Research Making a Difference

www.canchild.ca

The Everyday-Ethics of Referrals

DevPeds AHD March 2016

@DevPeds

Olaf Kraus de Camargo & Ronit Mesterman

http://www.slideshare.net/OlafKrausdeCamargo/referrals-ethics

Objectives1. Health Advocate: Appreciate the ethical

implications of service structures and diagnostic labels

2. Medical Expert: Review diagnostic criteria for ASD, DCD and LD

Ethical Principles1. Respect for autonomy: related to health care

this implies respecting confidentiality, the desire of patients to be informed and not deceived and be involved in the decision-making process (empowerment).

Gillon, R. (1994). Medical ethics: four principles plus

attention to scope. Bmj, 309(July), 184 – 188.

Ethical Principles2. Beneficence: When indicating therapies “we

need to ensure that we can provide the benefits we profess”

Gillon, R. (1994). Medical ethics: four principles plus

attention to scope. Bmj, 309(July), 184 – 188.

Ethical Principles3. Non-Maleficence: We also need to ensure that

the benefits outweigh potential harms.

Gillon, R. (1994). Medical ethics: four principles plus

attention to scope. Bmj, 309(July), 184 – 188.

Ethical Principles4. 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.

Outline• The following 3 cases are made up but reflect well

the reality we encounter on a daily basis in Ontario.

• Read each case and formulate with your neighbour(s) which would be the next steps to address the issues of each child and family, considering:

OutlineFor each step of the diagnostic process and services provides, discuss if:

1. The right to autonomy of the patient and family was respected

2. The most adequate services were provided

3. The decisions did avoid harm

4. The decisions were fair

Kevin• Kevin is 7 years old. He is having difficulties at

school, especially in Math. He is very frustrated and has frequent anger outbursts. Recently he has begun to avoid school. He is described as being a loner and has difficulties making friends although he does want to be with other children.

Kevin• His parents are wondering if he has Asperger

Syndrome. They have heard that if Kevin is diagnosed with Asperger Syndrome he will receive more help at school.

Robert• Robert is 7 years old. He is having difficulty

learning to print. He is also clumsy and uncoordinated. He is a quiet and shy child. He is often lonely during recess because he cannot keep up with his peers. Robert is referred by his family physician to a developmental paediatrician for diagnostic assessment.

Thomas• Thomas is 7 years old.

• He has frequent meltdowns at home and school. He is fascinated by whales. His parents are wondering if he has Asperger Syndrome.

Access to Service• Kevin:

– Due to the referral diagnosis of suspected Asperger Syndrome Kevin is able to access a developmental paediatrician in his community.

Access to Service• Robert:

– Developmental paediatric services at Robert’s local treatment centre are only available to children 6 years and under. Robert is redirected to a local community paediatrician

Access to Service• Thomas:

– Thomas parents are directed by their family physician to call a CONTACT agency that directs them to mental health services, which then decline the referral, as symptoms are not severe enough, but redirect him back to the family physician with the recommendation to refer him to the community paediatrician.

Assessment and Diagnosis• Kevin:

– Developmental paediatrician rules out Asperger Syndrome and suspects a Non Verbal learning disability (NVLD). Confirmation of this diagnosis requires a psychometric assessment

Assessment and Diagnosis• Robert:

– Robert is diagnosed with DCD (developmental coordination disorder). His paediatrician recommends an occupational therapy assessment.

DCD• What are the typical findings?

Assessment and Diagnosis• Thomas:

– His community paediatrician diagnoses Thomas with Asperger Syndrome.

ASD• Review DSM-V Criteria

– What about the term ”Asperger”?

Services provided• Kevin:

– Kevin’s school does not agree that psychometric assessment is warranted because he is maintaining relatively good grades.

Services provided• Kevin:

– Two years later at age 9, assessment is completed and confirms the diagnosis of NVLD. NVLD is often associated with deficits in social skill development similar to those seen in children with Asperger Syndrome.

Learning Disability• How is it defined?

Services provided• Kevin:

– Although Kevin’s parents understand his diagnosis, they are disappointed as they are unable to access developmental services because Kevin is apparently too high functioning.

Services provided• Robert:

– Robert is placed on a waiting list for OT at his school since the local treatment centre does not provide services to his age group.

Services provided• Robert:

– His mother is aware that children with DCD may have associated developmental and emotional problems. She feels unsupported, worries that Robert may also have an anxiety disorder and does not know what to do or where to go for help.

Services provided• Thomas:

– Thomas can access ABA (Applied Behavioural Analysis) services through his local treatment center. In addition, his school is well informed and now that Thomas has received a diagnosis prepares a specific individualized education plan. (IEP).

Services provided• Thomas:

– He is offered a social skills group, and his parents are offered 1:1 service with a behavioural therapist.

Services provided• Thomas:

– Thomas’ paediatrician queries a comorbid anxiety disorder but Thomas is unable to access CBT (Cognitive Behavioural Therapy) from the local mental health program due to his diagnosis of Asperger Syndrome. The ASD service does not offer CBT.

Additional Reading

• McDowell, M., & O’Keeffe, M. (2012). Public services for children with special needs: discrimination by diagnosis? J Paediatr Child Health, 48(1), 2–5. doi:10.1111/j.1440-1754.2011.02394.x

• Stapleton, J., Pooran, B., Doucet, R., Briggs, A., Lee, C. R., McBeth, S., & Dumas-Hudecki, P. (2015). Every ninth child in Ontario : A Cost-Benefit Analysis for Investing in the Care of Special Needs Children and Youth in Ontario Every ninth child in Ontario : A Cost-Benefit Analysis for Investing in the Care of Special Needs Children and Youth in Ontario. Toronto, Ontario, Canada. Retrieved from http://openpolicyontario.com/wp/wp-content/uploads/2015/12/every-ninth-child-report-final.pdf

• Harris, S. R., Mickelson, E. C. R., & Zwicker, J. G. (2015). Diagnosis and management of developmental coordination disorder. Canadian Medical Association Journal, 187(9), 659–665.

• Kendall, T., Megnin-Viggars, O., Gould, N., Taylor, C., Burt, L. R., & Baird, G. (2013). Management of autism in children and young people: summary of NICE and SCIE guidance. Bmj, 347(aug28 2), f4865–f4865. http://doi.org/10.1136/bmj.f4865

• Silver, C. H., Ruff, R. M., Iverson, G. L., Barth, J. T., Broshek, D. K., Bush, S. S., … Reynolds, C. R. (2008). Learning disabilities: the need for neuropsychological evaluation. Archives of Clinical Neuropsychology : The Official Journal of the National Academy of Neuropsychologists, 23(2), 217–9. http://doi.org/10.1016/j.acn.2007.09.006

Resources for Parents while they are waiting for Services

• http://www.communityed.ca

• http://www.mcmasterchildrensfamilyresourcecentre.ca/– Click on “Library” and then “MCH Pamphlets and Resources”

• DCD: – https://canchild.ca/en/diagnoses/developmental-coordination-disorder

– https://www.canchild.ca/en/research-in-practice/current-studies/partnering-for-change

Resources for Physicians

• PONDA: Physicians of Ontario Neurodevelopmental Advocacy

• http://ponda.ca