The phone rang at one in the morning.
I sleep deeply and wake fast. Moments after the call, I was dressed. In less than fifteen minutes, I arrived at their home and stood beside their bed.
The husband wept. I’d never seen him cry before.
She lay beneath the sheets. In repose, eyes closed, and you could (almost) pretend she was blissfully slumbering through the night. But she was dead.
Later I’d recall Charles Dickens’ familiar opening in his Tale of Two Cities: “It was the best of times, it was the worst of times . . .” Aren’t those extremes how you react to the after-midnight calls? Why else would the phone ring in the wee small hours, except to convey the best news about a child’s birth or a beloved’s safe arrival from a far-flung war zone?
Or to share the worst news.
The odds of a jangling phone conveying the “worst” message was high. Back then, I was the on-call chaplain for a hospice. Most nights remained calm, but all could be disrupted.
And death always seems a disruption.
It would take another half-hour for the nurse to arrive and confirm what a loving, weeping, stunned husband and I had known since before I entered their bedroom. She had died in what many would say was the best way. In her sleep, in her bed, in her home. Had it been that long since they were able to take a walk? They’d even, a few days before, shared a meal at the kitchen table. Although it wasn’t much of a meal, maybe she’d nibbled applesauce and sipped water, and maybe he’d left an untouched sandwich on his plate. Still, they were together, around that old wooden table of scratches and memories.
Now, not together.
In my visits to this family after they entered hospice, we (their hospice team) tried to prepare them for death. Some don’t like to discuss death. They were okay with honest conversations. Some fixate on the hope of news touting a new miracle drug for the specific cancer a loved one has . . . and life will return to normal. They were realistic. Some have kids that bicker about care plans; a civil war erupts over moving Mom to a nursing facility or “forcing” both parents to live with the son in another state. Their adult kids were supportive and understanding.
You see, they’d the “best of times.”
He was devastated by her death.
He wept tears I’d never seen before. I’d visited. We’d prayed. We had awkward silences. He shared treasured family stories and his wife, probably even quiet when she hadn’t been ill, smiled and rolled her eyes at his exaggerations. They had a good nurse and social worker. A home health aide helped several times a week. We all did our job to prepare them.
They weren’t prepared.
He wasn’t prepared.
In that bedroom, in that dimly lit house, long before dawn, he was a wreck.
How can you not be?
+ + +
People dread hospice.
People despise the “H” word. Hospice, a word firmly rooted in a history of compassion and hope and safety and respite, has an awful reputation. It’s far worse that any of the late comedian George Carlin’s seven words you can’t say on television. (Since I endeavor to keep this web page user friendly for “everyone,” I’ll let you do your own search for those now outdated seven nasty words!) But isn’t hospice worse than any of Carlin’s seven?
Hospice is the literal dead end, the giving up, and the nothing else we can do. It’s not a Plan B when Plan A doesn’t succeed. It’s not even Plan C or D. It’s Plan H.
It’s the blank screen after the movie credits have finished.
There’s another “H” word that makes life so complicated: being human. Humans, for all of our twenty-first century bravado and progress, are also afraid. Of dying. In a recent New York Times essay, physician Danielle Ofri recalls a family considering her recommendation for hospice:
The family was hesitant—they were very private people and didn’t want anyone in their home. But I suspected that they were also put off by their associations with hospice. For most people, the word hospice means “game over.” But hospice should actually be thought of as “game on”—now it’s time to really start taking care of the patient. And contrary to the assumption that hospice equals death, data show that early referral to hospice actually improves life expectancy. [I added the italics.]
I don’t know how I’ll face my death. In my mid-sixties, I’m an hour or a day away from dying. Isn’t that true? For everyone? Nature and nurture, good or bad lifestyle choices, how much ice cream or fresh fruit I’ve eaten, and where I live, can all lead to a statistical projection of life expectancy. But right now is my only guarantee of still breathing on this glorious green and blue planet.
But who wants hospice “right now?” As the good doctor Ofri states, many think it’s “game over.”
No, please, please, please think of hospice as “game on.”
+ + +
We waited for the nurse in their bedroom. I stayed with him until she arrived. I was there when the funeral home came for the “remains” of his beloved wife of more than a half-century.
We in hospice did everything to prepare this couple for this time. But no one is ever ready. They were on the same journey, fearful and supportive, struggling and loving. But then one takes a final breath and the other can’t imagine how to keep breathing.
Hospice, and the research and statistics confirm this, will improve life expectancy when there is an “early referral.” Most people, when confronting a grave illness, are realistic enough to know they may not have years and years left. But I’ll bet most would say they only want to have a little more time with a parent or spouse or child. Hospice may be able to provide those extra days.
However, the old “H” word, being human, looms as an obstacle. Going from seeking a “cure” to embracing “care” is a tectonic shift. I won’t conclude these words with sugarcoated promises. Choosing hospice is hard. Death is disruptive. The hospice staff tries to prepare families, but that doesn’t mean the tears or fears will cease. I hope it does mean, as much as possible, that a patient and family won’t be alone in this journey.
The phone rang at one in the morning . . .
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
Image found here.by