Patients often are referred to hospice programs shortly before their deaths. Nurses who work in palliative care and hospice programs are trying to change that timeline so patients and families can benefit from their services earlier in the process.
However, getting that message across can mean battling a physician who sees hospice as “giving up” or stereotypes that keep families from hearing anything about hospice.
The problem is prevalent, particularly in hospital-dense New York and New Jersey where a disproportionate amount of money is spent on acute care at the end of life.
“The benefit [of hospice] is at least six months, and no one is using it like that,” said Pat Murphy, RN, PhD, FAAN, advanced practice nurse for ethics and bereavement at University of Medicine and Dentistry of New Jersey-University Hospital in Newark.
Often healthcare professionals and families don’t understand what hospice offers or even whether the term refers to a place or a form of treatment.
When you describe the services, instead of using the word hospice, people want to hear more, said Susanne Walther, RN, APN for palliative care at University Hospital.
“When I talk to families and talk to them about another way of getting them care [such as] having someone come to the home, a nurse, a social worker, a chaplain, a physician, people say, ‘Wow. That sounds great,'” Walther said. “Then I say, ‘That’s what hospice is.'”
Earlier referrals ease anxiety
Ellen Coughlin, RN, CHPN, MA, MPA, vice president of patient and family services at Barnabas Health Hospice and Palliative Care Center, said satisfaction surveys at the center turned up a disturbing trend.
“Over the last five years or so, families [have been asking] why their loved one wasn’t referred earlier,” Coughlin said. “It’s interesting that [families] often report that they finally got a [recommendation for hospice] not from a healthcare professional, but often from friends, family or neighbors.”
Coughlin, who has been working with hospice for 27 years, said she has seen a shift over time from the caregivers’ side. When she started, Coughlin said more caregivers were able to be home, and hospice was more of an intentional decision.
“What I’m seeing over time is now that patients can’t be in the hospital as long as they used to be, families are more in need of help because they are less prepared and it’s not always a decision they’re making consciously,” Coughlin said.Ellen Coughlin, RN
But bringing up the “H” word can be difficult.
Nurses also may feel caught in a bind, Coughlin said. They are trained to be advocates for patient care, yet the care may be split between a variety of specialists because one person isn’t “quarterbacking” the big picture, she said.
To help make that easier, Barnabas started a system of nurse-driven triggers, where if a patient with advanced disease presented with key indicators, such as repeat admissions, weight loss, functional decline, etc., a nurse could ask anonymously for a chart review by a hospice or palliative care person, who then could talk with the physician.
“That way a person who is a little more objective takes a look at the chart,” she said.
The program has been in place five months, and so far 45% of patients whose charts were reviewed based on triggers have been converted to hospice or palliative care, she said.
“That tells us the nurses are pretty good about identifying patients,” Coughlin said. “Some of the refusals may not be that the referrals weren’t appropriate, but that the family wasn’t ready, or whatever.”
Walther said one of the greatest misconceptions, especially by physicians, is once patients enter hospice, treatment ends.
“If down the road you’re feeling better, you’ll be re-evaluated and you can go back to treatment at a later date. You can look at clinical trials,” she said. “Just because you’re going on hospice doesn’t mean you can’t come back to the hospital for further treatment.”
Murphy added hospice is not giving up. “In some ways, you’re getting more care. I call it aggressive comfort treatment,” she said.
Pediatric challengesMarilyn Lugo, RN
When a patient who needs palliative care is a child, the barriers to getting an early start are sometimes different, said Marilyn Lugo, ACRN, MSN, CNS, a pediatric palliative care nurse at Visiting Nurse Service of New York.
For one thing, the prognosis is not as exact with children, and the hospice model for people expected to have six months to live doesn’t work with children, she said.
“When you can’t give a parent an exact prognosis, it may be difficult for them to say they want palliative care for their child because the parent’s perception is that palliative means no more curative,” Lugo said, “when, in fact, the two should be working together jointly.”
The ideal time to discuss palliative care is not at the end of life, but at diagnosis, she said, when parents need the most support. “When you are sitting next to a provider who says ‘your child has cancer,’ you don’t hear anything else,” Lugo said. “That’s when they need all the support services that we can provide.”
Nurses also don’t receive enough training in treating a child who needs palliative care, she said.
That’s where End-of-Life Nursing Education Consortium, entering its 11th year, comes in, she said. In October, Lugo started training others in the ELNEC curriculum, which covers areas such as pain medication for children because delivering a fatal dose is a greater risk than for an adult.
Individualized hospiceKathy Trombley, RN
Kathy Trombley, RN, BS, CHPN, is the nurse manager in the palliative care unit at North Shore University Hospital in Manhasset, N.Y. The unit has the capability of transitioning up to six patients for inpatient hospice.
When the unit opened four years ago, North Shore had the only unit that accepted ventilated patients, which required a different set of competencies for nurses. The unit can provide acute care if it is appropriate.
She said North Shore works hard to individualize hospice for patients — even letting them bring in their pets. Nurses are educated in reflexology, and pet therapy is available.
“My nurses have become experts in bereavement counseling. We treat the whole family,” Trombley said. “We once had a young gentleman here and we arranged a Valentine’s dinner with his wife in the teaching classroom. It’s a very special place to work.”
But getting physicians to talk with patients about palliative care has hurdles. “The docs outside my unit don’t really have the tools to have end-of-life discussions” because they are uncomfortable with the concept or don’t understand it, Trombley said.
Interdisciplinary rounds have helped educate staff about hospice, she said. Residents now round in palliative care daily with nurses, and the team talks with patients and families.
Medicare cutsDon Pendley
Getting the message out about hospice is especially key as looming Medicare cuts threaten to trim programs.
Don Pendley, MA, CAE, APR, president of the New Jersey Hospice and Palliative Care Organization, said on top of recent cuts in Medicare spending — with the reduction of the reimbursement rate and reduction of the Budget Neutrality Adjustment Factor (which protected hospice programs from some of the wide swings in hospital costs) — more may come, depending on how the supercommittee decides to meet the debt reduction agreement.
“If they don’t find places to cut before Thanksgiving, they may turn to Medicare and the defense budget and make automatic cuts,” Pendley said. “What’s most frustrating is that no one in Washington seems to be looking at the cost savings that hospice provides. Anytime you can compare $200 a day in hospice services to an $8,000-a-day acute care stay — you’re getting more appropriate patient care at [about] 2% of the cost. That ought to be a no-brainer.”
With less funding, hospices might have to make fewer visits and might be tempted not to admit patients with costly medication needs, he said.
According to 2010 statistics from the Centers for Medicare and Medicaid Services, the average length of stay in a Medicare-certified hospice in New York is 55 days. In New Jersey, patients stay for an average of 64 days.
“Hospices operate on a very low margin — I’m talking 2% to 6%,” Pendley said. “Between the cuts and the increasing costs of medication, they’re really between a rock and a hard place.”