Here we are...wrapping up 2015, largely on pause between the major holidays. I'm taking it easy too, so I'm using this blog post to spell out how I can be more helpful to the infertility community in the New Year. That started an honest reflection about how we see self-identities (patients, practices, doctors, me), and what that means about our responsibilities to each other.
I don't work directly with patients--I'm building a marketing firm for fertility centers--but that means I serve patients by proxy. But in what capacity? I recently spoke with a good friend of mine, who has been my business mentor for the last five years. He asked me to start from the beginning: what was my goal? What was I really trying to accomplish?
"Your goal is to make sure that everyone who wants to have children is able to do that, right?"
"Uh, yeah." I stammered.
"Why the hesitation?" he pressed.
Yeah. Why the hesitation? I thought. I found the answer after only a second of reflection. I took a dose of my own medicine in self-awareness.
"No, that isn't my goal." I had to be honest with myself so that I can be honest with everyone else. Of course, I want everyone to realize their dream of having a child. I want everyone to find happiness and I wish there wasn't suffering in the world. But I can't say that it's my goal for everyone to have a child, because I can't directly provide that solution. I'm not a surgeon or a scientist. I don't know how to use science and technology to make someone's dream come true. I am a businessman and a natural-born moderator and I can help people get better terms out of the agreement they're entering into. I must sound like an alien. Practices usually talk about infertility in clinical terms. Patients often talk about infertility with respect to the tremendous social, emotional, and financial stress that it causes. Here I am, trying to translate two languages by adding a third. Still, I think it's hard for practices and patients to meet one another's expectations if we don't face reality.
The Elephant in the operating room
I'll say it if no one else will. Fertility treatment is a business. Money is exchanged for a service. Whether the cost falls squarely upon you as the patient, on a government body, an employer, or an insurance provider, that service will always be expensive. This is state-of-the-art technology and science, mastered by one of the most rigorous training disciplines in modern medicine. I deeply respect that. I also deeply respect that someone (most of the time you) is putting forth a great deal of wealth for that value exchange. That's called business. I hope patients and providers feel at least slightly more comfortable thinking of it this way. You've entered into the transaction regardless. As a "patient-consumer" you are entitled to the most value you can get for what you are paying .
In 2014, I started creating content and resources for fertility practices to provide more value in their role in the relationship. In 2016, I want to do the same for patients so they can go into the interaction with more leverage. To extract more value for both patients and providers, we may need to allow each other to be more vulnerable with our identities. I'm not getting sappy, I'll explain. According to research professor, Brené Brown, Ph.D., we all have wanted and unwanted identities and our unwanted identifies dictate our behavior every day. Brown goes on to say that the perceptions we want to have and want to avoid are often unrealistic.
Why doctors don't like to think of their fertility practice as a business
With some 1,000* board certified reproductive endocrinologists (RE) in the United States and Canada, it would be naive to think that no one among them lets financial motivation influence their judgement. But I have met dozens of REs and I can tell you that generally speaking, their identity as a physician is of greater esteem to them than their identity as the owner of a business. I do not use the words "sales", "customers" or even "business" with them, because they do not use those words. They operate their "practice" and they serve "patients". I want you to know this because the ideal of providing you with the best care is how they self-identify. It upsets them greatly to receive negative feedback from patients. They often tell me that it ruins their week or they lose sleep thinking about it.
I think that doctors don't like to think in business terms partly because they want to protect you. They are your physician and their duty to you in that role is sacred. Apparently they're justified in their aversion to a business identity; fertility treatment as a business does not seem to carry a positive connotation among patients either.
Why patients don't like to think of their fertility practice as a business
If you've spent thousands of dollars on fertility treatment, then you may be far more likely to view it is as business. That's usually a bad thing. When patients feel dissatisfied with their experience, it is fairly common for their public reviews to say that the doctor was "only in it for the money".
You don't want to feel duped, pressured, or misled. You certainly don't want to be made to feel that your necessary medical treatment is a discretionary spend. From what I've observed, business roles are unwanted identities for both practitioners and patients. Brown argues that when we reduce people to their unwanted identities, we miss the opportunity to know their many strengths. We all have different parts of our identity. You may be a patient, a customer, a reproductive endocrinologist, a business owner or an entrepreneur, but none of those describe 100% of who you are. You are also a friend, a joker, a volunteer, a terrible cook, an amazing dancer, and a hardcore Adam Lambert fan. I don't mean to digress, but I've found that cutting people some slack helps you get the most out of relationships in business and in life.
So about getting the most of it...
While helping fertility practices provide more value to their patients, I haven't done much to teach patients how to extract or find that value. You can expect more of that from me this year. This is not an act of charity, by the way. Providing people with the most value that you possibly can is the best way to do business. The more satisfied you are as a patient, the more likely you are to recommend the practice to others. You are going to spend a great deal of money, time, and emotional energy on whichever fertility clinic you choose. You should be able to leverage that choice for:
1). Clear expectations
No one's IVF success rates are 100%. In fact, the national average of IVF success rates based on live birth per transfer of fresh embryos is less than 48% for women under age 35. That in and of itself is a mouthful. What does it all mean? Patients need help digesting all of this information (so do I), and I know the right people to ask.
2). Financial Preparation:
Patients really hate not knowing how much their treatment is going to cost them. Sometimes, patients will say that they felt deceived by their practice because the clinic wasn't up front about the cost of treatment. Occasionally, people report feeling that their practice deliberately manipulated them. How does an $8,000 IVF cycle end up as $15,000 in medical bills? I personally believe that most practices won't mislead you on purpose. Rather, I think they are terrified of giving you the wrong figure. Spoiler alert: insurance is a nightmare. In most cases, the range of coverage comes down to the individual plan. Without diligently investigating your plan, the billing office has no way of predicting what out of pocket expenses you will face.
Furthermore, medication and additional testing vary for each individual. It's understandable that practices can't quote an exact price for total treatment on their website. So how about an explanation of why, and a list of things to consider? I get the impression that some practices are reluctant to do this because they feel this gives other clinics an unfair advantage. If I tell you that an IVF cycle is $8,000, but through additional testing and meds, it could be as much as $18,000, you may choose another clinic who lists their IVF cycles at $8,500. I want to prepare patients for this confusion so that you don't have any unwanted surprises and so that clinics are rewarded for transparency.
3). Access to support
Your clinic should play a role in connecting you with professionals and peers for support. They should have support contact information ready for you before you even step into their practice (on their website). RESOLVE can help you find an infertility support group in the United States, and Fertility Matters can help you in Canada, but there are groups of all kinds and your fertility center should know everyone of them in your area.
4). More choice
I'm talking about what to look for in online reviews. Honestly, in the uncommon instances when I see a fertility doctor with 12 horrible reviews regarding very similar complaints, I wonder how a patient even ended up with him or her. I have looked at more fertility clinic reviews than anyone on the planet (says I). I will show you what to look for and hopefully save you some headaches.
IT's the only way I know
You're experiencing one of the most difficult journeys of your entire life. Sometimes, I wish that I was an RE but I'm barely qualified to apply first aid to a paper cut. I wish I could offer better emotional support than just lending an ear. What I can help you do is use your leverage as a patient-consumer to get more value from your experience. I promise to spend more time on that in 2016.
Have you thought about fertility treatment in these terms before? Is there more you wish you knew?