Ethics of Working with
Individuals with Disabilities
and their Families in
Maintaining Health
Dick Sobsey
University of Alberta
1
A Father’s Perspective
• MECP2 Duplication Syndrome
• Diagnosis at Age 18
• In general, our family’s experience has been
positive and supportive.
2
• ER, University Hospital,
Edmonton
• ER, Rockyview Hospital,
Calgary
• ER, Taber Hospital
• ER, Vancouver General
• ER, Vancouver Children’s
• ER, Anaheim Memorial
• Urgent Care, Dunedin, NZ
• Urgent Care, Queenstown,
NZ
• Urgent Care, Brisbane,
Australia
• Suva Hospital, Fiji
• Navua Health Clinic, Fiji
A Father’s
Perspective
3
Disparities
Health Outcome Disparities
• May be due to impairment
or disease process.
• May be due to unequal
treatment
Health Care Disparities
• Differences in health care
access and quality of health
services.
4
United States
Havercamp, Scandlin, & Roth. (2004). Health Disparities Among Adults with
Developmental Disabilities, Adults with Other Disabilities, and Adults Not Reporting
Disability in North Carolina. Public Health Reports, 119, 418-426
Never had Pap Test
Adult Females
Never had
mammogram
Females over 40
No Teeth Cleaning for
more than 5 years
No
Disability
Other
Disability
Developmental
Disability
2.2
4.7
11.5
13.0
14.5
26.8
8.0
17.2
14.4
5
United States
• Racial and ethnic disparities in the use of health care have
attracted the greatest public and Congressional notice.
Nevertheless, another large subgroup of Americans—the
40 to 50 million individuals with disabilities—experience
similar disadvantages while generating little public outcry.
• Disparities monitoring is only a first step to eliminat- ing
harmful inequalities in health service use across
populations. The next more important step is understanding reasons for these disparities and eliminating
barriers to equitable use of health care.
• Tracking disability disparities: the data dilemma
• Journal of Health Services & Research Policy. 13(3):12930, 2008 Jul Iezzoni, Lisa I.
6
United States
• Although 82.2% of nondisabled persons had surgery, 68.5%
of disabled persons received operations. Adjusted relative
risks (RRs) of receiving surgery were especially low for
persons with respiratory disabilities (adjusted RR=.76),
nervous system conditions (adjusted RR=.86; 95% CI, .76–
.98), and mental health and/or mental retardation disorders
(adjusted RR=.92; 95% CI, .86–.99). Persons with disabilities
had significantly higher cancer-specific mortality rates
(hazard ratio [HR]=1.37) than persons without disabilities.
Observed differences in cancer mortality persisted after
adjusting for demographic and tumor characteristics
(adjusted relative HR=1.23).
•
Iezzoni, L.I. et al. (2008). Treatment Disparities for Disabled Medicare
Beneficiaries With Stage I Non-Small Cell Lung Cancer. Archives of Physical
Medicine and Rehabilitation, 89, 595-601.
7
Taiwan
• After adjusting for age, gender, ethnicity,
socioeconomic status and hospital
characteristics, the presence of
schizophrenia was associated with a 2.83
times higher risk of having a ruptured
appendix.
•
Tsay, J-H.. Lee, C-H,. Hsu, Y-J., Wang, P-J., Bai, Ya-Mei., Chou, Y-J., & Huang, N.
(2007)Disparities in appendicitis rupture rate among mentally ill patients.
BMC (BioMed Central) Public Health. 7, 331-340.
8
United Kingdom
Mencap Reports
• Treat me right, 2004
• Poor access to GPs
• Poor Treatment in
hospitals.
• Blatant discrimination
cases
• Death by Indifference,
2008
• “Senior management within
the Department for Health,
strategic health authorities,
hospital trusts and primary
care trusts see people with a
learning disability as a low
priority”
• “Many healthcare
professionals do not
understand much about
learning disability”
9
United Kingdom
Healthcare for All, 2008 (Michael Report)
• “People with learning disabilities find it much harder than
other people to access assessment and treatment for general
health problems.”
• “insufficient attention given to making reasonable
adjustments to support the delivery of equal treatment…”
• “Health service staff, particularly those working in general
healthcare, have very limited knowledge about learning
disability.”
• “…witnesses described some appalling examples of
discrimination, abuse and neglect across the range of health
services “
10
Canadian Perspectives
• “As a group people
with DD have poorer
health and greater
difficulty accessing
health care than those
in the general
population.”
• Sullivan et al. Consensus
guidelines for primary health care
of adults with developmental
disabilities. Canadian Family
Physician 2006
11
Canadian Perspectives
• “Across Canada, there
have been insufficient
advances in clinical
training and service
developments to meet
the needs of individuals
with disabilities and
comorbid mental health
disturbances”
• Lunsky & Bradley. (2001)
Developmental Disability training
in Canadian residency psychiatry
programs. Canadian Journal of
Psychiatry
• “There are no
attractive career
paths for health
professionals
prepared to consider
a vocation that
emphasizes service
to persons with
developmental
disabilities”
• Hennan, B. (2005). Gaps and
silos: Persons with developmental
disabilities move to the
community: University of
Manitoba Department of Family
Medicine.
12
Canadian Perspectives
• “The value society has
placed on persons with
ID has contributed to
disinterest in
understanding the various
etiologies of ID and their
health consequences,
which has led to
inadequate access to
needed care.”
•
Ouellette-Kuntz, Addressing health
disparities through promoting equity for
individuals with intellectual disability.
Canadian Journal of Public Health 2005
13
Some problems
• Pandemic Triage Protocol
• Poor access to consistent primary care
• Quality of life issues – About 15% of infants
who die in hospital are viable infants but
treatment is withheld or withdrawn because
they are considered not to have adequate
potential quality.
• Issues in prenatal diagnosis and counseling
14
Symptom Masking
Diagnostic Overshadowing
• The individual’s’ disability
becomes the reason for every
issue and routing diagnostic and
treatment procedures are
overlooked.
• It is essential to begin with the
same diagnostic and treatment
assumptions that are typical for
other patients.
15
Limited Communication
• Symptoms are typically described by the
patient.
• Signs are measured directly by observer.
• Patients with limited communication require
increased reliance on objectively reliable
signs.
16
Increased Time Requirements
• Many people with disabilities require more
time for the same health care procedures.
• This creates financial disincentives in a “payby-procedure” system.
• “Difficult cases” may result in poor utilization
and outcome evaluation data.
17
Specialized Equipment Needs
• For example,
examination
tables are
rarely
accessible
making routine
examinations
difficult or
impossible 18
Ghettoization
• When some health services actually make
people with disabilities welcome and strive to
provide services, they are often
oversubscribed by patients who are
unwelcome or provided with substandard
treatment elsewhere.
19
The Deaf Woman &
The Red Cockaded Woodpecker
• Dubner & Levitt 20 Jan 2008 NY Times
• When do the requirements of providing good
services result in maneuvers intended to avoid
any services at all?
20
Perfectionism & REhabilitation
• Rehabilitation Medicine was deeply rooted in
restoring people particularly survivors of war
to their pre-injury state. The goals for people
who had no pre-injury status or who could not
be “restored” were less clear.
• Eradication of conditions is often conflated
with eradication of people who had the
condition.
21
Self-Fulfilling Outcome Prophecy
Expect poor outcome
Withhold treatment
Get poor outcome
22
Difficult Consent Issues
• The major focus of current ethical discourse is
on Autonomy rather than upon beneficence
or preventing harm.
• The application of the principle of autonomy
to people who may not be apple to fully
understand the implications of their choices is
difficult.
23
Pediatrics to Adult Services
• Although pediatric services are far from
adequate, children with disabilities are much
better served than adults with disabilities.
24
The Magic Bullet
• The idea that we will discover a miraculous
prevention or cure diverts too much effort
away from supportive treatments that make
better lives.
25
Already Use More than Their Share
• Many people with disabilities have serious
health issues.
• What would the impact be if we tried to treat
everyone.
• Baby Doe • Candace Taschuk
• Annie Farlow
26
Everyone is in the same boat..
Well… sort of…
• When we are all experiencing the same
problems such as difficulty in accessing
primary or emergency care… it is difficult to
focus on the specific needs of small subpopulations..
• We are all feeling the pinch but these
problems disproportionately impact some
people.
27
The Will to Change
• Change will occur only when key stakeholders
believe that this is important.
• Many stakeholders agree that there is a
problem, but it doesn’t seem to be very high
on anyone’s priority list.
• Some issues may be difficult but others could
be easily resolved.
28
Primary Care Networks &
Group Practice Can Help
• It is important to ensure that the development
of primary care networks include provisions
for individuals with complex needs.
29
Nurse Clinicians Can Play
an Essential Role
• They should not replace physicians in serving
patients with complex needs but should
preprocess files to increase efficiency.
30
Professional Training Curricula
• Training programs are already overloaded with
content and there are many more things that
should be included.
• How do we decide what is important enough
to include.
31
Meeting Convention Obligations
Rights of the Child
• Universal and Special
Protections
• Right to Survival and
Development
Rights of Persons with
Disabilities
Article 25 Health
• Require health professional
to provide care of the same
quality
• Prevent discriminatory
denial of health care… on
the basis of disability
32
Child Protection Intervention
• Denial of medical care is child endangerment
and medical neglect.
33