with the hospice staff. They were mostly patients with cancer. Variation in a range of social determinants, such as gender, age, social status and religious faith were attained in the way the patients were selected.The participants were 11 women and 6 men between 40 and 85 years of age. Mean age was 62 years. Their survival time ranged from a few days to a few months from inclusion in the study.InterviewsThe interview guide was inspired by two earlier works: A pilot investigation conducted in 2009[16] and a matrix model about existential meaning making[17]. Furthermore an exhaustive literature search about existential considerations and Yalom’s four existential basic conditions[18] were used to organize the interview guide.AnalysisAll interviews, except for one, were digital recorded and transcribed verbatim by LM. A qualitative description approach was used in the analysis[19, 20]ResultsThe analyses of interview data revealed two categories of existential concerns: The first category “Thoughts and feelings about death” demonstrated how the patients: 1) realized the forthcoming death; 2) felt sorrow about leaving life; 3) were not anxious about death as a final state. The second category “Managing death” demonstrated how the patients: 1) avoided thinking about death; 2) reconstructed individual ideas about afterlife on the basis of faith and previous cultural meaning-making; 3) were planning practical aspects about death; 4) wished to focus on life at hospice. DiscussionThe results show how the participants’ stories created a “landscape” of thoughts and feelings where most of the participants in a clear sense was realizing the forthcoming death. They seemed to be facing death without being anxious of death but they were sorrowful about leaving life. The results demonstrated furthermore a various and contradictory “landscape” in the way the participants were managing the impending death. Most participants avoided thinking about death. Still several had reconstructed specific and positive ideas about afterlife and mostly had made accurate decisions for their funeral and other practical issues related to death. The results showed additionally that the participants wished to talk about and focus on positive aspects in their daily living at hospice. I seemed that the participants were pushing death away but at the same time tried to come to an agreement with death. This managing seemed often intended as a way the participants chose when and how they should enter “the room of death”. It can be argued that the participants’ existential concerns about death not adequately are described by Irvin Yalom’s existential psychology and his theory about defense mechanisms according to death anxiety [18], while these participants in a very conscious way were facing their impending death and at the same time they did not seem to be anxious about death. They preferred in an intended way to focus on positive and maybe trivial daily life aspects in their remaining life.Nor Kübler-Ross’ theory about death stages [21] captures these participants concerns. Using her five interdependent emotional stages: denial, anger, bargaining, depression, and acceptance most of the participants in the present study would be expected to be in the last two stages with depression or acceptance. The participants were sad but most could still find pleasure in their daily living at hospice and did not seemed to be depressed. The acceptance-stage is according to Kübler-Ross characterized with being void of feelings and with no more energy to fight for life, with reduced interests in the outer world and a wish to be left in peace from the surroundings [21]. These characteristics were not found in this study were the participants were facing death but still seemed to be interested in the surroundings with a wish to involve in and joy their daily life according to their conditions. With inspiration from Danish research about “Being” in everyday life [22, 23] based on Martin Heideggers [24] phenomenological thinking, the results can be understood in another perspective, which can contribute to explore the contradictory landscape of managing death. Findings from a study about aesthetic engagement among patients living with advanced cancer [23] demonstrated how the suffering of pain and illness was identified as coexisting with an appreciation of life in the ongoing endeavor of making the best of the time left. That involved involvement in daily activities and aesthetic enjoyment. People who were incurable ill might strive for a sense of authentic being through involvement that accorded with their inner priorities even as they negotiated the realities of impending death and responded to everyday life. This study indicated that it was not a matter of either inauthentic or authentic being but rather an oscillation between the two given that engagement in daily activities were essential to create meaning in live. The participants’ way of managing death in the present study can be comparable to this oscillation in the way the participants choose when and how they should enter “the room of death”. They preferred to focus on the meaningful activities in the daily life at hospice but they tried at the same time to encompass death by planning death and reconstruct ideas of afterlife in a manner that reflected their individual inner values.ConclusionThe analyses indicated that the dying patients’ concerns were complex, contradictory and not suited to be understood within a single theory. An ongoing reflection including different theoretical perspectives seems important when providing existential care and support to dying patients.References1.la Cour, P., Existential and religious issues when admitted to hospital in a secular society: Patterns og change. Mental Health, Religion & Culture, 2008.2.Cohen, S.R., et al., Existential well-being is an important determinant of quality of life - Evidence from the McGill quality of life questionnaire. Cancer, 1996. 77(3): p. 576-586.3.Thuné-Boyle, I., Stygall, J., Keshtgar, M. et al. , Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the litterature. Social Science & Medicine, 2006. 63: p. 151-64.4.Kaut, K.P., Religion, spirituality, and existentialism near the end of life - Implications for assessment and application. American Behavioral Scientist, 2002. 46(2): p. 220-234.5.Hermann, C.P., The degree to which spiritual needs of patients near the end of life are met. Oncology Nursing Forum, 2007. 34(1): p. 70-78.6.Lundmark, M., Attitudes to spiritual care among nursing staff in a Swedish oncology clinic. Journal of Clinical Nursing, 2006. 15(7): p. 863-874.7.Hampton, D.M., et al., Spiritual needs of persons with advanced cancer. American Journal of Hospice & Palliative Medicine, 2007. 24(1): p. 42-48.8.Strang, S., P. Strang, and B.M. Ternestedt, Spiritual needs as defined by Swedish nursing staff. J Clin Nurs, 2002. 11(1): p. 48-57.9.Balboni, M.J., et al., Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 2013. 31(4): p. 461-7.10.LeMay, K. and K.G. Wilson, Treatment of existential distress in life threatening illness: a review of manualized interventions. Clinical psychology review, 2008. 28(3): p. 472-93.11.McClain-Jacobson, C., et al., Belief in an afterlife, spiritual well-being and end-of-life despair in patients with advanced cancer. General Hospital Psychiatry, 2004. 26(6): p. 484-486.12.Strang, S., P. Strang, and B.M. Ternestedt, Existential support in brain tumour patients and their spouses. Supportive Care in Cancer, 2001. 9(8): p. 625-633.13.Murray, S.A., et al., Exploring the spiritual needs of people dying of lung cancer or heart failure: A prospective qualitative interview study of patients and their carers. Palliative Medicine, 2004. 18(1): p. 39-45.14.Balboni, T.A., et al., Provision of Spiritual Care to Patients With Advanced Cancer: Associations With Medical Care and Quality of Life Near Death. Journal of Clinical Oncology, 2010. 28(3): p. 445-452.15.Astrow, A.B., et al., Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? Journal of Clinical Oncology, 2007. 25(36): p. 5753-5757.16.Moestrup, L., Religiøs identitet og religiøs coping. Litteraturgennemgang og interviewundersøgelse med fokus på rekonstruktion af religiøs tro hos pallliative kræftpatinter i Danmark. 2010.17.la Cour, P. and N.C. Hvidt, Research on meaning-making and health in secular society: Secular, spiritual and religious existential orientations. Social Science & Medicine, 2010. 71(7): p. 1292-1299.18.Yalome, I., Existential Psychoterapy. 1980, United States of America: Basic Books.19.Sandelowski, M., Whatever happened to qualitative description? Research in Nursing & Health, 2000. 23(4): p. 334-340.20.Neergaard, M.A., et al., Qualitative description - the poor cousin of health research? Bmc Medical Research Methodology, 2009. 9.21.Kübler-Ross, E., living with Dead and Dying. First Edition ed. 1981, London: Souvenir Press.22.Dreier, O., Psychotherapy in everyday life, 2008, Cambridge: Cambridge University Press.23.la Cour, K. and H.P. Hansen, Aesthetic Engagements: "Being" in Everyday Life With Advanced Cancer. American Journal of Hospice & Palliative Medicine, 2012. 29(2): p. 126-133.24.Heidegger M, M.J., Robinson E, Being and Time. 2008, New York: Harper Perennial/Modern Thought.

Periode	2013 → …
Begivenhedstype	Konference
Placering	Biri, Norge