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      Solicitude: balancing compassion and empowerment in a relational ethics of hope—an empirical-ethical study in palliative care

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          Abstract

          The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of (false) hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships.

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          The online version of this article (doi:10.1007/s11019-015-9642-9) contains supplementary material, which is available to authorized users.

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          Collusion in doctor-patient communication about imminent death: an ethnographic study.

          To discover and explore the factors that result in "false optimism about recovery" observed in patients with small cell lung cancer. A qualitative observational (ethnographic) study in two stages over four years. Lung diseases ward and outpatient clinic in university hospital in the Netherlands. 35 patients with small cell lung cancer. "False optimism about recovery" usually developed during the (first) course of chemotherapy and was most prevalent when the cancer could no longer be seen in the x ray pictures. This optimism tended to vanish when the tumour recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly because of physical deterioration and partly through contact with fellow patients who were in a more advanced stage of the illness and were dying. "False optimism about recovery" was the result an association between doctors' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them not to acknowledge explicitly what they should and could know. The doctor did and did not want to pronounce a "death sentence" and the patient did and did not want to hear it. Solutions to the problem of collusion between doctor and patient require an active, patient oriented approach from the doctor. Perhaps solutions have to be found outside the doctor-patient relationship itself - for example, by involving "treatment brokers."
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            Time, texture and childhood: The contours of longitudinal qualitative research

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              Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study

              Objective To examine health professionals’ experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer. Design Purposive, qualitative design based on in-depth interviews. Setting Oncology departments at university hospitals and general hospitals in the Netherlands. Participants 14 physicians and 13 nurses who cared for patients with metastatic cancer. Results Physicians and nurses reported trying to inform patients fully about their poor prognosis and treatment options. They would carefully consider the (side) effects of chemotherapy and sometimes doubted whether further treatment would contribute to patients’ quality of life. Both groups considered the patients’ wellbeing to be important, and physicians seemed inclined to try to preserve this by offering further chemotherapy, often followed by the patient. Nurses were more often inclined to express their doubts about further treatment, preferring to allow patients to make the best use of the time that is left. When confronted with a treatment dilemma and a patient’s wish for treatment, physicians preferred to make compromises, such as by “trying out one dose.” Discussing death or dying with patients while at the same time administering chemotherapy was considered contradictory as this could diminish the patients’ hope. Conclusions The trend to greater use of chemotherapy at the end of life could be explained by patients’ and physicians’ mutually reinforcing attitudes of “not giving up” and by physicians’ broad interpretation of patients’ quality of life, in which taking away patients’ hope by withholding treatment is considered harmful. To rebalance the ratio of quantity of life to quality of life, input from other health professionals, notably nurses, may be necessary.
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                Author and article information

                Contributors
                +31 20 56 64 952 , erik.olsman@amc.uva.nl
                Journal
                Med Health Care Philos
                Med Health Care Philos
                Medicine, Health Care, and Philosophy
                Springer Netherlands (Dordrecht )
                1386-7423
                1572-8633
                6 May 2015
                6 May 2015
                2016
                : 19
                : 11-20
                Affiliations
                [ ]Section of Medical Ethics, Department of General Practice, Academic Medical Center, University of Amsterdam, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands
                [ ]Department of Ethics of Care, University of Humanistic Studies, Utrecht, The Netherlands
                Article
                9642
                10.1007/s11019-015-9642-9
                4805712
                25944316
                3921dede-a39f-41ee-8d44-7ee30ff61a26
                © The Author(s) 2015

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100001826, Netherlands Organisation for Health Research and Development;
                Award ID: 1151.0013
                Categories
                Scientific Contribution
                Custom metadata
                © Springer Science+Business Media Dordrecht 2016

                Medicine
                hope,ethics,palliative care,qualitative research,solicitude,empowerment,compassion
                Medicine
                hope, ethics, palliative care, qualitative research, solicitude, empowerment, compassion

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