'Ambivalence' at the end of life: How to understand patients' wishes ethically
ABSTRACT Health-care professionals in end-of-life care are frequently confronted with patients who seem to be 'ambivalent' about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers need to understand when contradictory statements point to tensions in a patient's moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements.
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ABSTRACT: Starting from two observations regarding nursing ethics research in the past two decades, namely, the dominant influence of both the empirical methods and the principles approach, we present the cornerstones of a foundational argument-based nursing ethics framework. First, we briefly outline the general philosophical-ethical background from which we develop our framework. This is based on three aspects: lived experience, interpretative dialogue, and normative standard. Against this background, we identify and explore three key concepts-vulnerability, care, and dignity-that must be observed in an ethical approach to nursing. Based on these concepts, we argue that the ethical essence of nursing is the provision of care in response to the vulnerability of a human being in order to maintain, protect, and promote his or her dignity as much as possible.Nursing Ethics 03/2013; 20(2):142-9. DOI:10.1177/0969733012473772 · 1.09 Impact Factor
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ABSTRACT: OBJECTIVE: Spiritual well-being (SpWB) is integral to health-related quality of life. The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We analyzed the SpWB of CRC survivors with ostomies. METHODS: Two-hundred-eighty-three long-term (≥5 years) CRC survivors with permanent ostomies completed the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O) questionnaire. An open-ended question elicited respondents' greatest challenge in living with an ostomy. We used content analysis to identify SpWB responses and develop themes. We analyzed responses on the three-item SpWB sub-scale. RESULTS: Open-ended responses from 52% of participants contained SpWB content. Fifteen unique SpWB themes were identified. Sixty percent of individuals expressed positive themes such as "positive attitude", "I am fortunate", "appreciate life more", and "strength through religious faith". Negative themes, expressed by only 29% of respondents, included "struggling to cope", "not feeling 'normal' ", and "loss". Fifty-five percent of respondents expressed ambivalent themes including "learning acceptance", "an ostomy is the price for survival", "reason to be around despite suffering", and "continuing to cope despite challenges". The majority (64%) had a high SpWB sub-scale score. CONCLUSIONS: Although CRC survivors with ostomies infrequently mentioned negative SpWB themes as a major challenge, ambivalent themes were common. SpWB themes were often mentioned as a source of resilience or part of the struggle to adapt to an altered body after cancer surgery. Interventions to improve the quality of life of cancer survivors should contain program elements designed to address SpWB that support personal meaning, inner peace, inter connectedness, and belonging. Copyright © 2013 John Wiley & Sons, Ltd.Psycho-Oncology 11/2013; 22(11). DOI:10.1002/pon.3318 · 4.04 Impact Factor
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ABSTRACT: Background Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Methods Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. Results Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and – more frequently– “to spare others from the burden of oneself”. Conclusions The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients.BMC Palliative Care 07/2014; 13:38. DOI:10.1186/1472-684X-13-38 · 1.79 Impact Factor