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.
Diversity directors appear to be a small but dedicated niche among nursing schools that are making an effort to better include and serve people of varying racial, ethnic and cultural backgrounds. While campus-wide diversity and multicultural affairs offices are fairly common at major U.S. universities, it’s rarer for nursing schools—or other individual colleges and professional schools, for that matter—to have a diversity department of their own.
“There have been pockets, but it hasn’t been done consistently, and there hasn’t been a big vision ,” says Mary Lou de Leon Siantz, PhD, RN, FAAN, assistant dean for diversity and cultural affairs at the University of Pennsylvania School of Nursing in Philadelphia.
There’s at least one reason, however, why the idea of establishing an office dedicated to enhancing the recruitment, retention and teaching of a diverse population may soon catch on at more nursing schools. “Now more than ever, because of the changing demographics of the United States, [a greater focus on multiculturalism in nursing education and practice] is very badly needed,” notes Siantz, who is a past president of the National Association of Hispanic Nurses.
By having their own formalized diversity departments and appointing diversity directors, nursing schools are in a position not only to create a more inclusive profession but also to prepare future nurses to meet the health care needs of an increasingly multicultural patient population. But what exactly do diversity directors do? And is this an emerging career opportunity that more minority nurses should consider pursuing?
The Mission and the Vision
One of the first tasks that Lillian Stokes, PhD, RN, FAAN, took on when she took the helm of the Office of Diversity and Enrichment at Indiana University School of Nursing in Indianapolis was to help fashion a diversity mission statement. Today, she sees that message displayed on a bronze plaque each time she walks through the front entrance of the school.
“Our overall vision is to try to promote an environment that values respect and reflects a global view of diversity,” says Stokes, who is also an associate professor at Indiana and the national president of Chi Eta Phi, a sorority for minority nurses.
Clarifying the vision of a diversity department usually starts with determining what diversity means. “We define diversity here as ‘holding multiple perspectives without judgment,’” says G. Rumay Alexander, EdD, RN, director of the Office of Multicultural Affairs and associate clinical professor at the University of North Carolina-Chapel Hill School of Nursing.
Nursing school diversity directors say they want to expand the definition of diversity beyond the familiar parameters of race, ethnicity and gender. “One of the things I always talk to our first-year students about is the need to think about diversity in broader terms, not just [in terms of] ethnicity,” says Jana Lauderdale, PhD, RN, assistant dean for cultural diversity at Vanderbilt University School of Nursing in Nashville. “That’s something I kind of preach all the way through the program.”
The term can apply to any subculture or underrepresented group, she explains–for example, homeless persons, people with disabilities or people with chronic illnesses.
In Alexander’s view, achieving diversity means more than simply admitting more students from diverse backgrounds. These students need to find a supportive environment that will help them succeed.
“If you’re inviting people into an environment that for whatever reasons does not feel welcoming to them, or treats some [members] of its community in an inequitable way, then you may be bringing in many people through the door, and your numbers may be going up in terms of admissions,” she says. “But if these students are not successful in matriculating through the program and graduating, then it’s kind of like coming in the front door of a house and going out the back door.”
At Penn, Siantz says a key element of the school’s vision is that the commitment to diversity must be top-down. “That means that at the top there is recognition of the need to diversify the administration and the faculty, as well as the student body, to better promote the mission of the school,” she explains. “Diversity is the number one strategic goal of the School of Nursing. Globalization is the second.”
The Scope of the Job
A common thread in the job descriptions of nursing school diversity directors is a major focus on assisting students. Some are also involved in faculty programs and curriculum development.
At Indiana University School of Nursing, Stokes’ Office of Diversity and Enrichment is part of the Center for Academic Affairs. The enrichment part of her job title is broad in scope.
“This position calls for working with all students, not just minority students or underrepresented students,” she says. “Although the faculty and my office are committed to supporting underrepresented students as much as possible, I probably see just as many or more majority students.”
Diversity-related programs at Indiana’s nursing school include “empowerment sessions” to aid students with test taking, stress management, time management, organization and other skills; peer-led tutorial reviews of specific classroom subjects; a Diversity Forum series featuring presentations by faculty members and local and national leaders; and workshops for faculty on teaching students from diverse cultures.
Recruitment of minority and international students is another aspect of Stokes’ job, although she says it’s not her primary role. “We have a marketing and recruitment person [who is in charge of that],” she explains. “I work very closely with that office, and also with our graduate offices.”
Stokes and some of the senior nurse researchers on the faculty have established a program called Connections that targets students who might be good candidates for the PhD program in nursing. “We meet with students—it may be one student or ten—who express an interest or who I see have potential,” she says. “We take them through the admissions process [and] get them to start thinking about their research area, so we can think about a faculty member who might work with them.”
Two students–one African American and one Nigerian–who participated in Connections have since begun their doctoral studies in the School of Nursing. “They are doing very well,” Stokes reports.
She is also a founding member of the nursing school’s Minority Advisory Council, now called the Diversity and Enrichment Council. The group includes faculty, students, staff and community partners, such as practicing nurses, politicians and leaders of local organizations.
Lauderdale, who is president-elect of the Transcultural Nursing Society, says the range of her job at Vanderbilt “seems to be a moving target. Almost every day, there seems to be another layer added to it, which tells you something about the scope of the need for a position of this type.”
Lauderdale’s initial focus was on ensuring a “cultural diversity content thread” throughout the curriculum, “so that by the time students graduate, they feel comfortable working with patients from different cultures and are able to provide culturally competent care.”
Today, in its expanded role, the cultural diversity office at the School of Nursing offers an Academic Enrichment Program in which a group of students meet about once a month for brown bag lunch discussions on a wide range of topics–from critical thinking skills and time management to working with culturally diverse patients. Lauderdale also coordinates a Pre-Nursing Society for freshmen and sophomores who are considering nursing as a career.
For faculty, the nursing school’s summer institute on teaching strategies includes discussions of how to celebrate cultural diversity in the classroom. In addition, Lauderdale works closely with the faculty member who directs the cultural diversity program in the School of Medicine.
Diversity Is a Full-Time Job
When Alexander came aboard at UNC, she turned what had previously been a part-time role into a full-time focus. “Prior to my [being hired], the issues relating to diversity and inclusion were part of an assignment [given to] someone else on the faculty,” she explains. For her predecessors, this function took up a relatively small percentage of their responsibilities.
“I came into the interview with a clear understanding, because of [my] past work experience in diversity, that if it wasn’t getting the full attention of someone and it was kind of the job of ‘everybody,’ it was not going to get the traction that it needed to get,” Alexander says.
Specific diversity enhancement strategies at her school include a continuing education requirement for faculty and staff that is linked to their performance evaluations and compensation; the Kindred Spirits Award for Excellence in Multicultural Scholarship, given each year at commencement to a student who exemplifies respect for diversity; and an Ethnic Minority Visiting Scholars Program.
All of these elements, Alexander says, make her days on the job “unpredictable and lots of fun.”
At Penn, Siantz works closely with the nursing school’s Master’s Curriculum Committee and Diversity Committee. She also partners with other groups within the school and throughout the campus that are interested in promoting diversity.
For example, Siantz has partnered with the university’s medical school to develop a Leadership Education and Policy Development program to promote leadership skills among nurses and physicians of color. Supported by the university vice provost’s Office for Diversity, this program also teaches them how to use their research and clinical practice to help shape public health policies to eliminate disparities.
Another key strategy for Siantz has been to become a faculty member of minority nursing student organizations on campus, holding leadership retreats with the groups’ outgoing and incoming boards.
Challenges and Rewards
All of the nursing school diversity directors interviewed for this article admit that the work they do has its share of challenges. Yet they also find it extremely rewarding, especially when they see that their efforts to promote diversity and inclusiveness are producing measurable results and making a real difference at their institutions.
Siantz says one of the biggest challenges in diversifying the nursing profession is that nursing schools need to extend their outreach beyond the college campus.
“We need to partner with the [elementary and secondary] school systems, because despite the fact that the numbers [of people of color] are growing, they’re not going to college,” she emphasizes. “That’s something that the schools in individual communities need to wrestle with in terms of how they’re going to change that picture over time.”
Stokes sums up the main barrier multicultural students face in advancing their nursing studies with one word: “Money.” For example, she says, “I’ve been in communication [recently] with a young lady who graduated from another university here in [Indianapolis]. She has attended several of [our] Connections programs, but right now it’s [the lack of] money that’s keeping her away [from pursuing doctoral studies here].”
On the plus side, the school has been successful in obtaining a National Institutes of Health grant that provides some scholarships and stipends for qualified nursing students. About 36 nursing students at Indiana have participated in the university-wide Summer Research Opportunities Program, and several have gone on to pursue graduate studies. “I think we have had more students in the program than any other unit [of the university],” Stokes comments.
Another success story for Stokes has been seeing the nursing school’s learning environment change for the better when it comes to faculty interaction with students from diverse backgrounds. “They just have a better understanding of students who are different from them,” she says.
At UNC, one of Alexander’s proudest accomplishments has been to have the School of Nursing become a national role model for promoting and achieving diversity.
“We are called on frequently to consult with other schools about how to walk the talk of inclusion,” she says.
Is This a Career for You?
Because nursing school diversity directors represent a newly emerging specialty, there is little data available about their current employment statistics, salary levels or the career outlook for the field. However, the U.S. Bureau of Labor Statistics reports that the mean annual wage for all education administrators in colleges, universities and professional schools was $86,480 in 2006.
What kind of background and experience would be prerequisites for this career? The BLS notes that top student affairs positions usually require an EdD or PhD, along with good interpersonal, leadership and decision-making skills.
The directors interviewed for this article all have credentials that fit that profile. Alexander has an MSN from Vanderbilt University, training as a family nurse practitioner and an EdD in educational administration and supervision from Tennessee State University. She also has work experience in both hospital and corporate settings. Just prior to arriving at UNC, she was the head of her own diversity consulting business in Nashville.
Lauderdale has an MSN with a major in maternal-child health from Texas Women’s University and a PhD in transcultural nursing from the University of Utah.
Stokes has an MSN from Indiana University School of Nursing and a PhD in instructional psychology with a minor in gerontology from Indiana University-Bloomington. She says her instructional psychology background, with its focus on teaching behaviors, is an asset in her current job.
Siantz has a master’s in child psychiatric nursing and community mental health from UCLA and a PhD in human development from the University of Maryland. Before accepting her position at the University of Pennsylvania, she was an associate dean and director of the Center for Excellence in Hispanic Health at Georgetown University.
Siantz believes the successful nursing school diversity director will be someone who is a visionary leader with excellent communication skills and strong relationship-building skills. “The person who is recruited to this position must be a senior-level person who not only walks the talk but also understands, and has a vision for, how to pull it forward,” she says.
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