HD in Private Practice
In the Private Practice episode called “In Which Charlotte Goes Down the Rabbit Hole”, a character named Angie has misled her husband in believing she does not want a family. She has also led him to believe that he is infertile. Angie wants the doctors to lie on her behalf and tell her husband that she is infertile without disclosing the fact that she has prevented pregnancy with the use of a cervical cap. The doctors are concerned with Angie’s desire to lie to her husband regarding such a serious topic.
During this scene, Angie has returned to the medical office after the doctors told her they could not lie to her husband. She reveals a more complicated story regarding her desire to have children.
Angie: I know I shouldn’t have come back. But I looked up Dr. Montgomery on the Internet. You’re a genetic specialist right?
Dr. Montgomery: Yes.
Angie: I thought about what you said…that it’s better to know the truth.
Other doctor: So you told Ray that you don’t want any kids?
Angie: No, not that.
Other doctor: Angie, I don’t think we can help you here.
Angie: No, you have to. You have to help me. I need to know the truth.
Dr. Montgomery: The truth about what?
Angie: I need you to tell me whether or not I am dying.
In this previous scene, we are made aware that Angie might be dealing with something much more serious than infertility.
(Begin new scene)
Doctor Bennett: Huntington’s disease?
Angie: It’s a genetic disorder that causes…
Dr. Montgomery: A degeneration of the brain cells. We know.
Angie: So then you know how horrible it is? You lose control of your body, your brain atrophies, you can’t talk, you can’t eat, you just slowly die. And you’re just a shell. My mom had it, my grandmother had it…
Dr. Bennett: And you think you might have it?
Dr. Montgomery: If her mother had it then she has a 50/50 chance of inheriting the gene.
Angie: And if I have the gene I have a 100% chance of dying from the disease.
Dr. Montgomery: But you’ve never been tested?
Angie: I just wanted to live my life. And then I met Ray.
Dr. Bennett: And he doesn’t know that you could have Huntington’s?
Angie: I wasn’t looking to get married. It was just dating. And then we were in love. And then I waited too long to tell him. And he loved me so much I didn’t want to scare him. I didn’t want to scare me. but now…
Dr. Montgomery: He wants to have children.
Angie: I can’t have a baby knowing that I could pass this on. I can’t have a baby if I am going to die. Last night, Ray and I were watching TV in bed and he was thinking of baby names and my heart started to hurt, physically hurt. I want to think up baby names. I want to grow old with this man and our kids and our grandkids. And I thought, maybe I don’t have the gene.
Dr. Bennett: Maybe knowing the truth is better than hiding it.
Angie: I want the test. I want to know. I want to live.
In this scene, Angie is grappling with the decision to test for Huntington’s disease. She has not disclosed her at-risk status to her husband as she is afraid she would scare her husband and herself if she found out. Angie’s anxiety and hesitancy to test is not unusual in the Huntington’s disease community. In fact, according to a study from the University of Chicago, less than 10% of individuals at-risk for Huntington’s disease undergo predictive genetic testing as asymptomatic individuals. (Oster, Shoulson and Dorsey, 2011).
Dr. Bennett: Hey Violet, we might have a patient that we need you to see. Angie?
Violet: She still lying to her husband?
Dr. Bennett: It’s a little more complicated than that. She might have a terminal illness. He is setting her up in the exam room and I am going to draw blood in a few minutes.
Dr. Montgomery: Can you imagine? She finds the perfect guy, great marriage, they want kids. She was living the dream.
Violet: Not everyone has that dream.
Guy: Violet doesn’t believe in children. She acknowledges they exist because they scream at the restaurants. That’s about it.
Dr. Bennett: I used to be like that, before I had Maya. I was, then I had her, and I’m not saying it was a dream, but it’s pretty darn close.
Dr. Montgomery: You really don’t want children?
Violet: Look! Not everybody’s cut out for it. And it’s incredibly hard for a woman to point out that she doesn’t want kids.
As this scene plays out, we learn that Angie is deciding to pursue genetic testing as the physicians discuss the decision to have children. In this episode, the writers and producers show some bias in that many of the characters believe that there should be no barriers in starting a family. While not unreasonable to present this opinion on a television drama, its implications seep into medical advice given to Angie later in the episode as we will see later on.
Nurse: Angie’s set up in room 2.
Angie: I like the name Margaret, for a girl. We could call her Maggie or Meg. Or Henry for a boy.
Dr. Montgomery: Angie, if the tests come back positive, you’ll need to tell Ray.
Angie: Do you have children?
Dr. Montgomery: No
Angie: But you want them?
Dr. Montgomery: I do.
Angie: Have you thought of baby names?
Dr. Montgomery . Carson. It works for a boy or a girl.
Dr. Montgomery: Angie this is Dr. Violet Turner, she’s our psychiatrist.
Angie: I thought you were just going to tell me my test results. Oh…I have it. I really have it.
Dr. Montgomery: As of now, you have no symptoms. You could go years before you show any sign of illness.
Angie: Illness? You mean dementia, violent rages, wetting myself…
Dr. Bennett: A lot of research they are doing with repression proteins, very promising, hopefully in time…
Angie: Ugh, I don’t have time Dr. Bennett. Time is the one thing I don’t have. I’ve got a great life, an amazing husband, but no time. Dammit, and I don’t have time.
Dr. Turner: You are not alone. You have Ray.
Angie: No, I knew what I was getting into when I took that test. That stupid stupid test.
Dr. Turner: Why don’t you stay? We can talk.
Angie: I can’t, but thank you, all of you for trying to help.
Dr. Montgomery: What about Ray?
Angie: Don’t worry. I know what I have to do.
Genetic testing is an emotional process. For those who have watched loved ones experience the disease, testing can be traumatizing when experiencing it personally. For these reasons, it is incredibly important to find a qualified genetic testing center for HD such as a HDSA Center of Excellence in the United States or through recommendations from social workers. The genetic testing process should involve a neurological exam to test for existing symptoms, a psychiatric evaluation and meetings with a genetic counselor. These physicians should have taken greater care to prepare Angie for her test results and devise a strategy for coping with the results.
For more information on the process, watch our HOPES video on genetic testing here.
Ray: Dr. Montgomery!
Dr. Montgomery: Ray, how are you? How’s Angie?
Ray: Gone. She’s gone. Angie left me. I came home and I found her packing her suitcase and she said her appointment here was like some kind of wake up call. And then she just left.
Dr. Bennett: And that’s all she said?
Dr. Montgomery: Ray, why don’t you…
Ray: I don’t understand. She spends two minutes with two of you and now she throws in the towel on our marriage.
Dr. Bennett: Ray, please, calm down
Ray: I want to know. What the hell did you say to my wife?
Dr. Montgomery: Angie’s here.
Dr. Bennett: She finally responded to our messages?
Dr. Turner: Well it got her to come back. That’s something.
Dr. Bennett: Any ideas on what we say to her?
Dr. Turner: No, you said the baby making game would be fun. I’m not having fun.
Dr. Bennett: Uh, me either. Not with this one.
Dr. Turner: It’s not fair. Good people should get to have what they want.
Angie: I was heading to the airport. You said there was something with Ray.
Dr. Bennett: Ray came by to see us yesterday. He was worried sick about you, not to mention confused and hurt.
Angie: You didn’t tell him? Did you? You cannot tell him!?
Dr. Bennett: Angie, he’s your husband. He deserves to know the truth.
Angie: I let him think I left him. Then he can hate me. Let him move on, find someone, be happy.
Dr. Turner: He’s happy with you.
Angie: But he’s gonna, I’m gonna get so sick. I’m going to die. I don’t want to die.
Dr. Turner: Angie, you have a disease. And you will die. That’s the truth. Hiding it from Ray is not going to change that. But the bigger truth, the better truth is that you are alive now. You’re living. And you should get, you should get everything that life has to offer. You should get what you want. You should get to have a child, and a family and Ray. Just because you’re sick doesn’t mean you don’t get to live your life. Go home. Go tell Ray the truth. Go tell him what the future is and let him decide. A person should get to have a whole life.
It can be devastating for an individual to receive genetic testing results for Huntington’s disease, whether it is positive or negative. International genetic testing protocols for HD strongly encourage the presence of a support person at the various appointments and test result appointment. This individual serves as a secondary information receiver and provides emotional support to the individual testing. As we can see, the physicians in this episode allowed Angie to test without this support person and told her when she was alone and in a vulnerable state. They did not provide a strategy for coping with the results and let her leave the clinic alone without that plan. These types of plans can be essential for the safety and well being of the patient, as well as their loved ones, considering how traumatic it can be to receive such results. Angie, overwhelmed and burdened with this information, tries to leave her husband without revealing the true reason behind her sudden departure from her marriage. It is only when Ray confronts the doctors do they realize how devastating this type of test results can be on those related to the person as well.
As we learn in the next scene, Angie talks to Ray about her diagnosis and returns to the clinic with her husband to discuss family planning.
Ray: So the fertility tests, they came back fine for both of us so we can make a baby?
Angie: We want to share what life I have left with a child. And we were wondering if there was something you could do to make me pregnant sooner rather than later…
Ray: …because Angie doesn’t have a lot of time
Dr. Bennett: I just want to make sure that you understand…
Ray: I understand. Angie will die, sooner than we want. Angie will, uh, but that’s the future and I don’t care what happens tomorrow or in a few years. We have this now. We have us now.
Dr. Bennett: There is still the risk that the child will have the gene.
Angie: We know. We are willing to take that chance.
Ray: If everyone who’s had the gene were never born, I would have never met Angie.
Dr. Bennett: I really…
Dr. Montgomery: Naomi. They want us to help them make a baby.
Angie: A person gets to have their whole life
Dr. Montgomery: A person gets to have her whole life.
Unfortunately, the writers of Private Practice missed an important opportunity to discuss alternative family planning options with Angie and Ray. While Dr. Bennett rightfully attempts to explain the impacts of this type of decision, Dr. Montgomery allows emotion to cloud ability to present options to the couple before allowing them and them alone to make the decision.
Angie and Ray have every right to pursue a family. However, there are many options that allow them to have a child in a manner that can eliminate risk of inheriting the disease if they do choose so. For example, pre-implementation genetic diagnosis is a process that tests multiple embryos for the HD gene before implanting the HD-negative embryos. This process is, however, expensive for some families and can conflict with religious beliefs. Regardless, it is the responsibility of the physician to provide a couple with the variety of available options that would allow the couple to have a child without passing on the gene.
For more information on family planning, click here.
Dr. Montgomery: What would you do right now if you were Angie?
Dr. Bennett: You mean if I knew?
Dr. Montgomery: If you knew.
Dr. Turner : Pretty much what I’m doing right now. (The characters are relaxing and drinking together after work.)
Dr, Bennett: Check you out.
Dr. Turner: No this is margarita #2
Dr. Bennett: I’d be on a plane to somewhere spectacular with Maya.
Dr. Turner: What about you?
Dr. Montgomery: I…I don’t know.
Dr. Turner: I’m going for more serenity.
Overall, this episode of Private Practice is fraught with misleading claims about life with Huntington’s disease. The episode is accurate in saying every individual with a parent has a 50% chance of inheriting the mutant gene. Unfortunately, the physicians in this episode do not properly handle the genetic testing process nor the emotions and ramifications of such a process. Furthermore, the physicians should not allow their own emotions to influence the decision making for family planning, especially without presentation of alternative options for childbearing that will eliminate the risk of inheritance for that child.
For further reading:
Oster, Emily, Ira Shoulson, and E. Dorsey. Optimal expectations and limited medical testing: evidence from Huntington disease. No. w17629. National Bureau of Economic Research, 2011.