Lessons in communication–from my Twitter friend

A few weeks ago I sent out a tweet about something that I’d been noticing a lot in clinic that makes me sad. It’s remarkable, I said, how often patients don’t tell their doctors when they don’t understand, or when their instructions are impossible.

A tweet came back: It’s remarkable how often doctors don’t ask if we understand or if their instructions are possible.

The tweeter was the mom of a kid with special health care needs (actually, more than one kid). As we tweeted back and forth about her experiences, it hit me how crucial good communication is when there is medically complex stuff going on. So I asked her if she would help me write a blog post about the things parents like her wished doctors knew—or would ask.

Sure, she said. She talked with some of her friends who also have kids with special health care needs, and this is what they came up with:

Twitter is changing the way patients and caregivers connect.

1. Doctors are the experts when it comes to medicine, but we are the experts when it comes to our kids. We are with them 24/7. We know how they react to different foods and medicines and experiences. We know what helps them—and what hurts them. We have so much we can tell you—if you ask us, or even just give us time to explain.

2. Life with a child with special health care needs is really hard—and really busy. You say you understand, but—no disrespect meant—you don’t. To really understand, you’d have to be living our lives. So check with us before you make a change in anything, so that we can tell you how this would impact us and we can decide together whether it makes sense.

3. Sometimes, because life and our children are complicated, we need time to make decisions. So whenever you can, let us know about upcoming decisions, and give us the information we will need to make them. Also, because life and our children are complicated, please be patient if we have questions after or between visits, and work with us to find a good way to get those questions answered.

4. Please understand, too, that getting to appointments, and waiting in waiting rooms (especially if there are sick kids around us), is hard too. Plus, we often schedule more than one appointment in a day if we see lots of specialists—it makes for a long day, but it’s ultimately easier for our child and our family. We understand that you are busy and can’t always see us on time, but we appreciate it if you try—and if you are patient with us if we get cranky.

5. It makes all the difference if you’ve read my child’s medical record before we get there, so we don’t have to waste valuable time going through everything. And if my child’s condition is rare, and you haven’t seen us, it helps if you’ve done some reading beforehand. When you’re prepared it makes for a much better visit.

6. A special note to medical students, residents, and fellows…we know that teaching is part of what the best hospitals do, and we certainly want to support the education of future doctors (since we’re likely going to see a lot of you for a long time). But please understand that when we see one of you it makes our visit longer and means that our child will be examined twice (by you and then the attending). When we’re in a rush, or not feeling well, or if our children are doctor-phobic, this is hard. So if we’re not scheduled with you, can you ask if we’re OK being seen by you as well, or if that day we just want to be seen by the attending? We appreciate that a lot.

You know what else we appreciate? When doctors acknowledge that we have something that we can teach them—about our children, about their condition, about caring for them, about what their (and our) lives are like.

I especially like this last part, because it gets to the essence of good communication: when it goes both ways, and when each side learns from the other. That’s the kind of communication that leads to good care.

So thank you, Twitter friend and her comrades, for helping me give better care. I will remember what you said. I will remember to ask—and to listen. And I will remember that there are always things that I don’t understand, things that only patients can teach me.

8 thoughts on “Lessons in communication–from my Twitter friend

  1. As a parent of a special needs child, I am printing this and putting it in his medical binder. That’s awesome.

  2. I was thinking the exact same thing, Cass! I would even go one step further and suggest that we should keep multiple copies of it and pass it out at every single doctor’s appointment!!! This is a wonderful list. Thank you for posting it!

  3. This is truly an awesome column…thank  you so much for writing it.  At one point the last thing my daughter wanted was to be poked by anyone other than her primary specialist….no med student, intern, resident.  While, as a medical professional trained at a major teaching hospital, I understand the necessity of sharing our story with those who are learning, her needs came above those of the learner.  I appreciated that understanding from those in the office at the time. 

  4. I loved this column.  I would really like to know how best to get parents to acknowledge when they don’t understand the info. I share withthem.  I find that even when I ask them gently and respectfully if they have understood, they rarey tell me when they don’t (even when I know they don’t)!.   I have always valued and am very sensitive to how I communicate with parents.  Any suggestions would be appreciated (re:: how to get parents to acknowledge that they don’t understand/ need further explanation.)

    1. Sometimes, we either THINK we understood OR we don’t KNOW we didn’t understand until we get home and put it into practice. 

      Remember waaaay back when you didn’t understand what a teacher was saying and you’d say(whine) “I don’t get it.” and the teacher would respond “What about it don’t you get?”…well if I knew THAT, I’d “get it”, now wouldn’t I?!??!?  Same concept.  Sometimes, it sounds perfectly clear with our child tugging on our arm, wanting to get out of the office and whining…and then we get home and realized what we thought we’d heard doesn’t make as much sense now that everyone’s quiet and we’ve had 2 minutes to think.

      What about handing them a card with your email address at the end of the visit and saying to them, “I know this is a lot of info and when you get home, it might not make sense or you may have concerns or questions that haven’t come to you yet.  Please email me and I’ll get back to you.”

      Honestly, sometimes I have questions and then I call and the nurses treat me like I’m not altogether there.  So I don’t bother. 

  5. Agree…with all of it…but I would add just one thing.  Instructions should be written down clearly.  My daughter is a teenager and I can’t tell you how many arguments we had after we left a doctors office because we interpreted instructions differently which only added stress to an already stressful situation.

  6. Wow!  I agree 100% as the mom of one child with multiple complex medical diagnose & one typical child.

    Also would like to add:

    1) Please remember that if you can get it on the floor, it is not always easy to have dme or medical supplies delivered at home – we are currently in the battle of trying to find a supplier for supplies that we need 3x a week & we have skilled nursing hours – for now, I am just paying out of pocket – most families cannot doe that & it results in either an admission or er trip

    2) Please trust our instincts – we may not have a word to describe what it happening, but we recognize the delta or “change” – pain or discomfort IS an emergency to us, but often not an emergency to clincians with whom we interact.

    3)Impact on the family must be considered – if there is a way to plan out possible outcomes, it helps with scheduling for our other typical children – we worry about the emotional health of the “healthy children” as they are often the last to be considered.  A healthy balance during childhood will support a healthy balance (not guilt or resentment) as they become adults and after we are gone.

    4)Please consider quality of life as we define it – for example, my son, who has been under general anesthesia 19 times in 11 years has a better experience with IM medazolan than mask premedication – please trust us.  We know what things work well & what things cause stress & likely non-compliance in the future.  Both of my children love Children’s Hospital, Boston, but it has taken a lot of advocacy to make that happen.

    5)As Andres Trevino has quoted in Andy & Sofia “Absence of proof is NOT proof of absence” – where there is smoke, there is fire & often the subtle clue outweighs the list of things ruled out.

    6)We love Children’s – please take our feedback as feedback & not criticism – please remember that our benchmark is pain or suffering, not morbidity or mortality.

    7) Thank you for all that you do!

    -Best! Mom to Bobby ” )

  7. Thank you once more for understanding the needs of the medically complex! There are times when the patient/parent are not fully heard and it makes future communication more challenging. We had one specialist who was an amazing doctor, but who discounted my knowledge because I researched my son’s multiple conditions. It took another doctor speaking to him about my understanding before he respected me at all. I always tried to speak with respect to this doctor because I did respect him, and still do. It was just frustrating to me and to my son that he did not show respect to me, or to my son. MY son did not understand the doctor, often he would ask us after the appointment what went on. There was a series of 3 appointments when my son felt threatened by the doctor simply because the doctor harshly said, “Well if you had the same results at such and such hospital ( one he knew took medication away and my son was afraid of) WOuld you like to go back there?” MY son refused for 3 appointments to stay in the room with the doctor, I wrote this on our notes, that he is afraid and does not trust him. It took that long for S to write the doctor a note and explain WHY. Communication is so vital. The doctor, who I loved and felt he could do so well, did not apologize, he blundered through words and said ” well , that was just a time when your parents and I were not agreeing” YOu are always welcome to have a second opinion and come back and I would put you back on medication” He did not acknowledge the complete and utter fear his words had on my 16 year old. I think he truly was taken aback at the time, but still, it is a shame when complete communication stops because words that slip out too easily cannot be understood from the patient’s view. I explained to the doctor that we believed that it was important for him to understand that a patient not fear being sent away, and that is what S thought was going to happen. He thought the doctor had the power to send him to a place he dreaded. A patient does need to completely understand, but the doctor must understand what the patient hears as well, if this makes sense. 

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