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This study seeks to explore narratives of care-related violations for patients with life-threatening illness receiving palliative care. Narratives told in dialogues with the researcher were processed phenomenologically hermeneutically. Four structures of meanings are described: focal points in recalling the experiences, experienced consequences of being violated, relationships causing violation, and personal struggling. The phenomenon of care-related violations means a complex experience of suffering as being abandoned, confronted with hopelessness, and further wounded. This experience may be directed toward readiness to share, introspectiveness, willingness to comprehend the incomprehensible, the riskiness of facing others, and attentiveness to acts of caring. It can be experienced in various relationships to professionals, family members and friends, to the mass media, and to welfare systems. Care-related violating episodes reveal the vulnerability of the person who is already suffering and makes him or her still more wounded, when actually comfort is expected. To receive affirmation in the state of fragility with increased suffering provoked by care-related violations can contribute to a transformation from human degradation into dignity, finding meaning, or reaching reconciliation in suffering.
Keywords: dignity; narratives; nursing care; palliative care; suffering; violation; vulnerability
In situations of health care, patients face the risk of being dissatisfied and even violated. To be able to prevent violations as well as alleviate and console when violation is evident in a vulnerable situation, especially at the end of life, we need to further elaborate what it means for a person with life-threatening illness to experience care-related violations and in what kind of situations such violations can be experienced. Previous research on dissatisfaction and experiences of violation related to situations in health care provides knowledge, predominantly in relation to care, care giving, and actions and characteristics of the professionals. This research, however, shows only a few examples of interpretations from the perspective of the patient. Since care-related violations are commonly experienced as various kinds of discomfort and threat by the patient, that is, the suffering person, it is important to further explore its meaning to the person who is ill and suffering.
This study is part of a project aimed at exploring meanings of suffering and alleviation of suffering in persons living with life-threatening cancer, receiving palliative care (Öhlén, Bengtsson, Skott, & Segesten, 2002). The specific purpose...