Post on 17-Jul-2020
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Supporting People with
Intellectual & Developmental Disabilities:
Case-based Discussion
Encounters in Bioethics – Wednesday, April 10, 2013
7.30 – 9.30 p.m.
Presenter: Dr. Bill Sullivan Developmental Disabilities Primary Care Initiative of Ontario
St. Michael’s Hospital, DFCM, University of Toronto
Surrey Place Centre, Toronto
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Acknowledgements
Thanks to the following for their help in preparing this presentation:
• Rob Balogh • Ian Casson • Angie Gonzales • Barry Isaacs
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Disclosure of Potential Conflicts of Interest
I have no involvement with industry. I have nothing to disclose and cannot identify any potential conflict of interest.
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Objectives
• Review research on health and primary health care services that adults Ontarians with intellectual and developmental disabilities (IDD) receive.
• Propose ethical framework used to argue for better primary care for this vulnerable group based on enhancing relationships and the guiding principle of beneficence-in-trust.
• Consider practical implications of this ethical framework.
• Discussion of some cases.
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Research on
Health and Primary Care of
Persons with IDD in Ontario HCARDD
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HCARDD: Health Care Access Research
and Developmental Disabilities: using the
Guidelines for Primary Care of Adults with IDD
to evaluate health and health services
at the population level in Ontario
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Project Team
• Project Lead
– Yona Lunsky, CAMH, U of T
• Core Working Group and Investigative Team
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Rationale
• Adults with IDD are at increased risk for experiencing health problems compared to the general population
• Healthcare system fragmentation, lack of resources, lack of access to information and inadequate training have all been cited as contributing factors
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Health Differences
“People with learning disabilities [IDD] have higher levels of health needs than the general population....The pattern of types of health need…differs from that of the general population; as do the main causes of death.”
People with Learning Disabilities in Scotland (2004)
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Health inequity
“People with MR [IDD], their families, and their advocates report exceptional challenges in staying healthy and getting appropriate health services when they are sick. They feel excluded from public campaigns to promote wellness. They describe shortages of health care professionals who are willing to accept them as patients and who know how to meet their specialized needs.”
Closing the Gap (2002), USA
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• Not much Canadian research
• In Canada there is evidence that individuals with IDD
are more likely to be admitted for preventable hospitalizations than others without IDD (Balogh, 2010): Indicator of poor primary care
• Need for more comprehensive data on individuals with IDD
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Objectives
1. Create and evaluate datasets including anonymized information on large numbers of individuals with IDD in Ontario
2. Describe primary care use of adults with IDD
3. Evaluate how good primary care provided to adults with IDD is, using a set of indicators developed from the Guidelines for Primary Care of Adults with IDD.
HCARRD
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Tools (2011) to implement Guidelines
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• General Issues, e.g.,
– Genetic Assessment – Adaptive Functioning – Psychological Assessment – Informed Consent
• Physical Health Issues, e.g.,
1. Cumulative Patient Profile 2. Preventive Care Checklists 3. Health Watch Tables
• Behavioral and Mental Health Issues, e.g.,
– Understanding Behavioral Problems and Emotional Concerns – Auditing Psychotropic Medications – Essential Information for the Emergency Department – Guidance about Emergencies for Caregivers – Crisis Prevention and Management Plan
Tools
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Tools
• Electronic versions available on the web:
www.surreyplace.on.ca/Clinical-Programs/Medical-Services/Pages/PrimaryCare.aspx
• Paper copies available from MUMS Guidelines:
www.mumshealth.com
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Data Linkage
Data taken from:
Hospital stays
Visits to Doctors’ offices
Emergency department visits
Data taken from: MCSS Ontario Disability Support Program
MERGED cohort
Health Admin Data
Community and Social
Services Data
N=39,000 n=44,000
n=65,000
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Comparison of Healthcare Users in Ontario with and
without IDD: Age Distribution
0
5
10
15
20
25
30
18-24 25-34 35-44 45-54 55-64
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Age groups
% People with IDD
People without IDD
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Comparison of Healthcare Users in Ontario with and
without IDD: Morbidity
0
10
20
30
40
50
60
Healthy Low Moderate High Very High
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Morbidity level
%
People with IDD
People without IDD
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0
2
4
6
8
10
12
14
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Asthma Diabetes COPD CongestiveHF
Heart Attack Hypertension
Comparison of Healthcare Users in Ontario with and
without IDD: Rates of Chronic Conditions
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% People without IDD
People with IDD
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Proportion of Healthcare Users in Ontario with and
without IDD: Visit to primary care physician
%
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• Perform an annual comprehensive preventive care assessment including physical examination
– and use guidelines and tools adapted for adults with IDD
Example of a Guideline
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Proportion of Healthcare Users in Ontario with and
without IDD: Rates of Comprehensive Health Check
0
10
20
30
40
50
DD Non-DD
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%
IDD Non-IDD
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Other preliminary findings
• 45% of adults with IDD received a psychiatric diagnosis; 26% with “serious mental illness” [SMI] during a 2-year period (cf. 8% psychiatric diagnosis but no IDD).
• This group had highest rate of ER visits in Ontario.
• 44% of people with IDD are receiving antipsychotic medications.
• Women with IDD are two times less likely to receive eligible pap smears and mammograms.
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Ethical Framework
Better primary care for
persons with IDD
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Example: James
• Personable young man with Down syndrome
• Interacts with many people in residence and work
• Highly susceptible to influenza and pneumonia
• Fears needles and refuses vaccination repeatedly
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Example: Jane
• Woman with Prader-Willi syndrome and mild IDD
• Difficulties with snacking and weight gain
• Lives at home with parents who enable her snacking
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Example: Mary
• 25-year-old woman with borderline IDD
• Her “friends” she met at a neighbourhood café supply her with amphetamines in return for high-risk sexual favours
• Never been screened for cervical cancer
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Example: Mark
• 44-year-old man with IDD of unknown etiology
• Poor communication
• Serious behavioural issues (aggression and self-injury)
• In and out of hospital ER for behavioural crises
• On antipsychotic medication since age 18
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Relationality
Persons with developmental disabilities, like all human beings, are nurtured throughout life by human relationships and community experiences.
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Relationality in providing primary care
• The biopsychosocial-spiritual model of health care (e.g. Sulmasy, Gerontologist 2002;42(Spec n 3):24-33) describes the relations that influence the health of persons with IDD:
- biological organ systems
- psychosomatic interactions
- relation to physical environment
- interpersonal relationships
- relation to transcendent desires (spirituality)
Note: interacting factors; cascading effects of interruption in any relation
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Relationality in providing primary care
• Relationship of persons with IDD to their primary health care providers is an essential foundation for providing optimal health care.
• The relationship of persons with IDD to family members and others in their support network should be respected and considered when providing health care.
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Ethical relationship to primary care provider
• Based on “beneficence-in-trust” (see Pellegrino ED, Thomasma DC.
For the patient’s good: the restoration of beneficence in health care. Oxford: OUP, 1988)
• Through self-examination and education, becoming aware of unconscious negative attitudes and mistaken beliefs about persons with IDD that arise from infrequent contact and lack of knowledge, and that impede care (e.g., “diagnostic overshadowing”)
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Ethical relationship to primary care provider
• Informing practice with knowledge and skills adapted to the health issues of persons with IDD (e.g., Guidelines and Tools) and familiar knowledge of the individual patient’s needs and situation.
• Creating accessible environments for care (e.g., wheel chair accessible offices).
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Ethical relationship to primary care provider
• Communicating appropriately with the patient and patient’s caregivers (e.g., attention to level and type of communication; recognizing importance of caregiver input and assistance).
• Supporting decision making at the level of the patient’s capacity (awareness of vulnerabilities; avoiding inappropriate taking over; providing supports as needed).
• Always acting in the best interests of the patient, accounting for the patient’s level of capacity, values, and situation.
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Ethical relationship to primary care provider
• Always acting in the best interests of the patient, accounting for the patient’s level of capacity, values, and situation.
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Ethical relationship to primary care provider
• Making preventive care and health promotion a priority (easy to overlook when addressing present complex health needs in a busy practice).
• Willing to take on roles of case coordinator and/or advocate, or assisting in finding suitable people (recognizing problems of fragmented care, transitions, vulnerability to neglect and abuse).
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Respecting dignity and beneficence-in-trust
Intrinsic dignity: Persons with IDD, having dignity and value intrinsic to all human beings, should also have equal access to health services (including preventive care and health promotion) to those without IDD and appropriate services, e.g., adapted comprehensive health exam cancer screening (Mary).
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Respecting dignity and beneficence-in-trust
Intrinsic dignity: Have due diligence and promote strategies for addressing harm or risk of harm to persons with IDD. For example:
• inappropriate use of antipsychotics? / appropriate psychiatric diagnosis? (Mark)
• abusive situations? (Mary)
• need for environmental and other supports? (Jane)
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Promoting inflorescent dignity and beneficence-
in-trust
Inflorescent dignity: Enhancing the overall sense of well-being of persons with IDD. For example:
• promoting healthy relationships? (Mary)
• using least intrusive and burdensome means to attain health goals? (Jane)
• adapting communication and procedures perceived as aversive (James)
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Autonomy and beneficence-in-trust
• Respect for autonomy is an important but not the only ethical principle.
• Autonomy understood as freedom from external constraints (right of refusal) and freedom to decide (positive right to self-determined choices) presuppose person with IDD always is in a position to understand and appreciate proposed interventions, or to know what he/she needs and can ask for it.
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• Persons with mild IDD do not differ significantly from those with IDD in decision making capacity, but there is the danger of overlooking the need for assessment.
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• Persons with moderate IDD usually have some challenges in decision making, but those that do not meet the legal standard for capacity to consent may still be capable of contributing to decision making (e.g., expressing values). Caregivers (including unauthorized paid care providers) might manifest inappropriate taking over of all aspects of decision making.
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• Persons with severe to profound IDD are unlikely to be capable of providing consent or expressing choices. Substitute decision maker (sometimes Guardian or Trustee or uninvolved relative) might require the assistance of primary care provider and/or caregiver who knows the person, the person’s history and situation, to decide on best interests.
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• Consider also factors that mitigate capacity:
– History of residential care (limited range of experiences; possible traumatic events relating to health care)
– Tendency to acquiesce
– Challenges in communication
– Affective disorder or psychiatric illness
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• Communicating the difference between a (short-term) dissatisfaction and (long-standing) value. For example:
aversive vaccination vs. values of health and work (James)
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Autonomy and beneficence-in-trust
Challenges in assessing decision making capacity:
• If a person with IDD has an underlying disorder preventing understanding or appreciating the relation of behaviours to harm, this is grounds for determining incapacity to consent. e.g., Prader-Willi syndrome (Jane).
• This is ethically different from the cases when someone does not have such a disorder; when someone has the capacity but the primary care provider disagrees with decision.
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CONCLUSIONS
• Both clinical guidelines and tools and an ethical framework for applying these are important for improving the primary care of persons with IDD.
• Ethical care entails promoting healthy relationships in persons with IDD.
• The relationship between the primary care provider and the patient with IDD should be guided by beneficence-in-trust.
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CONCLUSIONS
• Respecting the dignity of persons with IDD entails promoting equal and appropriate care (including preventive care and health promotion), having due diligence and promoting strategies to avoid harm or risk of harm, and enhancing overall well-being (including providing appropriate supports and fostering healthy relationships).
• There are special ethical considerations to respecting autonomy of persons with IDD.
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Bill Sullivan bill.sullivan@surreyplace.on.ca
Thank You!
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Discussion