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Monday 10 June 2013 –
Daily Update
– 7
J
ude Byrne and I knew that care-workers deserved more than blame and
finger-wagging. In Vienna in 2010, she and I grappled with an important
question: how can we support care workers in the ethical dilemmas they
face, while also challenging them to question their bias against parents
who use drugs and other key affected populations?
I work with the Coalition for Children Affected by AIDS, and wanted children in
key affected populations to get good quality, family-centred care and support.
Jude had told me there were real barriers to this – criminalisation, bias, and
justifiable mistrust of service users. Jude was approaching the question as a
mother who uses drugs, someone who had experienced first hand the unfair
judgments of care workers.
We knew the question was complicated: if people who use drugs are like
other parents, then we can’t ignore that some might neglect or abuse children
– just as non-drug using parents might. A care worker might be legitimately
concerned,
even after
checking his or her bias at the door. But how could we
separate the bias from the real ethical dilemma?
Almost nothing exists out there to help care workers make ethical decisions in
community-based settings. Only the wealthiest hospitals have ethicists on their
staff. Meanwhile the rest of the world carries on, doing what they think best, but
often relying on personal value systems, or on policies that can never foresee
every situation. And care workers are among the lowest paid workers, many of
them members of the populations they are serving. It isn’t easy to flout an unjust
law when you have your own children to feed and you could lose your job.
We put together a working group – as representative as we could make it –
comprising key population groups, ethicists, funders, and care worker
organisations. We conducted an international survey. We learned that at least
monthly and
sometimes daily
, care workers face ethical dilemmas – situations
where different values, beliefs, responsibilities, or concerns pull them in different
directions. They have to make difficult decisions; ones that will result in the most
good, or the least harm. When they don’t get support, this creates a huge
burden and can lead to burnout. The guilt and questions linger – did I make the
best choice? Was there a way to avoid the harm I may have caused?
We designed a toolkit that we think is easy to read and easy to use. At the core
of the toolkit is a code of ethical values and principles to anchor the process. A
simple four-step method guides care workers. They’re prompted to question their
bias while collecting all the information and separating fact from assumption. They
weigh up the ethical values and principles in conflict. They elaborate options and
their possible consequences. Then they make a decision, act on it, document it,
and evaluate later, debriefing with colleagues.
Draft three of the toolkit is being pilot tested this summer, and is being
presented on
Monday 10 June
in an oral abstract session from
11am-12pm
.
For those interested in a hands-on workshop on how to implement the guidance,
there will be a workshop delivered by members of the project’s working group
from
5:30pm to 7pm
the same day.
Difficult Decisions
John Miller, of the Coalition for Children Affected by AIDS, explains
how he became involved in developing an ethical decision-making
toolkit to combat bias against parents who use drugs
‘A careworker
might be legitimately
concerned,
even after
checking his or her bias
at the door. But how
couldwe separate the
bias fromthe real
ethical dilemma?’
JOHN MILLER