The unmentionable odour of death
Offends the September night…
—W.H. Auden, “September 1, 1939”
Good morning, ProviderNation. Maybe it’s a seasonal thing—here in the decadent capital, the leaves are doing their lustrous wonders, the mercury sinks in the mouth of a dying day, and twilight comes earlier and earlier—or maybe it’s psychic convergence.
In any case, death is in the air.
It’s about time.
Shanda Fur Die Goyim
You’ll have seen our little effort to make sense of death, dying, and grief in the September issue. I remain proud of the work, but I have to admit that John Morley and the fine folks at JAMDA have wiped at least some of the smug off my face. No sooner had I let slip the September cover, feeling peacock proud of having dealt with a matter that so many providers had consigned to the shanda fur die goyim bin, when I see that Morley and Angela Sanford had stolen a march: Their essay in the August issue of JAMDA, “The God Card: Spirituality in the Nursing Home” is brilliant enough on its own, but it’s accompanied by an op-ed and an original study on palliative sedation in nursing homes.
And just as I’m recovering from my vertigo of watching Morley and company scoop me, the Institute of Medicine releases, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” Meanwhile, AHCA super-lobbyist Clif Porter (and all-around decent chap) gives us an interview for the October issue of Provider in which he tells us that providers ought to look to hospice as a model for building goodwill with the public and with lawmakers.
So it appears that providers are more willing to talk openly about death and dying and grief than I had given them credit for.
‘Good Death’ Aspiration
Still, no one will claim that this refreshingly morbid September closes the conversation. And however much the Big Public may hymn the virtues of “a good death,” the attitude still seems aspirational.
“I wish there were a way we could get out into our communities,” says Robin Hillier, owner and operator of Lake Rehabilitation and Nursing Center in Conneaut, Ohio. “Having these discussions about what we want for ourselves at the end of life is something that we need to have throughout our lives. We all talk about estate planning, and tax planning, but not enough people do enough about end-of-life care.”
Hillier has acquired a grim expertise on grief and mourning. Not only does her center care for and treat the elderly, but it also has a pediatric unit.
“One of the biggest rewards for my staff is working with those people, because they have an opportunity to develop lifelong relationships,” she says. “But one of the problems is when one of those residents dies, it’s much harder. You’re sad when someone who’s older died, but you can celebrate a long life, well lived: It’s just much harder when someone young dies.”
That’s why The Talk starts early and continues often at Lake Pointe, Hillier tells me.
“We take that seriously, we talk about it clearly, and we want to provide you with the support you need to deal with it,” Hillier says at every new staff orientation (and beyond).
Staff grief is only one mountain to climb, though. The biggest one is often families of the dying. (In fact, an earlier study in JAMDA found that nearly three-quarters of staff reported family members as a hindrance to offering quality end-of-life care.)
“We have to balance between a resident and families, often,” says Debbie Meade of Health Management, in Georgia. “The resident is tired. They’re tired of the fight. And there are times when they’re just ready to go. And they know it.”
For families, though, it’s often hard to “let go,” Meade says. The guilt, the sense of betrayal, the fear of loss all overwhelm families at what is literally the last minute. (But even the Supreme Court sometimes seems to struggle with teasing out the difference between letting someone die and actually killing them.)
“That’s where we miss the boat,” Meade says.
‘Your Mom Is Not Here Anymore’
Meade says that these are the moments where providers must find their voices.
“I had a resident—the flesh was literally rotting off her body. And the family had a feeding tube in her,” she recalls. “I sat down with the family and said, ‘I’m sorry, I can’t let you do this anymore. Do you understand that your mom is not here anymore?’”
The reasons so many providers balk at such blunt talk are easy to understand, Meade says. The fear of lawsuits, the fear of honesty—it’s all human, all too human. “They think they’ve given up on them, and they think they’re not doing what’s right,” she says.
But the consequences of human failure are absolutely inhumane, Meade says.
“We don’t sit down and have those honest conversations. And that’s when the resident suffers, when you watch the family not having enough love and courage to let them go to that better place,” she says.
‘Granny Wants To Go’
Like so many in her line of work, Meade has dearly won experience. She had to help her beloved grandmother die. A vivacious, vibrant woman, “Granny” had been up and about until one more stroke drew a curtain down on her. Meade instantly moved her grandmother into Health Management’s skilled nursing center.
“I was trying to feed her, and she closed her mouth and shook her head, No. I said, ‘You don’t want to eat?’ She shook her head. No. I called my Dad and said, ‘Granny wants to go.’
“I know I did what she wanted,” Meade says. “She just looked me in the eyes and shook her head. And I knew what that meant.”
It took seven days for Granny to die. But she did so peacefully, and on her own terms. Meade says she misses her grandmother every day, but regrets nothing. She hopes that she and other providers can find ways to pass on what they’ve learned.
“It’s something that we need to talk about more,” she says. “It’s something we need to share.”
Bill Myers is Provider’s senior editor. Email him at firstname.lastname@example.org. Follow him on Twitter, @ProviderMyers.