Friday, August 19, 2011

Friday Freakout: Bad Clinic Behavior

I don’t understand why IVF clinics aren’t more sensitive to what their patients are going through. I don’t understand why they aren’t more careful to ensure they don’t stress us out more than we already are, and why they don’t make the effort to provide us with more information and greater transparency, so that we can have some sense of trust and control in a situation where we are vulnerable and powerless.
Photo by takomabibelot

The Wacky Wicketeer and I have been patients at three clinics in Northern California. Here are some of the stressful mistakes we have encountered:
·        Failed to diagnose me properly
·        Failed to inform us of miscarriage risks to IUI due to our diagnosis
·        Miscalculated dates on IUI protocol calendar
·        Made us wait over an hour in the waiting room, making our appointment over an hour late (multiple occasions, and multiple clinics)
·        Miscalculated prescription quantity
·        Mishandled post-miscarriage fetal tissue
·        Improperly tested post-miscarriage fetal tissue
·        Lied about limitations of genetic testing of post-miscarriage fetal tissue
·        Failed to return phone calls (multiple occasions, and multiple clinics)
·        Failed to respond to emails (multiple occasions, and multiple clinics)
·        Talked to me like I was an idiot for asking about the safety of progesterone suppositories during pregnancy, after I had already miscarried once while on them
·        Delayed submitting my prescriptions to the specialty mail-order pharmacy until the last minute (I only received them 18 hours before I had to use them because I spent two days on the phone yelling and pleading with people)
·        Failed to timely submit an insurance claim
·        Minimized & failed to warn me about potential recovery time after egg retrieval
·        Delayed my cycle start date by a week for a non-medical reason after we had already rescheduled work, work travel, and numerous other activities
·        Tried to delay my cycle start date by a week for a non-medical reason a SECOND TIME, after we had already re-rescheduled everything around the first change
·        Delayed giving me dates for an injection class until a week before, such that I couldn’t go because I already had bought plane tickets, conference passes, and made reservations for an out-of-town conference
·        Failed to give me a pre-emptive pain med prescription for the most painful experience of my life
·        Failed to provide thorough information on costs and insurance coverage for IVF
·        Failed to provide an information packet of any sort on how that clinic does IVF
·        Lack of transparency as to staffing changes that may be occurring during a cycle

I have received apologies--from a newly-hired nurse for rescheduling, and from a doctor for my painful experience. I still see that nurse and doctor. Nothing else on this list has been corrected or apologized for. For a service that we gamble tens of thousands of dollars on, and that requires us to substantially rearrange our lives for a painful, mere attempt, at having children, the very beneficiaries of our struggle, the fertility clinics, should be more conscientious of how their mistakes and behavior affect us.

The larger, immediate problem when these sorts of mistakes occur is that it strikes at the heart of an in-progress IVF cycle (or other treatment). It makes us doubt the very people that are supposed to be important members of our team. For me, the single thing that most influences my anxiety level during an IVF cycle is my faith and trust in my fertility team. That includes my clinic staff, nurses, embryologists, doctors, phlebotomists, pharmacists and geneticists, as well as my husband. While other people can be supportive and helpful during an IVF cycle, if they aren’t, I can block them out while in-cycle. I can’t block out this group. I need them, and I need them to be reliable and trustworthy.

I know we’re not the only ones, so what clinic mistakes and issues have added to your infertility stress?

3 comments:

  1. Hugs so sorry sweetie, wish you didn't have such an awful experience with your RE office :( Guess dh and i were lucky to have an awesome RE staff who took great care of us

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  2. YES. Many of these have happened to me. Let's see, some highlights to add:
    - RE fired while I was in the midst of ivf cycle (he was already a replacement for the doc I'd chosen, who had moved away). Already on meds, I felt stuck with new doc I HATED.

    - Nurse forgot to put a med on my protocol, then gave me the wrong one to do last-minute. I was already responding poorly in that ivf cycle, but this mixup destroyed what follies I did have, causing cycle to be cancelled (this also caused me to finally seek a new clinic!)

    - When I tried to ask new RE about my POF and endo, he literally refused to answer--would not acknowledge I was speaking. When I persisted, he muttered that I should ask the nurse and left the room. When I asked the nurse, she said these were questions for the doc. I started crying so hard in my frustration that I had to be hustled out the back door so as not to frighten other patients.

    - At my third clinic (5th RE), donor cycle coordinator kept forgetting to tell me about steps for getting my BFF approved as our donor, and/or giving me incorrect information on what needed to be done. Super stressful since there were so many pieces in play! At least my RE was absolutely wonderful.

    I agree that we should be able to expect better. I don't know why incompetence abounds in the reproductive medicine field.

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  3. Yes... We fired our first RE because of her terrible bedside manner. I had an FSH level come back at 31 and she told me I couldn't have kids. Turned out it was a fluke due to my herbs, and my FSH actually is in the low teens (still not great, but...)

    My second RE, who does everything except IVF, is awesome. But his office staff is rotten. They don't call in prescriptions when they say they will (e.g. immediately, because I need to pick it up on the way home), when I had a family emergency, they couldn't be bothered to find me a pharmacy that stocked fertility meds (not even in a different state -- in a different part of the Bay Area, about 45 miles away!) -- I ended up calling pharmacies while driving to see my mom in the hospital and then calling the office to tell them where to call it in. Ugh.

    My current RE's office is pretty great. My only complaint is that I wish they were more proactive about telling what you to expect after a BFN or a cancelled transfer (e.g. when to expect AF, have to take a natural cycle off, etc.)

    None of this compares to my sister in law, who had a failed first IVF after the clinic failed to use ICSI, despite her husband's vasectomy reversal... Oops.

    For the money we pay, all the service should be outstanding.

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