‘Let Patients Lead the Way’: Hospice Veterans’ Advice for New Nurses

Hospice is a unique specialty in health care, and many nurses entering the field are unsure of what to expect. However, they can rely on more experienced nurses for guidance as they begin their professional journeys.

The demand for hospice and palliative care in the United States is projected to outstrip the supply of the clinicians trained to provide it during the next decade. A key barrier to building that workforce is that, with some exceptions, most clinicians receive little to no exposure to those types of care during their training.

Nurses who are new to the hospice space often face a learning curve, according to Briana Hilmer, an Iowa-based statewide clinical director for St. Croix Hospice.

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“If you’re new to hospice, then get comfortable being uncomfortable, because there’s going to be a learning curve. You’re going to be out providing care while you learn,” Hilmer told Hospice News. “So ask questions, ask for help, keep a continuous learning and improvement mindset. Most people don’t expect you to know everything. You just need to know what your resources are. It’s a marathon, not a sprint.”

Hospices nationwide are hungry for new nurses as staffing shortages persist throughout the health care sector. As providers search for new hires, they can benefit from helping new nurses understand what they are getting into.

Brian Hoang, a nurse case manager for California-based By the Bay Health, had a leg up when he joined the company seven months ago. By the Bay Health partners with Dominican University, where Hoang received his nursing degree, to foster more opportunities for clinical education in hospice and palliative care.

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Hoang had a longstanding interest in hospice care. While in nursing school, Hoang completed his clinical rotations at By the Bay Health, affording him a rare level of insight into how hospices operate and what patients and families need. One thing he wished he had known before he started was the ways that socioeconomic status can affect a patient’s health care.

“Because I had those semesters with By the Bay Health, I got a really good idea of what to expect about the job. I don’t think I quite understood how much it really means for certain people to be the one to show up for them,” Hoang told Hospice News. “I kind of believed that all the patients would have good support systems. Just seeing how diverse everyone is, and the means that some people have, I just needed to really let myself be able to meet them where they’re at. I should have had less expectations about what funds and what means they have to take care of themselves.”

In the spirit of meeting patients where they’re at, hospice nurses should “let them lead the way,” according to Hilmer. Nurses may encounter situations in which they don’t agree with patients’ choices or are caring for people with different family dynamics or lifestyles. Nevertheless, all patients deserve quality care at the end of life, she said.

“Let [patients] lead the way. It’s their end of life journey. The nurses that I’ve seen become the most successful long term are kind and caring, empathetic, but they also remain centered or neutral,” Hilmer said. “They meet people right where they’re at, and we don’t place our expectations onto them. Our job is to provide that support, education, coaching and give them their options so that they can make informed decisions that’s best for them.”

To achieve this kind of connection, hospice nurses must actively listen to their patients and get to know their needs, wishes and goals, nurse case manager Janet Winegarner, also from By the Bay Health, told Hospice News.

Winegarner came into the field in 1976, making her one of the longest serving hospice nurses in the country. Her work in end-of-life care began seven years before the Medicare Hospice Benefit was established at the organization that eventually became By the Bay Health, which at the time was licensed as a home health agency.

She was drawn to end-of-life care out of a “curiosity about the human condition,” and also personal experience as a young girl seeing her grandfather suffering as he neared death. After a long illness, he died in a hospital where she wasn’t allowed to visit. Consequently, she said she wanted to go into something that allowed people to do what they wanted at the end of their lives.

Nurses need to understand that patients are not one-size-fits all, according to Winegarner. Each one needs individualized care.

“It really is quite an art to find out what the person wants, as opposed to giving them what you think they need. My advice would be to be as skilled as you can in what you are going to do so that you can feel secure in what you’re able to offer people, but actively listen,” she told Hospice News. “Actively listen to people, which is a harder thing to do than one thinks.”

A key to providing good hospice care is recognizing that the end of life is just as precious as the beginning, said Stacy Castleberry, an admissions nurse for Community Healthcare of Texas in the Dallas-Fort Worth area.

Castleberry worked harder than many to become a hospice nurse. She was homeless for one year before finding a job as an aide in a nursing home. There, she interacted with and felt inspired by the hospice staff who would come in to visit their patients. In time, she worked her way up to a certified nursing assistant, admissions coordinator and eventually a registered nurse. Simultaneously, in the beginning, she also did billing work for a nursing home.

To deal with the stress of caring for the dying, hospice clinicians must keep their sense of humor, according to Castleberry.

“Take hospice for what it is and realize that the end of life is as precious as the beginning of life. Know that death is not a scary thing; it’s as scary as being born,” she said. “But bring humor anytime you possibly can, because sometimes people forget how to laugh.”

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