What Happens in the Space Where Hospice and COVID-19 Meet

During National Hospice and Palliative Care Month, we welcome one of our own who shares her experiences as a healthcare provider during COVID-19.

My Job As A Hospice Nurse

I started my job as a hospice nurse two years after placing my husband’s dusty ashes into a cool, marble niche of our church’s columbarium. My move into working for hospice was seamless. I found a nurse manager position posted at the hospice where Greg died. I applied, interviewed, and was offered the job over the next three days.

Pulling from my own experience, I saw hospice as a place to step away from the labs, the scans, the medicine cabinet filled with plastic bottles capped with white, child-proof lids. Patients and caregivers no longer had to drive around hospital parking garages, circling to the top floor for one of the last spots. They could leave behind the anxious time sitting in a bland chair waiting for a provider to poke and prod before delivering more bad news. Hospice was a powerful tool to claim our mortal destination. If life is like a camping trip, where we plan and pack and organize to have our basic needs met in the flimsy safety of a tent, then hospice is that glorious moment of calm and quiet before bed. It is that still, magical pause of sitting around a fire with loved ones, looking up at sparks that blaze into a starry sky, no longer dulled by the lights of our usual streets and homes.

My Assumptions Were Wrong

I quickly learned that my assumptions about hospice were wrong. While I imagined hospice as a time of letting go, I instead found people desperately clinging to the very systems they left behind. A patient’s daughter insisted that her mother had to have her thyroid medicine at precisely 7:30 a.m., screaming at my nurse who had no control over the med techs delivering medications at the assisted living facility. Even on hospice, some still denied the steady steps towards death, the phrase “Do not mention the word ‘hospice’ in front of patient” on the face screen of their medical record. Families refused to have a hospital bed delivered, even when the patient was weak and incontinent and could no longer sit up in bed.  “No, we’re not ready for a hospital bed in our home,” they’d say.

My team taught me the truth. They explained that people most often die the same way they lived – hardships, fears, and blessings accumulated across prior decades settle into their bones, whisper to them at night. Surprisingly often, families with a loved one on hospice are like a hurricane. The patient sits at the center – calm, open, fully present and prepared. Meanwhile, friends and family whirl about, fixating on every meal, every passing of stool, every cellular response to the body’s engines slowing down. Some families are like a shipwreck, where everybody is scared, battered, drenched, untethered to anything of any substance. If allowed to come on deck, sometimes tenderly and sometimes fiercely, the hospice team salvages what is left. Every so often, hospice families are like a moonlit night – the light and heat of life’s burning sun reflected back as a cool, silver glow. Loved ones witness the transition in wonder, enjoying the peace and stillness of the quiet reflection.

My first year in hospice was brutal, each day an exhausting trek up a steep learning curve. I insisted on doing patient care, knowing I would never be a good manager until I understood what my team was actually doing. Months ticked by, I learned about billing and Medicare regulations, I learned about the Comfort Kit – a hospice first aid kit, and I witnessed patients move into the pause of death. After a year, I had days I was proud of, where I offered support and guidance where it was most needed, where I closed my laptop with a sense of accomplishment. Then COVID-19 came along.

COVID-19

Sometime in February, another manager mentioned that we should talk about the coronavirus at our next staff meeting. His wife was a researcher and quickly recognized the significance of the news from China, of the first cases popping up on the west coast. In early March, we started updating a few policies and procedures. By mid-to-late March, work was completely turned upside down. Every workflow, every guideline, every policy was reviewed and rewritten to accommodate the presence of the coronavirus in our community. We launched a system for implementing telehealth. We developed PPE guidelines for staff doing direct patient care, changing and updating them as the CDC learned more about viral transmission. Most staff started working exclusively from home.

Patients and staff fit into three categories: 1) presumed negative, 2) person-under-investigation, or 3) positive. Leadership implemented complex algorithms to track the status of every patient and staff member. We partnered with a local lab to test patients and staff. Many of our patients live in long-term care facilities with their own set of rules. More spreadsheets and algorithms were developed to keep track of each patient at each facility with each set of rules.

Lock Down Creates Loneliness

As news showed body bags pouring out of nursing homes, some facilities went into almost complete lock down, prohibiting any visitors. Many cut off the hospice social worker, chaplain, CNA, and volunteer, allowing in only a carefully screened, fully PPE-protected hospice nurse. Families were severed from prior routines. Used to visiting loved ones weekly (sometimes daily) to read or share a meal, they were told they could come no more. Patients with memory disorders, who couldn’t navigate video or phone visits, were suddenly severed from every molecule of familiarity. Even the med tech delivering their medications appeared masked and gowned, once-familiar eyes now behind a face shield when delivering the plastic cup of pills.

Hospice teams meet every two weeks to discuss each patient, beginning with a remembrance of patients who died. A few weeks after lockdown, my team started talking about the loneliness of facility patients. While hospice patients decline over time, eating less and sleeping more, patients in facilities seemed to be wrapped in a caul of unsettling dullness. A gentleman who always delighted in a sweet, sticky honeybun, left the pastry untouched on the plate, hours into staleness. Another patient whose confused mind had been kept busy with daily group activities and meals, started wandering into other patient rooms, causing mayhem and confusion. My team was in anguish over not being able to help more with the empty sadness of moving towards death alone. A few patients contracted the virus and died quickly while others tested positive and remained asymptomatic, still trapped by the rigid confines of the pandemic rules.

One facility created a small opening, a whisper of grace. Patients on hospice were permitted one or two visitors for small blocks of time. In early June, we had two patients admitted from this facility. A few weeks later, we had two more. Then, we had three referrals in one day. Word got out that enrolling onto hospice was a way to by-pass the lock-down. Our Medical Director took a more thoughtful look at admission requests from this facility – to ensure the patients met the medical criteria for hospice eligibility. One frail, elderly resident, not on hospice, stopped eating when her daughter could no longer visit. She lost 15 pounds in a month, making her eligible for hospice. She enrolled onto service. Once her daughter could visit, she started eating again. COVID-19 restrictions took away her reason to live, hospice gave it back to her. Now, our team will provide care, tend to any symptoms of discomfort. If she recovers to where she is not hospice appropriate, then we will have to discharge her. Maybe by then, COVID-19 will have diminished and loved ones will be allowed to visit again.

I think about the facility that changed its strict visitation rules. Someone recognized that dying alone is an unacceptable travesty, that at end of life, nothing matters more than the physical presence of loved ones. As I look at COVID-19 graphs and trends, I am hopeful for a time when the coronavirus and whirling chaos come to an end, or at least become a manageable lull. For those who enter the mysterious space of life’s waning, I hope that they loosen their grip on the burden of pain and the illusion of control, that they free themselves from the trap of scheduled medications and grueling appointments. I deeply, passionately hope that they glide or tumble or even fall into being present with the ones they love.

–by Sara L. Sousa

Sara, currently performance improvement coordinator for Transitions LifeCare, wrote this post when she was an RN team leader. Sara lives in Durham, NC with her children and enjoys spreading her creative wings when time permits.