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.
There are people who are not satisfied with the status quo in their careers and instead help shape their vocations. They are the leaders in their professions. Nurses are no different. There are many movers and shakers within the nursing ranks, and Minority Nurse selected five such individuals to highlight.
Maria Gomez, RN, MPH
Maria Gomez, the founder, president, and CEO of Mary’s Center, is no stranger to the spotlight. She has won a plethora of awards, perhaps none bigger than the nation’s second-highest civilian honor. Gomez was selected by the White House as one of 18 recipients of the 2012 Presidential Citizens Medal. “It was a great honor coming from a president like Barack Obama because I think it is very clear that his priorities are very much aligned with our priorities at the health center,” says Gomez.
Gomez was also quick to point out the role the center’s staff had in her receiving the award. “I received the medal for the collective and extraordinary work of my colleagues and our partners in the community,” she explains. “My role is to make sure that all the administrative pieces are in place and that there are sufficient funds to meet our goals. The issues that the president is diligently working on, such as health reform, early childhood education, economic equity, and immigration reform, are issues that we are dealing with day in and day out with the community that we serve.”
Gomez, along with a group of nurses and social workers, founded Mary’s Center in 1988 on an initial budget of $250,000. It served 200 participants a year at its inception. “There were so many community needs around the indigent population that were not being met,” she says. The vast majority of patients served was Hispanic women, and at that time, a small cohort of African women, according to Gomez.
Today, the center has an annual budget of $40 million and is projected to serve over 70,000 participants at six sites throughout the District of Columbia and Maryland in 2013. The Hispanic population still makes up about 75% of whom the center serves with an ever increasing number of African Americans. “But depending on the areas we are in, we serve individuals from over 110 countries throughout the world who have become uninsured, either because they lost their jobs or because they just cannot make ends meet,” says Gomez.
The center provides comprehensive primary care, intensive social services, and—in partnership with Briya Public Charter School—it provides family literacy classes and job skills with the goal of keeping families healthy, supported in their communities, and moving up the economic ladder.
“My education at Georgetown School of Nursing made me very conscious of the interconnectedness of health and the environment in which people live,” explains Gomez. “In order to keep people healthy, individuals need to be supported in the basic necessities of life, such as housing, food, and employment, before they can tackle their diabetes. This model of comprehensive care is very hard to establish within a health department where I was working, so that was our motivational factor to start Mary’s Center.”
Edward Halloran, RN, FAAN, PhD
Although he didn’t start out to be a trailblazer, Edward Halloran has traveled the road less taken. In a predominately women’s field, his career spans back almost 50 years and has seen him take on many leadership roles—a result he says goes back to a book he read at the beginning of his career.
“At that time, it was much more common for every other nurse to just want to be a nurse and just do your thing. But this book said if you are not visible no one will ever know that there is such a thing, so that is what started my interest in being more visible,” says Halloran. “It is not so much that I had any personal interest in it as much as if there were ever going to be more men in the field, it had to be because the ones that were there were more visible. That prompted my involvement over the years in the American Assembly for Men in Nursing [AAMN].”
The 2012 recipient of the AAMN’s Lee Cohen award, Halloran was selected to receive the award by the Board of Directors of AAMN to recognize his significant contributions to the organization. “I was kind of surprised by that,” says Halloran. “I was very pleased [and] delighted that the people that I have been working with for the last three or four years acknowledged that.”
Halloran is a long-time member of the American Nurses Association and the American Academy of Nursing as well as the former vice president of the National League for Nursing and past president of the AAMN. He is currently finishing his second term as vice president of the latter organization.
Halloran spent a significant amount of time in hospital management. Among his management positions, he was the coordinator of special studies and projects at the Veterans Administration Hospital in Hines, Illinois; the director of nursing at the Gottlieb Memorial Hospital in Melrose Park, Illinois; and the senior vice president, director of nursing and corporate nurse executive at the University Hospitals in Cleveland, Ohio.
“I thought there might be better opportunities to do more in a public way by writing about things or researching them then on a day-to-day basis performing them,” he says about his decision to move into academia. “I had been there and done that so the academic world offered opportunities to do something different.”
Since 1989, Halloran has been an associate professor of nursing at the University of North Carolina and UNC Hospitals at Chapel Hill. During this time, he taught two years in Hong Kong. From 1991-1992, he was a senior clinical nurse on the research unit at UNC Hospitals. He practiced involved care of patients who volunteered for experimental treatment for chronic illnesses, including cancer, HIV, end-stage renal disease, heart disease, sickle cell anemia, diabetes, and other diseases.
Halloran says the highlights of his career include changing the patient care environment. “That gave me the biggest satisfaction,” he adds. “We improved care, and this is very difficult to do from the inside-out of a major teaching hospital or even a suburban hospital or even a rural hospital.”
Halloran says he feels privileged to be considered a leader in the field of nursing. “In many ways I had … the opportunity to do these things over the years, which has been an honor, and then the second piece is to shape [nursing],” he says. “I have done that through practice and through the teaching I have done.”
Mi Ja Kim, PhD, RN, FRCN, FAAN
Mi Ja Kim is one of four nursing educators in the United States named a 2012 Living Legend by the American Academy of Nursing. Since 1994, the Academy has named just 86 Living Legends in the United States. The award honors the distinguished careers of those who have made notable contributions to nursing practice, research, and education.
Kim is a professor, dean emerita, and the executive director of the Global Health Leadership Office at the University of Illinois at Chicago (UIC), College of Nursing (CON). She is known internationally for her leadership in research, scholar training, administration, and policy development. She has published 116 scientific papers and made over 260 research and scholarly presentations at national and international conferences. She has also secured over $6 million in training and research funding from the National Institutes of Health (NIH) and other sources.
Kim served as the dean of the UIC CON which prides itself as a top 10 college in the country, and was the first nurse to be appointed as the vice chancellor for research and dean of the graduate college at UIC. She earned her PhD in physiology at UIC and—with the exception of one year as a Senior Fulbright Scholar at her alma mater, Yonsei University, in Korea—has spent her whole career at the university. “UIC really has been an incredible place for me,” Kim notes. “It is open to anyone who is accomplished in her/his field, regardless of race or ethnicity.”
Kim’s extensive list of accomplishments only reaffirms her status as a leader in her field. She is an Honorary Fellow of the Royal College of Nursing in the United Kingdom and has received the Lifetime Achievement Award from the Asian American Pacific Islanders Nurses Association. She was one of 18 charter members of the National Institute of Nursing Research’s (NINR) study section as well as a member of the NIH’s National Advisory Council. Kim has been named one of the 100 Most Influential Women in Chicago by the Chicago Tribune; has received the Recognition of Outstanding Contributions to Nursing (The Public Women’s Award), American Nurses Association Minority Fellowship Programs and the Cabinet on Human Rights; two awards for “Meritorious Service in the Fight Against Heart Diseases – Public Policy and Government Relations” from the Chicago Heart Association; and two American Journal of Nursing Book of the Year awards for the Pocket Guide to Nursing Diagnosis and Classification of Nursing Diagnoses: Proceedings of the Fifth National Conference.
Her research interests include pulmonary physiology/nursing, cardiovascular health disparities in Korean Americans, and the quality of nursing doctoral education involving seven countries. Her career documentary has been filmed by the Korean Broadcasting System, which is the largest TV network in Korea—an accolade she finds a high honor.
The students appreciate Kim. She lists two “Golden Apple” awards she received from the junior and senior undergraduate students as highlights of her career. Since 2013, she has been the program director of the Bridges to the Doctorate for Minority Nursing Students, which is funded by the NIH. Eleven PhD students have graduated under this grant and 23 are in the Bridges program currently. This program is one of the largest ones in the country that have educated and trained underrepresented minority nursing students pursuing a doctoral degree.
Omana Simon, DNP, RN, FNP-BC
Omana Simon is an advanced practice nurse who serves as the facility telehealth coordinator at Michael E. DeBakey VA Medical Center (MEDVAMC) in Houston, Texas. A native of India, Simon came to the United States in 1983 and began her health care career with a BSN before diligently working her way up the ladder.
Today, she works on the cutting edge of technology. Simon provides primary, secondary, and tertiary prevention strategies to the veteran population. For her efforts, she was the Gold Award winner in 2012 of the Good Samaritan Foundation’s Excellence in Nursing Awards in the Clinical Practice in the Large Hospital category and a recipient of the 2012 Nursing Excellence award in the Advancing and Leading the Profession category for the Texas region.
As the facility telehealth coordinator at MEDVAMC, Simon is responsible for a program that allows vets to receive home telehealth, store and forward, and clinical video telehealth (different modalities of telehealth). “Telehealth in Veterans Affairs is a huge project,” says Simon. “We can provide health care through the use of telehealth devices, video conferencing equipment, or Jabber/MOVI.”
Simon is a true leader in her field, implementing a number of clinical video telehealth programs at her facility, including telepreop, telerehab, and tele-epilepsy, to name a few. These programs connect the veterans in the rural areas where health care is not easily available to a provider at a distant site.
She also oversees telehealth equipment and telehealth programs. “I never thought when I went into nursing I would be on the forefront providing care to the patients using telehealth technology,” says Simon.
Under her direction, the home telehealth program at MEDVAMC received three hospital-wide recognitions. “She is very hard working, very intelligent, and very insightful,” says Nicholas Masozera, MD, the primary care director atMEDVAMC.
For her part, Simon says she gets her inspiration from the veterans she serves. “It is truly an honor to serve the nation’s heroes by providing exceptional 21st century health care that improves their health and well-being,” she notes. Simon exemplifies excellence in her role as a family nurse practitioner as well as a mentor and teacher of future caregivers. Simon upholds the tradition of nursing by being a caring, compassionate nurse who settles for nothing but health care excellence for veterans and the community she serves.
Ora Strickland, PhD, RN, FAAN
Ora Strickland is a nationally recognized leader in women’s health, minority health, and nursing measurement. Not only has Strickland won nine American Journal of Nursing Book of the Year awards, but she was also the first person to hold an endowed professorship in the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, Georgia. Formerly a professor at Emory, Strickland is now the dean and a professor at the College of Nursing and Health Sciences at Florida International University in Miami.
Strickland began her writing career early. “Writing is storytelling but on paper. If you are excellent at writing, your work will last a long time; its imprint will be longer,” notes Strickland. “You can build and extend on knowledge and present problems and their solutions in new and unique ways.”
Strickland says she recognized that she could write textbooks when she was a student herself. “You can blaze trails [writing],” she adds. “You can really make a difference if you are good at writing textbooks. You can have an impact on how people are taken care of.”
Strickland is the founding editor and served as senior editor of the Journal of Nursing Measurement for 20 years. She has been on a plethora of prestigious editorial boards and panels, including Advances in Nursing Science, Research in Nursing and Health, Nursing Outlook, Journal of Professional Nursing, Scholarly Inquiry for Nursing Practice: An International Journal, Encyclopedia of Nursing Research, Health Care for Women International, Nursing Leadership Forum, and the American Journal of Public Health.
Strickland has been recognized by many groups and organizations. She was the youngest person inducted into American Academy of Nursing at age 29 and has won the “Trailblazer Award” from the National Black Nurses Association (NBNA). She also earned the Mary Elizabeth Carnegie Award from the Southern Council on Collegiate Nursing for her contributions to health and nursing. Additionally, she was inducted into the NBNA Institute of Excellence.
“I don’t think about the awards I won. It isn’t important,” says Strickland. “I get joy in what my students have produced, the research and work they are doing. That is where I find my joy and that is where my rewards come from.”
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