We call them loved ones, family,
when life is thriving – intimate, caring.
We know them as legal guardians,
when death is approaching – cold, composed.
Her temperature, what is it? they ask.
Eyes stare, unseeing,
like bright stars, unblinking.
They watch the bloated body,
seeing what I cannot bury.
I watch the screen, waiting,
for the inevitable.
The blue and red synchronized waves flow,
and the green hills peak and undulate.
Cerulean, color of the heavens,
for the one who carries the breath of the living.
Like atlas, he shrugs,
The weight too heavy to bear, now failing.
And the red, color of roses,
for the thorn held in the beating, bloodied chamber, now drowning.
While emerald, the color of envy,
follows its broken lover.
Sounds abound, a mixture of chaos and harmony.
I wait, wait at the edge of silence
for the light to recede from eyes lost,
torn.
A singular beep punctures the din,
harsh against the cacophony of noise now mundane, necessary –
it measures life.
And when I speak, it falls softly
to eyes that listen,
and hearts that hear.
Normal, I say. A textured truth filled with falsehood.
Her temperature is normal in the vacuum of death.
A smile colors their faces, relief like the ocean roars –
A spark spreads, of hope,
the body is cold,
the screen screams loss,
erratic flashes unending.
But know it is well.
Death may have come,
but we have overcome.
As the world of medicine evolves and technology advances, the way we approach end of life and quality of life continues to rapidly evolve. For instance, when we withdraw support we do not call it “withdrawal of care” because we always continue to care for the patients and so the more accurate term is: Withdrawal of Life Sustaining Therapies. And where the term “futility” was once used to describe interventions that have a low chance of improving outcomes, we now prefer the term “medically inappropriate” therapies.
I have been a pediatric intensivist for X amount of years. And as pediatric intensivists, we watch a child’s steady deterioration, sometimes following an acute devastating injury or sometimes following a prolonged chronic illness. We witness the slow decline of their health and we recognize when the inevitable end draws near. But we can never predict when that end is. As I watch death approach, as I see the heart rate drop, the blood pressure decline, the saturations drift lower, what does the family see? Some families want “everything done.” They want to know they fought to the very end for their loved one. And so we the medical team fight against the odds. We do compressions on a bloated, fluid overloaded body, we pump blood and fluid into a heart that is struggling, we perform life-saving procedures on a patient who is comatose or in a vegetative state. We fight to save that which we realize is most likely unsalvageable. And maybe we save that life for a day, an hour or maybe even longer.
The challenge we intensivists face is that by virtue of our job, we see frequent instances of patients who despite our best efforts, still die. So why do we sometimes use interventions that seemingly cause more suffering and/or pain to our patients without any beneficial outcome? A follow up question is, what does the family see of these efforts? In pediatrics, we care not only for the patients but we also face the challenge of supporting the grieving families. It is the worst type of a nightmare when a child passes. Families are the ones who live with the memory of the death of their loved ones forever, we are only passing-by. In the end, what mattered most to the grieving family? If it was the quantity of time spent with their loved one despite the quality of life, then it behooves us to find ways to be tolerant and accepting of this view.
“All that Matters,” is a poem I wrote while caring for two patients with similar outcomes. The first was a child who was dying and all the mother wanted was for her child to have a bowel movement. In the second case, a critically ill patient was about to suffer a cardiac arrest and all the family asked was to be told her temperature reading. Why this preoccupation with something small in the face of the giant we faced? Even in the face of every other heroic measures we had already performed on the patient in the last days, weeks or years? Sometimes as the medical team, we wonder if we should redirect their focus. But with these two cases came the recognition that there is a weight of powerlessness so great upon these families during these challenging and nightmarish situations. Their preoccupation on something seemingly minor is their coping mechanism. Having some semblance of control helps families cope with the dying process. In those final moments, be it days or hours, when a family accepts the approaching end of their loved one, their last caregiver acts are all that matters.
Chinyere O’Connor, M.D, is a pediatric intensivist at UT Health Houston.