International Interdisciplinary Seminar on Decision-making in Persons with Disabilities

Presentation Group 4 “Health care”

Isabell Regier; Cassey Ler; Nadine Thomé; Miriam Klotz; Douglas Chen; Rike Möller; Lorenzo Tseng

CASE

•Paul J. has a severe intellectual disability and no verbal communication. Care staff who knew him well noticed a deterioration in his behavior. In particular they noticed that he was extremely protective of his face. They suspected a toothache. However, he absolutely resisted letting anyone even come near his mouth. In attempts to find out what is wrong with him, it becomes clear that he completely resists any interference with his mouth. Later it turned out that he was indeed suffering from toothache.

The Betreuer/the guardian and the care staff ask themselves what is obliged to do.

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ISSUES

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Interaction

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ISSUES

Serious health problem?

Severity?

Easiest way of examination / treatment for Paul?

Degree of mental health impact by forced treatment?

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ISSUES

Do we need to act now?

When is it crucial to act?

Supported vs. substitute decision making?

Impact of PRAA ?

How to find out his (presumed) will?

Was he at any time capable of giving consent?

When is substitute decision making justified?

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ISSUES

How can we communicate with him so that he understands the situation?

How can we understand Paul?

How to overcome the barriers of communication?

Communication of complex health informations?

Who is the best person to communicate with?

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Taiwanese Law of Guardianship

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•ATTENTION !

•1. Legal capacity ≠ mental capacity

•2. Affairs related to one’s status cannot be represented by the guardian or assistant

•E.g. people without any legal capacity, as long as he/she has sufficient mental capacity, can still get married

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Difficulty of a person-centered approach in Taiwan

Mental Capacity

•Does Paul J. have enough mental capacities(意思能力)to make a healthcare decision ?

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•What level of mental capacity is required ?

•How to determine that he has enough mental capacity ?

UNSOLVED PROBLEMS

Chen, Ping-Jen (2018)

If NO:

His guardian needs to make a decision for him.

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•What is the best decision in this situation?

Source:

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Difficulty of a person-centered approach in Taiwan

Mental Capacity

If YES:

Paul J. can make a decision by himself

•Does Paul J. have enough mental capacities(意思能力)to make a healthcare decision ?

•What level of mental capacity is required ?

•How to determine that he has enough mental capacity ?

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•How to understand his will? → COMMUNICATION

Source: Chen, Ping-Jen (2018)

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Does not change

PRAA the situation for Paul

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Source: Chen, Ping-Jen (2018)

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No matter how the legal situation in Taiwan is, one should always

Conclusion follow a person- centered approach

and implement supported decision-making

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Person-centered solutions from a medical perspective

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•Specially trained dentist

•Trusting relationship with the dentist

•Organize a home visit for a basic examination

•Trusted person for company

•Avoid rushing the process

•Regular dental checks and prophylaxis

•General anesthesia?

der Angehörigenvertretungen

- Württemberg e.V. (2011)

Source: Bundesärztekammer (2019); Landesarbeitsgemeinschaft

in Einrichtungen für Menschen mit geistiger Behinderung Baden

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Person-centered solutions from a legal perspective

•Supported decision making should always be implemented if possible.

•Principle of necessity

•Respect and integrate the will and wishes of Paul

•Help him understand the situation

•If it is not possible to remove the barriers of understanding, find out Paul's presumed will

•Broaden perspectives through ethical reflection

•Key-Question: How to avoid forced-treatment

•Forced treatment only as a last resort!

Sources: Brosey 2015; Riedel, BtPrax 2013

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Person-centered solutions from a communication perspective

•Use AAC

•Who: People he trusts and know him well

•Build a trusting relationship

•Be careful about the setting

•Use a receptive Language

•Speak in full but easy sentences

•Try to figure out: Who the person Paul is and what he likes

•Get multiple sources of informations

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Source: Kosuch (2018)

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Person-centered solutions from a communication perspective

•Key Communication Criterias: Patience, Coherence, Sensitivity, Flexibility, Kindness, Objectivity

•Reflect!

•Be aware of interactional biases

•Practice “mindful attention“

•Listen to body expressions

•Make sure you have understood correctly

•Conclusion: Less talking, more asking and “listening” (to the nonverbal)

Bundesministerium der Justiz und für Verbraucherschutz (Hg.) (2018)

Source: Huang (2019)

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Principles of Supported Decision Making

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References and Sources

•Brosey, Dagmar (2015): Supported Decision-making and the German Law of BETREUUNG. A legal perspective on

supported and substitute decision-making regarding Art. 12 CRPD. In: Dagmar Coester-Waltjen, Volker Lipp,

Donovan W.M. Waters (Hrsg.): Liber Amicorum Makoto Arai. Baden-Baden: Nomos. Page 125 – 141.

•Bundesministerium der Justiz und für Verbraucherschutz (Hg.) (2018): Qualität in der rechtlichen Betreuung.

Abschlussbericht. Köln: Bundesanzeiger. https://www.bmjv.de/SharedDocs/Downloads/DE/Service/Fachpublikationen/Forschungsbericht_Qualitaet_recht liche_Betreuung.html

•Bundeszahnärztekammer (2019): Zusätzliche Zahnärztliche Versorgungsangebote für Menschen mit Pflegebedarf oder einer Beeinträchtigung. Köln. Page 2-7. https://www.bzaek.de/praevention/alters-und-behindertenzahnmedizin.html

•Chen, Ping-Jen(2018),Medical Decision-Making for the Patients with Impaired Mental Capacity: Challenges from Clinical, Ethical and Legal Aspects and a Start-up Research,FT Law Review,No.218,P32 – 44 https://reurl.cc/dG2Vny

•Hsu ,Tze-Tien, National Taipei University (2016), Passive Euthanasia and Patient Right of Autonomy: Interaction of German Doctrine, Legislation and Practice, Journal of NTPU Law, No.100, Page 179-243.

•Huang, Sieh-Chuen (2019), Medical decision-making for patients with impaired meaning abilities— How to balance between independent, agency, best interests and medical quality, Clinical Medicine, No.83, Page 112-118. https://reurl.cc/Enp591

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References and Sources

•Kosuch, Renate. (2018): Qualität der Beziehungsgestaltung für die rechtliche Betreuung - Impulse aus

(kommunikations) psychologischer Perspektive. In: BtPrax 1/2018.

•Landesarbeitgemeinschaft der Angehörigenvertretungen in Einrichtungen für Menschen mit geistiger Behinderung Baden - Württemberg e.V. (2011): Menschen mit geistiger Behinderung beim Zahnarzt. Handreichungen für Eltern, Angehörige und Betreuer und für Zahnärzte und zahnmedizinische Fachangestellte. Stuttgart. Page 1-4. http://dgmgb.de/wp-content/uploads/2019/02/LAG_Informationsschrift_Zahnarzt.pdf

•Riedel, Annette (2013): Behandlungswünsche und mutmaßlicher Wille von Menschen mit Behinderung –

ethische, pflegewissenschaftliche und juristische Aspekte. In: BtPrax - 1/2013. Page 9 – 12.

•https://waindividualisedservices.org.au/resources/supported-decision-making/

•https://www.mohw.gov.tw/cp-16-44221-1.html

•https://law.moj.gov.tw/ENG/LawClass/LawAll.aspx?pcode=L0020189

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Additions For Deeper Understanding

Basics on German Law of Betreuung

•The appointment of a Betreuer is made by a special court under participation of a medical expert and local authorities and the concerned person (if needed with special support or lawyer)

Attention ! The appointment has NO influence on the persons legal capacity!

•The Appointment is only legal when necessary

•Power of attorney & Social services gave priority over the appointment of an Betreuer

•The Betreuer has a legal set of duties and powers (court decision). E.g: Determination of residence, health care, Finances etc.

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Source: Brosey 2015

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Basics on German Law of Betreuung

The Person with Disabilities has the right…

•to get support

Persons with disabilities must be provided with access to the assistance they may need in exercising their legal capacity and ability to act.

•of selfdetermination

The concerend person can reject the Betreuung

But on the other hand: The person has the right to be safeguarded if necessary

•Only under very certain conditions (§1906a civil code) is forced treatment possible

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Source: Brosey 2015

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Basics on Taiwanese Law of Guardianship

•Classified into 2 types: Guardianship and Assistance, both lead to different effects

•Guardianship: Complete denial of legal capacity WITHOUT ANY EXCEPTION (§15).

•Assistance: Person under assistance has own legal capacity on affairs relating to pure legal benefit or the necessity based on the person’s age, status, and daily life.(§15-2)

→AFFECTS LEGAL CAPACITY

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Basics on Taiwan Law of custody

Attention !

1.Legal capacity ≠ Mental capacity (意識能力)

2.Affairs related to one’s status (身分行為) can’t represent by guardian or assistant.

eg. People without any legal capacity, as long as he/she has sufficient mental capacity, can still get married.

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Basics on Taiwan Law of custody

•Mental capacity is a factual problem, depends on one’s mental state

•Is health care decision a financial affair (whether or not to enter into a contract or what's the content of the contract)

OR

an affair related to one’s status (related to his/her own health )

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