Spoiler Alert: Do not read unless you want to be sad.
Back in anatomy, I thought the worst day of medical school was rectum dissection day. It was gross. It was smelly. It made me start dry heaving. I was way wrong. That was just gross, and in medical school, gross is the new normal.
I’m hoping sad doesn’t become the new normal too.
Yesterday, I met with three parents who had all recently lost small children, ages ~1.5 to 7. Two had cancer and died over the course of a year. One suffered shaken-baby syndrome at a babysitter’s and died after a month in the Pediatric ICU.
I’ve been taking an end of life care elective, and yesterday was the last class. Over the past few weeks, we’ve talked to various palliative care docs, a (Buddhist) chaplain, and an oncologist who lost 250 patients in one year. We’ve talked about how doctors cope and how to best treat our patients. Doctors get hit with a double-whammy when a patient dies because, of course, we grieve, but then, we feel guilt–both because we feel like we should be dispassionate and because we second-guess ourselves.
Anyways, here is what some of what the parents told the 10 of us in our elective:
- Do not say “At least” to parents who have lost a child. Statements like “At least you’re young and can have more kids,” or “At least you have other children,” do not go over well.
- It’s really difficult to sign a DNR for your child.
- In your efforts to help, do not say, “I don’t think I could go through what you went through.” You go through it because you have to. What other option do you have, to abandon your children and let them die alone?
- When you ask someone how they are doing, mean it. Don’t just ask it for the sake of politeness. Otherwise, don’t ask.
- The families really appreciate candor. Also, don’t lie to the kids and tell them something has no medicine in it when it really does. The kids will know. And they will remember.
- After a child dies, the parents become worried about forgetting their child. I noticed that at least 2 of them wore bracelets in memory.
- The child being sick was nothing compared to the absence of him/her, and any of the parents would have switched places with their kid in a heartbeat.
- One of the parents said that as his daughter (~3.5) was losing more and more mobility, she was becoming increasingly frustrated. To explain what was happening to her, he told her the story of The Very Hungry Caterpillar. He said that she was folding up into her cocoon, she would fall asleep, and when she woke up, she would be a butterfly. I hope that’s true, but I think I’m going to have a harder time reading that book to my son.
- One of the parents–the one whose child was abused at the babysitter’s–said her recollections of that month are not very clear. As we’ve been studying defense mechanisms recently, I think that’s a completely understandable response to such a trauma.
- People are very judgmental, and we are our own worst critics. So, when parents take time for themselves–which they are encouraged to do for their own sanity by the hospital staff–friends, relatives, family–can all very judging about that.
- The parental guilt–about should I have done this, should I have gotten care here, should I have done that–is overwhelming.
- They said the pain never goes away and that it never really lessens. What they said was that as time passes, you learn better and better ways to cope.
At the end, one of the parents thanked us for being doctors, so that was kind of nice, even though, we’re not there yet.
But we’re on our way.
Link to one of the family’s foundations here.