Project

Randomized controlled trial; Decision Aids; Continuous Professional Development; Advance Care Planning; Shared Decision Making; End of Life Care; Screening palliative needs

Lead
Für behandelnde Teams ist es oft schwierig, die Wünsche der Patienten am Lebensende zu berücksichtigen und die Angehörigen zu unterstützen. Um Einsicht in diese Prozesse zu erhalten, sollen die Instrumente der Planung ("Advance Care Planning") und der Entscheidungshilfen ("Decision Aids") zusammengeführt und in der Praxis getestet werden.
Lay summary
Hintergrund In den letzten 20 Jahren hat sich gezeigt, dass die Stärkung der rechtlichen Verbindlichkeit von Patientenverfügungen ethisch und juristisch relevant ist. Das kommende Erwachsenenschutzrecht fördert diese Stärkung. Damit ist jedoch nicht gewährleistet, dass die Behandlung am Lebensende den Wünschen der Patienten angepasst wird oder die Entscheidungsfindung der Patienten, ihrer Angehörigen und der Behandlungsteams leichter geworden ist. Ziel Die Studie beabsichtigt, zusammen mit nationalen und internationalen Partnern die Best Practice zur Planung der Situation am Lebensende zu entwickeln. Für die Schweiz bedeutet dies zunächst, ein Programm für das Akutspital zu testen. Durch das Programm werden zum einen Ärzte und Ärztinnen weitergebildet. Analog zu international erfolgreichen Programmen werden zum anderen auch Fachkräfte des Gesundheitswesens (Pflegende, Sozialarbeitende, Seelsorgende) zur zertifizierten Gesprächsführung ausgebildet. Das Programm wird mittels einer Interventionsstudie getestet. Berücksichtigt werden urteilsfähige Patienten, die voraussichtlich nur noch wenige Wochen bis Monate zu leben haben, und ihre nächsten Bezugspersonen. Bedeutung Bisherige Studien zeigen, dass Programme strukturierter Gespräche durch geschulte Behandlungsteams dazu führen, dass die Anzahl der Patientenverfügungen zunimmt, die Entscheidungsunsicherheit abnimmt und die Wünsche der Patienten häufiger berücksichtigt werden. Angehörige scheinen zudem nach dem Tod des Patienten signifikant weniger traumatisiert und depressiv zu sein. Zudem nehmen durch solche Programme die Zahl medizinisch invasiver Behandlungen und die Kosten am Lebensende ab, ohne dass dies einen negativen Einfluss auf die Sterblichkeit hat. Die Forschenden hoffen mittels des Weiterbildungsprogramms, der damit verbundenen Dokumentation und der Informationsvermittlung zwischen Spital, Rettungsdiensten und Hausärzten und -ärztinnen die Praxis entscheidend zu verbessern.

Direct link to Lay Summary

Last update: 18.06.2013

Lead
Les équipes soignantes ont souvent du mal à tenir compte des souhaits des patients en fin de vie et à soutenir les proches. Afin de mieux comprendre ces processus, l’étude vise à relier et à tester les instruments de planification ("Advance Care Planning") et d’aide à la décision ("Decision Aids").
Lay summary
Contexte Depuis une vingtaine d’années, il est apparu que le renforcement de la valeur juridique des directives anticipées a des conséquences éthiques et juridiques. Le nouveau droit de la protection de l’adulte va dans le sens de ce renforcement. Mais ceci ne garantit pas que le traitement prodigué en fin de vie soit adapté aux souhaits du patient ou que la prise de décision soit plus facile pour les patients, les proches et les équipes soignantes. But Cette étude a pour but, en coopération avec des partenaires nationaux et internationaux, d’élaborer les meilleures pratiques pour planifier la situation en fin de vie. Pour la Suisse, cela signifie tout d’abord de tester un programme pour les hôpitaux de soins aigus. Ce programme permet d’une part aux médecins de se perfectionner. D’autre part, par analogie avec des programmes mis en œuvre avec succès dans d’autres pays, des personnes travaillant dans le système de santé (infirmiers, travailleurs sociaux, assistants spirituels) suivent une formation certifiée à l’entretien de planification. Ce programme est testé par le biais d’une étude d’intervention. Celle-ci tiendra compte de patients capables de discernement, n’ayant probablement plus que quelques semaines ou quelques mois à vivre, et de leurs proches. Portée Les études réalisées jusqu’à présent montrent que des programmes d’entretiens structurés par des équipes de soins formées font augmenter le nombre de directives anticipées, diminuer les incertitudes dans la prise de décisions et améliorer la prise en compte des souhaits des patients. De plus, il semble que les proches soient nettement moins traumatisés et dépressifs suite au décès du patient. Par ailleurs, ces programmes font diminuer le nombre de traitements médicaux invasifs et les coûts en fin de vie, sans pour autant avoir un impact négatif sur la mortalité. À l’aide du programme de perfectionnement, de sa documentation et de la transmission d’informations entre l’hôpital, les services de secours et les médecins de famille, les chercheurs espèrent améliorer la pratique de manière décisive.

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Last update: 18.06.2013

Lead
For medical teams it is often difficult to take patients’ wishes into consideration and to support patients’ family members. To gain insight into these processes, this study will bring together and test the instruments of advanced care planning and decision aids.
Lay summary
Background In the last 20 years, it has been shown that it is ethically and legally important to make pa-tients’ living wills and advance directives more legally binding. The forthcoming new "adult protection law" will support this. However, this will not guarantee that treatments at the end of life will be adapted to the patients’ wishes or that decision-making will be easier for patients, their families and the medical team. Aim This study aims to work with national and international partners to develop best practice in planning for the end of life. For Switzerland this means first testing a programme for acute hospitals. As one part of the programme, physicians will receive further training in this area. For another, and similar to successful programmes in other countries, also other qualified health care staff (nurses, social workers, pastors) will be certified hold conversations and provide information. The programme will be tested by means of an intervention study. Partic-ipants will be competent patients that have a life expectancy of a few weeks or months and their closest relatives. Significance Previous studies have shown that programmes with structured informational conversations by trained medical teams lead to an increase in the number of living wills and advance directives; decision uncertainty decreases, and patients’ wishes are followed more frequently. In addition, after the patient’s death, family members appear to be significantly less traumatised and depressed. With these programmes, there is also a drop in the number of invasive medical procedures and in the costs at the end of life, with no negative effect on mortality. The research team hopes that, by means of the further education programme and associated documentation as well as the sharing of information between hospital, rescue services and primary care physicians, practices can be significantly improved.

Direct link to Lay Summary

Last update: 18.06.2013

Active participation

Active participation

Communication	Title	Media	Place	Year

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.