Hospice Nurses on the Frontlines – Again – COVID 19-edition

by Colette Rice

A new, previously unknown virus tears through communities across the world. No one knows exactly how it spreads, who it attacks or what it does to the body. There is no effective treatment. There is no cure. There is no vaccine. People are scared. People are dying. And in the midst of the fear and sickness and death, a group of people step up to care for the sick and dying. They touch people no one else will touch. They serve as stand-in family, absorbing suffering and witnessing the final hours of patient after patient. They give comfort where no comfort exists. 

The year is 1987, not 2020. The disease is not COVID-19. It is AIDS.

And the heroes who embrace what everyone else is afraid to embrace? Hospice nurses.

Though COVID-19 and AIDS are vastly different diseases, the challenges both presented at their onset flummoxed medical research, taxed healthcare providers, and left patients isolated and hopeless.

At the start of the AIDS epidemic, it was the hospice nurses who stepped in, took their gloves off, and comforted dying patients. These nurses were caring for a completely different demographic than they were accustomed to, and the differences were challenging. 

Hospice patients are often elderly, with defined medical conditions, a team of healthcare providers and a list of medications. They usually have family and friends who love them. At some point within the transition to hospice, they understand that their life will soon end. 

The first AIDS patients were mostly young and otherwise healthy men. Desperate, frustrated by a lack of movement towards effective treatments, they often treated themselves with high doses of vitamins and supplements, drugs borrowed from other patients, or, in the case of intravenous drug users, non prescription or illegal drugs. Many were uninsured, and coordinating appropriate treatment was difficult. AIDS patients had often been forsaken by their families, and faced this terrifying new world alone. This was mostly new territory for hospices nurses.

Nevertheless, they stepped in, led by a program from Zen Hospice in San Francisco, CA. Zen Hospice was founded to address the needs of the terminally ill within the homeless population of San Francisco. Volunteers from the Zen community were trained to care for the dying. The project was seen as a way to lift the Zen practice out of an individual and often theoretical focus, and into community service.

Seeing the enormity of suffering in San Francisco during the AIDS crisis, Zen Hospice turned its attention to caring for those dying from the mysterious virus. In doing so, they forever altered the way the healthcare industry cares for the dying. They injected humanity and compassion into a sterile and often cold environment. They brought their hearts and they changed the world.

Hospice was not well known at the time, much less well understood. Yet it was the hospice industry, and hospice nurses in particular, that changed the face of end-of-life care.

By meeting patients where they were, suspending judgment, refusing to bow to fear, and treating each patient with the care and loving attention we all would wish for ourselves, the hospice nurses of the 1980s and 1990s modeled a new standard for healthcare. They raised the bar, and the terminally ill today continue to benefit from the new standard of care they created. 

As we face a new global threat, it is nurses who are once again stepping into the fray to give care, comfort and advocacy. Again, they are the healthcare workers most connected to the patients in their final hours. 

Hospice nurses are among the most dedicated and compassionate in the field. They risk their own health to care for those who need them. They create sacred moments in the midst of chaos. They help coordinate care when the entire medical team is stretched beyond its limits. 

And they are being tested like never before.

The central value and commitment of hospice is that no one will die alone. Everyone’s passing is sacred. Family and friends can be guided and supported in their role as loved ones to the dying. Comfort can be given. 

Yet, in this new COVID-19 world, people are dying alone. Families stand outside hospitals in tears or wait anxiously by the phone for news of their loved ones. Nurses are often the only people present to comfort the dying and, afterward, the living. In the absence of family, they provide the love of family. 

And again. And again. Their compassion is boundless and their work eases pain and reduces suffering. 

LaDonna Seeley is a Registered Nurse with Yolo Hospice. When COVID-19 hit, she immediately volunteered to go into the facilities most impacted by the disease to care for her patients. She stayed in a local Airbnb, away from her family and colleagues. “My first concern was to keep my family, my patients, and the Yolo Hospice team safe. I gave up all other patients to the expert care of other case managers. I knew I was in it for the long haul, and my family was supportive, knowing that I had to do this for those dying from COVID-19. I knew that I was going to be extremely exposed on a daily basis. I needed to have adequate PPE and I needed to know that when I was done for the day, I had a place to rest and be ready for the next 12- to 15-hour day.” 

Ms. Seeley serves not only as caregiver for her patients, but also as a guide and mentor to other medical professionals less familiar with end-of-life issues and protocols. “I was there not only for the patients,  but for the new and inexperienced CAL MAT (California Medical Assistance Teams) members who had never before been with patients who were on hospice or who had chosen DNR (Do Not Resuscitate) on their POLST (Physician Orders for Life-Sustaining Treatment).”

At a time when many of us are fortunate enough to stay several layers removed from this new and often catastrophic disease, Yolo Hospice salutes hospice nurses for all they do – all they have always done – to bring comfort to the most vulnerable patients. In the 1980s and 1990s, they changed the face of healthcare. Today, they continue to raise the bar on end-of-life care, bringing grace to those whose time in this world is short. Those who crave the presence of another human being in their most difficult hour are supported and comforted by that most compassionate of beings, the hospice nurse.