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Introduction: ‘Those Who Have Made Death Their Life’ [1]
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Date: 2025-01-15
EDITORS NOTE: Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers.
What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability.
More sensitive readers should be aware that some of the photographs show individuals who are in visibly declining health. Viewer discretion is advised.
All photographs by Hannah Clark.
Introduction
The first time I photographed death was in February 2020. My grandfather turned eighty-two on February 16. He died at home on February 17. I photographed my dad’s final moments with his dad. I photographed morphine dosages, the discoloration in his fingers, my Granny wetting his mouth with moist sponges. I photographed us waiting for the end. All of us gathered around his hospital bed in the living room as he was passing telling stories, making sure he was comfortable, texting, playing games, and watching TV.
Photographing the end of life isn’t about the spectacle of the end of life. These images are about care and the labors of love that come with seeing someone to the end. It’s a way to honor life and those who dedicate themselves to easing the passing of others. It is also a way to look at the end of life with a kinder eye.
Kristina Jeffery, CNA, bathes her patient, Mrs. Linda Walker, at the care facility where she lives in Rossville, Georgia. On this particular day, Mrs. Linda Walker was celebrating her 91st birthday.
These images were made while riding along with hospice workers and being introduced to the patients and family members that they work with. Before I began working with nurses, I went through a background check, drug screening, and volunteer training.
Written permission was given by each household. When patients could not consent due to certain conditions such as Alzheimer’s or Dementia, or patients were non-responsive or actively passing, permission was granted by their power of attorney. Even with this permission, I would still discuss it with the patients to ensure they were comfortable with my presence.
A Natural Conclusion
I have always had a preoccupation with dying. The first time I saw somebody die, I was five years old. My great aunt Sarah was 109 when she passed in her home in Chattanooga, Tennessee. Our family was gathered in her little house, sitting watch. I remember little pink sponges on sticks being dipped into water and used to keep her mouth moist when she could no longer drink. I remember the sunlight in her room and her bed near the window. I remember leaving the house to climb a magnolia tree in the front yard and then tangling with briers before crying to my mother.
I was curious about death and my other aunts answered my questions in a quite matter-of-fact manner. Why can’t Great Aunt Sarah drink the water? Why is her mouth hanging open? Why are her fingers purple? Then, I was curious about what would happen after. Would she be taken away by angels? Could other people see the angels? I couldn’t see them. Was I supposed to be able to see angels? The men that put her on a gurney and into a van definitely weren’t angels. And then, still disappointed about my inability to see divine beings, we went home, and life resumed.
Liz Bell, RN, uses her cell phone flashlight to check the ear of her patient, Mrs. Joy Davis.
This is the thing about death: for most of us, death is a small part of our lives. It interrupts our flow while the world continues around us. It is unfamiliar and jarring. In its presence, we feel helpless. We batten down the hatches, lean on who we can, provide what care we are capable of providing, and wait for its shadow to pass.
Fortunately for us, there are those who have made death their life, knowing its presence more intimately than scholars and even most doctors: those that take our hands and gently see us out of this life and usher us into the next.
Hospice workers view death not as an emergency, but as the natural conclusion to living. The Hospice approach to care is holistic and primarily focused on the quality of remaining time, not the extension of that time. Their goal is to provide comfort and dignity to those in their final moments, and a sense of security and support to the families of those in their care.
There is a pervasive idea that “hospice is where you go to die.” While there are facilities that offer hospice services, hospice isn’t a place at all, but a philosophy for approaching end-of-life care. The work done by hospice workers is about so much more than dying. This prevailing myth discourages potential beneficiaries from utilizing an important resource that could drastically improve the quality of their remaining time.
Hospice organizations are typically composed of an interdisciplinary team that offers a wide range of services to patients who have been diagnosed with a terminal illness and have a prognosis of six months or less. They attend to patients’ medical needs, such as pain management, medications, medical equipment, and physical therapy. In addition, hospice provides for non-medical needs, such as spiritual, emotional, and psychological support. Hospice workers also support families and caregivers by offering guidance, respite care, and bereavement counseling.
Part of what makes facing the end of life so anxiety-inducing is the lack of control that comes with it. However, facilitating an understanding of end-of-life care and all that it entails allows the opportunity for advance planning. This gives patients the space needed to discuss any concerns and make informed decisions that help to restore that sense of control, enhancing quality of life, and alleviating many of the difficult decisions families are forced to face when a loved one passes.
Cassandra Wallin, RN, discusses wound care with her patient, Mr. Robin Stanforth, at his home in Resaca, Georgia, in Gordon County.
The work of nurses and CNAs exists at the intersection of care and community. They visit homes within their counties and neighborhoods, and it isn’t uncommon for there to be a preexisting connection between them and their patients. Hospice workers become a daily feature in the lives of those in their care. They often have their own house keys and know each family member by name. They laugh at inside jokes, know each other’s secrets, and share stories with one another on everything from community history to tall tales.
These caregivers occupy a world that is their own. It exists within the bedrooms and living rooms of patients, scattered with oxygen tanks, diapers, and bed pads next to family photos, house pets, and aged blankets. Each home is its own unique museum to a life lived. They become their patients’ lifeline and their advocate. The trust between them is unlike any that we know in our day-to-day lives.
Mrs. Angela McCauley lays in her bed at Parkside Nursing Facility in Rossville, Georgia. Surrounded by photographs from her past, Mrs Angela loves telling stories about her past as an independent woman working as a landscaper. Now, she relies on the care of others.
In the twenty-six years since the passing of my Great Aunt Sarah, I have often felt that life could be measured in death beds and funerals. However, looking back, death was never the main event. The things I remember most are the other moments: a swipe of Chap Stick on dry lips, combing hair, a squeeze of the hand, the last dose of morphine just in case, and then the closing of eyes. Somewhere in the midst of these moments, family arrives, friends arrive, nurse arrives. Support arrives. Food, stories, laughter, and tears arrive. This is the main event. Death and life can not be separated. They are the oldest of friends.
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