Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome

Abstract

Aim. The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers–Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care.

Purpose. To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences.

Method. A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective.

Results. After qualitative content analysis, the following five categories were identified: ‘Being ignored and belittled by health-care professionals,’ ‘Being assigned psychological and/or psychiatric explanations’, ‘Being treated and considered merely as an object’, ‘Being trespassed in one's personal sphere’ and ‘Being suspected of family violence’. Consequences of these encounters were ‘Mistrusting the physician’ and ‘Risking bad health’.

Conclusions. The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.

Keywords:

• Ehlers–Danlos syndrome
• health-care encounters
• experiences
• suffering
• malingering
• Munchausen's by proxy

Acknowledgements

We express our gratitude to the individuals with EDS at the EDNF conference in Tampa for responding to this questionnaire.