Block C4 – Adolescent and Adulthood – 2022

Autonomy Principle
&
Capacity to Consent
Wika Hartanti, MD, MIH
Dept. of Medical Education and Bioethics
Center for Bioethics and Medical Humanities
Faculty of Medicine, Public Health and Nursing UGM
 § On autonomy and its surrounding issues
§ Basic concept of autonomy
§ In the context of adolesecent

§ On Informed Consent and its practices

Outline § Basic concept
§ Ideal vs reality

§ Capacity to consent
§ On Competence and capacity
§ On the context of adolescent and adult
PRE – LECTURE TASK
§ A 16 years old teenage girl (high-school student) came
to a hospital, visited the OBGYN clinic, accompanied by
her mother, seeking to consult on her lab result, which
suggests to a diagnosis of hydatidiform mole (mola
If you’re the doctor, hydatidosa/ molar pregnancy).
what will you do? § Throughout the clinical consultation session, the girl
was silent, only the mother providing answers and

Who would you ask for explanations. The mother asked the doctor what caused
her daughter’s disease.
treatment consent,
§ The attending Doctor would need to inquire about the
mother or daughter? girl’s pregnancy history in order to provide proper
explanation and education for the next treatment plans.

Log your answers in the form below:

https://forms.gle/K5U2qKAHdyYKML4XA
Decision for §Whose responsibility?
clinical care §Why?
Source: http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 Also known as
Basic Moral Principles:
The Four • Respect for Patients’ Autonomy
Principles of • Beneficence
Biomedical Ethics • Non-maleficence
• Justice
 In ethics, the notions of autonomy and
responsibility are mutually related.
Responsibility manifests
autonomy; there is no autonomy
Autonomy and without responsibility; beyond
Responsibility responsibility autonomy turns to
arbitrarity, which means that the person
in his/her decisions does not take into
consideration the interests of others.

Source: http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
Respect for
Patients’
Autonomy
 § Derived from the Greak; autos
(self) and nomos (rule,
governance, law)
§ The definition: “personal rule of
the self that is free from both
The concept of controlling interferences by
Autonomy others and from personal
limitations that prevent
meaningful choice, such as
inadequate understanding.”
 § To respect an autonomous agent is, at
minimum, to acknowledge that person’s right
to hold views, to make choices, and to take
action based on personal values and beliefs.
§ Why we should respect other people
The Principle of autonomy?
Respect for § Immanuel Kant: “all person has unconditional worth,

Autonomy
each having the capacity to determine his or her own
destiny.” We are not allowed to treat patient merely as a
means.
§ John Stuart Mill: “citizens should be permitted to develop
according to their personal convictions, as long as they
do not interfere with a like expression of freedom by
others.”
 1. Liberty
Free from anything that restrained
To whom this him/herself to decide
principle should 2. Agency
be used? Have the capacity to determine
intended action

§ To autonomous person
 1. (Intentionally)
Tindakan diputuskan dengan maksud
tertentu
Syarat 2. (understanding)
Tindakan Dengan pemahaman yang benar
Otonom
3. (without influence)
Tanpa pengaruh yang mengendalikan
pilihan mereka
Problems with Autonomy ¡Otonomi adalah mengenai
kepemilikan kapasitas untuk secara
berulang mengenali dan
mengendalikan hasrat dasar (yang
lebih rendah) dengan hasrat yang
Theory of lebih tinggi
Second-Order- ¡Dibutuhkan rasionalitas yang tinggi
Desire ¡Permasalahan dari teori ini adalah:
¡ Bagaimanakah jika hasrat seseorang tersebut sudah
dikuasi oleh hasratnya yang lebih rendah?
¡ Misalnya: perokok, pemabuk, dll
¡ Keberlakuan teori yang membutuhkan keadaan ideal
(bebas berotonomi) dari agen moral
¡ Misalnya: narapidana, tahanan perang, dll
Problems with Autonomy
§ Jika seorang pasien memberikan
persetujuan medis tanpa mengetahui isi
dari informasi tersebut à bagaimana
otonominya?
Otonomi individu § Bagaimanakah posisi pasien dengan
versus kelainan mental dalam sistem pelayanan
Pilihan Otonom kesehatan?
§ Bagaimana dengan seorang pasien yang
meminta untuk menghentikan upaya
medis terhadap dirinya yang dapat
mengakibatkan kematiannya?
 Autonomy and
Adolescent

Source: Steinberg,L.(1999).Adolescence(5thEd.).Boston: McGraw-Hill.

Via http://www.basicknowledge101.com/pdf/Development%20of%20Autonomy%20in%20Adolescence.pdf
 Development of
teenage self
governance

Source: Steinberg,L.(1999).Adolescence(5thEd.).Boston: McGraw-Hill.

Via http://www.basicknowledge101.com/pdf/Development%20of%20Autonomy%20in%20Adolescence.pdf
 § How is it practiced in reality?
§ Teenagers, do they have access to health care services
Questions: autonomously?

the exercise of § Can teenagers give or refuse to consent?

autonomy for § What do you think could happen when the growing

adolescent? autonomy of adolescents are being:

§ Strictly restrained?
§ Freely exercised?

Dilemma: RISK vs OPPORTUNITIES

Source: http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 § The ability to understand given information
§ The ability to appreciate the nature of the situation
§ The ability to assess the relevant facts
The Criteria for § The ability to exercise choice
capacity to § The ability to use understood information for realistic and
consent reasonable decisions

§ The ability to appreciate the consequences of giving or

refusing consent

Source: http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 § categories of practices
§ clinical treatment and research
§ epidemiological research (e.g. use of previously collected data)
§ public health (e.g. vaccination)
§ emergency conditions (e.g. resuscitation)

Various § categories of subjects

circumstances § persons not yet able to make their own decisions (e.g. minors)
§ persons no longer able to make their own decisions (e.g. demented persons)
where capacity to § persons temporarily unable to make their own decisions (e.g. unconscious

consent may be
persons)
§ person permanently unable to make their own decisions (e.g. severely
compromised intellectually impaired persons)

§ categories of contexts
§ disadvantaged economical conditions
§ Illiteracy
§ socio-cultural circumstances
Source:
http://www.unesco.org/fileadmin/MULTIMEDIA/FIE § captive audiences (e.g. prisoners, laboratory assistants)
LD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 Informed consent practice may very likely be

Clinical compromised due to:

treatment and § Vulnerability issues: patient as research subject

§ Dual role physician-researcher
research
 Informed consent practice may be compromised in this
context due to:

Captive § nature of context: inherent inequality gap (authorities

and subordinates)
audiences § Restricted exercise of rights and autonomy (e.g.
prisoners)
 § Neonates

Examples of § Children

person most likely § Confused elderly

without capacity § Person with learning difficulties

to consent § Person with metal illness

§ Unconscious person

Even they who fall in this category must be ensured that their autonomy is
well respected and efforts are made to facilitate their preference
Determining
1. Does the patient understand the current medical
Patient’s Capacity
condition?
2. Does the patient understand the natural course of the
current medical condition?
3. Does the patient understand the proposed treatment
Guiding intervention?
Questions to 4. Does the patient understand the risks and potential
Assess Patients benefits of the proposed treatment and/or intervention?

Capacity to 5. Does the patient understand what is likely to happen if

the proposed treatment/intervention is refused?
Decide: 6. Does the patient understand whether there are any
viable alternatives to the proposed treatment
intervention?
7. Does the patient understand the potential risks and
benefits of the alternative treatments?
RISKS
 OPPORTUNITIES
§ The start of behaviors associated with morbidity and mortality in
later adult years

§ Adolescence: special opportunity for health promotion

§ Early prevention before health-compromising behaviors become
firmly established
§ Opportunity to introduce, reinforce, and establish healthy patterns
§ Important developmental stage: sense of curiosity, receptive to
information about themselves and their bodies

Source: Millstein SG et all (editors). Promoting the health of adolescent:

New directions for the twenty-first century. Oxford University Press. 1993
 § Reduce risk:
§ Well informed of possible consequences to various
course of actions
§ Improve decision making skills (e.g. considering
alternative perspectives)

Adolescent § Reduce susceptibility to antisocial peer influence (e.g.

enhance self confidence, improve peer resistance skills)
autonomy and § Reduce opportunities for behaviors having serious
health promotion negative consequences

§ Capitalize adolescents’ desire for autonomy in health

promotion efforts
§ Health presented as personal responsibility and choice
§ Encourage to commit to healthy lifestyle/behavior

Source: Millstein SG et all (editors). Promoting the health of adolescent:

New directions for the twenty-first century. Oxford University Press. 1993
INFORMED CONSENT
 § Ideal vs common practice
Questions: § Who can give consent?
the practice of § Who can sign the document?
Informed § Can teenagers sign IC?
Consent?
Source: http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 § asserts the patient’s autonomy
§ protects his/her status as a human being
§ prevents coercion and deception
REMINDER: § encourages the doctor’s self-criticism
Aims of Consent § supports the process of rational decision-making
§ educates the public at large

Consent expresses respect for

Source: the dignity and rights of each human being
http://www.unesco.org/fileadmin/MULTIMEDIA/FIELD
/Cairo/pdf/Bioethics_Core_Curriculum.pdf
 1. Memberikan kebebasan kepada pasien untuk
memutuskan sendiri tindakan medis apa yang
akan dilakukan
§ Bukan pemindahan beban keputusan

Intepretasi § Sangat berkait dengan aspek legal

§ Memberikan jaminan kepada masyarakat untuk
Prinsip “Respect mendapatkan pelayanan medis yang paling baik sesuai

for Autonomy” dengan kemampuan mereka

2. Dalam praktik, sering disebut sebagai Informed

consent (persetujuan setelah penjelasan-PSP)
§ Aspek klinis à kepercayaan dan kerja sama pasien
§ Aspek legal à perlindungan hukum pasien dan dokter
Types of Informed Consent
§ Implied consent
§ Tidak dengan tertulis ataupun oral
§ Kedatangan pasien ke dokter dengan suka rela dan tanpa paksaan adalah bentuk implied
consent

§ Express consent
§ Secara oral
§ Secara tertulis
1. Tindakan medis tersebut rumit atau melibatkan resiko yang berat/besar
2. Terdapat tujuan selain medis (asuransi)
3. Memiliki dampak yang besar terhadap kehidupan sosial pasien, pekerjaan, atau kepentingan
pribadi lainnya
4. Pengobatan atau pemeriksaan tersebut bagian dari penelitian medis
5. Diharuskan secara legal
 1. Kepada pasien dengan
penyakit/gangguan mental
2. Perawatan pada anak dibawah 16
tahun

Pengecualian IC Pengecualian informed consent pada

anak dibawah usia 16 atau 18 tahun
saat ini mulai dipertanyakan karena
mereka telah memiliki kemampuan
untuk memahami berbagai hal yang
terkait dengan kehidupannya.
 § UU no. 29/2004
§ Pasal 45, Penjelasan secara lengkap tentang tindakan
medis

Regulation on § Pasal 52, Hak Pasien

Informed § Permenkes no. 290/2008: Persetujuan Tindakan Medis

§ UU no.36/2009: Paragraf kedua (Perlindungan Pasien)
Consent Pasal 56

§ UU no. 44/2009 pasal 37

Informed Consent à Persetujuan Setelah Penjelasan

Pasal 52, Hak Pasien UU 29/2004 37
 38

(4). Persetujuan sebagaimana dimaksud ayat (2)

dapat diberikan baik secara tertulis maupun lisan
(5). Setiap tindakan kedokteran atau kedokteran
gigi yang mengandung risiko tinggi harus
diberikan dengan persetujuan tertulis yang
ditandatangani oleh yang berhak memberikan
persetujuan

Semua tindakan medis harus mendapat persetujuan pasien atau keluarga.

Tidak perlu dalam keadaan gawat darurat
 THANK
YOU!

QUESTIONS?