Table 2.
Final version of the ethics support tool: the competence consultant (in Dutch: de ‘Wilsbekwaamheidswijzer’)
| A. Clarifying information | 1. Clarify your starting point: What is your initial question?* |
| I want to use this tool as I do not know what my doubt exactly is or because I (mainly) doubt about: | |
| • If this person is competent for the decision at stake (advice to do step A and eventually B, C and D) | |
| • How to involve this decisional incompetent person in the decision-making process (advice to skip step A and do step B, C, D) | |
| • How to involve this decisional competent person in the decision-making process (advice to skip step A and do step B, C, D) | |
| 2. Clarify the case: | |
| • Who is the client? | |
| • How sure are you about the gender dysphoria diagnosis, and is this relevant for your doubts? | |
| • What is the decision at stake? | |
| • Who is involved? Describe stakeholders shortly (parents/colleagues etc.) | |
| • What is the current situation? | |
| • What information do you miss at this point? | |
| 3. Clarify the competence for the decision at stake: | |
| - Information box about decisional capacity (4 criteria, assessment, factors, incompetence, alternative views, external sources*) | |
| - Describe your impression for each of the 4 criteria | |
| - In case of incompetence: describe the representative persons* | |
| 4. Clarify factors that might influence the competence | |
| - Factors that might play a role: age, psychiatric diseases, lack of supportive contexts and intelligence/intellectual disabilities | |
| - Describe which factors eventually play a role in this case | |
| - How to deal with these factors? (Examples: waiting or step-wise approach, investment in education and social system) | |
| B. Identifying doubts and moral questions | 1. Consider step A and think about: what do you find hard? What is your doubt? |
| 2. Does this refer to the treatment or diagnose, or to the competence and decision-making? Please mind that this tool is primarily meant for the latter | |
| 3. What moral themes do you see? For example: fertility wishes, discussing consequences, vulnerable children, contact with parents* | |
| 4. Clarify the values at stake and the perceived importance of these values | |
| - What values play a role? Examples in a word cloud: carefulness, happiness, beneficence, control, no harm, protection, respecting autonomy, best interests of adolescent, freedom, openness, attention, good care, solidarity, trust, information, respect, responsibility, tailoring care and togetherness* | |
| - Describe for each value: what do you have to do according to this value? What norm(s) is/are involved?* | |
| - Consider: what values are in conflict?* | |
| - Could you make a range of values from most to least important? | |
| C. Guidance for conversations | 1. Define the persons or parties that you need to talk with about your moral doubts or questions, and what you need to know from them |
| 2. Suggestions for conversations including helpful questions to identify their values at three levels: with colleagues, adolescent and parents: | |
| - Colleagues: options: 1-on-1 conversation, mono- or multidisciplinary team meeting, moral case deliberation. Discuss for instance: what is important for you as care provider(s)? It is OK if you think differently about this. In that case: describe the difference | |
| - Adolescent: reference to guidelines for shared decision-making, youth with intellectual disabilities and discussing fertility wishes. Discuss for instance: what is important for this adolescent? What values could you discover? Can you talk with this person about how he/she defines decisional competence? How does this add to your perspective? | |
| - Parents: potential topics to discuss: your own doubt, assess if they also feel doubtful, assess their perception on what is best for their child. Discuss for instance: What do parents find important? What values could you discover? What is their viewpoint on the decisional competence of their child? Can parents make the decision on behalf of their child? | |
| D. Conclusions and next steps* | 1. Make an overview here in order to make conclusions |
| You can also use this page to guide the team conversation about your starting question* | |
| - What was your starting question? (See step A) | |
| - What are relevant and important values? (See step B) | |
| - How do involved stakeholders look at it? (See step C) | |
| 2. What answer or conclusion could you give on the basis of the above? Describe here (eventually) the main considerations (as a team)* | |
| 3. Reflect on your conclusions* | |
| - What are possible actions? What are (negative) consequences of these actions? For youth, parents, or yourself or the team? | |
| - How to deal with these negative consequences? | |
| 4. What are the next steps? | |
| For example: make treatment plan with adolescent, enhance competence, re-assess competence, doing some parts of this tool again, inviting an ethicist or organizing moral case deliberation, etc | |
| Extra information | Specific information about: |
| - What is decision-making competence? | |
| - What are the four capacities of decision-making competence | |
| - Why should I assess decision-making competence? | |
| - How can I assess decision-making competence? | |
| - What factors influence decision-making competence of minors? | |
| - What to do in case of decision-making incompetence? | |
| - What are other viewpoints on decision-making competence? | |
| - Where can I go for more information? |
*Adjusted or added element after feedback round in phase 2