Sometimes the most compassionate care a nurse can give to a dying patient is to quiet the room. Cheryl Thaxton, RN, MN, CPNP, FNP-BC, CH-PPN, a nurse practitioner on the supportive and palliative care team at the Baylor Regional Medical Center at Grapevine, says when a patient is near death, care providers need to be attentive to personal desires and family traditions regarding those final moments.
“Sometimes death is such a new experience to families that they don’t know what to expect or what to ask for, so we have to dig deeper into what their beliefs are,” Thaxton explains. “Some people want privacy in the moment of death. They don’t want someone coming into the room to change the garbage can or bring a lunch tray. They see this moment as sacred, and they want to have prayer or peace without interruptions.”
Among Asian Pacific Islanders (APIs), choices about end-of-life care often are made by the family as a whole, or by a designated decision maker within the family, says Merle Kataoka-Yahiro, DrPH, MS, APRN, an associate professor of nursing at the University of Hawaii at Manoa.
“There needs to be improved crosscultural intervention—using culturally appropriate and sensitive communication and behavioral change approaches—for health professionals as they interact and engage with API patients and families on topics related to palliative, hospice, and end-of-life care,” says Kataoka-Yahiro.
The Institute of Medicine (IOM) counts attention to patients’ cultural, social, religious, and spiritual needs as core components of quality end-of-life care, along with management of pain and symptoms and support for family members. This holistic view of hospice care lends itself to a collaborative, team approach that’s guided by respect for each patient’s identity and autonomy.
The State of Hospice Care
In 2012, 1.5 million to 1.6 million patients received hospice services, according to the most recent report from the National Hospice and Palliative Care Organization (NHPCO). The number had steadily increased since 2008, when it stood at 1.2 million. About 66% of hospice patients received care where they lived, whether that was a private residence, nursing home, or residential facility. Roughly 27% were in a hospice inpatient facility, and nearly 7% were in an acute care hospital. The median length of hospice service in 2012 was 18.7 days, while the average was 71.8 days.
In 2012, 57.4% of hospices were freestanding, independent agencies; 20.5% were part of a hospital system; 16.9% were part of a home health agency; and 5.5% were part of a nursing home, according to NHPCO.
The NHPCO report found that 56.4% of hospice patients were female, 43.6% were male. More than 6% were of Hispanic or Latino origin (with Hispanic origin reported separately from race). Eighty-one and a half percent were White/Caucasian; 8.6% Black/African American; 2.8% Asian, Hawaiian, or Other Pacific Islander; 0.3% American Indian or Alaskan Native.
While cancer patients made up the largest percentage of US admissions when hospice care began in the 1970s, today cancer diagnoses make up only about 37% of hospice admissions. Unspecified disabilities accounted for 14% of admissions in the NHPCO survey. Dementia was 12.8%; heart disease, 11.2%; and lung disease, 8.2%.
These changes are having an impact on access to hospice care, says Brian Guthrie, MD, associate medical director at Burke Hospice & Palliative Care in Burke County, North Carolina. The standard of eligibility for hospice care benefits from Medicare is that the patient must have consulted two doctors who agree that life expectancy is six months or less if the illness progresses normally.
“That’s easier to do with cancer than it is with heart or lung disease, and it’s especially difficult to do with people with advancing dementia,” says Guthrie, who is board certified in hospice and palliative medicine. “There are admission guidelines with as many numbers and algorithms as we can figure out as to who might die in six months, but it’s a bigger challenge all the time.”
Guthrie’s wife, Birgit Lisanti, RN, MSN, MBA, is CEO of Burke Hospice. With an average daily census of about 120, the facility employs another physician who works full-time, while Guthrie fills in when needed. Guthrie was formerly a hospice physician at Tidewell Hospice in Sarasota, Florida, which had an average daily census of 1,200.
“The tremendous growth of hospice nationally has been a challenge for [the Centers for Medicare and Medicaid Services] because they had not planned that it would be this big an industry—and that they would be financially responsible for so much care,” Guthrie says. “They’ve had to be vigilant—or you could say heavy-handed if you want—in trying to ensure that we don’t treat people for years and years on hospice when they are continuing to survive.”
Jennifer Gentry, RN, MSN, ANP-BC, ACHPN, FPCN, president of the Hospice and Palliative Nurses Association, says one of the biggest changes in hospice care is that it is now viewed as part of a continuum that begins with earlier stages of palliative care. She notes that a number of hospice agencies have added nonhospice palliative care to their services.
“The unfortunate thing is that sometimes we don’t recognize the benefits of hospice soon enough, and patients are not referred for hospice care until days before they die,” says Gentry, who is a clinical associate at the Duke University School of Nursing. “They don’t get the full benefit of what hospice has to offer, not only for the patient but for their family unit.”
Both palliative and hospice care are most effective when they take into consideration the patient’s physical, emotional, social, and spiritual needs, says Maureen Leahy, RN, BSN, MHA, CHPN, clinical nurse manager in the Wiener Family Palliative Care Unit at The Mount Sinai Hospital in New York City.
Staff for the 13-bed unit includes nurses, physicians, geriatric and palliative care fellows, a nurse practitioner, and art, music, and pet therapists. There are even doulas that Leahy calls “midwives to the soul.” Rather than helping women give birth, these volunteer doulas are trained to help patients and their families transition to the end of life.
“They may serve coffee,” Leahy says. “They may sit a vigil with a dying patient. They may spend time with grandchildren of the patient doing painting and drawing.”
Guthrie notes that Medicare-approved, independent hospice agencies are required to have a multidisciplinary staff that meets at least every two weeks to discuss each patient.
“The social workers, chaplains, aides, nurses, and physician all meet together and talk about the plan of care, challenges, what we expect to see next, and they try and work together to ensure that all of the patient’s needs—medical, emotional, spiritual, and social—are met,” Guthrie says. “The focus is on the family as well.”
Listening is one of the most important services end-of-life caregivers provide, in Leahy’s view, but time-pressured health care professionals don’t always do it well.
“We sometimes dictate to them what they need in terms of their health care, their medical treatment,” says Leahy. “Patients lose their autonomy very quickly when they become sick. . . . They often lose the sense of their ability to decide for themselves what is right or good.”
As professionals who “lay hands on people,” as Leahy says, nurses are in a unique position to hear the needs and wants of dying patients.
“The ethical constructs that drive our care are things like autonomy and justice and beneficence, our duty to do good and . . . to do no harm,” says Leahy. “Nurses often can identify early on when our well-intended treatment and care . . . become harmful, when people stop living and begin dying.”
Thaxton says nurses and other care providers at Baylor Regional Medical Center help patients and their families with advance care planning. They discuss choices, such as whether the patient wishes to have intertracheal or long-term feeding tubes.
“We can offer a lot of things, because we know a lot of things and we have the technology,” says Thaxton. “But are those really beneficial, and are those things what the patient and family really want?”
Pam Malloy, project director and co-investigator for the End-of-Life Nursing Education Consortium (ELNEC), says patients have become more knowledgeable about the options they have.
“They’ve heard lots of horror stories about people not dying well,” Malloy says. “It gets them thinking: I don’t want to die in the ICU with tubes in me. . . . They realize that if they don’t make their own decisions about their end-of-life care, someone else will.”
Regulatory change—especially the requirement to provide measurable evidence of quality—is one of the biggest issues in hospice care today, says Danielle Pierotti, RN, MSN, AOCN, CHPN, director of clinical practice and chief nurse at HCI Care Services, an independent hospice agency in West Des Moines, Iowa.
“Hospice is probably the last frontier for the cost-quality revolution of health care,” Pierotti says, noting that hospitals, nursing homes, home health agencies, and physicians’ offices faced the issue years earlier.
She says hospice agencies are taking “baby steps” to learn how to collect data that will help them demonstrate their value in ways that can be measured. They are learning a lot from the experience of quality experts in hospital settings.
“There are a lot of great conversations happening at the national level to help decide what those indicators are and help to put our arms around what it means to provide good end-of-life care,” Pierotti says.
Training End-of-Life Caregivers
“Dying in America,” a new study from the IOM released in September 2014, lauds the improvements over the last few decades in the education of health professionals providing end-of-life care. Unfortunately, the IOM committee also found that “recent knowledge gains have not necessarily translated to improved patient care,” and that the small number of hospice and palliative care specialists in the field means patients are often treated by clinicians who lack sufficient training and expertise.
“The committee recommends that educational institutions, professional societies, accrediting organizations, certifying bodies, health care delivery organizations, and medical centers take measures to both increase the number of palliative care specialists and expand the knowledge base for all clinicians,” the report states.
Since 2000, ELNEC has been developing curricula for nursing students, nursing faculty, practicing nurses, and nursing researchers, says Malloy. With a reach that extends to 84 countries, the consortium has taught more than 19,000 professionals over the last 14 years in its train-the-trainer courses.
“Our goal is to promote this education,” Malloy says. “We will never change practices until people are educated.”
Patricia Ropis, MSN, RN, teaches the “Dying with Dignity” course at the College of Nursing at Seton Hall University in South Orange, New Jersey. The two-hour class focuses on a different topic each week—for example, holistic health care; religion, culture, and ritual; grief theory; comforting the dying; pain and symptom management; and communication. That last topic is one Ropis believes is especially important for hospice nurses.
“In caring for the dying, communication is our tool,” Ropis says. “People often don’t realize when they take care of the dying that the support we give to other people is a nursing intervention. You need to be very skilled in communication to take care of this population.”
HCI’s continuing education program, the Hospice of Central Iowa Institute, presents educational conferences to nurses, home health and hospice aides, and other health care professionals.
“Educating the community—meaning everybody, including health care providers . . . lay people, patients, families, and neighbors—about what end of life is and what it means and how hospice can be supportive in that period of time has always been a central tenet of what we do,” explains Pierotti.
Hospice and palliative care providers have entered the specialty via many different paths, but they seem to share the view that what they do is not just a career but a calling. Years ago, when Guthrie was a physician in an emergency department in his native Saskatchewan, Canada, he became involved in treating the husband of the ER director for kidney cancer. Guthrie began working with the hospital pharmacist to try to control the patient’s tremendous pain.
“Very quickly, I realized the pharmacist had a set of knowledge I didn’t even know about,” Guthrie recalls. “He started telling me that he was from Montreal and that he’d studied under Cicely Saunders, the very famous British nurse/doctor/social worker who started hospice and palliative care in Britain. We worked together and did what we could to make this guy comfortable. I thought, ‘If I ever get a chance, I’m going to do this full-time. This is the best medicine I’ve ever seen.’”
Pierotti began her career as an oncology nurse, a specialty she notes is often intertwined with hospice care.
“As a frontline nurse, what impressed me over and over again was how much impact I could have for people at the end of their life,” says Pierotti. “I think that was a surprise to me at the beginning, and it’s continuously a surprise to patients and families.”
Thaxton became a palliative care nurse about five years ago, after 23 years in ICU nursing. She notes that nurses who are new to the death experience need special attention to ensure they are emotionally prepared.
“Some people think: Am I still a good nurse if this patient is going to die on my watch?” Thaxton says. “The first death experience for a nurse can be really life-changing. We get into medicine and nursing because we want to save people. But helping them to die peacefully and free of pain, respecting their dignity, and making sure their wishes are honored, is a noble thing to do.”
Sonya Stinson is a freelance writer based in New Orleans.