Hospice and palliative care nurses, who can be found in many settings, keep the patients and their family units at the center of everything.
For hospice and palliative care nurses, that’s the goal.
As a palliative care nurse at the bedside at an acute care hospital, Maryann Steed, MSN, RN, CHPN, spent much of her time getting to know patients and their families. She’d ask questions, then sit quietly and listen.
“We look into people’s support systems,” she said. “We want to know who they are as a person — their interests, values, religious preferences, spirituality, cultural background,” said Steed, who today works as palliative care education and quality coordinator at Hartford Hospital in Hartford, Conn.
The goal for a nurse is to piece together relevant aspects of a patient’s life and illness and align care for someone who isn’t just another pancreatic cancer case and is very different than the pancreatic cancer patient down the hall, said Steed, who is among the speakers for the Nurse.com Hospice and Palliative Nursing certification test preparation course.
The intricacies of hospice and palliative care
Palliative care focuses on comfort, and patients can receive palliative care at any time in the trajectory of their illness, according to Betsy Murphy, a retired nurse practitioner, certified hospice nurse and speaker for the Nurse.com course.
“Hospice care is a specific type of palliative care,” Murphy said.
Hospice provides comprehensive comfort care and family support, but without making any attempt to cure a patient’s illness. Hospice care is for people with terminal illnesses, who physicians determine have six months or less to live.
Hospice focuses on the team approach, with physicians, nurses, social workers, chaplains, aides and volunteers working together. Under Medicare and many insurances, hospice care is covered at 100%, according to Murphy.
Patients, settings and nurses’ roles
Hospice patients have changed. It used to be that most hospice patients had cancer. Less than 50% of hospice patients now have cancer, according to Murphy.
“More often they have diseases with slower trajectories such as Parkinson’s, dementia, cerebrovascular disease and heart/lung disease,” she said.
While hospice nurses’ roles used to have multiple functions, today they tend to be more specialized, according to Murphy.
“Now nurses can apply for a variety of specialized jobs, such as an admit nurse, a case manager or on-call nurse,” Murphy said.
Nurse practitioners play important roles in hospice care, too. They might provide oversight to nurses that are seeing patients, as well as evaluate patients every few months to determine if they’re still appropriate for hospice care, according to Murphy.
Palliative care is a nursing specialty with many options. Steed said her career has evolved from being at the bedside in the hospital’s inpatient palliative care consult service to more of a coordination and education role.
“Every day is different as a palliative care nurse,” Steed said. “We are a consult service, so we’re responding to requests from primary teams. There’s no place we haven’t been, from all of our intensive care units to med-surg units to the emergency room.
Palliative care can be administered or practiced anywhere with patient care, including acute inpatient and even outpatient clinics, she said.
“There is community-based palliative care, which resides in visiting nurse associations. There are certainly opportunities in nursing facilities, assisted living facilities. Anywhere our patients are is an opportunity to offer a palliative care intervention.”
Pros, cons of hospice and palliative care careers
End-of-life care focuses on intimate relationships between nurses, patients and families, according to Steed.
“When we’re consulting with a patient and family, we start at the beginning and try to establish that relationship,” she said. “Sometimes that can happen in the first couple minutes, and sometimes it takes multiple visits to get on a level where you’re able to really understand where a patient is coming from. It is pretty intense work.”
Nurses who specialize in hospice and palliative care make meaningful differences in patients’ and families’ lives.
“In making sure that the patient is comfortable, the family will also be comfortable,” Murphy said. “You get very good at taking a history, identifying patients who deny their pain yet have nonverbal signs of pain, conferring with their family about what is really going on. You are a true advocate for them, (and you) can prepare families for what comes next and teach them how to provide care.”
Living with dying each day helps nurses appreciate the gift of life, Murphy said.
There’s great satisfaction for nurses when the patient dies comfortably, and the family feels everything was done that needed to be done.
“That’s a feat,” Murphy said. “I worked hospice for 25 years. You see these families in the community later, and they are just so grateful.”
But the job can take a toll.
“Because you work with the dying, you will have multiple losses,” Murphy said. “The first six months on the job may be disorienting. [There’s] so much to know. Any unresolved grief you have may reoccur.”
Many hospice nurses who get through the early part of their career become efficient at identifying grief in themselves and attending to it, whether that means going to a counselor, hospice team members or others, Murphy said.
Nurses who focus on end-of-life care should be good at listening and observing, symptom management and communication. Assessment skills are a must.
End-of-life care nurses need to communicate well to help families understand information on benefits and burdens of treatments. They need to help families understand and prepare for the dying process, even when families are in denial.
“You need to be able to identify where the patient is in the trajectory of disease,” Murphy said. “For example, when they are no longer able to swallow fluids, their prognosis is normally less than a week.”
Sitting for the certification exam in hospice and palliative care requires that nurses have current RN licenses and 500 practice hours in the past year in hospice or palliative nursing, according to Steed.
The prep course and exam cover general patient and family care, communication, symptom management, cultural issues, care of the dying patient and more.
“Palliative care is organized into domains that we all adhere to,” Steed said. “The certification exam does cover content on all of those domains.”
Certified nurses, such as Steed, specialize in palliative care. There also are generalist or primary palliative care nurses who might not seek certification but are trained and experienced in end-of-life care.
Steed said Hartford Hospital encourages all bedside nurses to take End-of-Life Nursing Education Consortium (ELNEC) training.
“In ELNEC, we go through all those domains, giving the generalist nurse some tools they can use to apply these palliative care principles to everyday practice, no matter where they are in their practice setting,” Steed said.