Patient Advocacy
As an Infertility Consultant, I am horrified and embarrassed that octuplets were allowed to be created, and the industry has been burdened by the wrath of their birth these past few weeks. The news stories have been less than flattering, and rightfully so. But it is unfair that one story gone awry should cloud what the industry as a whole has to offer. Infertility treatments have helped so many to achieve their dreams of parenthood. These success stories cannot be mitigated.
Now more than ever it is vital to focus on education. Empowering the patients with information about the risks and potential outcomes associated with given procedure, and helping patients to determine an appropriate level of risk given their particular situation and individual risk adversity.
I understand completely, the exhaustive process that infertility involves. It affects every emotion, both in one’s personal and professional life, it greatly impacts one’s financial resources, and physically, continued treatments take a toll on one’s body.
And if this is not enough there are still many factors that need to play into the decision to undergo in vitro fertilization (IVF) treatments. These are the moral and ethical debates. What to do with embryos that have been frozen for future embryo transfer attempts once your family is complete? Should we be able to create more embryos then we intend to transfer so that we can use these embryos for future genetic siblings?
I started my company, Lotus Blossom Consulting after having walked in the shoes of these women who are tortured by these very difficult decisions and face the same crap shoot each time they undergo an IVF treatment. There are no guarantees. The stakes are high financially and emotionally, as well as the desire to pursue each attempt is inflated by the basic and often innate desire to procreate. So how does one strike the appropriate balance when attempting to achieve their end family building goals?
There is no one solution. Each individual is required to make choices that are often very risky. Choices, however, need to fall within the parameters and suggested guidelines that are set in place and congruent with industry standard. These guidelines although suggested, do act in the patients’ best interest. In the recent case of the octuplets certainly, this intended mother should have considered, or been required to undergo four separate frozen embryo transfers limited to only two embryos each. These multiple transfers would have limited the exponential potential risk factors associated with multiple births. The intended mother would have had the same opportunity of achieving her goal of a large family, but the pathway to parenthood would have afforded her a chance at a similar outcome with much less risk to herself and the all of the offspring.
We need to learn from this graphic mishap and move forward with measures to appropriately balance hope with caution. These efforts emanate from education and awareness. Education is empowering. Education needs to include:
• Having a clear understanding of your treatment options and the success rate of each given opportunity at a particular embryology laboratory
• Assuming appropriate risk factors emotionally, physically and financially for each individual situation
• Formulating a clear cut treatment plan, treatment philosophy with specific boundaries to guide you
• Using the above established guidelines to know when to change the course of treatment
• Understanding informed medical consents, risks and benefits before signing and undergoing any treatment
These are the necessary elements that allow you to be your own best advocate through the process.
Being your own best advocate requires effort and commitment. Keep copious notes of your consultations, ask for medical records and test results. In the event that you decide to obtain a second opinion, the information does not need to be re-gathered. Learn about your condition, your options for treatment, and the success rates for couples in your situation. Doing your research will enable you to effectively discuss your situation with your healthcare team. Learn to advocate for yourself by being assertive, staying informed, asking questions, and keeping records. Be certain you get what you need from your healthcare team.
Patient advocacy is more important than ever in order to keep up with the advancements of medical innovations and technologies available to us today. With these advancements come responsibilities. These responsibilities demand a level of conscientiousness, and this needs to be distributed among those who offer and those who receive the benefits.
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