Soins palliatifs et médecine

Abstrait

End-of-Life Decision Making in Pediatric Oncology and Intensive Care in Germany Results of a Multi-professional Questionnaire Study

Nennhaus M, Classen CF

Objective: In modern medicine, not all possible treatments are in the best interest of a patient. Decisions to withhold or withdraw therapies should be based on the patient’s or guardian's wishes and on the medical indication. To define the latter medical teams have to find decisions themselves, which involves not only physicians, but in particular nurses and psychologists – and in case of disagreements emotional conflicts may result. Methods: We asked how end-of-life decisions are made in German pediatric oncology and intensive care units, and what problems were observed. An online questionnaire was sent to team members of 42 hospitals, covering 32 items, including personal data, the process of decision-making talks itself, and finally, whether they were a burden for teams or led to conflicts within them. Data were studied by a descriptive analysis. Results: From 282 questionnaires, we received 77 answers (27.30%; i.e. 59 physicians, 6 nurses, 10 psychologists/others). In most cases, 4-5 participants were involved in end-of-life decision talks, always including physicians, often nurses or other professional groups. A standard procedure was used only by a minority, in particular in intensive care units, as were cooperation with a clinical ethics committee or with a neutral observer. Many respondents reported moderately burdening talks, and conflicts in decision making were a burden to the teams. These conflicts took place on all levels. The feeling of being ignored or neglected in an end-of-life decision talk was described by some respondents. Conclusion: We conclude that standard operation procedures may be of some help; particularly regarding the participation of nurses, there still is some room for improvement. Whether ethical committees or external experts are helpful remains open. However, as conclusion, our impression is that the status quo is not too bad.