If you had the chance to lecture 300 doctors, what would you say?

Posted on Oct 28, 2012 | 11 comments

This month, I will address a conference of pediatricians in Hull, England. It will be the second time I’ve spoken at a conference, though the first time I was 23 and I delivered a paper on post-colonial literature. I can’t even remember the book I spoke on… so a very memorable speech then.

One of my friends is a doctor  – several actually, but this particular one is organizing the conference and she asked me to come speak about May. In other words: she took a big risk on a friend of hers who, she knows, has a big mouth.

I’ve spent several months thinking about what I want to say. The opportunity to address a room full of medical professionals is a rare gift. To speak to them outside of an appointment, with no pressure on them to address May’s medical needs. To tell them what I really think: about them, about May, about anything really. That’s big.

It’s delicate though. Too critical and they will get defensive, too kind and I’m stroking egos. Neither option sounds at all useful.

So, I thought before I close off writing my speech, I’d turn to you readers and ask, if you were in my position: What would you say to a room full of doctors?

____________________

Something worth celebrating!

One more thing: Major success!

May’s height and weight were measured this week. She is no longer off-the-charts small, literally below the zero percentile in height and weight compared to others her age. There are actually children out there shorter and lighter than her!

May’s weight: 11.5 kg / 25.3 lbs

May’s height: 90 cm / 35.4 inches

11 Comments

  1. Depending on your amount of time. I would tell a great story about May and then one in which the medical system failed you. And then close with how you think they could have done better and what is needed for children with disabilities. Also, in telling your story start with positive first and then negative and then with a positive note on how they can best do their jobs. Also, put in humor. Hope you will be up a copy of your talk.

  2. I would stoke their ego a good bit, then talk about a couple of things that are important to you (but may step on some of their toes) then stoke their ego some more. :-) As medical professionals, sometimes their patients are just part of their job… but maybe remind them that their “job” and how they go about their job affects the lives of so many people… maybe give an example of doctors who haven’t bothered to read May’s history, you having to explain (and re-explain) to folks stuff that they should have read, someone who may not have explained test results or a diagnosis in a kind and compassionate way, or any number of things that could have been explained or done differently.

  3. Hi Stacie,

    I live in Christchurch, New Zealand and I have been following your great blog for about a year and a half now. Your blog was found and introduced to me by a very dear friend of mine who lives in Australia. My wonderful friend Rachel went searching on the internet on my behalf after our 8 week old son Laszlo suffered extensive brain damage following cardiac surgery. The damage, (caused by venous thrombosis), was so severe and so extensive we were told with absolute certainty that Laszlo would never have any voluntary control of any limb, that he would likely have little head or trunk control and that it would be impossible to say whether he would ever be able to see, hear or communicate.

    We were beyond despairing as I know you will be able to imagine only too well. To this day, I believe the greatest disservice that was done to us and to Laszlo that day by the Neurologist was the systematic removal of all hope from our hearts. My husband asked specifically if she thought that Laszlo might, just might, end up with enough ability in even just one finger to allow him to control an electric wheelchair. We were told quite emphatically, ‘no’.

    We could imagine nothing other than a despairing life for our infant son and we were exceedingly concerned about his quality of life, or more accurately, the distinct lack thereof, that this prognosis was predicting. The only ‘reassurance’ we were offered was that he would likely be an appropriate candidate for palliative care in his first 2 – 3 years.

    In this very very bleak time when we could not sleep, could not eat, could do nothing other than cry, and grieve, and cling to each other despairingly, my caring friend Rachel, separated by thousands of miles, did the only thing she could, she used the internet and she searched for what we so very desperately needed … a little hope. She found your blog and I remember, through my tears and heartache listening to her telling me about you, and your husband and May for the first time.

    At this time Laszlo remained critically ill in PICU. He needed his parents at his bedside, to remain with him, to love him, to be with him and to have hope for him. I remember being so fearful, questioning how I could be a good mother to this profoundly disabled little boy, how I could love, love, love him as he needed me to. I was so scared .. literally hopeless, for him and for us. Then Rachel told me about May and how well she was doing, and how much you loved her, and how generally ‘well’ your family seemed. Over the course of the next several days text after supportive text came through from Rachel and I know her thoughts were being fueled by your blog. Having had all our hope for a different outcome for our little boy stripped away by the medical professionals, your May, and your blog and your life together gave me just a little bit of that precious commodity back. That hope was crucial to my mental health in those early days, in my ability to turn up, day after day to PICU when Laszlo was drugged, unresponsive and acutely ill. And, more profoundly, when resuscitation orders etc needed to be discussed, that hope was something that Laszlo’s very life depended upon.

    We are now 16 months down the track and Laszlo is a thriving happy little boy with a wonderful quality of life. The Drs can only scratch their heads and say “Laszlo is showing us he has a wonderful capacity for recovery”.

    So – hope. I would talk to the Drs about hope. And how the removal of all hope from a parent brings with it the potential for unimaginable horrors, for both the parents and the child.

    It is likely we will never meet, and we live on opposite sides of the world, but I will always be grateful to you for the sliver of light your joyous blog brought in to our very very dark world last year.

    With warmest regards to you and your family, Julia x.

    • That’s an incredible story. Congratulations on son, who sounds like quite a fighter. You must be very proud!

      Not all doctors realize how much their words impact parents. It is something that I have included in the speech. I use a story about a parent who was told by a doctor there was nothing anyone could do for her child, and she cancelled all her future therapy appointments. One of May’s therapists told me, as we had a similar experience with the same doctor. The therapist was phoning her and begging her to return and try.

  4. Remind them what happens in the life of a family after they walk out of a room. And of course, laud the ones that didn’t give up and made a difference so as to stroke their big Dr egos. It isn’t just parents of disabled kids that get brushed off by doctors. I spent 2 hours in the middle of the night last night in the ER with my 14 month old daughter to be sent home with “fussy baby” on the discharge papers. Today, her Ped saw her and caught that she has an ear infection and started her on antibiotics. I knew that she was crying in pain and not acting like herself and that doctor cost my daughter an extra 12 hours of anguish. Not at all the same as what they have put you and May through but remind them that in the big and small things, they change lives.

  5. Our son was eight days old and still in hospital in SCBU following a collapse shortly after birth. An ECG had been done earlier that week. We were sitting by his incubator on an open ward with nurses and parents around when our son’s senior paediatrician came along and announced that the ‘ECG results were back and show moderate to severe brain damage’. Bang – just like that – no taking us away to a private space, no are you sitting comfortably or would you like a cup of tea, no explainations, no discussion.
    We didn’t really know what brain damage meant, and although we knew that our son was fighting for his life up until this point we hadn’t realised that brain damage was on the cards should he survive. We didn’t understand anything about medicine in those early days.
    I had been staying in hospital to be close to my baby, the doctor suggested I go home that evening. And that was that – she didn’t hang around.
    Our boy has gone on to be diagnosed with severe cerebral palsy, and following independent investigations it appears that his collapse was due to medical negligence – but that’s another story.
    I know that we’re not alone in this experience and am pleased that you’re going to address doctors’ communication with parents in your speech.

    • We had an almost identical experience, Emma. Horrible. I hope I can convey how traumatic these moments are when I speak to them.

  6. what a great opportunity! when i told my husband you were doing it, his choice of what he would say included far too many expletives for me to repeat it but as you can imagine it wasn’t positive! We actually had a very good experience of doctors for the first few weeks of Henry’s life and it was only when we were transferred to a different hospital that every thing came crashing down. The good ones showed us compassion and didn’t speak to us like we were idiots and the bad ones gave us the impression that we may as well leave Henry in the hospital as there was really no point. One doctor in particular was shockingly awful and told me that because of the rare condition I had which led to Thomas dying and Henry being so unwell meant that he really didn’t have much hope because of my ‘bad genes’! That was an appointment to remember…

    I totally agree with Erin that there doesn’t seem to be much understanding that you are going to take this information home with you and the way they deliver it will be with you for life. I often lie awake at night and play things back in my head, most of the faces i see are doctors we have had to deal with and not so much the detail of the things they told us but how they told us. We had one amazing doctor who told us some terrible things about Henry’s condition but he sat with us calmly, gave us time to ask questions and came back again a few hours later to see if we had any more. I can honestly say i can’t remember any conversations we had with him word for word but i can remember all the ones I had with the horrible doctors.

    it would be great to read your presentation afterwards if it is in an easy format to share – give ‘em hell!

    • I’ll probably post the speech on here – maybe in parts though. A normal post here is about 500 words whereas my speech is already 2000+. There is certainly a lack of tact that I will be addressing. Though I will have to be tactful as well if I want them to not throw things at me :)

      • how did your speech go stacie?

        • It’s next week, Wendy. I’m pretty nervous. We will see how it goes… I’ll report in!

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