For the past 40 years, I have had the privilege of being present for people at the end of their lives. They may have had dozens of family members and friends, and perhaps a thousand connections in their online communities. But in those final days and last hours-especially late at night or in the very early morning-usually only two people are in the room: the individual (known in hospice as the patient) and the hospice professional. Even when I attend to someone who is dying at home, there are normally only four or five people: one or two family members, a nurse, a chaplain, and me. Over the years, I have learned that what matters most-far more important than anything I or anyone else can say or do-is to be present.
In my practice as a social worker and a certified case manager, I have managed end-of-life care within large health care systems and have provided hospice and palliative services to patients in nursing homes and other facilities. Looking back, though, I can see how my professional story begins in rural Ohio where I grew up. It was common in those days to hold the wake of family members who have passed, with their bodies laid out in the home's parlor. Death was not to be feared; rather, it was just the final stage of a life to be honored.
In college, I had wanted to become a physician and, as a premed undergraduate, I worked with transplant patients, drawing blood and spending time with them between appointments. Then one of my mentors, Dr. Thomas Starzl, who performed the first human liver transplants, pulled me aside and suggested that I consider becoming a social worker instead of a physician, because I enjoyed talking to people so much. Respecting him and his advice, I met with the hospital social worker and embraced this career as my new professional path. To gain some practical experience, at her suggestion, I volunteered on the night shift at an eight-bed hospice outside Pittsburgh. Most nights, a nurse and I were the only ones on duty, and I provided far more hands-on care in those days than would be allowed today, from changing and repositioning patients to assisting the nurse with wound care and administering medications.
Caring for the Dying and the Living
Beyond the clinical, I learned many other lessons as well, such as how common it was for people to die during the quiet hours. Without their loved one's present, people often could pass in peace. I used these experiences to support and comfort family members who wanted to be there for the moment of death, but sometimes missed it because of circumstances they did not understand at the time.
An adult son and a daughter were devoted to their mother and stationed themselves at her bedside around the clock as she lingered. Needing a breath of fresh air, they left the bedside and went outside for no more than 10 min, while I promised to stay with their mother. A minute or two after they left, I called the daughter's cell phone and suggested they come back inside immediately. But before they returned, their mother died. They were devastated, as if they had abandoned her. I assured them that she had not been alone; I was there. More than that, I believe that their unresponsive mother had somehow wanted to take her last breath while her children were outside together. In the end, all were at peace. Such experiences have always reminded me that while I attend to the dying, my work embraces the living.
I have also worked with estranged family members who came to the bedside of a dying parent or other relative to make amends, ask for or provide forgiveness, or simply to say what needed to be said before it was too late. Each time, I assured the family member that they would have privacy without interruption. The nurse or I would knock on the door if we needed to enter the room. I have no idea what was said during those private moments, but afterward I could tell that the family member was at peace. I also believe that the same could be said for the dying patients, many of whom passed soon thereafter.
Over four decades in end of life, I have been present in some of the most emotionally wrought circumstances, such as the untimely death of someone who leaves behind young children. Just recently, I met with a hospice patient and her husband; she was only 44 years of age and the mother of three small children.
The admission nurse and I have a very close relationship, and she knew the value I would bring to this family. So, when I asked to be there with her, she concurred. We met for 2 hr on a Friday afternoon, and afterward I told her husband, "This is going to be fast." Over the weekend, with her husband at her bedside and her children asleep, she died. It was a moment of profound sadness and loss for that family and also of beauty and peace.
Throughout all of my experiences, the ones that impacted me the most were during the COVID-19 pandemic when end-of-life care changed dramatically. Suddenly, people were separated from their loved ones for fear of contagion. In hospitals and nursing homes everywhere, people were alone, scared, and dying. In its aftermath, COVID has taken an emotional toll on so many who lost loved ones, as well as on those of us who attended to the dying and the bereaved. I recall the adult daughter I counseled who lost both of her parents just months apart during the pandemic. Because of lockdowns and other restrictions, she was not able to see them as they approached the end of their lives. The lack of a final "I love you" has been a bitter loss that she has struggled to move beyond (Demoratz, 2021). As I have witnessed, these emotional losses are grieved just as much as the physical death of a loved one.
Although my work with the person and their support system or family is very personal, I am not the only one on the care team. I am part of an interprofessional team that includes nurses, aides, physicians, and chaplains. In fact, I often share that "I'm the marketing person for the chaplains"-I have so much admiration for their vocation. Chaplains and clergy do far more than "last rites." They engage in the existential conversations, from the meaning of life to people's beliefs about what comes next.
The best way to describe the collegiality present in hospice is we have each other's backs. We ensure quality care and advocacy for the individual and their loved ones, while supporting each other through what can be very long days and nights.
From Endings to Beginnings
Over the years, I have learned that my empathetic approach allows me to be more fully present; it is simply a large part of who I am. At the same time, I have had to learn to keep some emotional separation to preserve my own physical health and mental well-being. I am sure that many case managers can relate, whether they work in end of life, with catastrophically ill or injured people on the long road to recovery, with clients grappling with a new diagnosis, or advocating for individuals in many other care settings. In all that we do, we need to keep a space for ourselves to refresh ourselves and recharge; otherwise, there will be nothing left.
After 40 years, the time has come for me to make some major changes. My partner, Lindburgh, and I have bought a large, beautiful property in Newcastle, PA, which is 20 min from where my 90-year-old mother is living. We are building a fully accessible apartment for my mother to reside with us if she chooses, as we envision what this 32,000-square feet historic property can become.
For me, this is more than just a homecoming to a part of Pennsylvania where I spent many years. It is also a gift to my mother and myself. I will be there to take care of her and, when her time comes (hopefully years from now), I will be at her bedside, holding her hand just as I have done for so many others.
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