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LEHIGH VALLEY WEATHER

Hospice nurse remembers her patients

Allentown resident Linda Mancinelli, R.N., who recently retired from full-time work as a hospice nurse, spent more than three decades working with patients who have a prognosis of less than six months to live. She decided to share the stories of some of her patients in a book, “Before You Go,” published May 20 by Blue Heron Book Works, headquartered in Allentown.

“I wanted each [chapter] to be a tribute to the unique individuals I served during their last days,” Mancinelli explains in her book. She describes the circumstances and thoughts of eight patients and their families. Readers find out what mattered most to each individual as he or she faced death. Other than Marie, the family member in chapter eight, the names used are pseudonyms to protect the privacy of the patients and their families while telling their stories with a level of detail that allows readers to understand each patient’s situation.

One such patient is “George,” a combat veteran and retired attorney, who wanted to share stories of his service to the United States in World War II. Another is “Shirley,” a widow living with a border collie and a rescued cat, who was deeply concerned with the stewardship of the animals that had been in her care.

“These things that are so taken for granted by people that are not sick, mean so much to someone like Shirley,” Mancinelli told us in an interview. “The fact that we found the farmer who said he’d take [Shirley’s border collie] when the time was right, it really set Shirley’s mind at ease.”

Perhaps the book reveals as much about hospice workers as about their patients. Mancinelli’s narration demonstrates that many hospice nurses and aides have pieced together a set of supernatural beliefs about death and dying to make sense of the system in which they operate – a system in which adult patients have opted out of curative treatments, and all patients have given up hope for a cure.

Mancinelli describes in “Before You Go” the goals of hospice: chiefly, comfort and acceptance of death: “The hospice team begins this journey and at every turn lends the support needed to help the patient be as comfortable as possible. Our goal is also for the family to gain peace.

“Not unlike a beautiful mosaic or puzzle,” Mancinelli elaborates in the preface, “everything fits together well. […] As time goes on each puzzle piece is aligned, until there is just one space left. […] It is the piece filled by the act of their dying.” The nurses and aides who are part of this “puzzle” adopt contemporary fables about the afterlife in order to cope with what they do.

For example, “Before You Go” features an infant with an apparently untreatable gastrointestinal condition, stating, “A certain feeling would permeate our office when a referral came in for a newborn or small infant. […] From the moment we knew [this patient’s] name, he was our little Angel.” When noting in chapter three the eventual death of Shirley’s border collie, Mancinelli asserts, “I know that she was met by Shirley on the Rainbow Bridge,” referring to the “pet heaven” conceptualized in a 1959 poem by Scottish teen Edna Clyne-Rekhy.

Mancinelli said she was motivated to write the book for two main reasons: as a tribute to the families who allowed her into their lives at a challenging emotional time, and “to educate everyone on end-of-life care,” including her view that hospice is underutilized.

“Unfortunately,” she tells us, “there are still physicians that are reluctant to order hospice,” noting that some doctors voice the concern that, “My patient isn’t ready to die; why would I want to have hospice?” She explains that “hospice isn’t deathbed care; it’s good symptom management that leads to the event of death.”

In the end, Mancinelli’s thoughts on death and grief come from both professional and personal perspectives. The last patient in the book is her sister-in-law Marie, whom she helped with personal care when Marie’s health declined, and on whose behalf she acted as a liaison with the official hospice nurse.

“There’s not a right or wrong way to grieve,” she says. “You grieve through what’s happening. […]I have a problem with the word ‘closure’ [because] it implies [that] you’re going to grieve for so long, and then you’re going to have closure, and it’s going to be OK. My mother died in 2011, and there are still things today that conjure up memories for me, and that’s OK. So you stand with that part of your grief that’s still with you, and you let it flow.”

PRESS PHOTOS courtesy of Beth Berdofe White Linda Mancinelli began her career as a hospital nurse, then spent more than 30 years working with patients enrolled in hospice.
Linda Mancinelli's book “Before You Go” tells the stories of eight of her hospice patients.