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Multiprofessional advance care planning and shared decision making for end of life care MAPS trial

English title Multiprofessional advance care planning and shared decision making for end of life care MAPS trial
Applicant Krones Tanja
Number 139255
Funding scheme NRP 67 End of Life
Research institution Dermatologische Klinik Universitätsspital Zürich
Institution of higher education University of Zurich - ZH
Main discipline Public Health and Health Services
Start/End 01.09.2012 - 28.02.2017
Approved amount 633'929.00
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Keywords (7)

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

Lay Summary (German)

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

Lay Summary (French)

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.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

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

Responsible applicant and co-applicants

Employees

Publications

Publication
Advance Care Planning -One Size does not always fit all
Karzig Isabelle Otto Theodore Loupatatzis Barbara Krones, Tanja (2016), Advance Care Planning -One Size does not always fit all, in Bioethica Forum, 9(3), 106-109.
[CME. Patient advance directives in family medicine].
Stadelmann Valeria, Stucki-Häusler Vera, Krones Tanja (2015), [CME. Patient advance directives in family medicine]., in Praxis, 104(20), 1059-1065.
Advance Care Planning im Krankenhaussektor - Erfahrungen aus dem Zürcher MAPS trial
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.
S3 Leitlinie Palliativmedizin für Patienten mit einer nicht heilbaren Krebserkrankung
Leitlinienprogramm Onkologie der Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgese (2015), S3 Leitlinie Palliativmedizin für Patienten mit einer nicht heilbaren Krebserkrankung, Kohlhammer, Stuttgart.
Advance Care Planning in der Onkologie: Ein Überblick aus klinisch-ethischer Perspektive
Schildmann Jan Krones Tanja, Advance Care Planning in der Onkologie: Ein Überblick aus klinisch-ethischer Perspektive, in Der Onkologe.

Collaboration

Group / person Country
Types of collaboration
Internal Medicine/Multimorbidity net/Neurology/Hematology/Nephrology/Radiooncology/Dermatology Switzerland (Europe)
- Research Infrastructure
Respecting patient choices, University Hospital Melbourne, Austin Hospital Australia (Oceania)
- in-depth/constructive exchanges on approaches, methods or results
- Research Infrastructure
Lighthouse Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
"Letzte Reise" https://www.letztereise.ch/ Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Kaleidos Stiftung Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Interdisziplinäre Arbeitsgruppe - Behinderte Menschen und ACP Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Beizeiten Begleiten/University of Düsseldorf Germany (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Exchange of personnel
Unternehmenskommunikation Universitätsspital Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Universitäten München, Münster Germany (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Research Infrastructure
Swiss Red Cross Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Industry/business/other use-inspired collaboration
Respecting Choices/Gundersen Lutheran Medical Foundation, Inc. United States of America (North America)
- in-depth/constructive exchanges on approaches, methods or results
Palliative zh+sh Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Hofstra North Shore School of medicine United States of America (North America)
- in-depth/constructive exchanges on approaches, methods or results
Praxisgemeinschaft Bauma Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Industry/business/other use-inspired collaboration
Klinik Hirslanden, Chefarzt Anästhesie Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Fachhochschule Nordwestschweiz Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Industry/business/other use-inspired collaboration
Harvard University United States of America (North America)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Verein Rettungssanitäter Schweiz Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Patient decision Aids research group Ottawa Hospital Canada (North America)
- in-depth/constructive exchanges on approaches, methods or results
Krebsliga, Sektion Zürich Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Nationaler Palliative Care Kongress - das Ende leben, das Mögliche planen Talk given at a conference Integration von ACP im Spital und in der Region 16.11.2016 Biel, Switzerland Karzig-Roduner Isabelle; Krones Tanja; Otto-Achenbach Theodore; Loupatatzis Barbara;
Nationalöer Palliativkongress Talk given at a conference „Integration von ACP im Spital“ 16.11.2016 Biel, Switzerland Otto-Achenbach Theodore; Krones Tanja; Karzig-Roduner Isabelle; Loupatatzis Barbara;
„Anästhesie im Kleinspital“. Talk given at a conference Von der Patientenverfügung zu Advance Care Planning 10.09.2016 Meisterschwanden, Switzerland Krones Tanja;
Deutsche Gesellschaft für Palliativmedizin: Palliativkongress - Qualität braucht Miteinander, Mut und Kompetenz Talk given at a conference Mulitprofessionelle Vorausplanung und gemeinsame Entscheidungsfindungen - Studienergebnisse aus der Schweiz 07.09.2016 Leipzig, Germany Otto-Achenbach Theodore; Karzig-Roduner Isabelle;
Palliative Care Fachtagung 2016: Not und Krisen bei unheilbarer Krankheit Talk given at a conference Voraussetzungen für eine erfolgreiche Bewältigung von Krisensituationenaus der Sicht der klinischen Ethik und der Praxis im Spital, im Heim und 16.06.2016 Zürich, Switzerland Loupatatzis Barbara; Otto-Achenbach Theodore; Krones Tanja; Karzig-Roduner Isabelle;
5. Pflegekongress für Intensivmedizin, der Pflegeakademie Talk given at a conference Ethische Dilemmata und Advance Care Planning auf der IPS 30.05.2016 Aarau, Switzerland Krones Tanja;
Advance Care planning International Conference Talk given at a conference Advance Care planning with incapacitated Patients 01.05.2016 Sydney, Australia Krones Tanja;
Adcance Care Planning International Conference Talk given at a conference Advance Care Planning in Switzerland First Results of the MAPS trial 30.04.2016 Sydney, Australia Krones Tanja;
Fachtagung Gerontologie Talk given at a conference Advance Care Planning- Workshop 10.02.2016 Zürich, Switzerland Krones Tanja;
Measuring Outcomes of Clinical ethiucs support services (CESS) MEthods methodology and examples from research practice Talk given at a conference The Example of Advance Care Planning 03.02.2016 Universität Bochum, Germany Krones Tanja;
journée recherche plateforme latine de soins palliatifs Talk given at a conference Projet FNS sur les directives anticipées 26.01.2016 Genf, Switzerland Krones Tanja;
Anästhesie-Symposium Individual talk Advance Care Planning-neue Ergebnisse 05.12.2015 St.Gallen, Switzerland Krones Tanja;
Nationaler Palliative Care Kongress Talk given at a conference "Wie kommt Palliative Care an?" 02.12.2015 Bern, Switzerland Loupatatzis Barbara; Krones Tanja; Karzig-Roduner Isabelle;
Ethiksymposium Kantonsspital Winterthur Talk given at a conference Advance Care Planning 03.11.2015 Winterthur, Switzerland Krones Tanja;
Weiterbildung Kantonsspital Uri Individual talk Ethische Hot Spots 27.09.2015 Uri, Switzerland Krones Tanja;
5th International Conference on Advance Care Planning Talk given at a conference First Results of the MAPS trial 09.09.2015 München , Germany Otto-Achenbach Theodore; Loupatatzis Barbara; Karzig-Roduner Isabelle; Krones Tanja;
Schweizerischen Gesellschaft für Allgemeine Innere Medizin Talk given at a conference Von der Patientenverfügung 31.05.2013 Basel, Switzerland Krones Tanja;
International Society for Advance Care Planning Talk given at a conference Shared decision making and decision ais in Advance care Planning 09.05.2013 Melbourne Australia, Australia Krones Tanja;
nationaler Palliative Care Kongress Poster MAPS trial Konzept 13.11.2012 Biel, Switzerland Krones Tanja; Loupatatzis Barbara;


Knowledge transfer events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
EThiktag Basel Talk 23.03.2017 Basel, Switzerland
Ethiktag USZ Workshop 02.03.2017 Zürich, Switzerland
Neujahrssymposium der Anästhesiepflege am Universitätsspital Zürich Talk 21.01.2017 Zürich, Universitätsspital, Switzerland
Eröffnungssymposium Pallivita Talk 19.01.2017 Zürich, Switzerland
Studienergebnisse MAPS - Bedeutung für die KIM Talk 27.10.2016 Zürich, Universitätsspital, Klinik für Innere Medizin, Switzerland
Jahrestreffen Schweizerische Patientenorganisation: Patientenverfügungen und ACP Talk 25.10.2016 Zürich, Switzerland
ACP - Beratung bei Pro Senectute Talk 05.10.2016 Zürich, Switzerland
Patientenverfügung rund um Reanimationen Talk 29.09.2016 Zürich, Switzerland
KARDIOLOGIE-Nachmittagsfortbildung für Pflegende – gemeinsam mit Zurich Heart House Talk 08.09.2016 Zürich, Switzerland
ACP Beratung in der Krebsliga Talk 08.07.2016 Zürich, Switzerland
"Autonomie in der Medizin" "Autonomie und Beziehung. Selbstbestimmung braucht das Gegenüber". Workshop 07.07.2016 Bern, Switzerland
Kindes- Und Erwachsenenschutzrecht; Europainstitut Talk 22.06.2016 Zürich, Switzerland
Fachtagung Palliative Care zh Talk 16.06.2016 Zürich, Switzerland
ACP und Qualitätsmanagement Talk 14.06.2016 Zürich, Universitätsspital, Switzerland
Nephrologen- Zuweisertreffen Talk 19.03.2016 Zürich, Switzerland
Patientenverfügungen udn Advnace Care Planning- Erfahrungen aus der Schweiz Talk 16.03.2016 Franziskuskrankenhaus, Germany
Advance Care Planning- Regionale Implementierung Talk 03.03.2016 München, Uniklinik Grosshadern, Germany
ACP und Klinische Ethik am USZ Talk 29.02.2016 Zürich, Universitätsspital, Switzerland
Ethische Aspekte einer guten Vorausplanung (Advance Care Planning) bei schwer kranken Patienten- Notfall- und Rehabilitationsentscheide Talk 10.02.2016 WaldSpital, Switzerland
ACP - Implementierung im Pflegeheim Talk 04.02.2016 Effretikon, Switzerland
Advance Care planning- neue Ergebnisse Talk 02.02.2016 Spital Zollikerberg, Switzerland
Weltpalliativtag Workshop 10.10.2015 SChaffhausen , Switzerland
ACP - erste Erkenntnisse aus der MAPS-Studie Talk 03.09.2015 Zürich, Universitätsspital, Switzerland
Jahrestreffen SBK Ethikkommission Talk 01.09.2015 Bern, Switzerland
Organspende und Advance Care Planning Talk 10.03.2015 Zürich, Universitätsspital, Switzerland
ACP in der Palliativsprechstunde Talk 11.12.2014 Zürich, Universitätsspital, Switzerland
Fachtagung palliativ zh/sh Talk 03.07.2014 Zürich, Switzerland
Notfallsymposium Talk 31.10.2012 Zürich , Switzerland


Communication with the public

Communication Title Media Place Year
Talks/events/exhibitions ACP in Pflegeheimen German-speaking Switzerland 2015
Media relations: radio, television Aeschbacher SRF German-speaking Switzerland International 2015
Media relations: radio, television Auch über den ökonomischen Druck reden NZZ International German-speaking Switzerland 2015
Talks/events/exhibitions Entscheidungen am Lebensende German-speaking Switzerland 2015
Media relations: radio, television Patientenverfügung PULS SRF German-speaking Switzerland International 2015
Media relations: print media, online media Ein Mensch hat das Recht irrational zu entscheiden German-speaking Switzerland Western Switzerland 2012

Abstract

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.
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