Thursday, June 21, 2007

Explaining the Risks.

I just finished reading about Midwife with a Knife's very busy day. It was fascinating. One of the things mentioned is the difficulty explaining risk to patients. I don't know whether the concepts are just hard for some people to understand, or if it's the stress factor that makes the difference.

Our neonatologists and NNPs have to explain risks and benefits to our patients both prenatally and after admission to the NICU. Time after time, I see them explain something in great detail, ask if there are any questions, answer them (if asked) and walk away. The parents then turn to me and say something like: "So the baby will be OK, right?" (far more rarely they predict a dire outcome)

This is when I insert my statistics speech, in which I basically explain that statistics apply to populations and that their baby is an individual. Chances are whatever they were just told that (good outcome or poor outcome) will apply to their baby, but there are no guarantees - and would they like to talk to the NNP or physician some more? The answer is usually no, not because they understand, but because they are overwhelmed. I always pass that information along so the parents can be counseled a little more when they might be better able to understand.

There is one situation that makes it clear just how hard probabilities are to teach. That is when the parent of an infant with an autosomal recessive genetic disorder for which there is a fairly clear 1 in 4 chance of transmission (Cystic Fibrosis, Phenylketonuria, Sickle Cell disease, etc) has a second second child with the same condition and says: "We knew there was a 1 in 4 chance, but we thought that since the first one had this, the next 3 would be fine."

9 comments:

Amanda said...

I don't envy you your job. Caring for these itty-bitty lives... wow.

Statistics are a hard call. I survived a class on statistics, so I understood that when I got pregnant with #2 that I wasn't automatically going to have a girl because my first child was a boy (50/50 gender probabilities, dontcha know). And, as the facts would have it, I had another boy.

Hand-me-downs rock :) As for girls? I got a cat.

And bless you for noting that parents are sometimes too tired or overwhelmed to really process whether or not they need a tad more education on their child's situation. You can say all you want as many ways as you are able, but if your audience is nearly comatose due to extreme stress, nothing's going to get through.

Kudos, lady.

(And I'll remember to put coffee in my coffee maker tomorrow morning, just because you reminded me!)

Sara said...

Interesting post. I'm the mom of a 25-weeker who did not survive. I'm currently pregnant and all to well aware of my situation re: statistics and probabilities. As I read the sites of medical professionals, I understand more and more the notes I saw in my medical records after I picked them up to take to my new OB and fetal-maternal specialist for this pregnancy. The hospital doctors consistently expressed that I understood our situation "exceptionally well" that they felt my decisions were "well educated in terms of risk" and other such things. I wondered why on earth they thought that - I just understood the information they gave me over the days I lay in the hospital trying to prevent delivery. I didn't do or say anything new or interesting about it. I remembered the risks of cerebral palsy and lung collapse and blindness and all the other problems associated with prematurity from our first to our second to our third conversations and wondered why doctors kept telling me the same information day after day. I guess now I know why. They were assuming I didn't get it.

I can think, of course, of all sorts of social reasons why patients don't understand risk, but I mostly wonder if it's out of our desperate need to have hope. Like my own hope right now that my baby and I'll end up on the good side of the statistical range this time.

Bryan said...

Risk is very difficult for parents to get their hands around and I struggle with it. It does help, when discussing endoscopy, that I can say that in 15,000 upper endoscopies I've never experienced a perforation. Most people understand that the odds are small.

Dean Moyer said...

Several great posts since I last visited. Child of the Heart, was especially moving. I wish more kids in foster care could have such happy endings.

This one was also good. I'm sure that for most new parents, even if they understand statistics, all they really want to know at that moment is if their baby will be OK.

Everything else is going to go in one ear and out the other. :)

I'm sure you've heard this before; there is a very gentle spirit about your writing. I don't know how else to describe it.

It makes me think you should be a nurse... maybe take care of babies or something. ;)

Katie said...

At our NICU, we (as parents of a 24 weeker) were encouraged not to pay much attention to statistics. We were also encouraged not to read too far ahead in the "NICU doorstop" (funny, I can't now recall its actual name) - if we did so, we were apparently at risk of scaring ourselves "unnecessarily." Read only what applies to your baby now, we were told.

This isn't to say we weren't well informed - I have nothing but good things to say about how well our nurses kept us informed about our son's progress or lack thereof. I actually appreciated the gentle reminders to not put too much stock into statistics - and now, after losing three babies "against the odds," I've come to hate statistics. Once burned, twice shy, I suppose.

Judy said...

katie,
Statistics apply to groups - and not well to individuals. With 30+ weekers, it can be very helpful to tell parents that 90+% of the babies will have a positive outcome. At 24 weeks, the statistics aren't so encouraging. I think parents need to know the reality, but once they've been told, they don't need to be reminded repeatedly. It's a balance between keeping parents informed and destroying whatever hope they may have.

Only once have I told a parent not to worry about potential problems - he had been with us for weeks and was within days of going home. They asked for a list of all the things that could possibly happen along the way. I told them the things that were most likely to happen and that the others were extremely unlikely to occur and that they'd only worry unnecessarily if I listed them. Then I worried that one of those lightning-bolt things might happen. Better me than them, though.

Judy said...

Sara,
It isn't possible for parents to survive in the NICU environment without hope. Sometimes what appears to be a lack of understanding is truly clinging to hope -- even if they've been told there is none.

Chris and Vic said...

Once parents have been told about the stats and the most likely outcomes, we can ask: "What is your understanding of your child's condition and prognosis?" at the next care conference. That way, medical staff will know for sure what understanding parents have about their baby's situation.

There is also the intellectual grasp vs the emotional grasp or acceptance-factor . . .

There is also the complicating factor of one of the parent's viewpoint vs the other parent's viewpoint.

Hope is a beautiful thing and a virtue in many religious frameworks, but it can also be a component of inability or unwillingness to accept bad news. Medical people and parents have to be honest with themselves about hope.

The other bad news which may be hard to accept is that there are fates worse than death. We try very hard to address babies' PAIN these days, but I don't think we always know if we have been successful. I sometimes look at a baby on a vent and wonder if s/he is full of panic/fear, even if we have given him/her strong pain meds or paralyzed him/her so that s/he won't fight the vent. Air hunger, too, can cause extreme anxiety/panic/fear, and I sometimes wonder whether or not we have kept babies safe from air hunger . . . Pain, panic, anxiety, air hunger may be fates worse than death, especially if they are prolonged.

I, myself, am a night-shift NICU RN, and if/when I don't get long blocks of sleep (for me, 6 hours), I get crazy and cranky and rabbity. Do the babies feel that same way when they don't get blocks of undisturbed sleep? For weeks or months on end?

My point is that the NICU infants suffer immensely. We try to keep them comfortable---we are not entirely sure if we have protected them or not. At times, I feel that their suffering may be a fate worse than death. At times, I question the wisdom of what we do; I question whether or not we achieve the compassion we set out to achieve.

Chris and Vic

Judy said...

Fates worse than death - I think that's a common subject of conversation for NICU nurses. I was thinking precisely that about one of my patients this past weekend. After spending the night trying to keep him as comfortable as possible, I was appalled when the day shift nurse came in and said she thought we'd have gotten rid of his pain meds by now. He still needs them - and perhaps more than we're giving. At least he still responds to a comforting touch.