Patient Decisions: When You’re Just Not Up to Making the Call

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For most patients and in most clinical situations, decision making is and should be a shared process between the patient and the clinician (and often the family). But there are some cases when we, expert clinicians versed in scientific and experiential knowledge, need to make a decision for the patient—not out of some paternalistic idea of our authority or superiority, but because the patient really wants or needs us to take on that burden.

I was six months pregnant with my second child. The pregnancy had gone smoothly, which was a blessing after having delivered my first child 10 weeks premature following two weeks spent in a tertiary care center. That pregnancy had been problematic from the beginning—early bleeding, and then a hemorrhage at five months, at which time they’d diagnosed me with placenta previa. It was one of those pregnancies where you were thankful for each additional day that brought you closer to the nine-month mark.

But this time, everything was going smoothly—no bleeding or cramps, an active baby that ultrasounds confirmed was growing well . . . until one morning in February, when I started with cramps that progressed to pain and a lot of pressure. An hour later, I was in the labor and delivery suite. The cramping and pain had stopped, but an exam revealed that the amniotic sac had slipped down through a dilated cervix.

I was only at 20 weeks’ gestation; if born, the baby would have no chance of survival. The key was time. If I could get to 24 weeks—at that time considered the earliest point of viability—they would send me down to Albany Medical Center, the tertiary care center where my first son was born.

The plan was to keep me in Trendelenburg position in the hope that the amniotic sac would slide back into the uterus by gravity, at which point my obstetrician would do a cervical cerclage to hold it there until the baby was viable outside the womb.

Or maybe my obstetrician wouldn’t. There was a risk that cerclage would stimulate my already irritable uterus, sending it into contractions that couldn’t be stopped. I knew this because my obstetrician had told me the risks of both watchful waiting and cerclage, informing me that if gravity accomplished what we wanted, I would have to choose between them. Every morning, he would come into the room, assess me, and remind me that soon I would have to decide.

For two weeks I lay semi–upside down, afraid to move. What seemed hopeless at the beginning became ever more hopeful as each day passed and the amniotic sac gradually receded until it was almost completely back inside the uterus. Reckoning day was upon me, and I agonized over what to do, seesawing from certainty for one approach to certainty for the other, but mostly feeling uncertain, confused, and scared.

I never had to make the decision. After what happened next, cerclage was no longer an option. One day while using the bedpan I looked down and saw the baby’s head, inside the placental sac, protruding at the vaginal os. I screamed for the nurse and cried for hours and then decided not to eat. No food meant no bowel movements, was how I figured it. My thought process was that I would do anything to save my baby, and if my health suffered for it I would have plenty of time after the baby was born to get well again.

No, I was not being rational. And yet it was in a state of mind much like this that I had been expected to make a decision that required the ability to assimilate complicated information, weigh the pros and cons, and evaluate risk, a decision that could mean the difference between whether my child lived or died.

That experience taught me a valuable lesson. It can be a great responsibility to be faced with ambiguity and decide for one option and then own the outcome. To push that responsibility onto a vulnerable patient who isn’t ready for it or can’t handle it at the time is unfair and can cause undue distress for the patient.

Part of being a clinician is facing the responsibility to make the right decision. I’m not talking here about the right decision in the clinical sense (though, of course, that too), but a decision that is right for that individual patient in that circumstance. To do that, we have to know their values, their expectations, their comfort with risk, their capabilities, and their personal philosophy regarding health-related quality of life. And we have to be aware of the values and beliefs we hold that may influence our clinical decision making so that we can be more objective and patient centered when called upon to make clinical choices for our patients.

I’m not sure why the physician back then was so reluctant to make a decision. He was young and I think inexperience was a factor. Maybe he didn’t want to accept the risk of making the wrong choice. So he pushed that risk onto me, a vulnerable frightened mother desperate to save her baby.

A few days later I was in an ambulance on my way to Albany Medical Center, where the physician who had delivered my first child talked through the options with me and then quickly made a decision about how to proceed (no cerclage, even if the amniotic sac receded again). It was the first time since admission that I’d felt safe and confident that, whatever the outcome, we were doing the right thing.