The Death Doula Diaries

Part One: When hospice failed us, we turned to alternative care and my dying mother is more at peace than ever

My mom’s been living with early-onset Alzheimer’s since she was about 58 but wasn’t diagnosed until age 61.

Since then, we’ve gone through all the stages and progressions and plateaus, the aggressions, mood changes and sundowning. We’ve experienced all the ways the health care industrial complex cheats, abandons and ignores.

We’ve navigated Medicare, Medicaid, Social Security Disability Insurance, Social Security, hospices, and more social workers and health care providers than I can count, and suddenly (and since forever), I’m here helping Mom in her late-stage disease progression.

We’ve bent many walls to get to the other side, most of the time depending on social programs to support the estimated $7,000-$10,000 a month it costs to provide basic care for someone in late-stage dementia.

But when my mother was live discharged from hospice care, it felt like the wall in front of me grew a little taller, a little extra insurmountable. Completely unbendable.

Because most hospices rely on Medicare payouts to operate, they must conform with strict and antiquated rulings that can sometimes mean kicking patients off the care they need simply because they haven’t deteriorated fast enough.

In my mom’s case, Medicare and hospice determined her no longer terminally ill because she hadn’t progressed in three months.

Who qualifies for hospice care has more to do with dollar signs than signs of dying

A 2017 NPR Morning Edition segment reported that “hospices with the highest rate of so-called live discharges also have the highest profits,” with about one in five patients being live discharged overall.

It’s not really any one hospice’s fault. It’s the failure of our government health care systems to keep up with the growing need of an aging population.