Tuesday, October 20, 2009

Tell It To Me Straight

When one of your child’s doctors needs to share news – significant news – with you, how do you want him/her to do that? What if it is news that most people would consider bad news? What if the news will cause a shift in the universe of your life?

I’ve been pondering these questions myself after reading two articles recently about how doctors should deliver a diagnosis of Down Syndrome. One article from the Journal of American Academy of Pediatrics talks about how best to deliver a postnatal Down Syndrome diagnosis. The other, from the American Journal of Medical Genetics, talks about the same thing, but from the view of a prenatal diagnosis.

Both of the articles depended heavily on surveys of parents, and the number one thing that the parents said? Don’t say, “I’m sorry” or “Unfortunately, I have some bad news to share.”

I thought back to the times when Ashley’s doctors had to deliver significant news to me. First, when she had her second brain tumor removed, I didn’t get “I’m sorry”, but I did get the sad looks and slight head shakes which spoke volumes to me. This was the same doctor who went on to say I ought to place my child in an institution.

Then there was the news that Ashley would have to get a G-tube. The doctor delivering that news was perhaps the most compassionate, loving, intelligent person I have ever met. He was matter-of-fact with the news – he gave me the reasons why and why not – he told me what to expect – he told me how both my life and Ashley’s would change.

And finally, there was the news two summers ago that Ashley’s neurologist had discovered more brain tumors on an MRI he had ordered (at my insistence). He also didn’t say “I’m sorry” or “I’ve got bad news”. He told me the facts – told me to contact the neurosurgeon the next day – and asked me to stay in very close touch with him. The words were right, but the delivery was sad. The sadness and worry in his words sent me over the edge.

If I had to choose, I would take the approach of the second doctor – the one who told me about the G-tube.

I know everyone is different, but I am a person who must be given the facts, and then allowed time to process those facts. I need information on support groups and other parents who may have been through the same thing. I need to reach out when I feel like reaching out, and I need to know where to do that reaching.

But I never want to be told, “I’m sorry.”

How about you?

Today I am thankful that the first doctor I met when I adopted Ashley was Harry Gewanter. He became her advocate and one of my best friends!


Trish said...

I'm trying to think. My circumstances are much different, but when 'bad' news came, I'm comparing.

First there was the day I was diagnosed with the pre-e. I almost told myself. The nurse had come in to take my vitals and looked...stoic, I suppose. She definitely had that "don't alarm the patient" look on her face. Which of course, alarmed me.

Then my doctor came in.. but she seemed very perky. I genuinely thought she'd just popped in to say hello. (I wasn't expected to see her that day.) She said "what's up?" and I told her my BP was high and my stomach hurt. She said "yeah, and you have a lot of protein in your urine."
That's when it clicked what was happening. So it was me that said "OH. So... pre-e, then?" and she said yes.
We then discussed what was happening- I needed to go straight to the hospital, but I still didn't understand how serious it was. When I was confused about why i was going to a different hospital, she said "you need the NICU there." and that's when I got that she was telling me I was having my child SOON.
And then I freaked out. NO NO NO NO NO. It's too soon.
Her response was kindness "it's not the best news. But let's get you to the hospital and run some tests and then we'll reevaluate."

And I thought that response was best. She never said "sorry" or "bad" simply that things weren't going as we'd hoped and we needed more care.

Oddly enough, the only time she said she was sorry to me was when she told me I'd need to have a Csection. (I'd planned a med-free birth.) And I actually laughed then because it seemed like such a silly thing to be sorry about.

Anyway, later, there would be infections and bleeding and scary things happening. They never said "I have bad news." it was "I need to tell you that we found blood in his stool today." or whatever it was.

I'm glad they didnt' start with "I have bad news" because those words punch you in the gut. Before they can even go on, your mind is off and racing.
Just give me the facts and let me go one.

And there was the opposite, too. Robbie was not eating well at all. But the GI doc kept insisting he was fine. I KNEW he wasn't fine. Then I didn't feel heard.

When they finally began to realize that I wasn't imagining things (his weight began to reflect what I'd already told them was happening) I was already pushing for help, so they never really had to deliver any news to me.

I guess in the end, I think I agree with you. Just the facts. If I respond with sadness, then you can offer your condolences. But most likely, I'll grieve in private. Right now, we have to deal with the situation at hand.

Janet said...

I like the information and then how to deal with the situation. Then from our ped, I always get a hug on the way out.

How bad does something have to be to be considered "bad news"?!

Corrie Howe said...

I'm like you. I need facts and then pointed to a place to go for more information.

I'm not necessarily a "support" person...at least initially. I need to have everything sorted out in my mind first.

Azaera said...

I hate the "I'm sorry" because to me it feels so much like pity, and I don't want that for myself or my son.

Marla said...

The worst for me was when I was given totally bogus news by a Dr. who misread tests and then rather than admitting to what he did when I had another hospital read the test results he ignored my calls and made excuses for what he had done at her next appointment. I was livid. The news he had given us was bad, involving m supposedly rapidly losing brain cells, etc.

Worse, was going to that meeting with my spouse at the time and getting little to no support from him as well.

I am not afraid of Dr.'s and see them as no more powerful than I can be in any given situation. They are hired help and I will never hesitate to fire one if need be. Bed side manners is so very important to me.