Abstrakt
In the past couple of years, palliative care has been flourishing - it's importance is being recognised also by the official authorities which translates to adoption of new health-care policies: dedicated palliative teams - including a pediatric palliative team - are being introduced to our hospitals and highly praised. Our findings that indicate potential downfalls of improperly applied palliative care in institutions that hasn't got rid of paternalist approach.
Even if sometimes masked with (and mistaken for) attentive kindness, medical paternalism deprives families from developing their own competence and coping potential. If palliative care is performed by professionals who don't respect autonomy of the patient and his/her family, and whose help isn't strictly based on the principles of family-centred care, their help may become an additional burden for the family of the sick child, and the performance of the team thus may become counterproductive.
We wish to illustrate the risk on several case studies that are part of our current doctoral qualitative research (narrative interviews, secondary data analysis and participant observation). We also wish to show some examples of good practice resulting from the willingness of supportive teams (including teams involved in perinatal palliative care) to really listen to the families of their patients and meeting the needs the families themselves identify.