Accepting bad care.

The downside of empowering parents to know the difference between evidence-based care and myth-based care is that when they don't have the option of good care at they know it.

I see so many parents in the midst of crises and forced to make decisions because of circumstances out of their control: insurance, finances, disagreement on direction with spouses, geography, national health systems, co-morbidities that require care outside of ED specialty, parental health crises, multiple family crises, waitlists, age limits... there are more reasons NOT to be able to access the best care out there than ways to access it!

But sometimes we do have to accept care that we know is misguided, futile, and just plain wrong. There is a time to be angry about that, to point it out, and stand up to it... but unfortunately, not in the moment. We have to keep focused on the long-term goal: our loved one's life. There are times when being right isn't an asset, and fighting the urge to say so - to howl at the unfairness - is some of the bravest parenting we can do.

Coming off as the meddling, over-involved, know-it-all, angry, over-reaching, pain in the ass parent of the patient is so easy: All it takes is the faint whiff of our disapproval and a few pointed questions. Being THAT parent makes things worse for our kids in too many situations.

Have I done this? Yes. I've also accepted care that even at the time I knew wasn't good. I've agreed to things I knew I had to because I lacked the authority to stay no. I've worked with people that were great on 50% even though they had it wrong on the other 50. I've sat through advice that I knew we couldn't undermine.  It sucks.

The time to protest that, to try to fix the system, is later. Holding out for that is worth it, and feels great.


  1. Hi Laura, Sounds so familiar. Our family trusted the professionals because they used their credentials and a tone of "how could you possibly know how to fix this". Well I am starting to contact those professionals and coincidentally one that I provided some updated family/food information to - accepted me on LinkedIN as a "partner". I was in shock. Maybe the system can be changed. One patient at a time, one doctor at a time.

    Keep up your good work. Your words cause thought and inspiration.


  2. I have also bitten my tongue when intervention would make the situation worse or push me out of the loop however there are also times when you have to stand up to practices that are just too damaging to be allowed to continue. An important part of activism is knowing when these times are and responding calmly with scientific backup. Tough.

  3. Good on you, Karen, for going back to them. I still haven't done that!

  4. You are so right, Red - I still struggle with that!!

  5. I hear your words to me in here Laura.


  6. I'm sorry to say that I am not thinking of a particular situation: it's mine and that of SO MANY families I know.

  7. so, so, so many families - mine included and NO I've not always managed to keep my mouth shut and I HAVE made the situation worse for my loved one. Red, you are right, we need to be able to adapt the Serenity Prayer just for activists. I do have to say though that knowing that, while life isn't perfect, to some extent we are now in that time period which could be described as "later" and having, whether it lasts or not, the luxury of time to construct evidence based arguments and find references is simply wonderful. NOW is the time for ME to tilt at a few windmills although there are some which are still too red hot for me to go near.

  8. by the way don't google for a picture of "red-hot windmills" not a good idea!

  9. Your post could not have come at a better time, Laura. Thank you.

  10. Marcella - us old hands learn the Serenity Prayer well and fully, don't we? And windmill tilting as well!

    Jen, I am so sorry to hear that. Knowing we're not alone is cold comfort, I'm afraid.

  11. Laura, I know we have have spoke of this before. This too, is a process by which , us the parents and caregivers learn to recognize situations that trigger our fear response, especially in crisis because we are just so vulnerable to unfiltered reaction response. I HAVE found myself powerless in a crisis situation to accept anything but the most immediate and safety need of the moment. But in our effort to begin the best treatment process for our very sick children, we do start very quickly looking for the next best option. I find that it's in these crisis situations for me, anyway, I have to be a better listener, not react or respond immediatey because at that point it's probably a fear response and could likely be ineffective and even work against the primary goal. Stepping back, calming down and lookingbat the big picture helps me. My goal is to keep a strong united front to treat Ed, if I disagree with care or feel the need to ask questions, I am trying to formulate a non threatening conversation that is open to listening to me and if I can learn to be a better listener with and acknowledge them than we have the best chance for right now to achieve our goals. It's likely to be less than I would want but in these most stars we have to do what's best for right now. I am breathing

  12. So much (hard-earned) wisdom there, Lisa.

    Sending hugs to all those facing imperfect solutions with calm resolve.

  13. I have such a hard time giving my trust to those in medicine today. I think I may die hiding in the woods someday, at 99 yrs.old. I don't want to "fight" for our right for honest, healing medicine, I actually expect it. We know it's out there but far and few between. As parents we have to find our voice and advocate for our kids no matter the "crazy" label they try to place on us, no matter how scared we are. I wouldn't be surprised to learn that many who entered medicine found their hands tied by the politics involved. It's what made me NOT want to be a nurse....the treatments to me were mostly lies, in my opinion. Yes, in many diseases there have been great strides made but in such a disease as an eating disorder, that involves the mind, we are still dealing with different approaches. We want the one that strives for full recovery and settles for nothing less. Some may believe it's a choice because, of course, an individual has rights to choose. Sorry but cancers are not people and an eating disorder is a disease. Our howl must be from the heart, Laura, and then it will be heard. You have moved some mountains, Laura. Know that. Parents, trust your instincts.

    1. Dear Mary:
      GREAT COMMENT: Nontrusting is what the medical professional's throw back at me when I found my voice to advocate for my child's eating disorder.Along with the crazy label.(I was named the grizzly bear mother).The passing off of accountablity made Treatment and Recovery very difficult. My howl's ARE from the heart. I am learning to trust my instinct where my daughter's health is concerned.
      Mother Bear caring for her cub

  14. Oh, Mary: remember when what we have been saying for a decade was unheard of and so solitary? The good news is we survived all this to see a far broader view out there. We both know we're not "there yet" but the theme of advocating for our kids has served us well so far. So glad to know you!


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