Fiddler, John B. MSN, RN, ACHPN
My first job as a nurse was offered to me by the director of a prestigious intensive care unit in the heart of New York City. He was enlightened enough to recruit novice nurses directly into critical care.
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I spent the next seven years learning the ways of the ICU. I became expert at tending to the critically injured—and to the families who so often suffer alongside the patient.
I learned to balance potent resuscitative drips with human vital signs, bright red numbers and undulating colored waves upon a bedside monitor.
Family members would watch the waves, trying to make sense of the connection between the screen and their loved one lying in the bed beside us. Occasionally, the waves would decrease in frequency, then slow and fade into an unending flat line.
I experienced the power of critical care, of saving and extending life, and occasionally, prolonging dying.
I became comfortable with the power of silence, my presence as a nurse enough to reassure a family in distress. The simplistic-sounding components of therapeutic communication, learned in nursing school, became actively powerful.
“John, this is awful.”
“Yes, Beth, this is awful.”
I learned the truth will not kill you.
My interest in end-of-life care grew. I joined a palliative care committee and further explored the landscape of death and dying. I observed the ongoing legal and societal dyspnea provoked by a do-not-resuscitate order.
I have vivid memories of frail elderly hands—sometimes gently assisted—scratching a signature on a proxy form that could mean the difference between an uninvited intubation and the freedom to breathe (and cease to breathe) without mechanical assistance.
As a new NP, I was offered a position on a palliative care consult team. I knew I was edging closer to my ideals of nursing, of caring for patients and families in distress.
Challenges remained—I learned how to absorb instructions such as, “We want you to fix his pain, but don't talk to him about his prognosis.”
A consult was canceled because the patient's presumed imminent death at the hands of a palliative care team would be reflected in a surgeon's mortality statistics. I witnessed relief from suffering withheld by medical staff and family members out of unfounded fears of opioid side effects.
Then, last year, I was offered a job in an inpatient hospice.
Inpatient hospice to me was the room at the end of the palliative care corridor that I had never bothered to visit. I had pictured it as a quiet haven for the dying, where birds chirp outside and music is heard playing through open windows as patients calmly drift off and up into dusty shafts of sunlight.
Instead, picture a unit where patients arrive on stretchers in extreme pain and distress, afraid, breathless—usually with families trailing behind, holding on to as much emotional and personal baggage as they can carry. Often these patients bear the physical and psychic bruises of a prolonged ICU stay.
And this is what happens here…
We do vital signs once a day. We examine the patient to get the information we need. There are no bedside monitors; the only waves we watch and negotiate are those of emotions. We address uncontrolled symptoms with a freedom derived from familiarity with the palliative effects of potent medications. We give antibiotics, place ivs, send labs, and will transfuse blood—but only if we think the interventions will help us ease pain and improve the quality of the patient's life.
Sometimes we do little, except remove the sticky layers of medications accumulated over months and years.
We see families liberated by a prognosis:
“Your mother has days to live… ”
“I knew it, but no one ever spoke it. Thank you.”
We see patients return home, renewed, able to complete their journey symptom-free. Others will die, peacefully, and we will scatter rose petals on their crisp sheets.
Our floors are carpeted and quiet. Indeed, we have a musician who plays guitar and sings requested songs at the bedside, and social workers and chaplains and volunteers who transform the clinical care into something wonderful.
And yes, I get involved in patients’ lives, cry with them and for them, and yes, it is sad. But there is often a strong current of beauty and truth running within and alongside our dying patients that is missing in so many other areas of medical care.
For this intensive care nurse, nursing on an inpatient hospice unit is as close to the ideal of nursing as I have ever been.
And truly, I see now, the inpatient hospice is the ultimate intensive care unit.
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