WELCOME! Evaluation of Moral Case Deliberation and its impact in - - PowerPoint PPT Presentation

Evaluation of Moral Case Deliberation and its impact in Europe: Methods, best practices and future ideas

MINI SYMPOSIUM 14 OCTOBER 2020

WELCOME!

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Welcome!

Who are we, who are you?

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Vario ious kin inds of f CES & MCD evaluation research*

• Registration of use of CES\MCD (e.g. frequency, themes, requesters)
• Evaluation of CES\MCD itself (e.g. process, group, facilitator)
• Evaluation of content of MCD
• Evaluation of quality of deliberation within MCD**
• Changes as perceived by participants (EURO MCD thesis Janine de Snoo, 2020)
• Observed outcomes of MCD***, such as:

– Improved quality of care – Improved decision making – Improved team cooperation – Improved moral competency of professionals

* Schildmann et al (2013). Evaluation of clinical ethics support services. JME, 39(11), 681-5. ** Jellema et al (2017). Evaluating the quality of the deliberation in moral case deliberations, Bioethics. *** Haan et al (2018). Impact of MCD. BMC Medical Ethics.

Importance of CES & MCD evaluation

Importance of evaluation of CES & MCD

Why is evaluation of ethics support & MCD important?

• In order to find out whether CES\MCD actually supports those who

have to deal with moral challenges

• In order to find out whether CES\MCD contributes to
• a better quality of care
• a better team cooperation
• a decreased amount of moral stress

Furthermore

• Evaluation of CES\MCD contributes to shared ownership of CES\MCD
• Evaluation of CES\MCD contributes to strengthening the quality of

CES\MCD and the training of CES\MCD staff

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

The Euro-MCD 2.0

Revision of the Euro-MCD Instrument from 2014 (26 items in 6 categories) 15 items in 3 categories:

• Moral competence
• Moral teamwork
• Moral action

Main changes:

• Shorter and less complex
• Stronger empirical and theoretical basis

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

The Euro-MCD Instrument 2.0

Instruction: Please rate the extent to which you agree on the following statements, when thinking about your daily practice/the MCD session(s) that you participated in. Strongly agree Slightly agree Slightly disagree Strongly disagree I don’t know

Moral Competence

Moral Sensitivity

• 1. I recognize a situation as being ethically difficult
• 2. I am aware of others’ perspectives in ethically difficult situations

Analytical Skills

• 3. I can identify the different values at stake in ethically difficult situations
• 4. I can formulate arguments in favor of and against different courses of action in ethically difficult situations

Virtuous attitude

• 5. I listen with an open mind to others when discussing an ethically difficult situation
• 6. I speak up in ethically difficult situations

Moral Teamwork

We = the people with whom you have participated in the MCD session(s)/the people with whom you work in your daily practice. Open Dialogue

• 7. We openly express our viewpoints in ethically difficult situations
• 8. We all have opportunities to express our viewpoint on ethically difficult situations
• 9. We respect different viewpoints when discussing ethically difficult situations

Supportive Relationships

• 10. We feel secure to share emotions in ethically difficult situations
• 11. We support each other when dealing with ethically difficult situations

Moral Action

Moral decision-making

• 12. We make decisions on how to act in ethically difficult situations
• 13. We base our decisions on moral considerations in ethically difficult situations

Responsible care

• 14. We are responsive to the values and needs of patients and their families in ethically difficult situations
• 15. We are able to explain and justify our care towards patients and their families

Using the Euro-MCD 2.0

3 versions: 1. Before MCD: baseline about daily practice 2. After MCD: about MCD sessions 3. Sometime after MCD: about daily practice

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Current developments

• Translation and pilot studies in the Netherlands and Sweden
• Development of ‘training module’ on Evaluation of MCD
• Collaboration with colleagues in Japan, translation into Japanese
• For new and upcoming updates: check our website: www.euro-mcd.com
• Contact: euromcd@amsterdamumc.nl

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

The varied practice of Moral Case Deliberation in Sweden

(etikronder, etisk reflektion, etikfallreflektion) Mia Svantesson

Associate professor Medical Ethics, RN University Health Care Research Center / Palliative Unit, Karlskoga hospital Region Örebro County/Örebro University, Sweden Minisymposium, Amsterdam 14 Oct 2020 – TO HONOR JANINE!

1

Stockholm

Erwin Bishofberger Åsa Hällström Pernilla Pergert

Moral Case Deliberation Moral Case Deliberation

Norrbotten Västerbotten

Stockholm Gothenburg Skåne

Örebro/Karlskoga

Håkan Thorsén Mia Svantesson

Göteborg

Daniel Brattgård Cecilia Lundmark, Lars Sandman

Skåne

Anders Castor

Uppsala

Mats G Hansson

Norrbotten

Rose-Marie Isaksson

Västerbotten

Anna Söderberg Catarina Fischer-Gr.

Uppsala

Västerås

Hospital church, bottum-up

Västerås Örebro Linköping

• 1. I fear I have not the complete picture of the ethical landscape in Swedish

healthcare, but I have got help to navigate. MCD is mostly spread in hospitals in the big cities, but at some places it is also out in the region and municipalities. 2

Stockholm

Erwin Bishofberger Åsa Hällström Pernilla Pergert

Historic prominent figures Historic prominent figures

Norrbotten Västerbotten

Stockholm Gothenburg Skåne

Örebro/Karlskoga

Håkan Thorsén Mia Svantesson

Göteborg

Daniel Brattgård Cecilia Lundmark, Lars Sandman

Skåne

Anders Castor

Uppsala

Mats G Hansson

Norrbotten

Rose-Marie Isaksson

Västerbotten

Anna Söderberg Catarina Fischer-Gr.

Uppsala

Västerås

Hospital church, bottum-up

Västerås Örebro Linköping

”By listening to other perspectives and other experiences related to one particular patient story, the participants imagine alternative horizons of moral experience and explore a multitude of values”

• 1. I will first raise historic prominent persons regarding ethical reflection.
• 2. The men have a background as priests and the female as a nurse. What they

have in common is being charismatic persons.

• 3. Mats G Hansson, Imaginative ethics, criticism against principle-based ethics

3

Stockholm

Erwin Bishofberger Åsa Hällström Pernilla Pergert

Ethics organisation/work Ethics organisation/work

Norrbotten Västerbotten

Stockholm Gothenburg Skåne

Örebro/Karlskoga

Håkan Thorsén Mia Svantesson

Göteborg

Daniel Brattgård Cecilia Lundmark Lars Sandman

Skåne

Anders Castor

Uppsala

Mats G Hansson

Norrbotten

Rose-Marie Isaksson

Västerbotten

Anna Söderberg Catarina Fischer-Gr.

Uppsala

Västerås

Hospital church, bottum-up

Västerås Örebro Linköping

• 1. Mcd is very much dependent on the ethics work organisation. It is not common

with clinical ethics commities and usually the ethics work organised in hospitals and regions are called ethics groups or ethics councils. Many fight for mandate to work and discuss what they should do. I will describe one good example that now struggle....

• 2. Rose-Marie Isakssson, National ethics network, also organisor of ethics work in

her region.

• 3. Nordic Pediatric oncology network- implementing Dilemma method Bert
• Molewijk. Anders Castor Children care ethics council, also ethics consultation

4

Stockholm

Erwin Bishofberger Cecilia Bartholdson Pernilla Pergert

Norrbotten Västerbotten

Stockholm Gothenburg Skåne

Örebro/Karlskoga

Håkan Thorsén Mia Svantesson

Göteborg

Daniel Brattgård Cecilia Lundmark, Lars Sandman

Skåne

Anders Castor

Uppsala

Mats G Hansson Marit Silén

Norrbotten

Rose-Marie Isaksson

Västerbotten

Anna Söderberg Catarina Fischer-Gr.

Uppsala

Västerås

Hospital church, bottum-up

Västerås Örebro Linköping

Methods and research Methods and research

The modified version of the ‘Karolinska model for ethical analysis’

• 1. Anna Söderberg and Catarina Fischer-Grönlund describe their method in a paper

: The method is by Habermas’s theory of communicative actions.

• 1. Start with ‘Please tell me about an ethically troubling or challenging work

situation’.

• 2. One of the participants presents a situation
• 3. The facilitator asks each participant to reflect on it and the ethical problems

involved.

• 4. The facilitator stirs the dialogue towards an interpretation and confirmation of

the nature of the ethical value conflict and its meaning for their clinical work.

• 5. asks to suggest ways of handling the situation.

How: “The leader endeavoured to maintain a respectful attitude, allowed everyone to speak and focused on how to understand, handle or resolve the value conflict”.

• 2. Cecilia/ Pernilla MCD, similar steps described by Håkan Thorsén and Cecilia

Lundmark :

• 1. Briefly present the background/case
• 2. Identify the ethical problem
• 3. Bring in the relevant facts
• 4. Identify the parties involved
• 5. Identify what is at stake (interests, values, and moral

5

principles)

• 6. Identify available action alternatives
• 7. Evaluate each alternative action
• 8. Carry out the ethical argumentation; try to reach

agreement on a recommendation

• 3. But Pernilla says they now use the Dilemma method instead. And what is the

big difference. What I see the major difference is the focus in the Dilemma method about What is really the ethical question? And that there is a case owner and the moment of heat.

• 4. We are now going to collaborate about a Swedish translation and adaption of

Euro-MCD 2.0 5

Stockholm Norrbotten Västerbotten

Stockholm Gothenburg Skåne

Örebro/Karlskoga

Håkan Thorsén Mia Svantesson Dara Rasoal

Göteborg

Cecilia Lundmark

Skåne

Anders Castor

Uppsala

Marit Silén

Norrbotten

Rose-Marie Isaksson

Västerbotten

Anna Söderberg Catarina Fischer-Gr.

Uppsala

Västerås

Hospital church, bottum-up

Västerås Örebro Linköping

The Euro-MCD research The Euro-MCD research

The Euro-MCD project

• the Swedish content
• 1. But from descriptions of procedures, do the facilitators do as they say they do?
• 2. In the Swedish part of the project we did audio-record 70 MCDs at 10

workplaces and we also interviewed the facilitators and managers about the context. 6

Swedish workplaces in the Euro-MCD project

• Moral reasoning
• Reflections on the psychosocial work environment
• Assumptions about the patient’s psychosocial situation
• Facts about the patient’s situation
• Concrete problem-solving
• Process
• 1. What we found here was indeed moral reasoning, about what is good and

right and trying to understand the needs of patient and families. More or less, blue columns

• 2. But what we also found was Refletions on the psychosocial work environment,

about emotional exhaustion of workload and burdensome interactions with patients/family and frustration with organization and about roles and collaboration

• 1. You see on unit 1 and 10, moral reasoning dominate, 1 philosopher facilitator,

10 chaplains starting the MCD about the definition of an ethically difficult situation and bringing back to the question.

• 5. We have interviewed the managers also and we can see how context influences

the content of MCD. For example, you see on Medical unit 8, Focus on patient is very little and psycho-social reflection dominate, during MCD time, the manager quit and did not get a replacement and a big reorganization of the hospital. 7

“Like sailing, in tail- and headwind”

To give the team self-confidence to navigate their own reflections To beat a course against homogeneity of thoughts in a headwind To support the security of the team To accommodate the group’s needs in a tailwind To decide on the course with focus on the moral dimension

• 1. In the interviews with the facilitators, despite different narratives, we could see

common denominators and to understand, we used a sailing metaphor.

• 2. To support the security of the team: Here a space for emotional relief and

psychosocial reflection of their own situation.

• 3. To give the team self-confidence, stimulate moral reasoning, navigate from

psychosocial reflection from focus on themselves to focus on the patient situation and the ethics. This varied in the audio recordings

• 4. To beat a course against homogenity, provoke. Coming from outside looking,

why do you do in this way,

• 5. To accomodate to the group’s need, others focused on this and this contained

psychosocial reflections.

• 6. To decide on the course, an example of not doing that you say you do. One

facilitator ….. 8

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Measuring changes after two years of MCD: the Oslo PET study

Context of study (‘PET study’)

• 7 wards within 3 Norwegian mental health care institutions started to

implement MCD (or ethics reflection groups) sessions on moral challenges related to the use of coercion

• At every ward, employees were trained as MCD facilitators by the Centre
• f Medical Ethics in Oslo
• MCD took place every 2 to 4 weeks
• Unique mixed methods design with T0-T1-T2 (cross-sectional survey);

today focus on the quantitative results regarding changes in employees attitudes and scores (paper about to submit)

• In total around 30 PET publications: see project website:

https://www.med.uio.no/helsam/forskning/prosjekter/pet/publikasjoner/

Results: number of observations

Baseline (T0) n = 390 1-year (T1) n = 348 2-year (T2) n = 271

Participant characteristics (all observations)

Participant characteristics (all observations)

Participant characteristics (all observations)

MCD\ERG participation (T1 & T2 separately)

Case presentation (T1 & T2 separately)

Average change in outcomes (adjusted)

** * ***

* p<.05 ** p<.01 *** p<.001

Increase in seeing coercion as ‘Offending’ largest in those who participated in MCD\ERG 6 times or more

Conclusions rela lated to to (measuring) changes after MCD

Changes over time

• MCD participants were significant:
• More critical about the use of coercion (‘Offending’)
• More positive about the way they involved patients in situations

around coercion

• More positive about the way they dealt with disagreements in

their team

• Most of these quantitative findings were confirmed by analysis of the

qualitative data (e.g. focus groups at T1 & T2)

• However: differences were generally small in absolute terms possibly due

to the low amount of longitudinal data Measuring changes over time

• Measuring changes over time is difficult yet important; needs to be further

developed (e.g. using control groups and cluster randomisation)

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Moral case deliberation on the ICU Learning in Practice

Niek Kok MSc Jelle van Gurp PhD, Astrid Hoedemaekers MD PhD, Hans van der Hoeven MD PhD, Marieke Zegers PhD

In this talk…

▪ Background of the project ▪ Study design ▪ Action research ▪ Current challenges ▪ Conclusions

Background: who participates?

All ICU professionals in the Radboudumc in:

• 1. Two adult ICUs
• 2. One pediatric ICU (PICU)
• 3. One step-down unit (SDU)
• 4. One weaning unit

And the ICU professionals in the CWZ:

• 1. adult ICU/SDU

What are the research questions?

▪ Two overarching questions:

1) Does MCD lead to less moral distress and less burnout? 2) will MCD lead to collective/departmental learning as it adresses morally distressing experiences? ▪ Ongoing research, so no definitive results yet…

What is the study design?

Defining features: ▪ Mixed methods action research ▪ Following the logic of a stepped wedge trial (SWT) ▪ 6 ICUs organize 90 MCDs in 2 years Data collection: ▪ Validated surveys on burnout (MBI), moral distress (MDS-R) and culture of care (CoCB) ▪ Interview/ethnographic data to assess collective learning

What does the SWT logic look like?

IC

1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 5 6 7 8 9 10 11 12

1 2 3 4 5 6

▪ Does MCD lead to less moral distress and less burnout?

How will we establish collective learning outcomes?

IC

1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 5 6 7 8 9 10 11 12

1

x x x x

2 3

x x x

4 5 6

▪ Using qualitative research methods, we assess whether there are patterns.

Action research

▪ Every two months: meeting of representatives from all units:

1. ICU nurses 2. ICU physicians 3. Head nurses 4. Ethicists 5. Epidemiologist

▪ What do we hope to achieve through MCD? ▪ In what way can MCD best fit the needs of the ICU?

Action research

ICU professionals themselves determine which case will be deliberated about. ICU representative express an interest in:

▪ Creating a network of ICU professionals that signal moral dilemmas ▪ Stimulating colleagues to engage in MCD ▪ Early recognition of moral dilemmas: greater moral sensitivity ▪ After early recognition: organizing prospective MCDs

What are challenges?

▪ …COVID-19

1. A lot of morally distressing/morally injurious experiences 2. But logistical difficulties 3. In terms of the trial: COVID-19 has increased feelings of burnout 4. Changes in the constellation of items that lead to moral distress

What are moral distresses?

0,5 1 1,5 2 2,5 3 3,5 4

5 greatest moral distresses, ranked at post-peak-COVID-19 time, 1st wave (March-May)

dec-19 jun-20

Concluding remarks

1. Important to evaluate outcomes of MCDs together with professionals 2. Trial desings can be rigid, but also provide

• pportunities

3. ICU context/COVID-19 poses challenges, therefore action research is needed

Thank you for your attention!

Niek Kok MSc

Niek.kok@radboudumc.nl

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Why is Moral Case Deliberation important for a Hematology Department?

Positive Aspects MCD

• Broader reflection
• View from different aspects
• Less assertive colleagues air their views.
• Being conscious of priorities
• Time and space to think in an orderly manner
• Same wave-length

What is the best road to recovery for the patient?

Defining the dilemma

Case

63 year old man with multiple myeloma

• Neurotoxicity due to former treatment
• ADL dependent
• Complex Care
• Limited social network
• “Home-sickness”

• Nursing team: Objections:
• Limited social network
• Recognition/acknowledgement of physical complaints &

compliance to treatment.

• Physicians team: Allogenic transplantation:
• Better overall survival
• Experimental – phase 3 trial
• A: Allogeneic transplantation
• B: No allogeneic transplantation

Naming of the Values & Standards

Values Standards Patient Responsibility I want to be here for my wife & children Home-sickness I still want to see the sea Wife Loneliness I can’t cope without my husband Nurse Concern I doubt the capability of patient & partner Honesty I think that there will be less quality of life Hematologist Responsibility I want to give this patient the best

• pportunities

Drive If possible I would like to offer him an experimental treatment

Everyone considers their own pro’s and con’s

Agreements and Differences

Evaluation

Conclusion

• A monthly moral case deliberation creates a critical

and respectful multidisciplinary consultation to improve the treatment and selection of patients before stem cell transplantation.

Discussion

• Every patient is in need of MCD?
• Empower your team; start MCD!

PROGRAM

13.00 - 13.15 WELCOME: Evaluation of Moral Case Deliberation (MCD) in in Europe Prof.dr. Bert Molewijk - Amsterdam UMC, dept. of Ethics, Law and Humanities METHOD: Presenting the Euro-MCD 2.0 for assessing outcomes of MCD Janine de Snoo MA MSc - Amsterdam UMC, dept. of Ethics, Law and Humanities 13.15 - 14.00 EXAMPLES FROM SWEDEN, NORWAY AND NL: The varied practice of MCD in Sweden - Dr. Mia Svantesson-Sandberg - University of Örebro Measuring changes after two years of MCD in Oslo - Researchers from Center of Medical Ethics in Oslo MCD on the ICU: learning in practice - Dr. Jelle van Gurp and Niek Kok MSc – Radboudumc Nijmegen 14.00 - 14.15 BREAK 14.15 – 15.00 FUTURE IDEAS: Pitches and group interaction on innovative and inspiring developments in the field of evaluation of MCD

• Prof. Josée Zijlstra – Amsterdam UMC, dept. of Hematology
• Dr. Pernilla Pergert – Karolinska Institutet, Stockholm
• Dr. Margreet Stolper – Amsterdam UMC, dept. of Ethics, Law and Humanities

ONLINE MINI SYMPOSIUM 14 OCTOBER 2020 Evaluation of Moral Case Deliberation and its impact in Europe: methods, best practices and future ideas

Symposium: Oct 14, 2020 Pernilla Pergert 1 Future of Evaluating Clinical Ethics Support in Childhood Cancer Care

Pernilla Pergert, Paediatric Nurse Specialist, Associate Professor

Leader of the Childhood Cancer Healthcare Research group, Karolinska Institutet Webb: https://ki.se/en/kbh/childhood-cancer-healthcare-research or ki.se

Research group members: Pernilla Pergert, Associate Professor Cecilia Bartholdson, Clinical Researcher Elisabet Tiselius, Associate Professor Margareta af Sandeberg, Lecturer PhD students Carina Rinaldo Charlotte Weiner Päivi Ventovaara

Childhood Cancer Healthcare Research

Intercultural Care & Clinical Ethics

Collaborating researchers Bert Molewijk, Professor Anders Castor, MD, PhD Klas Blomgren, MD, Professor

A joint group of two Nordic societies in paediatric haematology and

• ncology: NOPHO (physicians/researchers) and NOBOS (nurses)

The intention is to be a Nordic competence group that offers Clinical Ethics Support Services (CESS) in Nordic Pediatric Cancer Care.

• Nordic ethics course: guiding Ethics Case Reflection (ECR) rounds

(2017-2018; 2019-2021). In collaboration with Prof. Molewijk.

NOPHO/NOBOS Working Group on Ethics Clinical ethics includes studies on Clinical Ethics Support (CES) and ethics case reflection (ECR) rounds in the healthcare team as well as studies on the ethical climate and moral distress in childhood cancer care. Research projects — Clinical ethics Research projects — Clinical ethics Ethical challenges Experiences of ECR rounds

• Participating in ECR rounds
• Education in facilitating ECR

rounds

• Facilitating ECR rounds

Ethical climate Moral distress

Bartholdson, C., Lützén, K., Blomgren, K., & Pergert, P. Clarifying perspectives: Ethics case reflection sessions in childhood cancer care. Nursing Ethics. 2016 Bartholdson, C., Molewijk, B., Lützén, K., Blomgren, K., & Pergert, P. Ethics case reflection sessions: Enablers and barriers, Nursing Ethics. 2018

Preliminary results: HCPs want to:

• increase their skills in analysing ethical dilemmas
• practice in safe environments

Data collection: Individual interviews (n=59) Participants: Trainees in facilitating ECR rounds. Analysis: Qualitative analysis Experiences of an education in facilitating ECR rounds

1 2 3 4 5 6

Symposium: Oct 14, 2020 Pernilla Pergert 2

Research projects — Clinical ethics Ethical challenges Experiences of ECR rounds

• Participating in ECR rounds
• Education in facilitating ECR

rounds

• Facilitating ECR rounds

Ethical climate Moral distress Outcomes

• f ECR

rounds

Weiner, C., Pergert, P., Molewijk, B., Castor, A. & Bartholdson C. Perceptions of important outcomes of ethics case reflection rounds: a qualitative study among healthcare professionals in childhood cancer

• care. 2020; Submitted for publication.

Data collection: Euro-MCD Participants: HCPs at all paediatric oncology centres in

• Sweden. The participants (n=183, about 70% response rate)

represented eight professions. Analysis: Qualitative thematic analysis Outcomes of MCD

Preliminary results

• Interprofessional well-being;
• Reaching a professional comfort zone
• Improved quality of care
• Understanding of the family situation
• A common care plan
• Supportive care for the child and family

Research projects — Clinical ethics Ethical challenges Experiences of ECR rounds

• Participating in ECR rounds
• Education in facilitating ECR

rounds

• Facilitating ECR rounds

Ethical climate Moral distress Outcomes

• f ECR

rounds

Consequences

• n patient

care

Preliminary results

• HCPs notice that they know too little about what is

important to the child and the family, and consequently needs to ask for their perspectives.

Consequences on patient care Data collection: Individual interviews (n=59) Participants: HCPs at all paediatric oncology centres in Sweden who participated in ECR rounds and subsequently cared for the patient. Analysis: Qualitative thematic analysis

There is a need for a greater involvement of patients and families in CESS to increase mutual understanding and understanding of the family situation but it is important how this is organized so that everyone is safe.

Conclusion

• How can we increase patient/family involvement in

CESS and evaluate this?

• How can patients/families be involved in CESS in a

way that increases mutual understanding (everyone has a say) and ensures that everyone is safe

• How can we evaluate CESS involving patients and

families? Discussion questions

7 8 9 10 11 12