Ethics Exam #3 - Living with a Disability and Ethical Issues in Disastrous Conditions

Assumptions about people with disabilities

1. decreased quality of life
2. don't assume it's always good to be cured
3. don't assume "without empirical confirmation" that people are always better off with medical interventions
4. losing things doesn't always need to be bad

Vulnerable population

1. Bear an excess of the burden of illness, disease or disability
2. Increased relative risk or susceptibility to health related problems
3. Experience higher mortality, lower life expectancy, reduced access, diminished QoL
4. Often discriminated against, marginalized, disenfranchised, lower social status, lack of power

Sources of vulnerability

1. stages of human development
2. poverty
3. race
4. physical and cognitive limitations
5. lack of social support
6. neighborhoods and environments

Determining vulnerability

1. by group membership
2. by each individual's type of vulnerability

Advantages of determining vulnerability by group ID

1. Easier to identify group's vulnerability
2. Easier to mandate special protections
3. May allow for culturally and linguistically appropriate consent processes and forms

Weaknesses of determining vulnerability by group ID

1. Overlooks individual variations within groups
2. Some may belong to more than one group
3. Status of group may change over time
4. Labeling or stigmatizing

Models of disability

1. charitable
2. medical
3. social
4. identity

Charitable

1. Depicts disabled people as victims of circumstance, deserving pity
2. The well-intended obsession with finding cures or helping the individual distracts from looking at causes of exclusion and disablement

Medical

1. the focus is on impairment
2. sees the disabled person as the problem
3. persons with disabilities are to be adapted to fit into the world as it is
4. power to change the predicament seems to lie within the medical and associated professions, with their talk of cures, rescues, normalization, and science
5. others' assessments, usually non-disabled professionals, are used to determine fate (education, jobs, birth, procreation)
6. common environmental barriers, practices, and attitudes limit opportunity and cause the disability

Social

1. While someone's impairment (e.g. being unable to walk) is part of them, 'disability' is something created by external societal factors
2. Focus is on the interaction between a person and their environment, highlighting the role of a society in labeling, causing or maintaining disability within that society and favoring the majority
3. The disablement is created by oppressive social systems
4. This model gives individuals with disabilities control over their situation is empowering

Identity

1. Claims disability as a positive identity
2. Claims disability as a positive identity
Aids in the development of a collective identity
3. Promotes the benefits of experience and lifestyle of living with an impairment
4. Adopt a positive self image

Americans with disability act

1. civil rights law
2. Purpose - people with disabilities have the same rights and opportunities as everyone else
3. Prohibits discrimination against qualified individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to general public
4. Employers must make "reasonable accommodation" to people with different needs
5. Also ensures protection from unjust discrimination based on a perception of risk, just because someone has a record of impairment or appears to have a disability or illness (e.g. features which may be erroneously taken as signs of an illness)

Why are disasters different?

1. Available resources are overwhelmed
2. Large numbers of casualties - sometimes
3. Infrastructure is diminished - most of the time
4. Physical and psychological concerns - lack of resources, panic, diminished decision making ability
5. affects folks from all walks of life (homeless to wealthy)
6. standards of care change in a disaster

How do standards of care change in a disaster?

1. Is there privacy with waves of hundreds of patients presenting to EMS or the hospital?
2. Can we treat everyone?
3. Should we treat everyone given we have limited resources?
4. Are there legal protections?
5. Ethical guidelines?

Framework for determining standards of care in a disaster (IOM report - 2009)

1. Provides a basis for healthcare providers a framework for disaster core standards of care
2. based on fairness, duty to care, duty to steward resources, transparency, consistency, proportionality, accountability

Fairness

1. actions/policies must be viewed as fair by all parties even those disadvantaged by the circumstances (Irrelevant factors must not impact care - race, neighborhoods, ethnicity, or personal connections)
2. allocation of resources is key - must be done prior to an event

Duty to care

1. primary duty of the healthcare provider is to the patient even if there is some risk to the provider; patients should not be abandoned; recognizing scarce resources may restrict treatment choices
2. healthcare institutions must support providers - proper equipment and procedures; protocols separating triage from treatment so those providing care only look to deciding care - not who will survive

Duty to steward resources

1. Utilize resources to save as many people as possible (fluctuating conditions and resources)
2. conflicts with duty to care
3. critical to establish a process/protocol/authority for decision making and not wait until under distress

Transparency

1. A public engagement process - reflect community's values and establish trust
2. Must engage all aspects of the community - experts and educated and those not so much, those with disabilities, elderly, racially and ethnically diverse

Consistency

1. Whatever is decided, all groups must be treated the same
2. Eliminate any unfair practices
3. Must remain flexible as circumstances dictate, but only after careful deliberation
4. Has to do with being fair

Proportionality

1. Policies will include aspects which are very burdensome - Social distancing, school closures and cancelations of large events, quarantine
2. These must serve public needs such as limiting the spread of disease
3. Limited in scale, scope, and time
4. Responsibility? Who is responsible for the decisions, care, needs

Accountability

1. All of those involved in any aspect of planning must take responsibility for the decisions made and those which need to be made
2. Those concerned (healthcare providers and other experts and clinicians) should raise concerns to appropriate people before an incident
3. Decisions must be made with a large degree of situational awareness and adjusted as new data emerges