(Dr. Louis M. Profeta is an emergency physician, writer, and speaker. He is the author of book, The Patient in Room Nine Says He’s God. Used with permission of the author, this article first appeared on LinkedIn.)
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In the old days, she would be propped up on a comfy pillow, in freshly cleaned sheets under the corner window where she would in days gone past watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.
These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away. She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s okay to just let her die, but she trusted us to be her voice, and we took that trust to heart.
You see, that’s how she used to die. We saw our elderly different then.
We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while Mom gently scolds her brother.
We could see her taking a ride for the first time in a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small, beaded purse.
We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.
We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child off to school.
We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says:
“It’s time to come home.”
This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons, and tubes that can add five years to a shell of a body. It was a body entrusted to us and should have been allowed to pass quietly, propped up in a corner room, under a window, with scents of homemade soup in case she wanted a sip.
You see, now we can breathe for her, eat for her, and even pee for her. Once you have those three things covered, she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned-in cage of bed rails and soft restraints meant to “keep her safe.”
She can be fed a steady diet of Ensure through a tube directly into her stomach, and she can be kept alive until her limbs contract, and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.
She can be kept alive until her bladder is chronically infected, until antibiotic-resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed, and ulcers open up exposing the underlying bone, which now becomes ripe for infection.
We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.
We stopped seeing her – not intentionally, perhaps, but we stopped.
This is not meant as a condemnation of the family of these patients or to question their love or motives. But it is meant to indict a system that now herds these families down dead-end roads and prods them into believing that this is the new norm – that somehow the old ways were wrong, and this is how we show our love.
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”
I’ve been practicing emergency medicine for close to a quarter of a century, and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies entrusted to us.
This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted, and a few generations have passed since the onset of the Industrial Revolution of medicine.
Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils, and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.
Nearly 50 percent of the elderly US population now dies in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists, and countless other healthcare providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins, and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save – or perhaps silently hope we don’t save.
When it’s finally over and the last heartbeat blips across the screen, and we survey the clutter of bloody gloves, wrappers, masks, and needles that now litter the room, you may catch a glimpse bowing our heads in shame, fearful perhaps that someday we may have to stand before God as he looks down upon us and says, “What in the hell were you thinking?”
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath, we will be grateful that our own doctors and families chose to do what they should – instead of what they could – and with that, we will close our eyes to familiar sounds in a familiar room, a fleeting smile, and a final soft squeeze of a familiar hand.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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Beside a loved one I recently went through all that you describe. It was horrific. It doesn’t have to be like this. Keep spreading the word!
This should always be the patient’s choice, not that of physicians or nurses. If the patient wants everything done for her or him, that’s what it should be.
Thank you for writing this deeply important article. We desperately need more voices reminding us of what we’ve lost — the dignity, familiarity, and peace that once surrounded the dying process. In our culture, and even within medicine itself, we’ve become so afraid of death that we often “try one more thing” to keep a dying person from dying. Too often, these interventions don’t extend life so much as they prolong suffering, stress, and cost for both the patient and their family.
If we could return to open, compassionate conversations about the reality of terminal illness — and embrace the kind of care that prioritizes comfort, dignity, and presence over procedures — we could spare so many people unnecessary pain and allow them the gentle, familiar passing they deserve.
Doing aggressive medical treatment that one knows is futile leads to a boatload of moral distress and burnout in the providers….is that worth anything?
When matters are beyond any reasonable hope of recovery or improvement, I refer to such end of life ‘care’ as “keeping the corpse warm.”
We all need to make it known if that’s what we DON’T want.
“How do we stop this madness? How do we get people to let their loved ones die?” Thank you for posing those questions. In my mind the answer is each of us has the opportunity to use our voice and our actions to move the needle away from doing more, and toward more compassionate care around dying. Beat the drum loudly for change. Speak loudly from a brave space.
Heart rending and on target. As an ICU nurse I experienced first-hand what the author is talking about. A constant nurse-to-nurse plea was “don’t let anyone do this to me.” And the primary cause for ICU nurse burn-out was futile care, prolonging dying rather than promoting living. And I will never forget the feel/sound of cracking the ribs of a frail, tiny woman with metastatic breast cancer with my first chest compression, who was full code.
After working in a hospital for 20 years and watching the heartbreak that you just described, I have dedicated the past 17 years of my life providing hospice care to patients. Currently as a Clinical Manager my primary focus is to educate and advocate hospice because so many people deserve to die with the dignity that they so deserve!! Too many are being tortured by medicine with no quality of life, alone, living in understaffed facilities …..no human touch, no comfort and no love! We can do so much better for our elderly!
How beautifully put. Many thanks to the medical practitioners who keep us healthy and patch us up in young life; but keep me away from their end of life efforts. Sometimes it’s time to go. Final Exit Network and Compassion and Choices give me hope.