What do we owe patients with very poor prospects? Is it okay to offer treatment just because someone wants it? Is it okay to offer it because someone will benefit psychologically, even if not physically?
I call it "palliative fertility care" — care where there is no reasonable prospect of achieving a live birth, but where there might be a psychological benefit to going forward anyway. Palliative care, by definition, is about relieving pain, not tackling the cause of a condition. It provides comfort at the end of the road.
Sometimes I feel the term fits. Other times I think not. But it does send a clear message: this is to help you come to terms with your reality, to ease the pain of that reality, and not, strictly speaking, to help you get pregnant.
Women have told me they were glad they did it — and were glad they weren't prevented from doing it.
Below, I share the thoughts of a doctor, a therapist and an ethicist. Like almost everything in fertility medicine... it's complicated.
8 minute read
Let's call them Trish and Abe. They're a heterosexual couple. They haven't managed to have kids before now, but they know for certain they want them.
They also know that, given their age, 45, the odds are against them. They just want to know they've really tried. If they could give it their all, just once, it might allow them to move on — whatever that might mean. They've always been lucky people, and they are hoping they'll be lucky one last time.
Trish undergoes ovarian stimulation, which means taking fertility drugs to stimulate extra eggs to develop. But the stimulation produces only one follicle, which may or may not contain an egg. The doctor tells them it's not worth going through a retrieval.
This is disappointing, and to them, it doesn't feel like a full effort. They decide to try one more time. On their second attempt, they get just two follicles, but they want to avoid regret — to be able to reassure themselves that they've tried everything — so they do a retrieval. They get an egg, which is exciting, but after it is fertilized, it doesn't grow, so there is no transfer.
But have they really tried everything if they haven't even done a transfer?
Fertility specialists know a lot of Trishes and Abes. And like all the others, this Trish and Abe do not stop there. They ask the doctor to do something — anything — just a little differently. And they try again. And again. Maybe they get embryos to survive, maybe they transfer one or two, maybe there is an early pregnancy. But almost certainly, there is no live birth.
What do we owe these patients with poor prospects?
Is it okay to continue with treatment? Where does patient autonomy end and physician duty of care begin? What language should be used to convey that this is more a psychological treatment than a physical treatment? Would words like "palliative" help here — or would they hurt? Should patients be let in on the reality that "we tried everything we could" often just means "we tried until the money ran out"?
Autonomy is important, says Vardit Ravitsky, professor of bioethics at the University of Montreal, but so is really understanding your odds. "How your doctor talks to you becomes such a key part of this," she says.
"It's not just about numbers, it's also about framing. It's also about the nonverbal. It's about context. There are so many ways that a doctor can manipulate the presentation, the naked facts, the chances of success, the statistics, to make it sound like you could be the one for whom this would work."
There can sometimes be a little too much "cheerleading," says Carole LieberWilkins, a Los Angeles-based therapist who specializes in family and fertility. "Sometimes they'll say things like, 'We had a patient in the office last week, and she was 46. And, you know, she's four months along right now.' And as long as there's one to point to, somebody can feel like, 'See? It worked for her.'"
Lorna Marshall, co-founder and medical director of Pacific NW Fertility, in Seattle, agrees that communicating low odds to patients is difficult. "The chance is not zero, and our tests are not perfect in predicting outcome. And so it does leave this little wiggle room," she says. "And there are always stories of women who have gotten pregnant with their own eggs, and we do have a handful of them — but really, it's just a handful." She says there are many clinics that, if asked, would have to come clean about the fact that they have never had a full-term pregnancy in somebody over the age of 45.
But a doctor can only control what she says, not what a patient hears, says Marshall, and some patients only hear select parts. "You sit and you tell them this, and say, 'What you really need to do is think carefully about egg donation. We'll set you up for some counselling. This is going to be the best way for you to form your family.' And they come back and say, 'We decided we want to try.'"
When patients with very poor prospects decide to go ahead anyway, LieberWilkins calls their attempts "throwaway cycles." "There are so many times that somebody is saying, 'We've done three IVFs. I've got one more embryo. Clearly, it's not going to work. I'm too old.' But in most cases, it's just too hard to move forward — wherever forward is — without giving it the last Hail Mary. Because the possibility of it will linger in the mind for a very, very, very long time, no matter what the future holds."
LieberWilkins finds that the word "throwaway" helps the patient accept that, no, it does not make sense. "And I tell them, 'You know, it doesn't have to make sense. A lot of the decisions we make around reproduction are not necessarily rational.' A lot of what we do — in life, let alone in fertility treatment — is based on regret avoidance," says LieberWilkins. "So oftentimes, the choices we make are the choices that are going to give us the least regret in the future."
Both LieberWilkins and Ravitsky can see a place for the word "palliative" too. It's what you do when you've got nothing else, says Ravitsky: "'You won't have a baby, but not because we failed you.'... It conveys some sort of empathy and effort. We've done what we could, but now we got to the end our abilities."
In the American Society for Reproductive Medicine's ethics committee report, "Fertility treatment when the prognosis is very poor or futile," "futile" is defined as a less than one percent chance and "very poor" as under five percent. The report encourages doctors to be clear about their policies from the outset, but leaves the decision of whether to treat or not up to the individual physician.
"[C]linicians may ethically offer treatments they deem to be futile if, in their professional judgment, they believe the patient will receive some psychological benefit from proceeding," the document states. Pointing out that some patients may hear one percent as "hopeful," the report says doctors must be clear with patients about the fact that the odds of success are "virtually nonexistent" and "appear to be futile."
Some physicians may consider this wasteful or fraudulent or inconsistent with their professional integrity, the report says.
LieberWilkins thinks it's important to examine the possible harms to the patient as well — and not just that a person might not have a baby at the end.
There's a time delay, for one thing. These patients are not getting any younger. Age could limit other options.
Or the woman could get pregnant and then miscarry. Miscarriage can be devastating.
Miscarriage can also lure the patient into trying again. "That's going to be the carrot that says, 'Oh, you almost made it. So maybe if you did it again, it would stick,'" she says.
There is some medical risk.
And then, there is financial risk, says LieberWilkins.
"The endpoint is often money," says Marshall. "What I always tell people is that, yes, you can try, but I want you to leave enough resources, both emotional and financial, that you can do egg donation to start your family."
LieberWilkins says she dislikes the idea that a patient can "do everything possible." She discourages that line of thinking altogether. "In our world, there is no stopping," she says.
What does it even mean to do everything you can? She challenges them to imagine: What if you decided not to do that next cycle? They tell her they might not feel so tired. They might not feel so defeated. They might have more money. They might feel regretful, yes, or they might be closer to making a different decision, says LieberWilkins.
"Part of the reason why people try so hard with their own eggs is because they find the concept of moving to donor eggs so distasteful," says Marshall. "I try to build up donor egg as being a really good choice for them. I talk to them about, you know, that you can keep doing this, but in the end, what you want is to have a family. And you can try all you want with your own eggs, but it's probably not going to work. And the end of your story is probably going to be that you'll get pregnant with an egg donor, and these are just steps that you're taking as you move toward that process."
Marshall says that even at the first visit, when many patients declare they would never consider donor eggs, she tells them she always assumes that the patients' first choice is to use their own eggs and their husband's sperm. But that's when she opens the conversation about egg donation. She addresses the hesitations people have about donor eggs — worries that they might not feel that they are the "real" parents, for instance. She talks to them about words.
"And I talk to them about how I have cared for so many patients who are in their position, that have gone through many, many cycles of IVF trying with their own eggs and are unsuccessful. And when they finally do donor egg, they can't believe they waited so long to do it."
LieberWilkins says that some people eventually decide to stop trying for children. But of the ones who move on to adoption or egg donation, they tend to come to a similar conclusion: "What they will say, almost to a person, is: 'Clearly this is the child I should have had.'"
Ethics committee of the American Society for Reproductive Medicine. "Fertility treatment when the prognosis is very poor or futile." Fertility and Sterility. 2004.