Removing the Barriers to Caring
When advanced life-support becomes comfort-focused care, where do we draw the line?
Welcome to the final chapter of Part II. A Magic Wand.
A version of this story first appeared in the New York Times in 20151. It only makes sense to make this chapter fully accessible. Feel free to share this and/or the original with all you love (or have loved, or will soon love).
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“There’s nothing more we can do.”
A physician often speaks these words just before transitioning a patient to hospice and palliative care. They are regrettably uttered only days if not hours before the person dies. These words leave no room for hope to emerge. They make a transition to comfort-focused care a much feared and often avoided final destination.
Yet here’s the reality: More can always be done. More importantly, patients know exactly the more that they want. The real question is: why don’t we ask?
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“I’m sorry? You’re telling me she wants to be re-intubated?” Ms. Weatherby’s attending physician exclaims. “I’m not clear how this is palliative care. She’s never leaving the hospital.”
When advanced life-support becomes comfort-focused care, where do we draw the line? Based on what I have learned from Ms. Weatherby I would argue that palliative care begins by removing the line.
Ms. Weatherby is a remarkable 57-year-old with a horrible set of diseases, all of which have conspired to make her lungs fail. This has resulted in her needing to be placed on a breathing machine, unable to speak, which is not to say she cannot communicate. Most people requiring a ventilator are unconscious because the sedation required for such life support measures to be tolerable is generally quite significant. Not so for Ms. Weatherby. As I peer into her ICU room, she is sitting up tall in her bed, tubes entering and exiting nearly every orifice of her body. But she is seemingly undisturbed by such paraphernalia. Rather, she has found ways to position her laptop, journals and colorful pens so that she can be in constant communication with her extensive circle of family and friends.
She is keenly aware that she is not going to make it out of the hospital alive. She is also equally aware that her family is not ready just yet to lose their fulcrum.
“I want my family to know I am at peace” she writes on one of her notepads in response to my magic wand question.
Ms. Weatherby’s clarity regarding her prognosis either makes her caregivers extremely uncomfortable or puts them at ease. Physicians mostly assume that life-support is such an uncomfortable level of medical intervention that no one in their right mind would ever choose such measures if they know they have no chance for recovery and certain death in the hospital is their only future. Ms. Weatherby challenges that, not that she thinks she will leave the hospital or even the ICU—she knows she won’t. Instead, she defies everyone’s assumptions that life is too unpleasant and painful in such a setting to be worth living at all. She radiates gratitude.
For several days, Ms. Weatherby has been complaining of increasing abdominal discomfort. She is receiving nutrition via a tube running from her nose into her stomach, so she has not been able to taste food in days.
“Oh, this looks tasty,” my sarcastic response to the irony of a strawberry-flavored canned nutrition drink next to her bed.
Indulging my jest, she writes in her journal, “Hey, that’s my lunch.”
She really wants to have that tube removed, but as long as she is on the ventilator, she cannot eat on her own, so this is the next best thing.
The following day when I stop in to see her, she grabs a pen and journal and writes, “I vomited head to toe last night.”
Reading this, I am mortified. This has to be one of the worst things to happen to someone alert on a ventilator as you have no ability to activate your own gag reflex with a tube stuck down your throat. Ms. Weatherby continues to write, undaunted, “My stomach feels much better.” She pats her stomach and keeps writing. “After they gave me a bed bath and changed my sheets and clothes, I got to brush my teeth!” Just then she looks like the Cheshire Cat showing off her pearly whites. It’s the first time anyone has thought to try to let her do it since she has been intubated. “It feels so good. I am looking forward to doing it again tonight!”
I laugh, “Yeah, but this time without the vomiting, okay?”
Astonishingly, Ms. Weatherby is taken off the ventilator only a couple of days later, placing her in a rare position to answer the question we ask so many people but can only guess their reply.
“If your lungs weaken again, would you want the tube put back down your throat and placed back on the breathing machine?”
“If that’s what it takes to keep me alive, so be it. I am not ready to pull the plug yet if I don’t have to.”
Knowing her as I do, I would have been shocked if she had given any other response.
When I return to Ms. Weatherby’s bedside the following morning, she is re-intubated, alert and tapping away on her laptop. She immediately reaches for a notebook and a magenta pen and as if reading my mind writes, “I still want to live.”
I say, “I know you do.”
I ask if I can do anything for her.
She shrugs, then pauses; placing her palms together she bows her head.
“Pray for you?” I whisper.
She nods.
“I can do that.”
She straightens her gown, and I notice her bare feet bumping up against the edge of the ICU bed, her flimsy blanket not able to reach so low and maintain modesty above.
“And how about some colorful cozy socks to match your glow?”
She nods emphatically with joy in her eyes. Simple pleasures and abundant gratitude for as long as it lasts ... that is Ms. Weatherby’s way.
She continues to work relentlessly to bring her fractured family back together. Specifically, Ms. Weatherby wants to ensure that her own death will unite and heal all those she so deeply loves rather than further splinter them.
Speaking with Ms. Weatherby’s attending physician two days later, I learn that though others believe he has been angered by what has transpired, he is not: “Perhaps it is I who am struggling with my own discomfort and not the patient,” he humbly offers.
Perhaps what makes medicine a frontier of endless discovery has less to do with the scientific advances pushing the envelope on our medical know-how and more to do with how our patients challenge what we believe we know about ourselves.
A week after shopping for rainbow socks, Ms. Weatherby’s heart, lungs and kidneys stop working. She has already communicated her wishes for no escalation of care (meaning no blood pressure medication, antibiotics or dialysis) but that she wishes to continue her current level of life support (keeping her breathing) for as long as she is otherwise able. Much of her family has been able to travel to see her in person; others have visited via Skype. Ms. Weatherby died how she had lived, each moment to the fullest, grateful for what she had been given.
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With advanced medical technology as it is, we can keep many people alive almost indefinitely. But to what end? Why do we assume that cure is always the desired outcome when someone seeks medical attention?
This approach to care seems to be as old as the medical profession. Or at least for the past few centuries. Watching the final act of the 1852 Verdi opera, La Traviata, I catch myself gasping and shaking my head in shame as the scene between a doctor and his dying patient unfolds:
Doctor: (feeling his patient, Violetta's pulse) Yes. How do you feel? Violetta: My body suffers, but my soul is in peace.Last evening a priest came to comfort me.
Religion is a great consolation to the suffering.
Doctor: And during the night? Violetta: I slept quite peacefully. Doctor: Courage, then. Your convalescence is not far off. Violetta: Oh, the little white lie is permissible in a doctor.This exchange is followed only moments later with the doctor’s confession to Violetta’s caregiver, Annina:
Annina: (in a low voice, as she shows the doctor out) How is she, sir?
Doctor: She has only a few hours to live.The compulsion to act in ways that pretend to nurture life, even when it is so clearly waning, is pervasive. It makes us deaf to the wishes that are wanting to be discovered.
The only thing that leaves doctors with “nothing more we can do” is when we fail to ask.