We went to talk to women who are living in the homeless shelter or transitional housing today. It was pretty interesting -- a lot of really articulate, dignified women. I had a lot of respect for some of them, especially two of the older women, one of whom had double digits of sobriety under her belt. I've learned from taking care of grandparents who have drug addictions just how hard getting sober and staying that way for so long can be.
One of the things that came up at the very end is the distrust that people develop in doctors because they're told that a loved one will die or has a very grim prognosis and then does well instead. I kind of automatically stepped into my script for patients with terminal prognoses. It's a script I built under the tutelage of an excellent palliative care doctor (seriously, the institution that housed my medical school is famous for many things, but it is not as famous as it deserves to be for the quality of its medical ethics and palliative medicine departments, both of which I was fortunate to spend some time with as a medical student.)
The script, supported by recent evidence in the pall med literature starts by emphasizing that it's important to have many different types of hope. I explain that based on the evidence in front of us, we think that (specific outcome) is the most likely and it's important to know that so that we can make plans based on the possibility of that outcome. It then acknowledges that parents hope that I'm making an error or hope for a miracle and that those hopes are reasonable and that I want parents to have those hopes. In a slightly antagonistic environment, like the one that developed today, I try to diffuse the tension by saying "my hope for your child is that 10 years from now you'll be telling everyone what a stupid doctor I was and how your child (survived, had a good cognitive outcome, etc.) despite what I said. I sincerely want nothing more for you."
And then I try to transition to saying "but, if (negative outcome) happens, I want you to have hopes for that, too, so that's why it's important to focus on (negative outcome) for a while." This conversation takes different turns depending on the negative outcome, but I try to guide people to realizing that they can both hope for a miracle AND hope that if their child passes away that they have a pain-free death or that if their child has cerebral palsy that they will continue to be able to care for the child at home.
It's counter-intuitive to give people permission to hope for miracles. It was initially really uncomfortable, because often my medical knowledge tells me that a miracle won't happen. I've learned to make my peace with that cognitive dissonance. I feel like parents feel like I'm on their team when I let them want a miracle.