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Decision making practice at the end of life. The case of general practice.

English title Decision making practice at the end of life. The case of general practice.
Applicant Liebig Brigitte
Number 139270
Funding scheme NRP 67 End of Life
Research institution Institut für Kooperationsforschung und -entwicklung Hochschule für Angewandte Psychologie FHNW
Institution of higher education University of Applied Sciences and Arts Northwestern Switzerland (without UTE) - FHNW
Main discipline Internal Medicine
Start/End 01.08.2012 - 30.04.2015
Approved amount 173'550.00
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All Disciplines (7)

Discipline
Internal Medicine
Health
Communication sciences
Sociology
Psychology
Applied psychology
Social work

Keywords (8)

survey; decision making practice; agency; general practitioner; group discussion; end-of-life care; structure; nurses

Lay Summary (German)

Lead
Die Entscheidungsfindung in der hausärztlichen Betreuung von unheilbar kranken und sterbenden Menschen stellt eine komplexe Situation dar. Mit dem Projekt sollen Hinweise für die Aus- und Weiterbildung sowie die Verbesserung der Strukturen ambulanter Palliativversorgung gewonnen werden.
Lay summary

Hintergrund
Hausärztinnen und -ärzte spielen eine wichtige Rolle bei der Begleitung von unheilbar kranken oder sterbenden Menschen. Gemeinsam mit Patienten, Angehörigen und Pflegekräften müssen sie Entscheidungen treffen, wenn es um die Überweisung in ein Spital oder Hospiz, um Symptomlinderung oder um einen Therapieabbruch geht. Über die Voraussetzungen und Herausforderungen der Entscheidungsfindung in der hausärztlichen Palliativbetreuung und -versorgung ist bis heute erst wenig bekannt.

Ziel
Das Projekt zielt darauf ab, die Entscheidungsfindung am Lebensende zu untersuchen – unter Berücksichtigung der Beziehung zwischen Hausarzt oder -ärztin und Patienten, der Kommunikation mit Angehörigen sowie der Kooperation mit Pflegekräften, mit Angehörigen und Spitälern. Zudem erforscht es, wie bedeutend die gesetzlichen Bestimmungen, die kantonal unterschiedlichen Versorgungsstrukturen, die Patientenverfügungen oder die normativen Vorstellungen von ‚gutem Sterben‘ für die Entscheidungen am Lebensende sind. Neben der Analyse von Rahmenbedingungen der Primärversorgung am Lebensende auf kantonaler und Bundesebene werden Interviews mit gesundheitspolitischen Akteuren, Patientenorganisationen und Vertretern der Hausärzte und -ärztinnen sowie mit Pflegekräften durchgeführt. Überdies werden Hausärzte und -ärztinnen, Pflegekräfte und Angehörige von sterbenden Menschen aus der deutschen, französischen und italienischen Schweiz in Gruppendiskussionen zu Bedingungen und Prozessen der Entscheidungsfindung am Lebensende befragt. Die Auswertung der Gespräche soll zentrale Faktoren und Indikatoren einer gelungenen Entscheidungspraxis in der hausärztlichen palliativen Betreuung und Versorgung bestimmen.

Bedeutung
Die Erkenntnisse der Studie sollen zu einer Verbesserung der hausärztlichen Palliativbetreuung in der Schweiz beitragen, indem sie die für eine optimale Entscheidungspraxis notwendigen Kompetenzen von Hausärzten und -ärztinnen benennen und die Bedingungen und Herausforderungen der hausärztlichen Begleitung am Lebensende kenntlich machen.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (French)

Lead
La prise de décisions dans l’accompagnement par le médecin de famille de personnes atteintes de maladies incurables ou se trouvant en fin de vie est une situation complexe. Ce projet vise à fournir des éléments pour la formation et le perfectionnement ainsi que pour l’amélioration des structures de prise en charge palliative ambulatoire.
Lay summary

Contexte
Les médecins de famille jouent un rôle important dans l’accompagnement des personnes atteintes de maladies incurables ou se trouvant en fin de vie. Avec le patient, les proches et le personnel soignant, ils doivent prendre des décisions concernant le transfert à l’hôpital ou à l’hospice, les traitements visant à soulager les symptômes ou l’abandon d’un traitement. On ne sait pas encore grand-chose sur les conditions et les défis qui se posent par rapport à la prise de décisions dans le suivi et le traitement palliatif par les médecins de famille.

But
Ce projet a pour but d’étudier la prise de décisions en fin de vie, en tenant compte de la relation entre médecin de famille et patient, de la communication avec les proches et de la coopération avec le personnel soignant, les proches et les hôpitaux. Il examine en outre l’importance que revêtent le cadre légal, les différences cantonales entre les structures de prise en charge, les directives anticipées ou les conceptions normatives du «bien mourir» pour les décisions en fin de vie. En plus d’une analyse des conditions cadres de la prise en charge primaire en fin de vie à l’échelon cantonal et national, nous réaliserons des entretiens avec des acteurs de la politique de la santé, des organisations de patients et des représentants des médecins de famille ainsi que du personnel soignant. Par ailleurs, nous interrogerons les médecins de famille, le personnel soignant et les proches de personnes en fin de vie de Suisse alémanique, romande et italienne dans le cadre de discussions de groupe sur les conditions et les processus de prise de décisions en fin de vie. L’analyse des entretiens devrait permettre de dégager les facteurs et indicateurs essentiels pour une prise de décisions satisfaisante dans le suivi et le traitement palliatif par les médecins de famille.

Portée
Les découvertes de cette étude devraient contribuer à améliorer la prise en charge palliative par les médecins de famille en Suisse, en précisant les compétences nécessaires à une prise de décision optimale et en révélant les conditions et défis qui sous-tendent l’accompagnement en fin de vie par les médecins de famille.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

Lead
Decision-making in the primary care of terminally ill and dying persons is a complex situation. This study will develop recommendations for education and training and for improving the structures of outpatient palliative care.
Lay summary

Background
Primary care physicians (general practitioners) play an important role in the support of termi-nally ill or dying patients. Together with patients, family members and nursing staff, they have to make decisions when it comes to admission to hospital or hospice, symptom relief or with-drawing treatment. Today we still know little about the prerequisites and challenges of decision-making on palliative care in general practice settings.

Aim
The study aims to investigate decision-making at the end of life, taking into consideration the primary care physician–patient relationship, communication with family members and co-operation with nursing staff, family members and hospitals. In addition, it will examine how important legal regulations, different supply structures across the cantons, patient advance directives and normative notions of "good dying" are for decisions at the end of life. In addition to analysis of the framework conditions of primary care at the end of life at the cantonal and national levels, the research team will interview health policy actors, patient organisations and representative primary care physicians and nursing staff. Further, primary care physicians, nursing staff and family members of dying persons from the German-, French-, and Italian-speaking parts of Switzerland will be surveyed in group discussions on the conditions and processes of decision-making at the end of life. The analysis of the interviews will uncover central factors and indicators for successful decision-making on palliative care in general practice settings.

Significance
The results of the study will contribute towards improving palliative care in general practice settings in Switzerland by identifying the necessary competencies on the part of primary care physicians for optimal decision-making and by describing the conditions and challenges of palliative support at the end of life.

Direct link to Lay Summary Last update: 18.06.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
Conditions and challenges of Palliative Home Care: The Case of Family Physicians in Switzerland
Alvarado Vanessa & Liebig Brigitte (2015), Conditions and challenges of Palliative Home Care: The Case of Family Physicians in Switzerland, in Primary Health Care, 5(1), 1000180 -1000186.
Implémentation des normes légales dans les situations de fin de vie : le cas du Canton de Vaud
Darbellay K. Voll P. & Liebig B. (2014), Implémentation des normes légales dans les situations de fin de vie : le cas du Canton de Vaud, in pallaitive.ch, Zeitschrift der Schweiz. Ges. für palliative Medizin, Pflege und Begleitung, 4, 32-35.
Nationales Forschungsprogramm «Lebensende» (NFP 67). Die Rolle des Hausarztes in der Palliative Care wird wissenschaftlich untersucht. Primary Care, 13 (6), 110-111.
Bally Klaus, Liebig Brigitte (2013), Nationales Forschungsprogramm «Lebensende» (NFP 67). Die Rolle des Hausarztes in der Palliative Care wird wissenschaftlich untersucht. Primary Care, 13 (6), 110-111., in Primary Care, 13(6), 110-111.
Unterstützung und Ressourcen der hausärztlichen Palliativversorgung - ein Vergleich dreier Schweizer Kantone. Palliativ ch, 3, 32-37
Alvarado Vanessa & Liebig Brigitte (2013), Unterstützung und Ressourcen der hausärztlichen Palliativversorgung - ein Vergleich dreier Schweizer Kantone. Palliativ ch, 3, 32-37.

Collaboration

Group / person Country
Types of collaboration
Prof. Dr. med Peter Tschudi & Dr. med Hans-Ruedi Banderet Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Dr. med Dagmar Haller-Hester, Univ. Genève Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Prof. Dr. med. Thomas Rosemann, UniversitätsSpital Zürich Institut für Hausarztmedizin der Universit 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, Gemeinsam Handeln Talk given at a conference Self-determination at the end-of-life. Challenges of shared decision making in palliative home care 26.11.2014 Biel, Switzerland Liebig Brigitte; Alvarado Vanessa;
3rd Swiss Symposium on Health Services Research Poster Zusammen Entscheiden am Ende des Lebens – Herausforderun-gen in der Zusammenarbeit zwischen Hausärzten und Pflegenden 04.11.2014 Bern, Switzerland Liebig Brigitte; Alvarado Vanessa;
3rd Swiss Symposium on Health Services Research, Poster Implémentation des normes légales en situation de fin de vie dans le Canton de Vaud 04.11.2014 Bern, Switzerland Voll Peter; Darbellay Karine;
EFPC conference, Twinning Population Health and Primary Care Talk given at a conference Multiple professional visions and inter-professional communication at the end-of-life: challenges for Swiss family doctors 01.09.2014 Barcelona, Spain Carassa Antonella; Liebig Brigitte; Piccini Chiara; Alvarado Vanessa;
EFPC conference, Twinning Population Health and Primary Care Talk given at a conference Primary Palliative Care - Challenges and Resources of Family Doctors. The Case of Switzerland 01.09.2014 Barcelona, Spain Liebig Brigitte; Alvarado Vanessa;
Swiss Family Doc Conference, Talk given at a conference Kooperation zwischen Hausärzten und Pflegekräften in der hausärztlichen Palliativbetreuung. Herausforderungen und Massnahmen 28.08.2014 Zürich, Switzerland Alvarado Vanessa; Liebig Brigitte;
National Research Conference on Palliative Care Talk given at a conference Rolle und Verantwortung der Hausärzte in der Betreuung am Lebensende. 26.11.2013 Bern, Switzerland Liebig Brigitte;
National Research Conference on Palliative Care Poster Decision Making in General Practice Settings at the End of Life. 26.11.2013 Bern, Switzerland Liebig Brigitte; Alvarado Vanessa;
6. Symposium für Hausarztmedizin Talk given at a conference Palliativmedizin in der Hausarztpraxis 11.11.2013 Basel, Switzerland Bally Klaus; Gudat Keller Heike R.;
Symposium Versorgungsforschung in der Hausarztmedizin Talk given at a conference Stärken und Schwächen der Betreuungsqualität am Lebensende – die Sicht der Hausärzte. 06.11.2013 Bern, Switzerland Bally Klaus;
Family Doc Conference Poster Decision Making in General Practice Settings at the End of Life. 29.08.2013 Bern, Switzerland Carassa Antonella; Piccini Chiara; Bally Klaus; Gudat Keller Heike R.; Alvarado Vanessa; Voll Peter; Liebig Brigitte; Darbellay Karine;
SwissFamilyDocs Conference Talk given at a conference Sterben zu Hause – Wunsch oder Wirklichkeit 29.08.2013 Bern, Switzerland Bally Klaus; Gudat Keller Heike R.;
MedArt Basel, Fortbildungsveranstaltung der Universitätskliniken Talk given at a conference End of Life Care zu Hause 17.06.2013 Basel, Switzerland Bally Klaus; Gudat Keller Heike R.;
End-of-Life: Kick-off-Meeting of the NRP 67 Talk given at a conference Decision making practice at the end of life. The case of general practice. 21.09.2012 Solothurn, Switzerland Carassa Antonella; Gudat Keller Heike R.; Liebig Brigitte; Voll Peter; Bally Klaus;


Self-organised

Title Date Place
Workshop: Palliative Care in Schweizer Hausarztpraxen - Ressourcen und Bedürfnisse; Swiss Family Doc Conference 27.8. 2015 14.05.2015 Bern, Switzerland

Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Vielfalt in der Pflege; Diversity in Nursing 04.06.2014 Basel, Switzerland Liebig Brigitte;


Self-organised

Title Date Place
Decision making practice at the end of life 22.11.2014 Lugano, Switzerland
Workshop: Decision making practice at the end of life 23.10.2014 Luzern, Switzerland
Workshop: Decision making practice at the end of life 02.10.2014 Lausanne, Switzerland

Abstract

Internationally, little is known about the requirements for prudent decision-making practice at the end of life - as a core issue of high quality care for patients. As a complex process, involving different actors in very different, asymmetrical roles, decision making at the end-of-life still lacks thorough understanding and practical mastering. This holds even more for decision making in general practice. General practitioners (GPs) play a key role in the treatment and care for terminally ill men and women in Switzerland. The aim of this project is to identify requirements and challenges related to core elements of decision making at the end of life - focusing on GPs in Switzerland. Among these elements - which we summarize as ‘decision making practice’ here - we may count the meaning and use of normative regulations and guidelines, the communicative and interactive decision making with patients/relatives, the collaboration between GPs with families, health professionals and organizations, as well as ethical considerations and reflexivity of GPs. Starting from sociological and organizational theory we conceive decision-making practice at the end of life as individual intentional activity embedded into social/local environments. From this perspective general practice constitutes a specific setting, characterized - to speak with Giddens (1984) - by specific constraints and opportunities. Besides supply structures in palliative care or ethical guidelines, the type of surgery (single handed practice, doctor owned group practice, third party owned GP work such as in certain HMO) constitutes a specific framework of institutional constraints which influence, so we assume, decision making practice of GPs. On the other hand decision-making of GPs is (re-)shaping the structural framing of end-of-life care by reflexivity and everyday action. The study will analytically inter-relate structure and agency of decision making. The study follows a mixed-method design, i.e. the (sequential) use of qualitative and quantitative methods. Besides the in-depth reconstruction of key features, challenges and requirements of the decision-making practice in GP surgery on the basis of group discussions (with GPs, nurses and relatives), a survey on GPs and hospital based specialist physicians, as well as to nurses in ambulatory and institutional settings shall allow for generalization on factors influencing decision making practice and outcome of decision-making. Data will be set in relation to three culturally different regions, namely the German, French and Italian speaking language region of Switzerland, which are known to be characterized by considerable socio-cultural differences, and different degrees of the ‘dissemination’ of palliative care. On the level of results (and partly on data level) the Swiss findings and data will be compared to other European countries, especially with cooperating partners from the Benelux countries and Great Britain. As outcome the project intends to draw a whole picture of decision-making practice by GPs. It will reveal constraints and challenges, which allows for identifying current deprived areas of end-of-life supply structures as well as indicators of ‘good decision-making practice’. It will provide knowledge how to support, develop and frame decision making practice at the end of life in general practice on individual and structural level. The results and ‘products’ of the study will empower GPs and collaborating health care providers working single-handed, in group networks, in nursing homes and other organizations. For GPs and collaborating health professionals, health care institutions and associations, the federal office of public health, and cantons and municipalities, patient support organizations, schools and universities, it will offer a conceptual and evaluative framework to identify and develop the quality of decision-making practice at the end-of-life in primary care.
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