Life is the Death Sentence
The beautiful and the awful of hospice.
Hospice is a death sentence. After all, any doctor recommending hospice care will say there is likely six months or less __________.
A. To live
B. Until death
Isn’t choosing A’s to live a glass half-full answer? But don’t both really mean B? With few exceptions, no one leaves hospice care alive. Some joke about graduating from hospice, but how many of those jokesters return to hear the same words: you have six months or less . . .?
Some might describe hospice as choosing Door #1 or Door #1 or Door #1. In other words, a choice with no choice. Or perhaps, clinging to the oft-used justification for the mysteries of life, if a door closes, then a window will open? Except with hospice care, aren’t all the windows nailed shut?
Isn’t hospice care the worst thing possible when a physician suggests it?
Or do you think this . . .
Isn’t hospice care the best thing possible when a physician suggests it?
Since I don’t know you, I don’t know what your answer might be. But what I do know, for me, is that hospice is not a death sentence. It is the best choice.
Life—not hospice—is the death sentence, my fellow mortal. The soft gurgle or loud cry of the newborn becomes, a few moments or a century later, a last breath. If we outgrow the tumult of adolescence, survive the reckless I-am-immoral thoughts of the young adult, and gain the wisdom of a long life . . . still we die. No exceptions.
And yet, I believe that hospice has less to do with death, and more about revealing life.
I recall those I have touched in hospice care and those who have touched me . . .
There was AWFUL.
When a chaplain, I was assigned a patient with AIDS. This was the late 1990s and most in the United States had gone from calling AIDS the “gay plague” to understanding it was an equal opportunity destroyer. But my patient was a sad case. A life of street drugs. A life of bad decisions. In the end, barely able to care for himself, one of his sisters took him into her house. And while he might have a roof over his head, I will never forget the crappy room behind the garage where he was stuck. In his thirties, he looked seventy. He never muttered more than a “Yes” or a “No” or a grunt to any of my questions. He didn’t care to live. He didn’t care to die. I wish I could be saintly and say that my spiritual insights uplifted him on his life’s final journey. They didn’t. I was glad to leave that cramped room and go to the next patient. But I prayed for him, and meant it. All I got from him was a sigh and a goodbye. He died several days later, alone in that dismal room.
There was BEAUTIFUL.
My patient was seventy-something. I don’t recall her illness, but I was her chaplain for several months. Every few weeks, I would see her. She typically wore a nightgown and a robe, and would sit primly on her couch. I guessed, not long before my arrival, that she added a dash of make-up and lipstick. It’s what a lady of her generation would do when a young man visits! We chatted, laughed, prayed. We talked about her daughters. I soon met those daughters, who both came to stay with their Mom as her health declined. I will never forget the second-to-last visit. My patient was still able to sit on the couch—primly, of course—for our conversation. Her daughters, in their forties, joined us. They too were in nightgowns and robes, mimicking their mother’s wardrobe. Pajama party! They all flirted with me. Trusted me. Joked with me. They selflessly supported their mother, and together, we prayed for her life. She died a few weeks later, surrounded by the love, laughter, and tears of her family.
I wish hospice care was perfect for everyone. It’s not. Oh, sometimes the problems can be blamed on dysfunctional families who waste time arguing about stale grievances rather than responding to the fresh anguish of a loved one dying. Other families are in denial. Patients, maybe because of their illness or their personality, can be cruel, racist, angry, demanding, petty and so much more.
Sometimes, a hospice agency screws up. I won’t sugarcoat that reality. The staff member who first tells you about hospice care promises, well, everything. But instead of constant attention by nurses or medications immediately delivered 24/7, the promises leading you to choose that hospice become disappointments. I know of hospice employees dismissed from work for stealing, lying, and cheating. It happens. I know of families who have spent the longest and most frustrating weekend of their lives because pain medication was delayed or forgotten. Is that unusual? Yes! But if it happens even once . . .
In my years of experience with hospice, the mistakes and misfortunes were rare. I wish they were nonexistent—but they are not.
In my years of experience, I truly was blessed.
Once, at a fund raiser I attended for my hospice, a stranger suddenly blocked my path. He said he recognized my voice. He said his mother had died in our hospice’s care a couple of years before and wasn’t I the one that left the supportive follow-up messages on his phone?
He was one of thousands I called, often only leaving a message to let a griever know hospice continued to care for them. He never answered the phone, but listened to each of my messages. Now, long after the death, he shook my hand and thanked me for being a voice of hope.
We will all die.
At its best, hospice care—with failures and mistakes, with blessings and compassion—helps us live.
My book, A Companion for the Hospice Journey, is available at Amazon.