Informed Consent

Informed Consent: Do you have what you need to make a good decision?


I was invited to participate in a panel discussion last month at Toronto’s Mount Sinai Hospital’s bi-annual Fetal Update conference. I was there as a parent, joined by three ethics professionals, a fetal therapy physician, and a social worker.

We were part of a session called “Ethics of Fetal Intervention,” which represented a noticeable diversion from the rest of the program. (To illustrate: we were slotted between sessions on Neural Tube Defects and Cardiac Lesions.) The 100+ audience included sonographers, radiologists, obstetricians, nurses, and other clinicians involved in antenatal assessment and diagnosis. They were an interested and engaged crowd – made for a lively discussion with lots to digest afterwards.

I wish I had recorded the session! Instead, I offer a summary of my thoughts from one of the discussions, which started as a dialogue about Informed Consent.

A dilemma:

What exactly constitutes informed consent? At what point can a clinician believe that the patient is fully informed and has what she needs to make a decision? How much information is enough? I was moved by the dilemmas and uncertainties expressed by the audience – they do their best, yet know there are shortcomings.

A story I shared:

At the time we were making decisions about Owen’s fate, I was focused only on whether or not the risk was worth the intervention. It was a relatively easy decision – if we didn’t intervene, he would likely have died. So we proceeded with an in utero procedure, inserting chest and abdominal shunts into the developing fetus in order to drain accumulating fluid (caused by a condition called hydrops fetalis).

At the time, we didn’t know about his future disabilities. There was no indication, even given his delicate condition, that he would have issues beyond those typical of prematurity. I’m often asked, “What would you have done if you had known…?” Not an easy question to answer, but I’ll hazard a guess.

If someone had said, “Your son will never walk, talk, hear, hold up his head, eat on his own, will always need full care and will probably die before he reaches his teens” – it’s possible, given who I was at the time, that I would have considered a late-term abortion. Or at least would not have intervened and shifted to palliative care.

However, if someone had said, “You are eventually going to reach middle age having lived an extraordinary experience that will change your world view and make you a better person. You will do more than just survive – you will embrace your son and his life and even his death, and you will be grateful that you took this path” – well, I may have hesitated, but then perhaps would have moved forward with more confidence and less fear.

The point I was making:

My 28-year-old self couldn’t have imagined how my 42-year-old self would mature and transform. The medical information – which I perceived as complete and enough to go on – offered nothing to predict the realities of what life might hold.

With the passage of time, my recollections of life with Owen have little to do with medical details and trivia, hospitals and interventions, and everything to do with our relationship, our community and our experiences together.

My conclusion?

Those with lived experience (which almost no one in the neonatal clinical setting is likely to have) can offer the most revealing glimpse of what life might be like, should the parents make certain decisions.

A possible solution:

Bring together a diverse panel of parents to discuss the decisions they made and the consequences of those decisions; including those who chose to terminate their pregnancies. Perhaps create a series based on diagnosis, prognosis or whatever else. There can be additional panels of teens and adults with disabilities and diagnosed conditions, as well as panels of clinicians discussing their own decision-making processes regarding how they present information, communicate with families, and their feelings about it.

Record the sessions and make them available to deliberating parents and patients. Encourage them to wonder how their future selves might look back on this terribly confusing time.

A question (or two!) for Mamapedia readers:

When you had to make a difficult, urgent medical decision on behalf of your child (prenatal or already born), do you think you’d find it useful to see how other parents reflect on their own decisions? To hear how things turned out, and about what they regret and what they are glad they did?

Would you find it useful to hear grown children comment on how they feel now about their parents’ decisions?

And lastly, if you have been in such a position, could you imagine sharing your intimate feelings about it?

A bit about Mount Sinai:

Mount Sinai Hospital in Toronto is a world leader in fetal therapy, a discipline that provides life-saving or otherwise impactful interventions to fetuses (and moms) in distress.

We’re no strangers to their Fetal Medicine program – Owen’s interventions were performed there. He was also delivered at Mount Sinai and lived in neonatal intensive care for three months. I have a deep respect for the staff of the Fetal Medicine Unit – I have known some of them for 15 years now and have witnessed first-hand their ongoing efforts to continue improving services and communication – both of which, for the record, are unparalleled. It speaks volumes about their integrity that I would be invited to talk candidly about my experiences and reflections in an open forum.

Jennifer Johannesen is an author, blogger and website developer. She lives in Toronto with partner, Carsten, and her 12 year-old son. Read more at Yes Or No.