Summer Issue 2022
A Time for Every Purpose: Hospice Care in Kentucky
By Portia Pennington
The sun comes up. The sun goes down. This steady, abiding rhythm is the thrumming strumming chord that undergirds every heartbeat of our lives.
We are born. We will die. This, too, we know, from the first moment our childish minds comprehend the smashed spider, the crushed ant, the goldfish on the bottom of the bowl, the pup buried under the maple tree.
While death is — and always will be — an essential part of living, it is the part about which we know the least, fear the most, and avoid at all costs. Many times, the avoidance of death is far worse than the dying itself. The ongoing, daily battle we fight against the inevitable causes the painful loss of what we so often take for granted: our precious dignity and autonomy.
That liminal space between living and dying is where hospice nurses, doctors, social workers, and chaplains quietly provide care for the terminally ill as they transition from life, allowing them to do so in the best, most dignified, and most personal of ways.
This primary principle of the best life, and the best death, is the cornerstone of hospice care. The modern form of hospice philosophy arose in south London in 1967, when Dame Cicely Saunders, noted English nurse, social worker, and doctor, founded St. Christopher’s Hospice. Shortly thereafter, Florence Wald, Dean of Yale School of Nursing, who was long frustrated with the failure of modern health systems to properly care for the dying, traveled to work at St. Christopher’s. She returned to the U.S. convicted that this was the way to approach death: with dignity and autonomy intact. In 1974, Wald, two pediatricians, and a Yale medical center chaplain founded the first U.S. hospice in Connecticut. Saunders and Wald knew that rather than dying alone, in hospitals and nursing homes, with tubes and monitors and teams of medical staff tasked with prolonging the inevitable, there had to be a better way.
By 2010, “…forty-five percent of Americans died in hospice, and more than half of them received hospice care at home.”1 These growing numbers are perhaps indicative of a modern world’s very real need to connect in significant ways when human contact is the only thing that can provide any substantive relief from the universal process of saying goodbye. Such human contact is best practiced as singular, one-to-one, and most often, between patient and nurse.
Laura Beth Durbin, a Registered Nurse with Hospice of Southern Kentucky, is the type of nurse anyone would want: whip smart, focused, with a memory like a steel trap and a heart flung wide open. She knows these people and their families. She knows what they fear and what they hope. She is determined to see they get as much out of life as they possibly can in the most pain-free way.
During the first 100-degree heat wave of the summer, Laura Beth strapped into her car in Bowling Green and headed out to see three favorite patients, folks who were as anxious to see her as she was to see them. First on the schedule was Deborah, a 67-year-old mother and grandmother.
Photograph courtesy of Portia Pennington
On this day Deborah and her caregiver, Julie, greet their visitor with smiles. Laura Beth pulls a chair up close, as she and Deborah speak in low, private tones about Deborah’s days and nights, her pain, her medications, and other physical issues that plague her. Theirs is a conversation between friends, and the talk shifts to a recent “man’s sleepover” when six young grandsons spent the weekend with Deborah and her husband. “They had a blast, but they made a mess,” she shares with a smile.
Deborah’s regard for Laura Beth is palpable.
For Laura Beth, she and her patients “develop a friendship where communication goes both ways, so it doesn’t necessarily feel like [she’s] there as their nurse.” She relates,
The Hollywood version of death and dying that most of us contemplate for ourselves or our loved ones is far from reality. The beautiful bedside, the patient in full glow, or the hint of shadow under the still quite-vibrant eye, as opposed to the incessant beeping of monitors, the rushing of medical personnel, the intrusion of tubes, and strict limits on visitors. In a healthcare system that operates under the constraints of an antiseptic approach, where emphasis is placed on the removal of touch and prolonging life, no matter the cost, hospice provides a return to personalized attention. In this way, patients can truly feel like individuals.
Here there is no ticking clock: the hospice nurse can give her friend her undivided attention, then together they plan the next visit and wave a fond farewell. Back in her car, Laura Beth quickly and succinctly completes her charting, with notes that assist the rest of Deborah’s caregivers in making sure she has all she needs.
Hospice services are based on a continuous circle of care provided by a team who knows each and every patient as an individual. Dr. Mike Byrne, Medical Director at Hospice of Southern Kentucky, describes the “beauty and simplicity” of the system, of the consistency, the constancy, of faces who become so familiar and dear.
The caregiving team has “made a covenant with them” to do just that.
The circle of care begins the very moment a person, from infants to seniors, enters hospice. Physician, nurse, social worker and chaplain all come together with a singular aim: to provide the best days possible for each individual. The teams gather in weekly IDG (Interdisciplinary Group) Meetings to discuss in detail each patient, their family members, individual concerns, and private dreams and goals. The team works together to help each patient achieve as much as they can in the time they have remaining.
Photograph courtesy of Portia Pennington
Next on Laura Beth’s schedule is Kenneth, 67. He calls through the door for her to come into the home he shares with his wife of forty-five years, their daughter and her partner, two grandchildren, and a grand-dog named Duncan.
Laura Beth plops down on the couch next to Kenneth, looks him in the eye, and says, “I hear something happened while I was gone.” Kenneth leans over and shares an adventure that could have ended badly. In the wee hours of the night, somehow dangerously low on oxygen, Kenneth became disoriented. He wandered out of the house and down the street. A night owl neighbor found Kenneth and got him to the porch. Kenneth was able to get back on his oxygen and gradually reorient himself. A tragedy averted. Now the two, nurse and friend, put their heads together to figure out why this occurred.
Laura Beth checks Kenneth’s oxygen level and then slips through a curtain that separates the private part of the home. She follows the oxygen’s tube, ensuring the tank is working properly. They continue to talk while Kenneth’s wife, Patricia, the (“‘old lady’…I think she gets pissed off, if I call her by her name,” he teases) goes in and out of the room, asking questions and sharing family information.
Laura Beth and Kenneth review his medication, which is kept nearby in a plastic tote. This ensures that Kenneth has the pain relief, anti-nausea, and anxiety meds to keep him comfortable and pain-free. He knows what helps, and he knows when he needs it. For all hospice patients, comfort and calm is a primary focus. Their input is an essential, necessary part of the care plan.
Patricia stands behind Kenneth and taps him lovingly on the head. She worries about him passing while the children are in the house. Patricia looks at Laura Beth straight in the eye and asks the important questions that weigh on her soul: When will she know, and what are the things to watch for?
Laura Beth doesn’t flinch. The three of them talk calmly about these questions. Then the conversation shifts again to an upcoming family 4th of July gathering at the lake. Laura Beth assures Kenneth, “We can get you there. We’ll just figure out how many oxygen tanks you need for the day, and you can head on up.” Kenneth demurs, unsure if he will be able to make the trip. However, he rests easy knowing that his friend will help him, if he decides to go. The talk turns yet again, this time to his guitar named “Baby.” Kenneth recalls a prayer he prayed as well. “Before something happen[s] to me, let me learn and play one song all the way through.”
Photograph courtesy of Portia Pennington
Kenneth asks, “Am I taking up your time, honey?” Laura Beth assures him he is not. Then, after a quick search on his phone, he and Laura Beth sit with their heads together and listen to The Gaithers sing “Thank You Lord for Your Blessings.” Laura Beth shares with Kenneth that her father, who passed a few short months ago, “loved anything by The Gaithers.” It is this type of shared experience that creates strong foundations in the hospice community. Caregivers and patients participate in each other’s lives in ways that go beyond mere attention to symptoms and prescriptions.
Kenneth’s thoughts turn to what may happen down the road. He voices his worries about leaving his wife and children with any burdens and then says, “If there’s anything I could do for you, I’d do it.” He means it. He would. The couple reiterate how glad they are Laura Beth is back from her trip, and she makes plans for the next visit. She bids them a warm farewell before she heads out the door, on to her next patient.
Many hospice patients worry about how their loved ones will cope after their deaths. Those receiving care often plan for a future without their existence and work with licensed social workers and trained chaplains to ensure they have vital support both now and in time to come. Some patients even prefer to plan their own funerals. Social workers help these individuals find much-needed assistance, which makes the entire family’s journey easier. Professionals help to arrange things such as meals, equipment, in-home support, and relocation for when in-home care becomes impossible to provide. The important thing is no patient, and no family member or caregiver, has to do this work alone.
Caregiving is lonely and difficult. Oftentimes loved ones need a brief time away to allow them to continue. They may request respite care, which allows a patient to be housed for a short time in an inpatient facility. Similarly, if a patient develops acute symptoms with pain, nausea, or other issues that cannot be managed in the home care setting (e.g. skilled nursing facility, assisted living, or a loved one’s residence), they may receive care in a hospice inpatient facility. Here, patients continue to receive care provided by their assigned physician, nurse, social worker, and chaplain throughout the duration of their stay. One such facility is Hospice House in Bowling Green.
Recently, Dr. Byrne checked in on eight patients at Hospice House, some of whom had loved ones nearby. Each patient, even those who may have been unaware of his presence, received the same tender touch and compassionate attention. Family members asked him questions, shared stories of Rook games and breakfast table conversations throughout the years. One person even spoke of a recent visit with their mother that they will always remember. Each patient’s room is quiet and serene. Dr. Byrne notes, “There are no monitors, no IV poles. Our tools are our hearts and our hands.”
Photograph courtesy of Portia Pennington
That same day, in the conference room at Hospice House, social worker Teresa Jones met with the loved ones of a 41-year-old patient who passed unexpectedly. Some deaths come out of the blue, far less expected than others. Teresa provided help in processing the sudden loss and overseeing the necessary plans that still needed to be made.
Chaplains, like Todd Tarbett, meet patients wherever they may be in regards to their spiritual needs. He answers questions or sometimes simply offers the gift of a listening ear. Both social workers and chaplains have a firm understanding of each patient’s situation. This often includes the intricate relationships between caregivers and family members, the inner workings of each household, and other sensitive issues that may exist. They are essential members of the care team who provide vital information during the IDG meetings, and many times they sit with loved ones at the time of death.
While the team works together seamlessly, it is the nurse and the certified nursing assistant who come to know the patients most intimately. This is a result of frequent visits that may include performing acts of personal care such as bathing, grooming, and dressing. Their hands, in many ways, are the hands of hospice. Without them, no hospice could survive.
Photograph courtesy of Portia Pennington
When Laura Beth enters the door to see Daniel, her third patient of the day, his wife Juanita also greets her with a smile. She is glad to see Laura Beth, and so is he. A Kentucky native, USAF veteran, and aspiring artist, Daniel, who is 61, lived in Florida with his wife until his illness became too difficult to manage. The pair ultimately returned home, where a son and his family have provided a safe haven. Daniel and Juanita share a living space with a granddaughter and two great-grandchildren, the youngest a mere seven months old. Daniel is proud to have been able to meet little Draven.
Laura Beth assesses Daniel’s physical needs, asks about mobility challenges, and checks his supply of medication. He is comfortable talking with her from his bed, and shares stories of his Air Force days; the first painting he sold, in Sunfish, Kentucky; and of the geisha he painted for his wife. Daniel proudly displays the tattoo he had made of the painting and the complementary samurai on his opposite arm. Unfortunately, it’s a piece a of work that disappoints his artist’s eye as the tattooist did not match the design of the geisha as he had hoped.
Photograph courtesy Portia Pennington
Before she leaves, Daniel looks at Laura Beth and asks, “What will happen to the lift, the bed, the table…?” He gestures at the medical equipment that surrounds him. She assures him it will be taken care of, picked up and removed so his loved ones will not have to worry. He settles back, the question that had been weighing on him had been answered. His mind is at ease.
When Laura Beth and the team meet to share their experiences with Deborah, Kenneth, Daniel, and other patients, it is with the intent of honoring those final days. “Understanding the finitude of one’s time [can] be a gift,”2 a gift many never realize. Autonomy and dignity are some of the greatest tributes we can provide our loved ones as they move through this stage of life. Such a transition, Todd Tarbett says, is almost always met with trust and courage. Trust and courage that is accessible, in large part, due to thoughtful and adept hospice teams.
In return, our loved ones in hospice care provide us with their own final, precious and lasting gift: time. Time to sit with them, to think, to say goodbye. Time to prepare for a life without them.
To those who must stay behind, they give the gift of a deep connection, in the most meaningful way, with the steady rhythm of life and death. The regular, unstoppable rising and setting we have known since before we were born, and that is as much a part of life as our own heartbeat.
Photograph courtesy of Portia Pennington
Additional Resources
www.kahpc.org
https://www.nhpco.org
https://www.nahc.org
1 Gawande, Atul. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books.
2 Gawande, Atul. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books.
Portia Pennington lives and writes in Bowling Green, Kentucky. She holds her MFA from Spalding University and her MA in Writing from WKU.
A Kentucky native, she treasures stories about our state and its people. She curates profiles of folks who help keep Kentucky moving at Kentucky at Work
Find more of her work at www.portiapennington.com