We need to talk about the patient experience of IVF clinics
Some of the ways IVF clinics fail patients, the implications, and why they need to do better. Musings from a customer experience strategist with nearly a decade of lived experience.
Almost one year ago to the day, I was exiting the elevator and walking into my office, mentally prepping myself for a client meeting and a backlog of work to catch up on. I was in the middle of an IVF cycle, and that week I’d had to take a day off at little notice for my egg collection, reshuffle meetings so I could duck out of work for a few hours to make an earlier than anticipated embryo transfer, and I’d been juggling tracking scans and blood tests in the weeks preceding. For anyone that’s been through fertility treatments, this all probably sounds very typical of the logistical nightmare of managing a full-time job when in the throes of IVF or other fertility treatments.
I was feeling anxious about the time I’d taken off and my perceived feelings of being behind on my work. Adding to that, we’d had an early embryo transfer that cycle so the two-week wait anxieties had kicked in. The two-week wait (the time from an embryo transfer in IVF, or ovulation in a normal cycle, until a pregnancy test) is a difficult time for anyone hoping to fall pregnant. When you’ve done IVF, the stakes are WAY higher during the two-week wait, in my experience, as the investment and toll to get to that point has been so huge. I was trying to compartmentalise the racing undercurrent of thoughts that serve as the backdrop to daily life, like ‘will it stick?’, ‘should I have gone for that run’, ‘what will the due date be if it works?’, ‘have I eaten enough of the right foods?’, ‘Does it matter that I took my progesterone 2 hours late this morning, ‘should I commit to that holiday or will we have a newborn at that time?’, ‘can I even afford the holiday and IVF’, ‘will this $10K drop of our savings all be a total waste?’. Exacerbating these anxieties is the cocktail of high dose hormones I’d been injecting for the treatment, not to mention the pre-treatment meds that had wreaked havoc on my moods before the treatment had even started.
I was expecting a call from the fertility clinic that day to let us know if the second of our two embryos that had resulted from this IVF cycle was good enough to go in the freezer. Our clinic had always called with results emails in the afternoon. I knew the outcome of that call could de-rail my afternoon, so I was counting on a productive morning of catching up on everything I was behind on before an afternoon marred with strong emotions - hopefully feelings of relief, hope and optimism towards the prospect of a future family, or feelings of sadness, disappointment and grief. I refreshed my emails as I walked into the office, and one popped up from the IVF clinic:
“Today is the last day your embryos are able to be grown in the lab. Unfortunately there were no high quality blastocycsts that could be frozen for you. If you have any concerns please email us.
Kind Regards
*** DO NOT REPLY TO THIS EMAIL***
These weren’t the results of a routine iron or influenza test. They were delivering news that answered the question whether or not we were potentially going to have a family or not. Via an email. At 8:30am on a weekday morning. For me to get to that point in our treatment had been like training for an ironman… and was years in the making. And for that moment to be met with a brutal delivery of potentially life defining news via a templated email lacking any feeling or personal consideration to me and my situation, felt like a cataclysmic punch to the gut.
Aside from the fact they delivered this news in a way and at a time I was not expecting, I want to hone in on that email itself. Firstly, it was signed off with a ‘DO NOT REPLY TO THIS EMAIL’. So, who can I talk to for support, and where do we even go from here? Secondly, we only had one embryo (blastocyst) we were hoping we could freeze, not multiple. That minor detail in the email from a private clinic we were paying thousands of dollars to made me feel like a number. They hadn’t even changed their stock standard email, which already lacked any empathy, to remove the plural from blastocyst which made me feel even shittier about our situation. Most people must have multiple embryos from an IVF cycle, I only had one. And it hadn’t developed. I had been banking so much on that embryo. The one inside me would stick, and we’d have a baby in nine months’ time. The other would sit on ice until when and if we decided to complete what society had told me was the perfect nuclear family. That’s the way it worked. That’s the way it had worked for everyone else I knew that had done IVF.
I realise this has become quite the long story painting a detailed picture of just one little moment in an IVF experience. But I guess my reason for sharing so much about this particular moment is to illustrate the ridiculously high and emotive stakes that are at play for anyone undergoing fertility treatment. Finding out whether you got any embryos is just one uphill step on a monumental staircase that is physically, mentally, emotionally and logistically draining to climb, with every chance of getting knocked to the bottom at any moment. There are many other moments on a fertility journey that all contribute to shaping your experience, how you think and feel about the clinic, likelihood of continuing your treatment there, and your mental and emotional wellbeing during this period of your life.
A friend told me about a time she woke up from anaesthetic after an egg collection procedure and glanced at the number written on the back of her hand - two - the number of eggs they’d been able to collect from her. The nurse saw her look at the number on her hand and said, “Oh such a shame we only got two, I'm so sorry love". She already knew from her scans that she wasn’t going to get many eggs that cycle, in fact the egg collection nearly didn’t go ahead. The nurse projected her own disappointment, assuming my friend would also think that two was a low number of eggs - which really pissed her off, as she was stoked to get any eggs at all. She’d previously gone through the gruelling steps of an IVF cycle only to have the egg collection cancelled when the stimulation medication had failed her, so to even go through the egg collection and get any eggs was a win in her eyes. She ended up getting a perfect embryo from that cycle which she now has in the freezer.
Someone else I know recounted the first time her consulting specialist broached the topic of egg donation to her. She said it flew off their tongue without any acknowledgement or consideration of the huge step that would be for her, and in doing so proved to have little understanding of the complex layers to the conversation. A person can experience a lot of disenfranchised grief (grief that is not recognised) as part of infertility, and coming to terms with the grief associated with not being able to have a child from your own eggs being a significant moment and one that should be handled in the right way.
The 30 plus page treatment handbook my IVF clinic gave me at our first appointment has a warning in big bold print on the front page that if your BMI is over a certain number, you can’t have treatment. No further information on how to reduce your BMI in healthy, safe ways whilst optimising future IVF chances, or where to go for this support. Below that, another warning that they’ll cancel your appointment and charge you a fee if you don’t give enough notice of a cancellation.
I have what is considered a ‘normal’ BMI, however I would hazard a guess that this would possibly invoke feelings of shame, sadness and anxiety within what is already a monumentally difficult time. And it doesn’t take a customer experience or business genius to know that smacking a huge warning on the front of a patient booklet that shames people who have an ‘abnormal’ BMI is not great for business.
It took two cycles of ovulation induction and two complete IVF cycles for our clinic to tell us the true success rates, for people like us (spoiler alert, the chances were low). I had to change specialists, and overtly ask the question. This news was delivered in a treatment and consulting space where the walls are covered with pictures of pregnant women and babies.
If the nurse was across the detail of my friend’s background of failed IVF cycles would she have responded differently? If the clinics involved in all these examples invested in understanding the complex and layered human experience of infertility and the treatment journey from their perspectives, would they have known what to say and do to support and make me and my friends feel held, heard and understood in those moments?
If the IVF clinics, commercial businesses no less, shaped the delivery of their service around the very humans undergoing the physically and emotionally invasive and intense treatments, for a shot at what the majority of the population and people around them get for free, would this have changed the memories of these moments and the way the stories are recounted? I think it most definitely would.
Clinic staff, fertility specialists and fertility nurses talk about this stuff every day and they become immune to the gravity of it. They can’t personally understand the layers of the experience if they haven’t been through it themselves, but it’s no excuse for not doing better. Infertility is as common as breast cancer and more common than type 2 diabetes. The emotional, financial, physiological, logistical and financial burden is significant yet is often carried invisibly in a world that doesn’t understand our experience.
Research has indicated that women undergoing infertility treatments experience the same levels of anxiety and depression as cancer patients1. Brene Brown found in her research that infertility and childlessness is one of the biggest areas of human empathy failure2. But you don’t need to tell that to anyone who has paid a visit to infertility station, struggled to fall pregnant, or is on the other side of treatment without their miracle or rainbow baby. They have experienced first-hand their pain and grief being met with comments like:
‘Don’t give up. My cousin/friend/colleague/neighbour fell pregnant at 41 on her tenth IVF cycle.
‘Have you tried (insert treatment/test/miracle remedy)?’
‘I/my friend/neighbour/colleague fell pregnant naturally after X number of IVF cycles - they just stopped thinking about it!’
‘You can have one of my kids!’
And an-all time classic, ‘I bet you guys will fall pregnant on your holiday, as soon as you’re not focussing on it’. Like I’ve put myself in this position, by thinking about it. My thoughts are in fact the very reason I am not pregnant. It’s the ultimate victim blaming statement.
For a life experience that has the same impact on a person’s mental health as having cancer, and is completely misunderstood and not recognised by the world we walk through every day, why aren’t the private clinics who make a commercial profit off our circumstances not understanding and supporting us better? Instead leaving us at times feeling unsupported, bewildered, confused and no less isolated.
Here in Australia, IVF and fertility treatments are not delivered as patients of a public health system so we can’t blame the bureaucracy or under funding of public health services. We are paying, private patients of commercial businesses fuelling a billion-dollar global fertility industry.
Not only is delivering significantly better services and experiences to paying fertility clinic patients the right thing to do from a moral standpoint but there is also strategic and commercial value in doing so. Companies that deliver great customer experiences are more profitable, delivering three times more value to shareholders.3
Just last week, Monash IVF, one of the fertility giants in Australia, settled a landmark $56 million lawsuit over alleged inaccurate genetic testing leading to destroying potentially viable embryos4. Their share price dropped 11% after this story broke. The ethics and frameworks that the multi-million dollar IVF giants operate within are becoming increasingly under scrutiny. Earlier this year, Four Corners did an investigation into IVF clinics, the lack of transparency, and who is holding the corporate giants to account when things go wrong. The commercial and moral imperative for the IVF giants to do better by their patients has never been higher.
With the age women are having babies steadily increasing, and infertility on the rise, more people are are needing the services of fertility treatment clinics. With low cost or public clinics popping up, the landscape is changing and will only become more competitive. Alongside success rates and technology and clinical advancements, providing an experience that is empathic and human at its core (it is in fact, about bringing human life into the world) has the opportunity to be key to a clinic’s success in a growing and increasingly competitive market where patients are demanding transparency, empathy, trust and excellence. And quite frankly, anyone who finds themselves moving through a fertility journey deserves no less from the private businesses they are spending thousands of dollars with, in exchange for giving them a chance of having what infertility has taken away.
Refer to the 54:30 mark in this Brene Brown London appearance, talking on the human empathy failure of infertility and childlessness in a response to a question from audience member Jody Day, founder of Gateway Elderwomen.
https://www.mckinsey.com/industries/retail/our-insights/adapting-to-the-next-normal-in-retail-the-customer-experience-imperative
https://www.abc.net.au/news/2024-08-23/monash-ivf-reproductive-industry-class-action-lawsuit/104259240
Katie, I found so much of this so painfully relatable. The failure to properly acknowledge the impact and toll of fertility issues is ingrained in our healthcare system across the world. It's the same in the UK too. As women we are trained from childhood not to ‘make a fuss’ and this extends to our very biology. No one wants to talk about our periods, fertility, pregnancies, abortions, miscarriages, traumatic birth stories. Unless, of course, it’s a political debate on how to legally restrict and control women’s bodies, freedoms, and choices in these areas. I wish there were more ways for us to join forces and and affect change but sharing and writing about it is one way I have found others like yourself and found some catharsis in my own journey. xx
YES this is so well written, evocative and I can feel the passion behind it. we MUST change this for the future - I actually cannot believe the excruciating lack of empathy, care or attention so many fertility professinals take with the communication and any signposting of support.