Invited talk at the 4th Rayat-Bahra Conference, March 2021

1. The Ethical Dilemma of
Diagnosis-driven Care Delivery
Olaf Kraus de Camargo
Twitter: @DevPeds
4th NSPRSABHCMEConference – March 25th – 26th 2021

2. Case Example - Adam
§ Adam*, 6 yo
§ Started walking with 3 yo, running with 4 yo
§ Now struggles with fine motor difficulties: printing, self-help
§ Well developed speech, bilingual
§ Good academic performance
§ Socially a bit shy and awkward but has friends
*Pseudonym

3. Case Example - Eva
§ Eva*, 5yo
§ Since the age of 2 very demanding and explosive
§ Inattention, hyperactivity, impulsivity, oppositional and defiant
§ Struggles learning to read
§ Violent towards older siblings
§ Steals from peers and siblings
§ Few friends
§ Speech impediment
*Pseudonym

4. Diagnosis
§ Is the ability to “tell apart” (dia = divide/part; gnosis = knowledge)
§ Relies on collecting information/facts (history, exams, tests)
§ Is a process where you develop hypotheses…
§ …and then try to confirm them (further tests, exams, further details
of history), ruling out all the non-relevant competing hypotheses
§ “I saw the angel in the marble and carved until I set him free”
(Michelangelo)
Diagnosing is like recognizing and revealing the sculpture in a rock
https://www.metmuseum.org/art/collection/search/39325
“Parvati”

5. Diagnoses – Adam & Eva
§ Adam 6 yo: Developmental Coordination Disorder
§ Eva 5 yo: Oppositional Defiant Disorder,Attention Deficit
Hyperactivity Disorder, Query Fetal Alcohol Spectrum Disorder,
Query Learning Disability, Query Obsessive Compulsive Disorder
§ Adam 12 yo: Autism Spectrum Disorder, Developmental Coordination
Disorder, Non-verbal Learning Disability and, Depression, 1st episode
§ Eva 12 yo: Fetal Alcohol Spectrum Disorder, Oppositional Defiant
Disorder,Attention Deficit Hyperactivity Disorder, Query Learning
Disability, Query Obsessive Compulsive Disorder

6. Access to Treatment
§ Ontario Autism Program:
§ Diagnosis of Autism made by any physicians/psychologists
§ Parents register their child with the OAP
§ Parents receive money according to the age of the child (under 6, over 6)
§ Parents buy services chosen from a variety of private and public providers
https://www.ontario.ca/page/autism-ontario

7. Access to Treatment
https://www.fasdinfotsaf.ca/en/

8. Ethical Principles
§Justice:This principle relates to the fair
distribution of scarce resources, respect for
people’s rights and respect for morally acceptable
laws.
Gillon, R. (1994). Medical ethics: four principles plus
attention to scope. BMJ, 309(July), 184 – 188.
Autonomy
Beneficence

9. Complexity
“Complexity arises at the intersection between
individual and her/his environment”

10. Complexity of Disability
v Individual:
§Multiple impairments
§severe/profound intellectual
impairment
§Coexisting mental health issues
§Significant health conditions
§Behaviours of harm, alcohol and/or
drug misuse
§Experiences of trauma or neglect
v Environment
§ Socioeconomic disadvantage
§ Social isolation
§ Lack of service coordination
§ Lack of cross-sector collaboration

11. Disability & Functioning
Diagnoses: "He-Who-Must-Not-Be-Named"
Disability: is an experience
All people can find themselves in disabling life situations (“Disability” is
a relative term)
Disability can be prevented (in relative terms)
The relations between Disability and Functioning are complex
https://www.pinterest.ca/pin/577727458422035747/
Describing Functioning is like making a mosaic

12. Mosaic of Complexity:
Health Condition
(e.g., CP,ASD)
Body Structures
and Functions Activities Participation
Environmental
Factors
Personal
Factors
The ICF
World Health Organization. (2001). International classification of functioning, disability
and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407

13. ICF Framework
Body Structure &
Function
Activities
Participation
Environment
Personal Factors
Body Functions: The physiological functions of body systems (including psychological functions)
Body Structures: Anatomical parts of the body such as organs, limbs, and their components
Activities: The execution of a task or action by an individual.
Participation: Involvement in a life situation
Environmental factors: The physical, social and attitudinal environment in which people live and conduct
their lives; these are either barriers to or facilitators of the person’s functioning
Personal Factors: Internal personal factors which can include gender, age, education, profession, past and
current experience, character and other factors that influence how disability is experienced by the individual
World Health Organization. (2001). International classification of functioning, disability
and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407

14. Health & Functioning
§ Health is ‘the ability to adapt and self-manage in the face of social,
physical and emotional challenges’ (Huber et al. 2011).
§ In other words, functioning (however it is done, regardless of
ability/disability) can be understood as the evidence of health.
Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ
2011; 343: d4163.

15. Measuring Functioning
Thompson SV., Cech DJ, Cahill SM, Krzak JJ. Linking the Pediatric Evaluation of Disability Inventory-Computer Adaptive
Test (PEDI-CAT) to the International Classification of Function. Pediatr Phys Ther. 2018;30(2):113–8.

16. Spectra of Functioning
ASD FASD
BF
A&P
EF-Barriers
BS
Xu A, Moore C, Kraus de Camargo O. Comparing the Spectra of Functioning in Children with FASD and ASD. In:WHO - Family of
International Classifications Network Annual Meeting.World Health Organization; 2020. p. 401. DOI: 10.13140/RG.2.2.26358.83524

17. Conclusion
§ A functional profile informs more about the needs of an individual patient than
their diagnoses
§ Capturing functional profiles of patient populations has the potential to better
identify service gaps and design supports that are equitable and fair
§ Health Care Professionals that expand their thinking beyond the biomedical
model towards a biopsychosocial(-spiritual) model contribute to an ethical
delivery of care

18. Q & A Session
Q A
&
ThankYou!