PROFESSIONAL ISSUES

My Achilles Heel—When a Patient’s Request Pushedmy 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 counsellingsession that revealed my weakness as a practitioner and it isonly now, with the benefit of time passed, I can explainhow it became a strength.

I was counselling a woman who was a known carrier ofHaemophilia. We were discussing her reproductive optionsfor an unplanned pregnancy. Having counselled couples insimilar circumstances, I was there with my geneticdiagrams, information, request forms and supportivecounselling toolbox at hand. In describing her feelingsabout being a carrier of Haemophilia the client used wordssuch as “afflicted,” “devastated,” “isolating,” “scared” and“a life lived in fear.” She knew she did not want to pass onher suffering to her children. In addition to wanting ahealthy son she also did not want daughters to experiencethe same life of emotional suffering she had as a carrier ofHaemophilia.

The client asked me if I would facilitate prenatal testingto identify the Haemophilia status of both a female or malefetus so she could make her choice whether to continue thepregnancy. In principle, she was asking me to support atermination of pregnancy for an otherwise healthy carrier ofHaemophilia. At this point I reflected on my role as asupportive genetic counsellor. I wanted to help the client.But, I also knew I needed to work within the ethicalframework of genetic counselling, respecting autonomy ofthe unborn child who may be an otherwise healthy carrier

of Haemophilia. I felt I was being torn between the client’swishes and my professional practice.

Initially I was shocked at the client’s request and askedmyself “How am I going I help this client?” when I couldnot morally agree with her request. Debriefing in supervision Iexplored my high level of discomfort with the client’s requestto terminate a pregnancy of an otherwise healthy baby. On apractical level I was supported by my Head of Department innot offering the client prenatal diagnosis for a carrier femaleon the grounds that being a public hospital we could not coverthe costs without medical reason. However, on an emotionallevel I needed to explore my feelings and how I would managea similar situation again in the future.

By listening to the client’s strong emotions I gainedvaluable insight into the phrase “perception of burden.” Ihad the opportunity to really imagine myself in “her shoes.”I had never thought that being a carrier of a genetic faultconferring a very small risk of medical concern (somefemale carriers will experience mild bleeding duringsurgery) would bear such a heavy weight on an individual.As I experienced her sadness I could understand her need toend the Haemophilia in her family. But what was I going todo as a genetic counsellor?

I remember when I first started genetic counselling, Itold my supervisor that I wanted to help people. He saidthat would be my Achilles Heel. At the time I had no ideahow my desire to help people would ‘bring me down’ as agenetic counsellor. This case allowed me to see what hemeant. I wanted to help people and here I was with thisclient, realising her suffering and unable to help her. I thinkwhat he meant was that as a genetic counsellor I wouldn’talways be helping people into a positive or better outcome.I finally achieved some clarity when recognizing the

L. Freeman (*)Department of Molecular and Clinical Genetics,Royal Prince Alfred Hospital,Missenden Road,Camperdown NSW 2050, Australiae-mail: Lucinda.freeman@email.cs.nsw.gov.au

J Genet Counsel (2012) 21:187–188DOI 10.1007/s10897-011-9432-3

(sometimes subtle) difference between helping a client andbeing a supportive genetic counsellor. When we helpsomeone we want to make it better for them, whereassupporting someone doesn’t necessarily improve a situationbut can assist clients in finding their own way; byexploring, addressing and acknowledging their feelings.This is what I want to do as a genetic counsellor. I realisedthat even though I couldn’t help her identify if she had acarrier daughter I could still acknowledge her reasoning incoming to her decision. I could encourage her, and in turnother clients, to fully explore their lived experience of a geneticdisease when making reproductive choices. In practicing this

way I can offer support in the process whilst not alwaysagreeing with a decision.

I have often thought about this client. Knowing wewould not test a female fetus, she elected for testing and thepregnancy was identified as a male and she proceeded withhaemophilia testing. I do not know what she would havedone had the fetus been female. Even though I couldn’tfacilitate her choice, I understood why she needed to makethat decision and in doing so identified how I could still besupportive. I realised that even if I can’t always help apatient with their choices I can still be an authentic andsound genetic counsellor.

188 Freeman