Trying (and failing) to startle medical personnel with a plastic bug during our last hospital stay
Yesterday I participated in a presentation and Q & A for medical students at Harvard, in which I recounted the story of Clio’s diagnosis and treatment, starting with the first symptoms she had — intermittent fevers, leg pain, belly pain — and going right through to her current treatment, and thoughts about what the future may hold.
(Last year, Alastair and I participated in the same thing in the flesh; this year I did it via Google hangout from Gloucester, where I spent the week for a DIY writing residency with a couple of friends.)
A good friend of ours, who’s a doctor, is one of the faculty members who runs the thing, and Clio’s oncologist, Lewis Silverman, was also there. And I have to say: it’s kinda trippy to be in a situation where your doctor is there, but you’re the one with the floor; you’re the one giving the case study, and the one answering the med students’ questions.
And it’s a strange thing to be talking about the emotions surrounding your child’s treatment in front of her doctor. Because when Alastair and I talk with him (and other doctors) in a clinical setting, it’s not like we bare our hearts. It’s all about symptoms and side effects and medicines and plans.
And it’s not like I bared my heart yesterday. (If they want heart-baring, they can read my blog.) But I did talk quite frankly about what it’s like to find out your kid has cancer, and what those first 72 hours are like: Shock, terror, grief…..
Still, it was odd. It actually made me realize how much more emotionally open I am with the nurses we’ve dealt with throughout our treatment than I am with the doctors. It’s a very different sort of power dynamic, and a much more intimate sort of relationship, really. The nurses are your teammates in caregiving; they’re there for the daily stuff, the details—the vitals signs and the blood draws, the monitoring and the maintenance.
I don’t mean to diminish at all the immense medical knowledge nurses have, mind you. One of the most crucial roles they play is liaison to the doctors. They’re the ones who are often the first to recognize when medical intervention or medication are needed, and they’re the ones who go get approval to make it happen. But they’re also comforters and cheerleaders and empathizers in a way that’s priceless to patients and families.
And the best doctors — if you ask me — are the ones who empathize, too. So I’m really glad I had the opportunity to give those young would-be doctors a glimpse of what it’s like to be in our shoes. It’s so important for them to know as they go forward.
They asked some great questions, too. Along the lines of:
— What was it like going from a smaller hospital to a big one?
— Were there things about different doctors’ communication styles that you did or didn’t like?
— How did you process the facts about prognosis, and how did you feel about how different doctors you talked with handled that?
— Was there anything any doctors did that made you feel particularly comfortable or welcomed? (This was a hard one to answer because the lion’s share of that feeling came via nurses.)
— How did you talk with Clio about her illness, and did it change as you went along? And were there any doctors who said things in front of her that you wish they hadn’t?
I think I gave some helpful answers. Though I hope I didn’t traumatize or bewilder these earnest and impressionable young people with how flippant at times I was about the whole thing. I made a lot of jokes. And swore a lot. (Jane! The Potty-mouthed Cancer Mom! Live, on Google!)
My parting comment was this: When parents tell you they’re concerned about something, and it’s something that’s not a big deal, don’t start out by telling them it’s not a big deal. Start out by saying they can understand the concern. Because what’s motivating it is the fact that the parents are simply scared to death.
I’m not sure I could have grasped that myself before I had kids (and I assume the grand majority of med students don’t). It’s hard to imagine that kind of primal, all-encompassing fear before you’re a parent yourself. But I’m glad I told them anyway.
What would you tell a room full of future doctors if you had the opportunity?
I love that last part. My level of satisfaction from interacting with medical professionals is often strongly tied to whether or not I can tell they are parents and whether or not they recognize that I know my child in a way they never can. Frankly, I know things about my child that even he doesn’t know!
If I were in a room full of doctors, I would like to impress upon them the fact that each patient is individual and not all of them can fit nicely into a medical box. Regardless of what the research and the numbers say, an individual presenting with symptoms that don’t “fit the profile” should not be measured up against the typical patient. I so often hear that “most kids don’t have this reaction” – that statement means nothing to me and my child. I understand that my child is having a unique reaction – he is prone to unique reactions and that is why I am pointing it out! I need to know what the treatment is for MY CHILD, not the majority of children…
This is a timely post, btw. Totally dealing with communication issues from medical professionals this week!
What Ewokmama said. I would also like to impress on doctors they don’t KNOW everything. They think they do, but they don’t. There have been too many time to count where I told a doctor this is what it is or this is what is going on or this is what is happening only to be ignored or told I was wrong or them acting like I don’t know what I am talking about. But it is MY body or it is MY child and yes, I do know what I am talking about. I may not have a medical degree but I am an educated person who researches the hell out of something my family is going through and who remember anything any medical personnel will tell me.
So often times I did have the right answer and when they ignore me, it pissed me off severely. It makes us enemies instead of partners. I went through that with infertility and the miscarriages and the high risk pregnancy and having preemies and have a child with autism and a child with food allergies.
So many times I was right and the doctor was wrong. So maybe moms like me may be the exception and not the norm, but they still need to learn to recognize and respect someone like me when they are confronted with us. We know our stuff and don’t like being treated like we don’t.
The best part about that was the young medical intern was the ONLY doctor that believed and listened to me once when I was trying to tell them my due date because I knew the exact date I did my IUI and conceived and they were trying to argue with me. He must have recognized that trait in me and went back through all the 4 inches thick paperwork and confirmed I was right about my due date. He came in to tell me he did that. But surprise surprise even the doctor he went to about it still ignored it. Because how could a pregnant woman and a young intern know more than the esteemed medical professional? Oh wait, we did.
So that is my rant about the medical profession. I am betting you are like me in that you are smart and you want to become as knowledgeable as possible about what is going on with Clio. So hopefully they treat you accordingly.
When a “medical mom” says something just isn’t right, believe them and dig a little further and don’t blow them off. They know their child, and they know when something isn’t right, even when they can’t quite tell you what it is.
My mom, a professional artist, was told a few years back by a doctor that the problem she was having with her eyes was going to cause her to go completely blind soon, and that was that. He didn’t have anything to add and left her alone to process it all. She got a second opinion and turns out the new doctor said oh no, just some fluid. we can drain it today, will 2:30 work for you? And now she’s fine. But I still can’t believe anyone would deliver such devastating news in such a manner. Makes me furious for how frightened my mom was. So I would say no matter how routine your job becomes for you, a doctor must always stop and appreciate how vulnerable their patients feel. Always.
Tell them to remember that MOST of their patient are not of the medical profession. Instead of trying to impress your patient with the big medical talk, speak to them in simple terms. People are more likely to respond when they truly know what is happening. People go home and google it, then get all worried about what they read. If the doctor had just taken the time to explain it to them in simple terms, it would avoid a lot of anxiety on the patients part.
Can I offer a corollary?
If we do understand the medical terms, meet us where we’re at in that way, too. Best psych experience I ever had was both of us peering through the doctor’s pill guide, debating the merits of this drug and that. Second best was sitting there, tossing out ideas about dopamine and its inhibitors, having breakthroughs and being scientists together. 🙂
For that matter, the best therapy I had was with a young social worker in training, while I was studying the basics of her profession. We connected as peer-to-older peer as well as client-to-therapist.
Remember that you are treating the whole person which includes their mental well being as well as their physical health. The way that you communicate can be either reassuring or distressing. My very favorite doctor ever told me that she learned from her dad (also a physician) that you can rush as much as you need in between patients but once you walk into the room with the patient you must act as though you have all the time in the world. She is always calm and patient and I feel so well cared for. Also, if you are not good with kids please do not specialize in treating them in any capacity.
I was part of the same type of thing with Harvard Med students in which we had to role play them telling us we had cancer. All of us were currently in treatment or survivors. I was still in treatment. It was SO great to be able to give open, honest feedback and they truly appreciated the opportunity to be there.
I can’t think of a better person than you, jane, to give perspective. What I would tell a room full of doctors? Don’t tell a person they have cancer on a major holiday (mine wAs valentine’s day). The cancer can wait!!!! There’s never a good time, but there is a better time. Xo
My daughter doesn’t have cancer so I can’t speak from that perspective. However, she has had leg pain that has persisted, off and on, for over a year. When I took her to the doctor in the fall and testing was was done, one thing I really appreciated was that the doctor talked to her and not just to me (she is 14). What is causing her pain isn’t serious, an unfused pelvic bone-something I had never heard of. I really liked how he explained it to her, and assured her that it wasn’t serious. So, again, not speaking from having a child with cancer, but from the perspective of having a child in pain and not knowing what was causing the pain, I would like doctors to know that it is good to include the child in the discussion, of course, keeping in mind the child’s age.
I just reread what I wrote and I realized that it sounds like I didn’t take my child to the doctor for a year while she was in pain. Just wanted to clarify -I had taken her to the doctor several times. The doctor I am referring to in my previous post is the specialist.
What I tell any young practitioner/future helping professional:
Be open to learning from us. You’re not going to get sacked for listening to our needs. We are more likely to embrace you and want to keep working with you.
Along those lines, the treatments that work are the ones we’re willing to use. Don’t ask us to take drugs whose side effects are worse than what we’re experiencing. No, “it’s only three weeks” did not make me any happier about (what turned out to be unnecessary) doxycycline. That doxy was so harsh I couldn’t stand more than five days! You find alternatives if your patient says “I know this is not going to go well”, or you do everything in your power to make it well.
And you damn well read the test results correctly. ALL OF THEM. So I’m not taking that doxy and suffering while on your desk/in your incompetent staff’s files there is sitting proof it was never Lyme. Arse.
For similar reasons, I never went back to the rheumatologist who confirmed it was fibro: he wanted me on a standard fibro drug that had major implications for my brain chemistry. There’s the third lesson — we are whole people. Your focus on one condition does not negate your responsibility to consider how your proposed treatment impacts the rest of my life. You don’t give a confirmed madwoman a GABA drug until you’ve tried everything else. You don’t give a girl with panic disorder a stimulant, even if she is exhausted all the time.
Medicine is a lifelong study of people and their foibles as well as disease processes. Lose the concept of patient as person and you lose a lot of what makes you exceptional as a practitioner.
This is interesting, so I thought I’d mention for what it’s worth, that overall, I’ve experienced a lot more empathy and feeling of emotional support from our doctors than from the nurses caring for our daughter (ALL). (Overall. I’ve certainly had some favorite ‘attuned’ nurses come and go. They kind who are able to quietly do their work well, but also tolerate and even give a sense of validation to my thoughts and questions.) I wonder if this because we are in a teaching hospital where we get a lot of younger nurses. I also wonder that a couple of our oncologists are just wholistically fabulous.
I know what you mean by not baring everything to the medical community, though. Once I shared our CaringBridge site to some of the nurses and then wondered if they read it, shared it, etc. For me, there is an “us” and “them” feel that makes it hard to share too openly; and a feeling that they have so many people and emotions to handle that I don’t want mine getting in the way (i.e. clouding their judgement) when it come to treating my child. For example, today the nurse accessing her port actually gave her a choice between laying down and sitting up (after Patient asked for it), sounding surprised that she could be accessed sitting up (which should’ve have been since for the first three months, this was how it was done until one day, one nurse missed and ‘group think’ took over and ‘they’ suddenly decided that she must be wrapped in a blanket and lying down. Ridiculous. But, my response, “Do whatever works the best for YOU.” Not what’s necessarily emotionally best for my daughter (least of all what feels best to me)…because I don’t want to pick up the pieces of you fucking it up. (i.e. No more misses!)
In a similar vein, I’ve had an overwhelming feeling that this is their world, not mine (although that feeling is finally sedating a bit as treatment gets easier). I get frustrated and feel powerless when the nurses try to woo over my daughter, almost butting in, when she is feeling crappy and just. wants. her. mama. Then again, I get tired and it’s nice that they try, nice that they do what they can to make the situation as tolerable as possible. And they do work really, really hard. So, I have a lot of gratitude too for the nurses. I just wouldn’t always call it empathy. And maybe that’s better in many regards. They certainly need some separation to do their job. But, on harder days, an empathetic soul makes all the difference.
Hopefully, that isn’t too raw! Thanks for including your ALL journey in your blog. A mutual friend shared it with me and I’m glad that she did.