J Genet Counsel (2012) 21:187–188
DOI 10.1007/s10897-011-9432-3
PROFESSIONAL ISSUES
My Achilles Heel—When a Patient’s Request Pushed
my Boundaries
Lucinda Freeman
Received: 12 April 2011 / Accepted: 16 November 2011 / Published online: 30 November 2011
# National Society of Genetic Counselors, Inc. 2011
A few years ago I found myself in a genetic counselling
session that revealed my weakness as a practitioner and it is
only now, with the benefit of time passed, I can explain
how it became a strength.
I was counselling a woman who was a known carrier of
Haemophilia. We were discussing her reproductive options
for an unplanned pregnancy. Having counselled couples in
similar circumstances, I was there with my genetic
diagrams, information, request forms and supportive
counselling toolbox at hand. In describing her feelings
about being a carrier of Haemophilia the client used words
such as “afflicted,” “devastated,” “isolating,” “scared” and
“a life lived in fear.” She knew she did not want to pass on
her suffering to her children. In addition to wanting a
healthy son she also did not want daughters to experience
the same life of emotional suffering she had as a carrier of
Haemophilia.
The client asked me if I would facilitate prenatal testing
to identify the Haemophilia status of both a female or male
fetus so she could make her choice whether to continue the
pregnancy. In principle, she was asking me to support a
termination of pregnancy for an otherwise healthy carrier of
Haemophilia. At this point I reflected on my role as a
supportive genetic counsellor. I wanted to help the client.
But, I also knew I needed to work within the ethical
framework of genetic counselling, respecting autonomy of
the unborn child who may be an otherwise healthy carrier
L. Freeman (*)
Department of Molecular and Clinical Genetics,
Royal Prince Alfred Hospital,
Missenden Road,
Camperdown NSW 2050, Australia
e-mail: Lucinda.freeman@email.cs.nsw.gov.au
of Haemophilia. I felt I was being torn between the client’s
wishes and my professional practice.
Initially I was shocked at the client’s request and asked
myself “How am I going I help this client?” when I could
not morally agree with her request. Debriefing in supervision I
explored my high level of discomfort with the client’s request
to terminate a pregnancy of an otherwise healthy baby. On a
practical level I was supported by my Head of Department in
not offering the client prenatal diagnosis for a carrier female
on the grounds that being a public hospital we could not cover
the costs without medical reason. However, on an emotional
level I needed to explore my feelings and how I would manage
a similar situation again in the future.
By listening to the client’s strong emotions I gained
valuable insight into the phrase “perception of burden.” I
had the opportunity to really imagine myself in “her shoes.”
I had never thought that being a carrier of a genetic fault
conferring a very small risk of medical concern (some
female carriers will experience mild bleeding during
surgery) would bear such a heavy weight on an individual.
As I experienced her sadness I could understand her need to
end the Haemophilia in her family. But what was I going to
do as a genetic counsellor?
I remember when I first started genetic counselling, I
told my supervisor that I wanted to help people. He said
that would be my Achilles Heel. At the time I had no idea
how my desire to help people would ‘bring me down’ as a
genetic counsellor. This case allowed me to see what he
meant. I wanted to help people and here I was with this
client, realising her suffering and unable to help her. I think
what he meant was that as a genetic counsellor I wouldn’t
always be helping people into a positive or better outcome.
I finally achieved some clarity when recognizing the
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(sometimes subtle) difference between helping a client and
being a supportive genetic counsellor. When we help
someone we want to make it better for them, whereas
supporting someone doesn’t necessarily improve a situation
but can assist clients in finding their own way; by
exploring, addressing and acknowledging their feelings.
This is what I want to do as a genetic counsellor. I realised
that even though I couldn’t help her identify if she had a
carrier daughter I could still acknowledge her reasoning in
coming to her decision. I could encourage her, and in turn
other clients, to fully explore their lived experience of a genetic
disease when making reproductive choices. In practicing this
Freeman
way I can offer support in the process whilst not always
agreeing with a decision.
I have often thought about this client. Knowing we
would not test a female fetus, she elected for testing and the
pregnancy was identified as a male and she proceeded with
haemophilia testing. I do not know what she would have
done had the fetus been female. Even though I couldn’t
facilitate her choice, I understood why she needed to make
that decision and in doing so identified how I could still be
supportive. I realised that even if I can’t always help a
patient with their choices I can still be an authentic and
sound genetic counsellor.