Randomized controlled trial; Decision Aids; Continuous Professional Development; Advance Care Planning; Shared Decision Making; End of Life Care; Screening palliative needs
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Krones Tanja Otto Theodore Karzig Isabelle Loupatatzis Barbara (2015), Advance Care Planning im Krankenhaussektor - Erfahrungen aus dem Zürcher MAPS trial, in Coors Michael Jox Ralf in der Schmitten Jürgen (ed.), Kohlhammer Verlag , Stuttgart, 270-278.
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Schildmann Jan Krones Tanja, Advance Care Planning in der Onkologie: Ein Überblick aus klinisch-ethischer Perspektive, in Der Onkologe
The aim of our study is to develop, implement and test a complex intervention (continuous multiprofessional development - CPD programme) for improving patients’ preparation for and participation in end of life decisions. This study builds upon two current international “best practice” programs, ACP and SDM/Decision aids (DA), which we plan to combine and adapt to the Swiss/ Hospital Setting for use by a multiprofessional team approach. In cooperation with local, national and international partners, we will focus on strategies to enhance advance care planning (ACP) and shared decision making (SDM) on end of life issues, and documentation and transferability of end of life decisions across health care settings in a coordinated approach involving patients, their families and care givers (in and out of hospital). Research subjects will be palliative, cancer and non cancer patients and their families with full or deteriorated decision making capacity in an acute care hospital setting on cooperating wards (internal medicine, dermatology, neurology, nephrology, hematology, radio-oncology). We design our trial to answer the following research questions:a) Does the implementation of the developed advance care planning program in combination with the use of paper and video based decision aids in hospital and after discharge by patients and their relatives lead to •Main end of life wishes known or made (if alive) or fulfilled (if not alive)after 6 months by main health care professionals (primary endpoint: wish to be resuscitated or not)•less decisional conflict after discharge and after 6 months regarding end of life decisions •more satisfaction with treatment and communication and support after discharge and after 6 months•less traumatic impact of event (in case of patient died) and depression of main surrogate decision maker/relative 3 months after death (if died until 6 months after intervention) and 6 months after discharge of main surrogate decision maker b) Does the implementation of the continuous professional development and support program for ”advance care planning“ by health care professionals lead to •better knowledge and better skills to support patients and their relatives/surrogate decision maker (SM) in difficult decision making situations and encourage talking about issues concerning care at the end of life •All end of life wishes known by main physician (GP, specialist) in charge?•less ethical conflicts and moral distress to deal with end of life choices as perceived by health care professionals after training?MethodsThe trial is designed as a complex intervention design according to the Campbell model of complex interventions. Phase 0-I/II , the pre-design is already taking place (design of Decision Aids, Educational CPD Intervention) until study start in July 2012. The effect of the multi-facetted intervention will be measured in a randomized controlled trial including patients in which the treating doctor is not surprised if he or she dies during the next year. A phase IV study is planned if phase III can successfully be conducted in the second phase of the NFP 67. in which probable changes in routine, impact on health care and costs are investigated and implementation is spread to the outpatient setting.Problems addressed:Although it is widely recognized that preferences of severely ill patients on end of life care should be respected, choices are seldomly known and fulfilled by caregivers even if advance directives are at hand. Evidence suggestst that this is due to several barriers (especially no structured and well conducted communication and documentation of patients' wishes), barriers that we want to adress in our trial.