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When End-of-Life Plans Are Just Hopes

Why her mom's living will turned out to be useless


Mom’s terminal cancer diagnosis took her by surprise. “I always thought I would just fall over dead while I was walking across the backyard,” she told me. “Not me,” I responded. “I’m planning to go out like Uncle Ernest: Go to bed healthy and wake up dead. I think it’s called cardiac arrest.”

We were sitting at Mom’s kitchen table, trying to pretend everything was OK. A few years earlier, Mom had flitted away “a little bit of cancer,” as she called it, with a lumpectomy carefully timed so she did not miss her volunteer gigs. But we knew that this time — two cancers and increasing shortness of breath — was going to be different.

We tried to focus on the peach cobbler in our bowls. In our minds, though, we were coming to grips with the fact that we had fooled ourselves.

Mom and I thought of ourselves as great planners. Our pantries always well-stocked; the menu always worked out weeks before the big family dinner; a hundred-dollar bill always tucked in the sock drawer, just in case.

Mom’s End-of-Life Plan

Mom’s end-of-life plan was to die quickly. It turns out that is not a plan; it’s a hope. And the difference proved terribly sad when it came to the living will she’d prepared (a living will is an advance directive spelling out your desires regarding medical treatment if you’re no longer able to express them).

Like every good planner, Mom had a Plan B if she didn’t get the sudden death she was counting on. She was such an enthusiast for having a living will that I teased her about handing out copies like they were campaign flyers. When she turned 65 or thereabouts, she presented a copy to each of us four kids, her siblings and her doctor, along with a warning that “if you keep me alive on machines, I’ll come back to haunt you.”

That made us laugh. Mom was as threatening as a worn-out quilt. And after Dad died, when they were both in their mid-50s, she devoted the next three decades to making other people’s lives easier. She was a cookie-baking grandma happy to babysit on five minutes notice; the lady who made hash brown casseroles for bereavement dinners at her church.

Mom’s Living Will

Looking back, I wonder where she got all those copies of her living will. In my mind’s eye, I see her — super-white tennis shoes and polyester slacks — standing next to the copy machine at the library, fishing dimes out of her coin purse, while a young library intern pushed the button. “I better get a couple more copies, if you don’t mind. My kids lose things like you wouldn’t believe,” she might have said.

We all knew the living will was Mom’s way of saying she didn’t want to die like my dad did, suffering horribly from lung cancer treatments known to be futile even before they started.

What we didn’t know is that she would suffer horribly because we didn’t adequately plan for her end-of-life care — and that the living will would prove useless.

Our Big Mistake

Mom was of the “whatever you think is best, doctor” generation, but none of her kids are wallflowers. Yet we were unprepared to advocate for Mom’s end-of-life preferences, so we politely acceded to her physician’s auto-pilot protocol of tests and specialists in unfamiliar medical centers and painful blood draws even though Mom was clear from the outset that there would be no chemotherapy and radiation.

Years earlier, my cousin had complained about the hospice nurse that cared for her dad, but I changed the subject, murmuring about how nice the funeral was. So I missed the opportunity to find out what had gone wrong, what was the name of the hospice and, most importantly, how we could avoid the same mistake if we needed hospice services in the future.

That turned out to be our big mistake.

We were caught off-guard on the day that Mom was too weak to get out of bed and I couldn’t turn her. Although we did have options (in-home help, inpatient hospice in the city 75 miles away or the local nursing home), during Mom’s months-long decline, we had not discussed them because we were hoping —there’s that word again — we wouldn’t need them.

The Hospice Trouble We Encountered

I woke up that morning, expecting another day of helping Mom from her lift chair to wheelchair to toilet to hospital bed. When we realized it was not to be, I panicked. I administered the first dose of morphine for the day and, as Mom dosed, started frantically trying to make a plan that should have been made weeks earlier.

The home care agency in her town, it turned out, only served patients not on hospice; they had a list of nurses who moonlighted, but nobody could be arranged on short notice.

The inpatient hospice had an opening, but that would mean Mom spending her last days in the city, too far for her five siblings to visit. Would she want that? In her frail and despairing condition, I couldn’t bring myself to ask.

So we headed to the nursing home, where Mom died 10 days later.

Before all this, I would have said that our one end-of-life plan was that Mom would not die in a nursing home that was just as miserable as we all feared it would be. But what I really meant was that was our hope. We didn’t have a plan.

Lola Butcher
By Lola Butcher
Lola Butcher covers policy and business issues for publications read by physicians and health care executives. Her awards include an Association of Health Care Journalists Reporting Fellowship on Health System Performance. She lives in Springfield, Mo., with her husband, Andy, and two cats. Her side project is an early childhood literacy initiative for kids who are at risk for school problems. She can be reached at [email protected].

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