An Ode to Hospice Nursing

Nurse Lyd, BSN, RN

I’m a hospice nurse. At least, I was a hospice nurse until about a year ago, at which point I finally decided to choose life over death.

Back then my mornings consisted of pounding the New York City pavement. I’d rush to catch the express train at the corner of Lexington Avenue and 59th Street. I worked in downtown Manhattan, and my agency’s building wasn’t far from the New York Stock Exchange.

During my train rides, I’d sit next to people clad in black suits toting leather briefcases. I always suspected they worked in some Wall Street brokerage firm. We’d all get off the train and rush down the same worn cobblestone streets to make it to our desks before 9:00 a.m. I blended in pretty well since I dressed in business casual clothing. I suspect that’s where the similarities ended, though. You see, most offices in downtown Manhattan were busy crunching numbers. Mine was making sure that people lived the last few months of their lives with purpose, dignity, and grace.

You’ll often hear people who work in hospice describe it as a philosophy. I’d agree with that. It’s the belief that people with an end-stage illness should maintain the highest possible quality of life. And that’s what attracted me to hospice in the first place. I’ve always seen life as being full of journeys. And to me, death is one of the most important trips that any of us will ever take. I wanted to make a difference during that process.

By this time I’d been a hospice nurse for nine years. I’d been a hospice case manager, hospice liaison, hospice residence nurse, and a palliative care registered nurse (RN) specialist. At the downtown agency, I was a hospice RN referral coordinator. And somewhere in-between I’d become a certified hospice and palliative nurse too.

I had several responsibilities as a referral coordinator. I reviewed hospice referrals, assessed for eligibility, and set up hospice admission services. It sounds way more simple than it actually was due to the sheer number of referrals we received every day. Not only were we covering the entirety of New York City, but a large part of Long Island too. The other reason my job was tough had to do with the complex situations that came with being a hospice nurse.

You see, the role of a hospice nurse contains several jobs in one—sort of like those Russian nesting doll sets. Nurses play a vital part in a patient’s hospice experience. The hospice care team is an interdisciplinary team. But the nurse is the care team member that patients and families see and communicate with most. Thus, the hospice RN must wear several hats to deal with highly charged situations. Caregiver, teacher, consultant, confidant, advocate, you name it. A hospice nurse seems to do it all. And to be honest, I’ve even found myself in the role of philosopher once or twice. Dealing with death often brings up some heavy psychological and spiritual questions.

You know Elisabeth Kubler Ross’ model of the five stages of grief? Well, I’ve walked patients through every single one of those stages. I’ve been with them from the point of diagnosis to their last breath. I’ve been with them through tears of rage, denial, and during that final point of acceptance. Looking back at it now, I cherish every moment of it.

I’d gotten pretty darn good at my job. So good, in fact, that I got assigned to pediatric referrals. Adult patients are one thing, but pediatric hospice patients are a different matter. They bring higher complexity, blurrier guidelines, more emotions, and tenacious care team members. It required a certain amount of delicacy, and I handled my pediatric patients with kid gloves. I started to notice that the stress of the job was taking more of a toll on me. The constant focus on death wasn’t sitting well with me anymore. Plus, it’s never easy to deal with having to pronounce a sick child as being “hospice appropriate.”

There was one pediatric case that was particularly heartbreaking. A source referred a child to us much later than they should have. It involved a delayed referral, an unclear care plan, and complicated family dynamics. This all resulted in the child dying right before the assigned admission RN was able to arrive. The conclusion was unsettling because it happened despite my team’s best efforts. After everyone's hard work, this was a devastating result to face.

Unfortunately, hospice is still an underutilized service. This is due to prejudices against the word “hospice" and pre-conceived notions about it. And believe it or not, this applies to the prejudices of other healthcare workers too. Death before admission occurred way more often than I wanted to admit. Still, when it happened to this sweet child, it seemed to be that much more distressing for me. And I knew that after almost ten years of being a hospice nurse, I’d reached my breaking point.

I went home late that evening. I'd finally left the office after sending condolences and finishing hours of charting. It again occurred to me that I’d seen enough death to last a lifetime. I remember heading back uptown on the train, once more sitting next to those people in shiny black suits. I found myself wondering what it would be like to get up every morning and not have to think about facing death. And I knew that was something that I finally wanted to choose for myself.

I ended up going on a year-long sabbatical. I immersed myself in personal development programs, spirituality, new friends, travel, and hobbies. I’m currently embarking on a career as a freelance healthcare writer. Healthcare writing is the perfect balance between the right and left sides of my brain. It pleases both the nurse and the writer in me. And best of all, I feel completely alive when I do it. The way I used to feel when I was a hospice nurse.

If I ever decide to go back to into the clinical arena, I’d choose the specialty of obstetrics. I'd spent a year in postpartum nursing and enjoyed it so much. I left after choosing to switch to hospice. It hasn't escaped me that the two other areas of nursing that interest me most involve the two bookends of life. Birth and death.

My year away from hospice made me realize that death taught me more about life than life itself ever could. I’ve learned to cherish every moment, to understand that every breath is a miracle. I try to honor every warm hand, every mischievous eye, and every tear that I come across. And I no longer see gray hairs as something to fear. Instead, I see them as badges of honor bestowed on those lucky enough to have them. Best of all, I know I succeeded many times over in making the difference that I set out to make.

Nurses everywhere provide an invaluable service to this world. They balance empathy and compassion with complex skills that help transform lives. They deserve all the accolades they receive and then some. And hospice nurses, in particular, are a rare breed that deserves the highest of praise. So often they're the rock of support that patients and families can stand on during the most trying times. I love my fellow nurses, and I want to take this moment to salute them all.

And though I've moved on to more lively areas of nursing, I suspect there’s a part of me that will always be a hospice nurse.

An Ode to Hospice Nursing

About Nurse Lyd, BSN, RN

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