Want to add your voice to the Fertility Lab Insider 2013 ASRM poster?

June 21, 2013Carole 10 Comments »

An essential part of healthcare is how information is communicated with the patient. As a patient, you have the responsibility of clearly making your symptoms, problems and concerns known to your doctor, nurse and lab director. Likewise, your health care team needs to communicate effectively with you so that you understand your diagnosis, your treatment options and the risks, benefits and alternatives to choosing one treatment plan over another.

I know that some patients are very unhappy with how information is shared with them during their infertility treatments. I also know that some patients are quite pleased with their team’s efforts–even if the end result was not as they hoped and they had to make other choices about how they built a family. Are there any lessons to be learned from the wealth of patient experience out there? I think so.

But here’s the kicker: Although there is lots of discussion among patients about the care they get, the healthcare team may not realize that they are not communicating as well as they could be and there often seems to be a cone of silence around the doctor.

Well, here’s your chance to air your opinion about how well or how poorly your doctor/IVF team answered your questions, communicated your results or otherwise worked with you as a partner in your healthcare. I am collecting ANONYMOUS comments on this blog to share at a poster at the next annual ASRM meeting in Boston this October. This is a national and international meeting. My abstract has been selected for presentation based on blog usage data that I collected in the past several years. I can present this numerical data by itself for the poster but I think hearing from patients in their own voice, would be even more meaningful. I would like to add your comments to share with the ART professionals in attendance at the annual meeting.

Your insights from your experience can be part of this year’s 2013  ASRM Annual meeting poster:

Poster Number: P-1149
Presentation Day: October 17, 2013
Abstract Title: ANALYSIS OF THE MOST FREQUENTED POSTS/COMMENTS ON FERTILITY LAB INSIDER BLOG REVEALS
POTENTIAL AREAS OF IMPROVEMENT FOR PATIENT COUNSELING
Session Topic: ART- LABORATORY/BASIC

Please don’t use  your name or the doctor’s/clinic’s name. The purpose of my outreach to you is to provide feedback that doctors and lab directors and nurses everywhere can use to improve how they take care of patients.  If you want to add your voice, leave your comments for the poster in the comment box below. THANK YOU very much to those of you who have already responded to this request previously!!

 

 

© 2013, Carole. All rights reserved.

10 Responses to this entry

  • April Says:

    My husband and I underwent three rounds of IVF, the third resulting in a singleton pregnancy that gave us a health baby boy. We live in a medium-sized Southern city with only one Reproductive Endocrinology Group in town so we had little options unless we wanted to travel to cycle. For the most part I feel like we had plenty of communication between our RE, embryologist, and the nurses/staff. Sometimes prior to the cycle beginning or right before the retrieval, communication could be spotty. Because several months would go by from our last RE visit until the cycle start it was a little like we were ‘floating’ around without much guidance. During our first IVF, which failed, my RE discovered I had an elevated FSH, which was unusual for my young age (24). Unfortunately this information wasn’t passed on to me until after the negative cycle. In the subsequent cycles though communication did improve and I always thought once the retrieval/fertilization occurred we were kept very much updated about our cycle. I hope that in the future our clinic will strive to focus on communicating prior to the cycle initiation, in an effort to let patients know that yes something is going on and that they are paying attention to your case.

  • Carole Says:

    Thank you April for your useful comments! It is true that we seem to be “cycle-oriented” and some patients may benefit from more frequent communications- maybe just to check in- between cycles when second cycles are planned. Carole

  • Carole Says:

    Some questions about social media : Does it aid or impede your health care? Do you want your doctor to text message you? Do you want to reach your doctor via email- and get a same-day response?- after hours or during office hours? Do you or would you follow a twitter feed from your doctor’s office? Does the use of social media by your clinic make you feel more or less cared for? Do you use the internet as a back-up to information from your doctor or is it the first go-to source for health care info? What do you think?

  • Anonymous Says:

    Dear Doctor: It is very hard for me to focus on the substance of what you are saying when you have a giant photo of your own baby sitting right there on your desk. I’m sure what you are saying is very important, but I won’t remember a word of it because my mind is entirely focused on that photo, and it makes me want to burst into tears. I’m at your office precisely because I don’t have–and cannot seem to have–one of those babies, and seeing those kinds of photos doesn’t make the process any easier. Sincerely, Me

  • Rachel Says:

    My embryology lab did not tell me when a lab accident (exploded straw) wiped out five of my nine vitrified blastocysts. They just told me “we had to thaw seven to get two to transfer”, leaving me to conclude that my embryos were just terrible quality.

    I found out months later that the five had been destroyed in an explosion (!?) when the embryologist I was talking to let it slip. I was complimenting her and saying how grateful I was that both thawed embryos had done so well under her care considering that my last batch had been so tough to thaw. “Oh, that wasn’t the embryos,” she said. “There was a lab accident.”

    Nice way to find out.

    I still have a couple of frozen embryos in that lab but I moved to another practice. I can’t trust them. I don’t know enough about embryology to know if they were careless, but I *know* they weren’t honest. If you can’t trust your embryologist, who can you trust?

    Sadly, before this happened I was so grateful to them — I sent them cards and a picture of my growing son every year with my storage check. But I never received full information or any acknowledgement.

    That was years ago and I still don’t have any more kids. What I wouldn’t do to have those embryos (from when I was 34) back. I know accidents happen, but the fact that I still don’t know just what happened, and feel like I can’t trust them to tell me, haunts me.

    Communication, folks: it matters.

    Thanks for letting me get that off my chest.

  • Carole Says:

    Hi Rachel,
    Thank you so very much for sharing your story. I am so sorry that you had this experience. Straws can explode during the thawing process if there is a problem with the seal– either a leaky seal or a cracked straw. Although we are trained to look for these problems, occasionally a defective straw can be missed. Another common safeguard is to only place 1 embryo within each straw so if one straw explodes, you don’t lose everything- or nearly everything – that the patient has. But here’s the thing– we can’t prevent 100% of lab errors or accidents- but we can prevent 100% of communication failures. When an accident happens in the lab, it must be documented in the patient’s chart, in an incident report for follow-up error prevention analysis, and disclosed to the patient as soon as the facts are clear. In my experience, patients are much less upset when you are honest and come clean about issues, than when you obfuscate the facts to preserve the image of the program.

    The worst programs are those in which a culture of transparency is NOT encouraged and everyone is worried that any mistake will be blamed on them and they will lose their job. This finger-pointing workplace culture–in my experience- is much LESS common in large hospital settings which accept that human error is inevitable–and survivable for the hospital–and modern hospitals tend to have a risk management system in place that requires transparency and punishes employees that FAIL to disclose errors rather than punish those that do disclose errors. Studies have shown that patients are less likely to sue if they feel that providers have been honest with them about medical errors. That trust between patient and doctor/lab/program, once lost can’t be regained. The best programs have a plan in place to prevent errors and when errors do happen–as they inevitably do– there is a plan in place to understand the cause of errors–usually several failures cascading, and hopefully revise protocols to prevent the errors going forward, and to get the patient back to a “good’ place and on-track with their treatment. This may mean giving patients a free cycle or other consideration, depending on the problem. Most patients understand that human error happens, but nobody accepts being lied to. Thanks for your feedback.

  • Carole Says:

    Thank you Anonymous. I think your point is well-taken. Unfortunately, being a doctor does not guarantee empathy for others. Hopefully, your note will make some docs rethink their use of family photos in the infertility office.

  • Amy Says:

    I am 31 – I have DOR with an AMH of .65. No male issues. We are in our 1st IVF cycle after 2 years trying with 3 miscarriages. Our RE is GREAT. He is kind, compassionate, and professional. He talks us through every stage of the process and makes sure we ask lots of questions. I especially appreciate how he tells us what he is seeing during ultrasounds.

    The staff however is another story. When we made the decision to move forward with IVF we were told we would be sent a calendar. 3 weeks later I still hadn’t received it and had to call and demand it. The same thing happened with billing – they insisted IVF wasn’t covered under my insurance although my insurance assured me it was. The billing staff did not tell me that I would owe $2500 for PGD and cryo until 2 weeks before it was due. And that’s only because I asked.

    The worst part has been how rushed the nurses are. They can’t wait to get me off the phone and they always seem to be in a hurry at the clinic. I also feel like they don’t give me the whole picture – just “you’re doing good” when what I want is numbers and medical facts – how many follicles? What is my progesterone level? Etc. I am not trying to second guess them, only trying to be an informed patient.

    Thank you so much for this blog and for this question.

  • Carole Says:

    Thanks, Amy, for adding your voice!!

  • Diksha Says:

    I’m sorry on one hand that you have to go through this at all, but very glad for you on the other bcseuae it gives you another chance at having a baby. This is a very exciting time, and I am really glad that today’s appointment went so great!!

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