Coping with the potential loss of one’s child is a devastating experience, and cultural influences may further hinder the opportunity for the integration of pediatric palliative care. A 2008 survey published in Pediatrics reported that over 40% of health care providers identified cultural differences as a frequently occurring barrier to adequate pediatric palliative care. Children with life-limiting illnesses deserve a cultural reassessment of how we care for them when the goal of care has changed from curative to palliative.
The concept of cultural competence and its necessity in the treatment of diverse patients
has come to the surface of the medical community within the last decade. Health care providers must demonstrate knowledge and respect of individual as well as group value systems to become effective in providing care to this population. In response to the United States becoming increasingly multicultural, the Institute of Medicine has published two reports that support the need for cross-cultural training: Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare and The Future of Nursing: Leading Change, Advancing Health.
According to the American Academy of Pediatrics, the goals of pediatric palliative care are the same goals as adult palliative care, which includes providing support and care for pain, psychological and social stress, physical symptom management, and spirituality. However, the difference regarding pediatric palliative care is that the focus is specifically aimed at serving the needs of the child as well as the family. A challenge specific to pediatric palliative services is that end-of-life care for a child seems inherently unnatural in the mind of many parents and family members who often struggle to accept that nothing more can be done for a child.
The literature frequently references the underutilization of palliative care services among ethnic minorities, including African American, Latino, Native American, Russian, and Vietnamese cultures. The following attributes have been identified in the literature as a source of underutilization: a lack of the family’s familiarity with hospice and palliative care services; language barriers; religious differences; difficulties in accessing insurance; distrust of the health care services; and discomfort with introducing additional health care with professionals not of one’s ethnic or cultural background.
In 2002, the Initiative for Pediatric Palliative Care (IPPC) published recommendations for providing culturally sensitive end-of-life care that utilizes a framework that includes: improving pediatric palliative care by maximizing family involvement; understanding the influence of religion in pediatric palliative care; and understanding how culture influences lifestyle and shapes the universal experiences of illness, pain, and death across the cultural barriers. An appreciation for cultural norms and customs is critical if we are to be successful in supporting the child and the family in reducing suffering and providing comfort and support.
Cultural Influence in Decision Making As a result of the IPPC recommendations, several organizations have created reference materials and guidelines for clinicians to use. For instance, the University Of California School Of Nursing published Culture and Clinical Care, which discusses culturally competent care across 35 cultural groups. The University of Washington Medical Center (UWMC) offers Culture Clues fact sheets of useful tips when communicating with Latino, Russian, and Vietnamese cultures (among others). The journal Palliative and Supportive Care published an article in 2013 comparing cultural and religious considerations in pediatric palliative care. These resources cited the following cultural differences in end-of-life decision making:
African American • Many aspects of African American culture today reflect the culture of the general U.S. population.
• The structure in African American families is often nuclear and extended with nonrelated “family” members.
• The family may be matriarchal, although father or mother may take on the decision-making role.
Latino • Family involvement is very important in the Latino culture.
• The family-centered model of decision making is highly valued and may be more important than patient autonomy.
• The mother is typically regarded as the primary caregiver and often will make the decisions regarding care; however, when possible, Latino women will seek permission of the child’s father before a decision is made regarding continuing or discontinuing treatment.
• Often, when language becomes a barrier, the normative hierarchical family structure is waived and deferred to the family spokesperson who speaks the best English.
Native American • Given the importance of family in the Native American culture, the entire family may be included when making decisions and signing documents.
• Native Americans may also desire that information is shared with community leaders so that they can assist in the decision-making process for the child.
Russian • Health care information is shared with family members.
• The entire family makes decisions along with the patient, and the person closest to the patient often has the most influence.
• The doctor—not the nurse—is expected to share the patient’s prognosis with the patient and family, as he or she is typically regarded as the ultimate authority in all medical matters.
Vietnamese • Family has a central role.
• Decisions are often the responsibility of the eldest male, yet older women may also have significant influence.
• Traditionally, the eldest male is the family spokesman; however, the person with the best English often assumes this role.
• Removal of life support may require extensive family discussion, which places the responsibility for the decision on the entire family instead of one individual.
Importance of Faith and Religious Traditions Faith and religious traditions are held of great importance in the majority of cultures; however, it is important to note that cultural traditions are dynamic and cannot be generalized to all families. While guidelines may offer an approach to religious considerations pertaining to end-of-life care, the provider must perform an individual assessment of the family as to their beliefs and practices. The UWMC’s tip sheets and the 2013 study in Palliative and Supportive Care offer a glimpse of the cultural differences in religious traditions during end-of-life care:
African American • Death rituals for African Americans vary widely, related to the diversity in religious affiliations, geographic region, education, and economics.
• Emotional expression varies; you are likely to see a mix ranging from public displays of crying and wailing to silent and stoic behavior.
• Death is not viewed as a formal break with life, given the belief that the spirit/soul continues and may be able to interact from the next plane of existence.
• Bereaved African Americans are more likely to seek help from clergy than from health care professionals.
• Depending on their specific cultural beliefs, African Americans might involve a healer or “root worker” whose role is important in orchestrating the natural, spiritual, and relational aspects of life.
• African Americans often rely on the health care team for help with cleaning and preparation of the body.
• African Americans may refuse to stop life-prolonging treatments because of belief in divine rescue.
Latino • Prayer and ritual may be a part of the end-of-life process for the patient and family members.
• Latino families may request that they keep candles burning 24 hours a day as a way of sustaining worship. Since candles are not permissible in hospital settings, the suggestion of using electric candles is often viewed as an appreciated gesture of respecting one’s beliefs.
• The patient and the family may wish to display pictures of saints, as saints have specialized as well as general meanings for Catholics.
• Some Latino families may want to honor their deceased relative by cleansing the body.
• The last rites are often important for Latinos who are Catholic when a person is close to death. If your patient is Catholic, ask about their preference and plans for this ritual.
• Latinos often demonstrate wailing and strong emotions at the time of death, which may be considered a sign of respect.
Native American • Death rituals among the Native American tribes vary widely because they all have different religious and spiritual beliefs. It is important to assess the religious practice of the individual and follow accordingly.
• Native Americans may wish to seek traditional healers for help in restoring harmony of life.
• Herbal remedies may be used in healing ceremonies.
• The medicine man or spiritual leader leads the ritual.
• The circle is symbolic in the ritual, as in the circle of life; therefore, the family and relatives may form a circle around the patient’s bed.
• Native Americans follow the belief that the spirit of the person never dies.
• Silence is highly valued.
• Native Americans may be hesitant to sign advanced directives or other end-of-life documents because of general mistrust related to past misuse of written treaties and documents with the U.S. government.
Russian • Russians may practice different denominations. Depending on the denomination, the family may desire to have a pastor, priest, or rabbi present at the moment of death.
• The family plays a major role in supporting the sick. Usually, there is a family member present at the bedside to attend to the patient at all times.
• Russians who practice their religion may consider prayer an important and powerful healing tool.
• In the Russian culture, relatives and friends are all expected to visit the patient. They frequently bring food and may include gifts for the clinicians as a sign of respect and thanks.
• Wailing and other displays of grief may not be demonstrated as they may be reserved primarily for expression in the home (as opposed to public display).
• Often, the family may have some specific practices for washing the body after the death. It is important to ask about preferences and try to accommodate.
Vietnamese • It is important to note that there are a variety of Vietnamese cultures and religious practices. Most Vietnamese are Buddhist; however, other religious preferences include Catholic, Evangelical Protestant, and Chinese Confucianism.
• Vietnamese who practice the Buddhist faith may call a monk to give blessings. Buddhist patients and family may chant and create an altar for prayer. Vietnamese who are Catholic may ask for a priest for last rites.
• In the Vietnamese culture, white is considered the color for mourning.
• The expression of grief varies in the Vietnamese culture. Families may express grief with either a stoic response or with crying and weeping.
• Upon death, organ transplant and/or autopsies may be accepted by the Vietnamese family with very careful explanation.
• The bereavement process of the Vietnamese culture has an extremely positive impact on family health. There is intensive and extensive community involvement with frequent visits from family and friends when death first occurs and then visits are slowly weaned off over a 2- to 3-year period.
Today’s multicultural society presents health care providers with unique challenges for providing cultural care and competence to the pediatric palliative care population. This article attempts to provide insight to but a few of the cultures that we may come across in our practice. Every person is unique, and clinicians who understand their patients’ cultural values, beliefs, and practices are more likely to have positive interactions with their patients and provide culturally acceptable care.
In nursing school, we were often told by our instructors to “treat the patient as you would want to be treated.” When it comes to treating patients with a different cultural background, this mantra should translate to “treat your patients as they want to be treated instead of how you would want to be treated.”
Karen J. Smith, MSN, CRNP, NP-C, is a doctoral nursing student at Wilkes University in Wilkes-Barre, Pennsylvania. Her background includes hospice and palliative care, and she has written health-related articles for West End Happenings.
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.”
Holistic, Patient-Centered
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.
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