Deep brain stimulation (DBS) has been regarded as an efficient and safe treatment for Parkinson’s disease (PD) since being approved by the Food and Drug Administration (FDA) in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS tends to increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago (at the time of writing) and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden.

Background From the 1960 on, Western societies have developed patient education. In France, patient education is part of the public health Law since 2009. Research on patient education has developed in the field of social sciences and humanities in order to understand the social dynamics on which it is based, its intended implications and actual results. As patient education may contribute to an evolution of health care services, this research gives rise to a knowledge that is important to ground public health policies. Funded by IReSP, the present study is innovative as it explores the contemporary development of patient education in the field of Parkinson disease; analyses the teaching models that grounds patient education in this field; examines the implications of technological care (here, deep drain stimulation) in terms of transmitted knowledge and acquired skills. Methods Review of literature. Conceptual analysis of the teaching models (and tools) used in training sessions. Ethnographic work (observations of training sessions; qualitative interviews with health professional and patients) - multi-centric perspective (Paris, Nantes, Toulouse). Results Historical reconstitution of the development of patient education in the context of Parkinson disease worldwide, with a focus on the French context, and its actors. Identification and examination of a variety of goals assigned to patient education. Identification and examination of the teaching models (and tools) used in training sessions. Conclusions Patient education in the field of Parkinson disease shows a great variety of educational practices and of transmitted knowledge. The analysis of its teaching models (and tools) and of the place devoted to technological care in the training sessions show the necessity to better clarify the goals assigned to patient education (patient autonomy, patient observance, emergence of the expert patient). Key messages A clarification of the goals and teaching models of patient education is needed. A specific attention must be paid to patient education in the context of technological care.

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