Are you addicted to IVF?

June 5, 2013Carole 1 Comment »

Is it possible to get addicted to infertility treatments? In her book, Passage Through Infertility Treatment: A Stage Theory“, Janet L. Blenner describes eight emotional stages that couples may work through on their way through infertility treatments, particularly those that do not resolve with pregnancy:

  1. experiencing a dawning of awareness,
  2. facing a new reality,
  3. having hope and determination,
  4. intensifying treatment,
  5. spiralling down,
  6. letting go,
  7. quitting and moving out,
  8. shifting the focus

From my interactions with patients in the lab, or via my blog, these stages make a lot of sense. They seem similar to stages of grief or stages of finding sobriety after addiction. Some patients get stuck at step 5, “spiralling down”. They are the patients who are confronted with repeated failures and evidence of new hurdles to their fertility, patients for whom even herculean efforts in terms of effort and expense can be expected to be successful less than 5% of the time. If someone told you that you should bet $12,000, $15, 000, even $20,000 on a horse that has a 5% or less chance of winning the race, you’d tell them to get lost, that’s crazy. Or something much more colorful. Yet, IVF patients that go in for multiple rounds of IVF, beyond two or three are doing exactly that. Most clinics have pulled out all the stops, applied all the tricks they know by the third IVF cycle. If it still isn’t working, either the clinic is incompetent or IVF is not the right solution for that patient.

Here’s a hypothetical case.

Patient is 46 years old, has had 6 IVF cycles since she turned 40. Her husband’s sperm is very poor and even ICSI yields no or very low fertilization. Pregnancies have been elusive or short lived. They need a miracle. What can you tell this patient? They don’t have bottomless financial resources. They don’t want to try or can’t afford donor egg. Accepting a donated embryo, while much less expensive, is not palatable to every couple and is not offered in every clinic. What can you tell them? What is left for them to do?

I found this list of questions which I thought were useful on a WebMD article, Addicted to hope for a child,  and have copied them below:

Knowing when to stop fertility treatments isn’t always clearcut. The following signs, compiled from other couples’ experiences, may help you recognize the point at which ”enough is enough:”

  1. The fertility drugs are causing painful or adverse symptoms, ranging from physical pain to severe mood swings.
  2. You’re already in debt and cannot afford another cycle.
  3. You cannot stand to be around anyone but your partner and your doctor. You can’t remember the last time you chatted with a friend.
  4. You can’t remember the last time you did anything for pleasure — reading, sports, going to a movie — that did not revolve around infertility.
  5. You and/or your partner are incapable of becoming sexually aroused just for “fun.
  6. You eat, drink, and sleep infertility. You’re so obsessed about your infertility that it’s interfering with your job, your sex life, your social network, and your relationship with your partner.
  7. You’re showing signs of depression: apathy, loss of interest in formerly pleasurable activities, change in appetite (usually decreased), fatigue, guilt, self-loathing, suicidal thoughts, poor concentration and memory, sleeplessness (waking early and not going back to sleep), and anxiety.

Having worked on the provider side of infertility, I have experienced first-hand the internal conflict I felt between the role of “hope peddler” and “reality checker”. As a professional who is not a physician, I have little leeway in what I say to patients. I am not allowed to give medical advice. I stick to the facts and let patients come to their own conclusions. Sometimes, it was frustrating, especially when I saw some physicians who seemingly never saw an end to offering potential treatments for patients, even those with little or no chance of success. ASRM even published an ethics committee report on the topic: “Fertility treatment when the prognosis is very poor or futile” . You can read the entire paper on-line but here are the take home messages, many of which you can file under “common sense”

1. Definitions: A “futile” treatment is one with less than or equal to a 1% chance of a live birth. “Very poor prognosis” means more than 1% but less than 5% chance of a live birth per cycle.

2.Clinicians can refuse to offer futile treatments, but should consider a referral to another provider, if appropriate. (Appropriate is not defined but maybe Dr. Smith is more optimistic down the street. )

3. Decisions to treat should be patient centered. Protecting your high success rates is not a good reason to deny  treatment. Making money is not a good reason to offer treatment.

4. Clinics can offer futile treatments if the patient has been fully informed about the Risks, Benefits and Alternatives to treatment. My good friend Bob and I disagree about this point all the time. He argues that patients have the right to make all the bad decisions they want, as long as they are fully informed. I agree that they have the “right” but sometimes the consent process is flawed or patients are overawed by their doctor and afraid to ask questions so full informed consent is not always obtained and their best interests are not always served.

5. Thorough discussions are advisable. Decisions to treat or not to treat should be made in cooperation with the couple. The clinic should have evidence -based policies to uniformly offer treatments (or not offer treatments) to patients.

So the bottom line is that, in the end, your doctor can advise you,  but the responsibility to decide is yours.  I have observed doctors prescribe “psychological” IVF cycles, knowing full well that the odds of success were futile, but weren’t imaginative enough or brave enough to find a way to say “no” to the patient when they asked for further treatment. Their solution was to offer up another chance for the patient to experience failure and finally move on with their lives to other options. There is a “culture of hope” in medicine that can outlive its usefulness to patients.

The desire for better decision-making tools has lead to the creation of predictive software to give patients a evidence-based prediction of how likely IVF is to work for them in a future IVF cycle, based on their data from previous cycles and other personal health information relevant to fertility.

To complicate decision making, infertility treatments can become emotionally addictive with the patient becoming convinced that the very next treatment is destined to be successful. After all, we have suffered and spent so much. Well, unfortunately, it may not be. At some point, betting on futile treatments becomes damaging to patients. It does no good to finally accept that medical interventions are futile, decide to adopt and find that you have bankrupted yourself and now can’t afford to adopt or are considered too old to adopt a newborn or even a young child. I have seen it happen and I don’t want it to happen to you.

There are many support groups on-line that offer opportunities to find other people struggling with whether to stop or continue infertility treatments. You are not alone. RESOLVE offers a list of treatment options, but also includes the option of  living child-free. Google “support groups childless living” or “support groups infertility” to find many others. If you are undergoing treatment, continually reassess where you are in the big picture and what you want your life to look like in 5 years, 10 years or 20. You may be surprised to see your answers change as your experience grows.  That’s okay. There are lots of paths to parenting and to living a full, rich life- with or without children. That would be the final stage, “shifting your focus”.  Bon Voyage.

 

© 2013 – 2015, Carole. All rights reserved.

One response to this entry

Join the discussion