Many couples who might successfully utilize IVF techniques to
build their families fail to benefit from these technologies. Although
roughly half of the three million infertile couples in this country seek
medical intervention to have a child, the overwhelming majority stop
short of IVF. This is true even when their chances of achieving a live
birth through that technology are good.
What are the barriers that
cause so many people to stumble on their way to IVF? The answer to that
question is complex, because what is a stumbling block to one person
may provide no hindrance to another. It is fair to say, however, that
there are general issues that cause concern to all would-be IVF
patients. First is the fear that IVF will not be successful, or that
there will be bad outcomes for the mother or baby. Secondly, IVF may be
perceived as an expensive and unaffordable option. Thirdly, the
techniques employed may be seen to be inconsistent with a couple's
religious or moral beliefs. And finally, many patients are concerned
that they will not be able to meet their current professional and
personal obligations while undergoing a rigorous course of treatment
that includes IVF. None of these concerns is insignificant. In my years
of practice in the field, however, I have come to recognize the many
ways that these issues can successfully be addressed and the barriers
overcome.
Specifically, I would suggest that couples who want to
try IVF but are finding the task daunting look at using decision-making
approaches and cost-benefit analysis to review their options. I would
also suggest that patients develop treatment plans with an endpoint in
mind, and that they begin to research the range of family building
options available to them while they are still in treatment. Finally, I
have found that patients who consciously and constructively integrate
IVF treatment into other life activities are better able to complete
their chosen course of care. This is not to say that IVF is for
everyone, because it isn't. The intent of this article is to help
couples who want IVF to overcome their personal stumbling blocks and
achieve that goal.
Decision-Making
It is important to recognize that decision-making regarding a course
of treatment is difficult and can easily be done poorly. Reliable
information can be difficult to obtain or understand, and most of us
lack experience in this type of decision-making until circumstances
require us to do it. At that point, it may feel like decisions have to
be made within an extremely short time frame. Additionally, different
people make decisions in different ways, some intuitively, some based on
experience, and others based on a straightforward analysis of the
facts. Much depends on what types of decisions we have had to make in
other areas of our lives and on our personal experience. Sometimes, our
values and beliefs inform our choices in ways that are difficult to
explain to others. Often a bias towards securing benefits and avoiding
harm in the present and near future enters our thinking. We may say we
are making a conscious choice, but perhaps in reality, we are more
concerned with protecting the status quo. We may develop fears or
anxieties that greatly exceed actual risks. At the other extreme, there
are those who feel that "it won't happen to me" and are prepared to make
choices by discounting risks substantially, whether they are highly
unlikely, or even, significant. Distinguishing between a reasonable and
unreasonable exaggeration of concern is often difficult. "Framing"
decisions so that either benefits or risks are over-emphasized is a
pitfall that can be difficult to avoid. Usually, the best approach is to
evaluate available choices in alternative ways looking at the various
options from different perspectives.
The first step in
decision-making in infertility care is to determine your individual
religious, moral and ethical values. IVF can present some unique and
complex issues. Your views must then be openly discussed with your
partner because it is imperative that both of you reach agreement on how
to start or expand your family. Your physician must also agree with
your intentions. Ethical dilemmas can arise when options for care are
seen to conflict with the couple's autonomy, quality of life, or their
perception of socially responsible behavior. Should there be significant
differences of opinion between the physician and the couple,
alternative sources of infertility treatment should be identified. At no
time should a couple or a physician feel that they are pursuing a
course of treatment against their best judgement or personal beliefs.
The
issue of the quality of infertility care needs to be addressed. Since
infertility management can be a complicated process, it is important
that your physician have the requisite level of expertise. The American
Society for Reproductive Medicine has established guidelines for the
provision of infertility services, with three levels of care. Some
patients will have initial diagnostic tests and/or treatment performed
by providers with only basic capabilities. This can be appropriate if
patients are referred to the more experienced providers when indicated
by the guidelines. Most IVF programs provide very good care, but you
should ensure that the IVF clinic you choose belongs to the Society for
Assisted Reproductive Technology (SART), and be comfortable that the
clinic's laboratory quality, medical care and financial services meet
your needs. You should complete a comprehensive medical evaluation and
acquire information about treatment alternatives other than IVF from the
clinic. You should then determine a plan of action that sets out
specifics of your medical treatment, financial management, time limits,
lifestyle modifications and utilization of family building options that
are acceptable to you. These many decisions are often facilitated by use
of a modified cost-benefit analysis.
Cost-benefit Analysis
In regards to infertility, a cost-benefit analysis is designed to
compare and evaluate the eight options available to expand or start a
family. These options are:
1. No treatment,
2. Standard infertility testing and treatment involving surgery,
3. Controlled ovarian hyperstimulation with "fertility drugs",
4. Treatment of the male partner and/or intrauterine insemination,
5. IVF
6. Third party reproduction involving donor eggs, donor sperm or surrogate (host uterus or gestational carrier),
7. Adoption,
8. Child-free living.
The benefit of any of these choices
depends on the value that one places on the outcome. Clearly, the
outcomes of the choices are not all the same, ranging from one's own
genetic baby, to an egg donor or sperm donor baby, an adopted baby, or
no baby at all. With IVF, there are many "values" that must be
considered. It is important to ask the hard questions at the time a
treatment plan is being developed. How do you feel about
intracytoplasmic sperm injection (ICSI) which is considered by some to
be less "natural" than IVF? Do you want to cryopreserve (freeze)
embryos? How many embryos do you want to replace in each cycle? To
maximize your chances for pregnancy, you may want to replace several,
but fewer will limit the chances of multiple pregnancy. How do you feel
about induced reduction if you had triplet or higher order pregnancy?
How do you feel about the advantages and disadvantages of raising twins
or even triplets? What are your feelings about amniocentesis, congenital
anomalies, and pregnancy complications? How do you feel about donor
sperm, donor eggs, host uterus, embryo donation and stem cell research?
These are all issues that require thoughtful decisions.
In
addition to determining the value of various outcomes, one must
accurately assess the probability that each outcome may occur. In the
case of IVF, this requires that a knowledgeable physician complete a
comprehensive evaluation of both the male and female, and assess their
likelihood of achieving a live birth in light of those findings. To
determine the benefit of any outcome, the relative value of each choice
must be multiplied by the probability that the outcome will occur:
Benefit = Value X Chances of Success. You decide the relative value to
you of the different outcomes, and your physician tells you what the
chances are of achieving each outcome. It is evident that if either you
don't value a choice very much or if the chances for success are low,
the benefit of the choice is also low. Each potential choice is then
prioritized according to the one that has the highest benefit, the
second highest benefit, the third highest benefit, and so on. The next
step will be to evaluate the "cost" of each choice, since the cost will
reduce the benefit. In this way, the order of your choices might change.
There
are four kinds of costs. The first is financial. IVF costs an average
of $12,000 to $15,000 per cycle, and this is often not covered by
employee health plans. It is important to find out exactly what is and
is not covered by your insurance, so that the amount of personal expense
may be determined. You can then decide how much money, if any, you are
prepared to spend from medical savings accounts, retirement funds, or
savings. Many couples defer major purchases while seeking treatment, but
this is not always possible. IVF costs can be quite high, and they may
appear to be more than some patients, especially younger ones, can
afford. However, it's better for a couple to make the sacrifices to get
the appropriate care when they are younger because their chances for
success are better. Because the cost of care is such a major stumbling
block, some practices are now beginning to offer affordable financing
for treatment packages and a refund guarantee or if your treatment does
not result in a live birth. You should ask your physician about the
availability of these financial tools.
The second major cost is
time. If you are younger, time is not as critical. Once the woman's age
is over age 35, however, time begins to play a more important role,
affecting how quickly one needs to move to more intensive treatment such
as IVF. Women often feel that a barrier to IVF is the amount of time
required for office visits and procedures, time that must be taken away
from one's job. It is important to identify in advance the best way to
manage this problem, often by discussing this with your employer and
physician. Time for infertility treatment can also detract from time
with your partner, family, friends and personal commitments. Again, the
best approach is to discuss these issues with those involved, make a
plan to minimize the impact of infertility treatments, and minimize
unnecessary personal, family, work and social commitments.
The
third major cost is the risk of IVF. Recent articles and media attention
have focused on IVF outcomes that appear to be less favorable than that
with non-IVF pregnancies. However, several earlier, larger studies have
shown equivalent outcomes. But all these studies have design problems.
Additionally, the adverse outcomes cited in some studies occur in very
low frequency. Generally, IVF treatment is safe and outcomes for both
women and babies are good. Certain subgroups of IVF patients are at
higher risk than others, and further well-designed studies are needed to
answer some important questions. However, the risk of death or serious
illness from any pregnancy, regardless of whether or not IVF is used, is
several times higher than the risk of the drugs or procedures used in
IVF.
Physical risks can include short-term complications of the
actual treatment. Some women worry that the fertility drugs will use up
more eggs than normal ovulation, but this does not occur. Ovarian
hyperstimulation syndrome (OHSS) with some bloating and pelvic
discomfort occurs in a small percentage of patients, but is serious
enough to require hospitalization in only one per 300 cycles.
Complications such as bleeding or infection from egg retrieval occur
only once per several hundred cycles, and almost never require
transfusion. Obstetrical complications are mostly related to age of the
mother and her underlying medical condition, as well as the presence of
multiple pregnancy, but are not substantially different with or without
IVF when controlled for the number of babies being carried. It is
possible that infertility patients are at a slightly higher risk for
obstetrical complications unrelated to type of treatment. Obtaining high
quality obstetrical care and bed rest during the pregnancy can reduce
many of these potential problems. Spontaneous abortion and ectopic
pregnancy rates are about the same with or without IVF, although IVF
reduces the risk of ectopic pregnancy in women with fallopian tube
disease. In the past, concerns were raised about the risk of ovarian
cancer following use of fertility drugs. Multiple well-designed studies
have demonstrated no increased risk of ovarian cancer, and a possible
small increase in risk of borderline ovarian tumors. Indeed, pregnancy
itself significantly reduces the risk of both ovarian and breast cancer.
After almost a quarter century of IVF, there are no other known long
term problems for women who have had babies through IVF.
Some
patients are concerned about the risks of laboratory procedures.
Intracytoplasmic sperm injection (ICSI) which is used for male factor
infertility, has the same live birth rates as non-ICSI IVF. A few men
who otherwise would have no chance of becoming fathers carry genetic
conditions that can be passed on to their male offspring. Hypospadius,
or an abnormally located opening of the urethra in the penis, also
occurs more frequently, but still rarely, in baby boys born after ICSI.
This problem is often minor and can be surgically repaired. Assisted
hatching, often used for older women or those with prior failed IVF
cycles, is associated with a higher risk of monozygotic twins, which
have higher risks of complications than a singleton pregnancy.
Cryopreservation of embryos is associated with a lower live birth rate
after thawing, but the babies are just as healthy as those born from
fresh IVF embryos. Donor sperm and donor egg babies also have the same
outcome as IVF with the patient and her own partner's genetic material.
Others are concerned about the potential loss or mix-up of sperm, eggs
or embryos in the laboratory. Of course, mistakes can happen, but they
are very rare. Laboratories that belong to SART undergo rigorous
inspection every two years of their personnel, equipment and systems to
ensure that the highest quality care can be delivered. Great emphasis is
placed on correct identification of sperm, eggs and embryos, so that
these types of problems are most unusual.
A major exception to the
safety of any fertility treatment, however, is the risk of multiple
pregnancy, twins occurring with about 30% of deliveries and triplets
with just under 5%. While many infertile couples consider twins to be
the ideal outcome, multiple pregnancy has a higher risk of premature
delivery and low birth babies. Even twins carry about twice the risk of
death or severe disability to each baby compared to a singleton
pregnancy, and triplets face about 4 times the risk of death or serious
disability for each baby. However, a healthy baby is the result well
over 95% of the time with IVF.
Importantly, there are ways to
reduce the risk of multiple birth. The Society for Assisted Reproductive
Technology (SART) initiated national guidelines regarding the number of
embryos to transfer so that live birth rates are maximized and multiple
births are minimized. Triplet rates have been coming down for the past
few years. Furthermore, every patient has the option of specifying that
fewer embryos should be replaced if she wishes, including a decision to
replace only one embryo. Extra embryos can be cryopreserved for
subsequent cycles if the woman does not conceive, or to try for a second
baby later if she does. Every patient can and should discuss this issue
with their physician and make a decision with which she is comfortable
regarding the number of embryos to transfer. If multiple pregnancy does
occur, spontaneous reduction or loss of a fetus from a triplet to twin
or twin to singleton pregnancy occurs 25% to 50% of the time. In some
additional cases, patients may elect to undergo induced reduction
(pregnancy reduction, selective reduction, multifetal reduction) from
triplets or more to twins. This procedure is physically safe and
effective approximately 90% to 95% of the time, and can improve the
chances of delivering fewer, but healthier babies. However emotional and
personal value issues are important in the decision to undergo this
procedure.
The final cost is often the most important, and that is
the psychological or emotional cost of infertility. Infertility can be a
real life crisis for many people, affecting how they feel about
ourselves as women and men, wives and husbands, and potential mothers
and fathers. Frequently patients have to suffer in silence because
infertility is so poorly understood by society. Patients may have
concerns about financial issues, the "unnatural " conception that occurs
outside the body, the impact of infertility on themselves and their
partner, or the effect on their marriage and sex life. They may find it
difficult to deal with friends and family, to change from their
gynecologist to a reproductive endocrinologist, to take fertility drugs,
or to lose time at work. The science and the language that describes
IVF are new and intimidating. Suddenly one is supposed to know about IVF
procedures, cryopreservation, ICSI, assisted hatching, multiple births,
induced reduction, and the use of donor gametes. Additionally,
adoption, with all of its complexity, may be an issue that is just over
the horizon. It is normal to be anxious and concerned about these many
aspects of infertility and IVF! There is a lot to think about.
But
there are some things you can do to deal with this problem. The first
is for both partners to communicate to each other clearly how they feel
about these issues and how they want to approach it, what choices are
acceptable and which are not. It is also important to look after
yourself with a healthy diet, exercise and sleep. Meditation or yoga can
be very helpful for people dealing with the stresses of infertility. It
is important get as much information as possible, although one should
remember that not all information is reliable. Check your source, and be
cautious on the Internet. RESOLVE and the American Society for
Reproductive Medicine are particular good places to get information.
Your physician should also give you information about their evaluation
of your specific situation. Write down questions at home so you can
remember them when you see your physician, and if it is urgent, call
your physician. If you are not getting the answers you want, you don't
understand what your chances are and what the plan is for your care, if
you feel the infertility investigation and treatment are taking too
long, or if you are not feeling supported by your physician's office, it
may be time to look around. You should ask for a referral to another
reproductive endocrinologist or IVF clinic. Finally, some situations
warrant the assistance of trained counselors in this field. They might
be helpful, for example, if you are considering the use of donor eggs or
sperm, if there are difficult choices to make, or if you are overly
anxious, depressed or not managing the infertility situation well.
RESOLVE may be able to give you a list of infertility counselors. Of
course, joining a RESOLVE support group is also an excellent idea.
Once
you have this information from your physician, discuss in detail and
come to decisions with your partner how you would like to proceed. You
might be able to do this using the "20 minute rule" where you discuss
infertility for just 20 minutes (or whatever time you agree upon) daily
until you reach resolution, or you might take a weekend away somewhere
quiet to review your situation. Once you have determined what is
acceptable to you, know the prognosis and planned treatment with
timelines, have decided how to afford treatment, and how to manage your
personal, family and work time, you can make a written plan to deal with
the many aspects of IVF. Patients should proceed at their own pace,
with options acceptable to them, within medically appropriate
guidelines. Some will decide not to pursue IVF, and that is perfectly
appropriate for those patients. For others, the approach described above
can help overcome the stumbling blocks to IVF, allowing them to build
their families through this very successful medical technology.
