We genetic counselors take great pride in our role as patient advocates. Everyone is equally deserving of our best professional skills and unbiased support. Rich, poor, immigrant, homeless, transgender, disabled, non-English speaking …. we like to think that none of it makes any difference. We give them all our best non-directive shot.
On occasion, though, we encounter a patient who compromises our desire and ability to provide unbiased, empathic care. This may stem from subtle counter-transference issues, like the patient who evokes your ex-spouse or a client who is overly demanding and obnoxious. With professional growth and supervision, we can learn to deal with such situations.
But eventually you find yourself with a patient who makes you stop and say to yourself “You know, this one is crawling under my skin. I’m not sure I can be a good genetic counselor for this person.” Let me give a (hypothetical) example of patients who might evoke such deep feelings.
Osama bin Laden and Ayman al-Zawahiri, the two leaders of al-Qaeda, are arguably America’s greatest and most reviled enemies. Both men also have families. One of bin Laden’s 22 children, Abdul Rahman, was born with hydrocephalus (1/22 is approximately equal to the semi-mythical 3% risk we are so fond of quoting to our patients; congenital anomalies blindly cross all religious and ethnic boundaries). bin Laden flew his son to the UK for treatment, but declined a shunt, and instead chose to treat him with honey, a common folk remedy in the Arabic world. al-Zawahiri ‘s fifth daughter, Aisha, had Down syndrome, born after nearly 20 years of marriage (the effects of advancing maternal age also are oblivious to culture and creed). Aisha died at age 4 of exposure to freezing temperatures the same night her mother was killed in an air raid as the family fled Afghanistan during the early days of the war.
What if one day you walked into your office and there sat either bin Laden or al-Zawahiri, seeking your clinical help? Could you dispassionately provide your best genetic counseling skills to these men? I, for one, would have a hard time. But our ethical system only works when it works for everyone, not when it is selectively applied. Lawyers know this well, and that is why they defend even the most evil criminals.
The example is admittedly extreme and, not least of all, unlikely. However, the information about bin Laden’s and al-Zawahiri’s families is neither fictional nor a wild Internet rumor; it is taken from The Looming Tower, Larry Wright’s superb Pulitzer winning book about the rise of al-Qaeda. I use the example to illustrate the point that we all have our limits, but those limits may be very different for each of us.
Which patients challenge your ability to provide genetic counseling? Would you be deluding yourself if you believed that your ability to engage all patients knows no limits? I encourage you to leave comments below – I am interested in hearing your thoughts and experiences.
The DNA Exchange 
Bob-
Very interesting topic to address! This is something that I think about quite often actually- can we really be empathetic with every patient we see, and if not, what are the exceptions? I’m new to this whole GC thing (1.5 years out) but I’ve found myself struggling with a few patients already. The patients that challenge me the most are those that I believe to be unnecessarily anxious. For instance, you’re telling me that a CPC in your otherwise healthy fetus is enough to keep you up at night? In those situations I find it hard sometimes to feel sympathetic, because in my mind, from personal and professional experience, I know it can be a lot worse.
When you used the hypothetical case of bin Laden or al-Zawahiri my first instinct was actually some sympathy for their situations- not to say that I am going to be handing out hugs and warm fuzzies to them, but those are real tragedies and I feel more for their families and for the saddness that occured. I always tell my patients that genetics is a family affair, so a diagnosis or potential problem in one person affects many individuals. When I have a hard time dealing with a person/couple that I think are being overly anxious, I try to imagine all the others that could be affected by this situation, and that helps me. I think we all have certain types of patients that we have a hard time understanding or connecting with but we can still find a way to help them and give them good genetic counseling.
I live in a state with alot of Mexican illegal immigrants, who come in because their OB referred them for AMA counseling or similar. I find myself resentful of the fact that they have state insurance that reimburses very poorly. For example, I am required by office policy to offer CF carrier testing to every patient, and it makes me crazy when these state insurance patients ask “Do I have to pay for it?” and I can only answer “No” and think to myself (“the rest of the taxpayers will pay for it for you.”) I realize the issue of immigration is a complex one, and I realize the policitosocial environment in Mexico and other countries is difficult and if you are born there you would naturally strive to improve your situation. Its just that my sense of fairness is offended by people who cut in line and take things for free. In past years there have been hospital ER closings due to loss of revenue, and when I have to provide free services to one person, then the next person I see struggles to pay for the tests they want because they work and purchase insurance and need to meet a deductible, it just doesn’t seem fair. I really don’t think it affects the way I counsel, but it’s an issue I see every day and I struggle to keep it in the back of my mind.
I think the patient’s that I struggle with most are the ones who come in with unreasonable demands (not requests). I want this test result by tomorrow. I understand that they are anxious about results and this is what makes them react the way they do, but you would expect a reasonable person to be more rational when you explain why testing takes so much time. The other kind that I get irritated with are the ones who will throw their money in my face so that I can expedite their test results. And finally there are these 12-13 year olds who come in for first trimester screening that really get my blood boiling (oh and these are not cases of abuse or anything)….
Rupin,
I have an opposite pet peeve. I had a patient recently without insurance. Many of my patients live near the poverty level and so this is common. I try to help them in any way that I can. She wanted free testing, so I asked this patient to bring her 1040 so that I could check with Myriad.
She made 10% more last year than I did!
At that income level, not having health insurance is a choice, based on our priorities of course. She was pretty upset that she didn’t qualify simply on the basis of not being insured, but I had a really hard time empathizing.
Your hypothetical situation immediately made me think of an actual one that I experienced in my first year as a professional gc. I was in a prenatal setting, and a client’s husband had a swastika tattooed on his forearm. Since I work in an area with a large Native American population, I couldn’t be sure that it was a nazi white supremicist thing (the symbol is an ancient American Indian one as well). However, maybe it was my imagination, but he seemed to purposefully roll up his sleeve to expose it. At the very least, he wasn’t making an effort to hide it. I looked directly in his eyes when I noticed the symbol, but didn’t get the impression he was trying to be threatening. Still, my heart skipped a beat, and I wasn’t quite sure what to do. Could I be sure of the symbol’s meaning to him? Should I ask him about it? How would I respond to his answer? Should I be transparent about my discomfort but continue the session? Should I just get up and leave – refuse to serve him? In the end I simply went on with the session as if I had not seen the symbol on his arm. I wish I could say for sure that I was guided by principle, but I might have just been too afraid to address it. So, I guess I find it most difficult to maintain my professional role when I sense bigotry or intolerance in my clients. But the experience begs other questions: Is it ever appropriate to directly address that discomfort with a client? Are there any gc’s who have done this? Can it be done in a way that still allows the goals of gc to be met?
Thanks for an interesting thought experiment, Bob.
Israeli physicians and other health care providers, recently famous for their humanitarian efforts in Haiti, are also renowned for their humane response in treating their own enemies locally.
Israel provides quality health care to Arabs, including those from occupied territories. They treat civilians, military, and even actual terrorists with blood on their hands who have “succeeded” in murdering Israeli citizens.
My niece in Israel was stabbed (a so-called “minor injury”) by a terrorist who was shot but not killed by a passerby. The terrorist was treated for his wounds in an Israeli hospital.
A friend, Dr HM, was in Israel during one of the wars and told me about treating wounded Arab soldiers from the opposite side.
Among many other sources, check out:
http://www.youtube.com/watch?v=OXoAu_iLw64 (Treating the Enemy – Israel/Palestine);
http://www.youtube.com/watch?v=99o9dE-ymvc (Israeli Doctors Above Politics)
Thanks for sharing. What a plaeruse to read!
Thank you, Norm. Curious to know how you came upon this posting, at this time.
Sarina