The Challenge of Bearing Witness to Patient and Family Suffering

“How do I honor this pain so that it teaches and blesses and does not destroy?”

By Jacob Molyneux, AJN senior editor

Illustration by Neil Brennan. All rights reserved. Illustration by Neil Brennan. All rights reserved.

This month’s Reflections essay (“Why?“) is by a pediatric chaplain. As the title indicates, it’s about the questions we all ask in the face of suffering and loss. The precipitating event for the author is the baffled, enraged cry of a father who has lost a child, and her own struggles with the impossibility of giving an acceptable answer—to the child’s parents, or to herself as a daily witness of loss and suffering.

How does a chaplain, or for that matter a nurse, witness the pain of patients and their families time and again and keep from either shutting down or being overwhelmed by the stress and emotion? As we’re often reminded, self-care matters or there’s nothing to give the next time: yoga, gardening, humor, family, cooking, whatever works for a person. Is it enough? Yes, and no, says the author. Here’s an excerpt:  […]

2016-11-21T13:02:19-05:00July 8th, 2015|patient engagement, Patients|1 Comment
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The Borders of Loss: An Early First in One Nurse’s Career

Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog. The illustration below is hers.

Peds Ward (2008), charcoal, graphite, flash, and acrylic. By Julianna Paradisi Peds Ward (2008)/charcoal, graphite, flash, and acrylic/by Julianna Paradisi

Working in oncology, the topic of whether it’s crossing a boundary for nurses to attend the funeral of their patients comes up. Sometimes, however, we’re carried across that boundary by our heartstrings. The first patient funeral I attended was that of my first patient.

During Jack’s short life, he was the first assignment of many a new nurse on the pediatric unit where I was hired as a newly graduated nurse. He had lived in the hospital his entire life.

Jack was nearly ten months old when we met. Born with a congenital illness requiring multiple surgeries, he failed to thrive. A nasogastric tube snaked through his nose into his stomach so he could conserve the calories burned eating from a bottle or spoon. As Jack’s nurse, I mastered the skill of nasogastric tube feedings.

Most parents bond with their chronically ill babies, but it takes a big commitment on their part. Babies like Jack do not look like the pictures of healthy babies in magazines. They are cloistered in an isolette and connected to […]

2016-11-21T13:02:33-05:00May 8th, 2015|career, narratives, Nursing, nursing perspective, Patients|2 Comments
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The Grief Train

Then came “the Morning.” There was coffee, the newspaper, and ironed shirts. I was getting ready for a student’s dissertation defense and Paul, my husband, faced his own challenging day. As I prepared to shower, a crash sounded beyond the bedroom door. Something about the silence that followed made me grab my robe and go running.

GriefTrainIllustrationThat’s a teaser paragraph from AJN‘s October Reflections essay, “The Grief Train,”  by nurse, professor, and award-winning author Cheryl Dellasega. She writes about teaching a course called Death and Dying, and then having to try to make sense of a sudden, terrible loss in her own life. Like many profound American stories, this one ends in a long train trip.

I edit this column every month, and some of the stories go right to the heart of life, love, death, health, illness, healing, human connection and disconnection. The essay is free, so please click on the link above and read the whole thing. It’s well worth five minutes of your time.—Jacob Molyneux, senior editor

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2016-11-21T13:06:25-05:00October 3rd, 2013|nursing perspective|1 Comment
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Come Into My Parlor

Amy Getter, MS, RN, lives in Eugene, Oregon, where, in her own words, she “works with people with life-limiting illness who are enrolled in a hospice wherever they consider ‘home.’”

by Ramon Peco/via Flickr by Ramon Peco/via Flickr

I fondly remember becoming acquainted with my first “parlor,” in a 100-year-old home that my family moved into during my teen years. The walls were dressed in faded, peeling, paisley-patterned wallpaper and a tarnished brass chandelier hung from the ceiling. French doors closed it away from the rest of the living area, giving it a slightly mysterious aura. Far-off city lights blinked at me from elongated paned windows. I immediately claimed it as my bedroom.

The word parlor (derived from the verb “to speak”) may have first been used in medieval monasteries. An “outer parlor” was designated for receiving outsiders and attending to business needs and the “inner parlor” was for the monks’ private use. During the mid-19th century, formal parlors evolved and could be found in homes like the one my family lived in.

Weddings, funerals (being “laid out”), and other social events occurred in the parlor. Home businesses emerged (such as “funeral parlors”—offering an option for laying out the deceased in someone else’s home!). In recent years, care of the infirm and preparation of the […]

2016-11-21T13:06:28-05:00September 27th, 2013|narratives, nursing perspective, nursing stories, patient experience|3 Comments
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A Fine Line Between Patient and Provider, and a Mother’s Plea for More Epilepsy Research

by Eric Collins, ecol-arts.com by Eric Collins, ecol-arts.com

Thomas is a frequent flier in our ER, a bespeckled 40-something with coke-bottle glasses, a man who seems to run, like a dog out for a joyride, right into the arms of the dogcatcher. The police bring him in, one man on each arm, his legs limp. Thomas has schizoaffective disorder, dives into the fountain at the mall, screams at strangers at the YMCA, paces outside the grocery store. In a way, I understand—sometimes behaving according to convention can be a little dull.

That’s the start of “Thomas,” the July Reflections essay in AJN by Emily Maloney. It’s about the fine, but still absolute, line that can exist between paid provider and patient at moments when life feels overwhelming to both. Or something like that—it’s hard to summarize a nuanced, lightly ironic account like this in a few words. Like all Reflections essays, it’s short, free, and worth a full read.

The July Viewpoint essay, “A Son’s Seizures,” is written from the perspective of a mother, Linda Breneman, who looked beyond her own experience to become an advocate for all those with epilepsy, particularly those with the intractable sort that doesn’t respond to most treatments. While most people with epilepsy respond to medications and can eventually live more or less normal lives, it’s the author’s well-argued conviction that more research needs to be done to help the subset of those with […]

2016-11-21T13:06:58-05:00July 19th, 2013|Nursing|1 Comment
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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