This is a post I began ages ago, when I wrote about my oldest son's nearly catastrophic birth. Near the end of that post I said I'd write more about learning to be a mama bear instead of a mama sheep, and I started this right afterward. But it had been languishing in my drafts folder ever since.
Then Jane L., whose recent comment about the doctor who delivered her first baby has made me laugh over and over, left another comment that inspired me to dust this post off. I hope that many of you find it unnecessary, that many of you already have such comfortable relationships with doctors that you say, "Duh, Jamie," and go skipping elsewhere in the blogosphere. But I suspect that some of you, like me, have occasional trouble feeling like you're on equal footing with your children's HCPs.
The truth is I am not usually very bear-like. Most of the time I am soft-spoken and conflict-averse. Nobody messes with my kids, though, and perceived attempts at same can induce a surprising metamorphosis.
The three-eyed-ness came about because I have looked at the issue of parents talking with HCPs through three different lenses. First I was a health care worker myself, and then I became a mother, and then I became a breastfeeding counselor helping frustrated mothers. In reverse order, here are some of the things I have seen through those lenses.
When I talk with mothers who are saying, "My doctor says I have to..." or "My doctor is making me..." I encourage them to consider a different perspective. (I would like to tell them to reject such thinking out of hand, but it would be a mite inconsistent for me to counter inappropriate bossiness by being inappropriately bossy.) I pay my HCPs for their opinions. I do not give them money so they can strip me of my autonomy, or leave me feeling incompetent as a mother. If a mother is feeling backed into a corner or pressured to do something that makes her uncomfortable, I suggest that she reframe the discussion with a phrase like this: "So your recommendation for my baby is that I consider..."
I do not say it with an adversarial or unpleasant tone. It is simply intended as a reminder -- to both of us -- that there's more than one way to skin a cat. May I deconstruct?
So your [not God's, not even the entire medical community's]
recommendation [not ukase]
for my [let's remember who has to consent here before we proceed]
baby [small vulnerable person for whom I will walk through fire]
is that I consider [because I am a competent person and you can be certain that I will weigh my options in this situation]...
Part of my job as a breastfeeding counselor is providing mothers with references they can take to HCPs. Many doctors are pleased to learn about Tom Hale and his work on medication use in lactation; they welcome an informed alternative to the PDR (guiding principle: "If we tell you not to take it when you're nursing, you can't sue us after the fact"). Any doctor worth his salt knows that things change in medicine and few (if any) of them have time to keep up with all the journals they might like to. A mother can say, "Hey, I found this article from the British Medical Journal that suggests an alternative." It doesn't have to be a big hairy "you-are-out-of-date" confrontation because a low-key exchange will do the trick in many cases.
When stressed mothers call me about difficult doctors, I encourage them to remember this: you are the expert on your child. Other people can be experts on teeth or ears or lungs or whatever, but they can't see the whole child as clearly as you can . Once I was told by a dentist that my 2yo son needed to wean before we came back. I wish I had said what I was thinking: "He is more than teeth. I'll have to see if he's ready for that. What else can we do about the decay in the interim?" Instead I nodded and seethed and never returned. (The end of that story, since there are many many similar stories out there, is that I subsequently found the world's kindest dentist and at age 4 my son had two fillings, painless for all concerned. He weaned not long before his fifth birthday and has perfectly normal teeth today.)
As a new mother dealing with HCPs, my biggest problem was fear of conflict. It was hard for me to see a middle ground between meek compliance and teeth-baring hostility. Of course there is an enormous middle ground, and I have grown more comfortable inhabiting it. I was surprised to learn that I could say, very pleasantly, "What's the rationale for that?" or "What are our other options?" or "You know, I don't feel comfortable with that recommendation," and send a conversation in a much less stressful direction. (Maybe you all grew up in homes where healthy conflict was the norm, but I emphatically did not.)
I also had to learn not to be afraid of other people's opinions. While I was working in the hospital where my oldest son was born, I went to NICU rounds and heard the irritated gossip about quirky and demanding parents. As the mother of a NICU baby I did not want to seem quirky or demanding because I did not want to provide amusing stories at NICU rounds. Afterward I was so angry with myself when I thought about the times I had quietly given in. Never again, I vowed, would I let anxiety about what someone else might think or say keep me from doing what was right for my child. I can't say I have always stuck to my resolution (and I hate those muttered "that kid needs a good spanking" comments as much as anyone does), but I do my best.
One other thing I wish I had known earlier: if you can't get what you need from your HCP, go elsewhere. When my first son was born, my husband was a graduate student and money was very tight. I took Alex to public health for well-baby exams and immunizations, but the public health nurse practitioner and I had a -- what's the opposite of a harmonious relationship? Can people have cacophonous relationships? Because the bad vibes between us were abundant, and amplitudinous too. (Dictionary.com says amplitudinous is not a word but I say puh. It ought to be a word. If you are part of the OED staff and you are looking for a citation for amplitudinous because how else can one describe the intensity of some kinds of dissonance, go right ahead and cite me. You heard it here from yours humbly.) I never left there without feeling like I was a bad mother overlooking serious health problems in my child.
Once in particular, my son had had been fussy and had a cold. When we went in for his well-baby check, he was much less drippy and much more happy but he had some fluid behind his eardrum. The NP said he needed a ten-day course of amoxicillin; I asked what would happen if we waited a day or two to see if he continued to improve since he had no fever and seemed to be so much better. "Oh, you don't want to do that," she said imperiously. "He could get meningitis." Yeah, and we could get hit by a bus on the way home, too. From that encounter comes one of my firmest convictions about health-related decision-making: I don't do scare tactics. If you have incidence data, if you have solid information on risks and benefits, then let's talk. If you can only offer me arm-twisting and improbable bogeymen, I'll take my children elsewhere.
After too many public health well-baby visits that left me feeling like my child was an agglomeration of inadequacies waiting to be identified, I opted to shell out the money to see our pediatrician instead. This was a big deal, given our financial straits at the time and my own frugal tendencies, but I quickly decided it was money well spent. That pediatrician told me something I will always remember: he said, "In medicine there's almost always more than one way to do things. Anyone who tells you otherwise probably just doesn't want to take the trouble to learn something new."
Do not think that I am in a hurry to bash HCPs here, because I have also been the one in the white coat. I have sat across the table from angry, frustrated patients; I have had that sinking feeling when the receptionist whispers, about the family I am scheduled to see in ten minutes, "She's not a very nice mom." One of the reasons it is important to me to keep my interactions with HCPs pleasant is that I know just how it can feel from the other side.
When I started my last job I walked right into a nasty situation: nursing staff complained that a patient's daughters were adamantly rejecting my predecessor's recommendations. "They just don't care if he dies," said one angry nurse. "They're very unhappy," said the social worker. "They're not the only ones," I thought to myself. But I took a deep breath as the social worker called them to introduce me, and I asked them to tell me more about what was going on.
It turns out that a two-part regimen had been recommended, and they thought part B was adversely affecting their father's quality of life. They didn't object to part A in the slightest. "Oooohh," I said (that's me, ever articulate). "I don't see a need for B at all. I was very concerned about A, but I certainly see why you wouldn't want B." I kid you not: three minutes, problem solved. Keep A, scrap B; everyone's happy. Their father died quietly in his sleep a few weeks later of an unrelated condition. I hope his last days were peaceful.
What I want to remember from his situation (aside from Don't Borrow Trouble -- I was pretty stressed about that phone call beforehand) is the fruitlessness of hostility. The nursing staff saw it unequivocally: the daughters were heartlessly disregarding recommendations that could save their father's life. The daughters saw it unequivocally: the nurses were heartlessly covering their butts without noticing how unhappy their father had become. I am a little saddened to think about how often similar scenarios play out. No matter which foot the shoe is on, I want to be willing to listen.
I had thought these three points of view would be more separate, but they seem to have interwoven quite a bit. Maybe that's as it should be, since the outcome should be trinocular vision and not triple vision. The principles that guide me in the roles of Christian woman and mother and occasional allied health professional mesh nicely, I think: Do unto others. As you do it unto the least of these. First do no harm.
I am reading back over this with a critical eye and thinking, Honestly, Jamie, didn't you know this stuff before? But I didn't, and the learning was painful, and so I am going to go ahead and post it in hopes that it may prove useful to another mother somewhere. Reluctant werebears, unite!
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