Review: "Because I Knew You" by Robert Macauley

Because I Knew You by Robert Macauley
Published June 2025 via Chehalem Press
★★★★

When Macauley found pediatric palliative care, it felt like a calling. Not his only calling, as it happens; he's also ordained in the Episcopal church, is a medical ethicist (which has a lot of practical overlap with palliative care, but it sounds like also a lot of tensions between the two fields), and has an MFA and a whole host of certifications. You might call him an overachiever. (I wonder whether he and Tori Murden McClure would get on?)

This is some of that story, told largely through the contexts of a handful of the pediatric patients Macauley worked with. Pediatric palliative care is a hard, hard thing; in adult palliative care, too, you know you will be working with people who have serious illnesses—and the expectation is that many or most of them will die sooner rather than later—but, as Macauley says again and again, kids aren't supposed to die. And yet for so many of his patients, there just wasn't another viable option, and the best-case scenario was for the patients and/or their families to find some beauty among the wreckage.

This is one of those bright spots. Because I Knew You distills years of clinical practice—and personal experiences—into a thoughtful, sometimes painful look at what goes into helping children (and their families) through things nobody should have to imagine. I can imagine it making a particularly difficult read for people with children, but it's worth the read anyway; palliative care (and medical ethics) is something we should all be at least conversant in, for the simple reason that chances are high that at some point you will find yourself making decisions about yourself or a loved one, and those decisions will hopefully include palliative care.

A quick note: Macauley touches on but does not, I think, explicitly define the difference between palliative care and hospice care. They so often go hand in hand that people tend to conflate the two, and it's worth mentioning that palliative care is not only for the terminally ill; the point is quality of life (and often pain control) in any severe illness, whether or not death is expected in the near future. Just noting this because my non-medical self has had to explain this difference to too many very smart people! If you or a loved one is going through major medical things, it can be incredibly valuable to inquire about palliative care options.

Anyway—overall an excellent look at something that doesn't get quite enough attention. Would absolutely read more along these lines.

Thanks to the author and publisher for providing a review copy through NetGalley.