Till Death Do Us Part
As a Chinese American patient neared death in a nursing home, her family members wanted to follow their Buddhist tradition of gathering around their loved one to chant for 12 hours before and four hours after her passing.
It was an unusual request for the nursing home, but hospice nurse Saijing Xu, RN, CHPN, made sure the family’s wishes were honored. She worked with the facility’s staff to move the patient to a private, single room where her relatives could be alone with her before and after death. For the family, this was priceless. They believed the chanting would help their loved one’s soul pass to heaven and bless the younger generation.
As a case manager and nursing liaison for Beacon Hospice in Boston, Xu helps terminally ill patients achieve the best quality of life possible in their last months, weeks and days. She also plays an important role in reaching out to diverse communities. Numerous studies have shown that Americans of color are far less likely to use hospice care than the Caucasian majority population. Minority nurses such as Xu, who speaks Mandarin and Cantonese, can help bridge the gap by providing culturally and linguistically competent care that is sensitive to these patients’ customs and beliefs about death and dying.
Hospice and palliative care nurses provide pain management and comprehensive, holistic care in the final stages of life. They work as members of interdisciplinary teams with physicians, chaplains and social workers to address patients’—and their families’— physical, social, emotional and spiritual needs as they face terminal illness and bereavement.
This specialty encompasses a broad spectrum of nursing professionals—from nursing assistants to advanced practice nurses—and their numbers are growing rapidly. Membership in the Hospice and Palliative Nurses Association (HPNA) has tripled in the last seven years, says the association’s CEO, Judy Lentz, MSN, RN, NHA. She estimates that 20,000 nurses currently work in the specialty, including 14,000 who are Certified Hospice and Palliative Care Nurses (CHPNs).
The hospice care movement in the United States began about 30 years ago and has evolved slowly. “In America, people don’t like to talk about dying,” Lentz says. “Less than 30% of terminally ill patients receive hospice care, and those who do receive it are getting an average of only five to six weeks. Medicare covers hospice care for the last six months of life.”
With the government defining hospice care as the last six months of life, the newer specialty of palliative care emerged about 10 years ago to address the needs of patients who are who have incurable, progressive illnesses but are not yet ready for hospice. It is aimed at providing comfort and symptom relief rather than a cure.
“What palliative care is all about is the patient and [his or her] significant others defining what they want as their goals for the remainder of life,” Lentz explains. “It’s not what medicine tells you [should be done], but what the patient wants.”
Hospice nurses provide care in patients’ homes, long-term care facilities or in hospice units. Palliative care nurses practice in hospitals, nursing homes and rehabilitation units. Nurses in both specialties may also work as end-of-life care educators and researchers.
Breaking Down the Barriers
A variety of issues have led to the disproportionately low use of hospice care in communities of color. Among patients who died while in hospice care in California, the most ethnically diverse state in the nation, only 4% were Asian American, 6% were African American and 15% were Hispanic, according to reports commissioned by the California HealthCare Foundation. The vast majority—74%—was white.
To help Latino families remember their loved ones who have passed away, Central Texas Medical Center Hospice celebrates the traditional Mexican Day of the Dead holiday.
The researchers found that many black and Hispanic patients wanted aggressive, life-prolonging treatment, which is often not covered while patients are in hospice care. Some minority patients mistrust the health care system, fearing that hospice and palliative care may be a form of discrimination because it does not focus on a cure.
Cultural differences also play a role. “We [Latinos] take a lot of pride in taking care of our elders and our sick,” says Linda Lopez, MSHP, MSN, RN, director of the Central Texas Medical Center (CTMC) Hospice. Many Latinos, she explains, don’t want outsiders taking away their role as caregivers. Sometimes family members refuse the services available through hospice because they feel like they are the ones who should provide that care.
Language differences can also create barriers. For example, according to a recent report on National Public Radio, there is currently no word for “hospice” in Spanish. Furthermore, recent immigrants may be unfamiliar with the U.S. health care system, and with the concept of hospice care in particular.
“For Chinese patients and their families, hospice is new,” Xu says. “A lot of them do not know that hospice services are available.”
A growing number of hospice and palliative care programs are working hard to reach out to diverse communities—and minority nurses are playing a key role in these efforts.
About 40% of the population in San Marcos, Texas, where CTMC Hospice is based, is Latino. Lopez, a retired college educator, is hiring more bilingual caregivers and educating her staff about cultural beliefs and traditional health practices, such as the use of herbs and folk remedies. Some Latino families, for instance, believe that receiving shocking news can result in a “fright illness” called susto. The remedy requires a ceremony in which a healer, often the eldest female member of the family, prays over the person and brushes the body with a bouquet of fresh herbs, such as basil.
When nurses demonstrate cultural knowledge, it lets the patients know their ways are accepted, Lopez believes. “If they know we understand, the relationship is stronger, which can only be a benefit to the patient and family.”
To help Latino families cope with bereavement, CTMC Hospice celebrates the Day of the Dead (Dia de los Muertos), a traditional Mexican holiday in which families remember their loved ones who have passed away. Last year the hospice partnered with the Hispanic Chamber of Commerce and local restaurants to sponsor altars where community members could place artifacts representing the lives of their loved ones. The event helps educate the community about hospice and allows people to express their feelings, Lopez says.
Beacon Hospice, the largest provider of end-of-life services in New England, began a concerted outreach effort to local minority communities two years ago. The hospice opened an office in Roxbury, a primarily African American neighborhood in Boston, and staffed it with mostly African American nurses and home health aides. Beacon also hired more bilingual nurses to provide linguistically competent care in Asian, Latino, Portuguese and French-speaking communities.
“When someone is at the end of life, the patient should not have to struggle to understand the nurse. The nurse should understand the patient,” says Betty Brennan, the hospice’s president and CEO.
As more minority families become aware of the benefits of hospice, they help spread the word. Stephanie Harriston-Diggs, who is African American, began volunteering for Beacon Hospice after her grandmother received care there. She spoke passionately about the service to friends and is now the hospice’s public relations director and president of its Lighthouse Foundation.
Hospice Nursing in Indian Country
In the Midwest, Hospice of Siouxland has been working to reach out to local American Indian communities. The hospice serves a 60-mile radius around Sioux City, Iowa, including two Indian reservations in Nebraska. But until recently, very few of its patients were tribal members.
With grant funding from the Nebraska Department of Health and Human Services, the hospice partnered with the Omaha and Winnebago tribes to create a culturally sensitive palliative care program. Before the program existed, tribal members with serious chronic diseases made frequent trips to the hospital emergency room. But when palliative care became available, they were able to manage their diseases better. The number of hospital visits dropped and the patients’ quality of life improved.
The hospice’s staff learned about the cultures of the tribes and worked with local hospitals to help accommodate tribal customs and rituals. For instance, when tribal members wanted to perform a smudging ceremony—a ritual purification that involves burning cedar, sage or other herbs and is believed to create a more peaceful transition to death—for a patient in a hospital ICU, hospice nurses explained the cultural reasons for the ceremony to the hospital staff and persuaded them to temporarily relax their fire safety rules so that the ceremony could take place.
“The team really became advocates,” recalls Hospice of Siouxland director Linda Todd, RN, BA.
There is a great need for more Native nurses who can work in palliative and hospice care programs in Indian Country, Todd adds. Her hospice is now working with Briar Cliff University in Sioux City to create scholarship opportunities for Indian students interested in nursing or social work.
“The Heart of Hospice”
Hospice and palliative nursing isn’t for everyone. Nurses who want to focus on end-of-life care must be mature enough to have come to terms with their own mortality and to have had some experience with death and dying.
“[At Beacon], we really look for people who have what we call ‘the heart of hospice,’” says Brennan. “It’s an element that goes beyond being a caregiver. It’s a real desire to promote the highest quality of living in the last days of life.”
Lucia Stevens, RN, CHPN, began her nursing career in cardiac surgery, then worked as a nursing director at a nursing home. But because she yearned to care for patients in a more holistic way, she became a hospice nurse for Beacon. “Hospice addresses everything that’s going on with the patient—spiritually, psychosocially and physically,” she says.
Nurses in this specialty form strong bonds with patients and their families. Stevens, who is African American, recalls one patient, a woman from Barbados who came to the U.S. with her husband for medical treatment and had no family nearby. Stevens cared for her for six months. “She was around the age of my mom, and we bonded so quickly. She started calling me her daughter.”
In her current position as account manager for Beacon’s South Boston office, Stevens meets with community members in the Roxbury and Dorchester areas to educate them about the benefits of hospice care.
Many people assume that working in end-of-life care would be depressing for nurses because their patients die. Certainly, hospice nurses do grieve. But the emphasis is really about making the most of life.
“You’ve got to live as if this is your last day—patients teach us that every day,” Lopez says. “We’re very blessed [to be caring for these patients] because they teach us so much about living.”
For Xu, the reward comes from knowing she made the most difficult time in someone’s life a little easier. “[It’s good to know] I helped a person leave this world with some comfort,” she says. “I know I made a difference in not only the patient’s life but also in the family’s life.”
Hospice and Palliative Nursing 101
Betty Davies, PhD, RN, CT, FAAN, will never forget the first time one of her patients died. Davies was a second-year nursing student working in a hospital, and a woman who had lung cancer died during her shift.
Nothing in her schooling had prepared her for this. Not knowing what to do, Davies lowered the head of the bed because she had seen nurses do that on TV, and then went to get help.
She later thought, “If caring for people who are dying is part of nursing, why aren’t nursing schools teaching it?”
For many years, nursing curricula did not emphasize end-of-life care. But that’s starting to change. There are currently 10 master’s degree programs around the country that focus on palliative and hospice nursing, as well as many certificate programs in the specialty, says Judy Lentz, MSN, RN, NHA, who is CEO of the Hospice and Palliative Nurses Association (HPNA).
In 2000, the American Association of Colleges of Nursing (AACN), in partnership with City of Hope National Medical Center of Los Angeles, launched the End-of-Life Nursing Education Consortium (ELNEC) project, a national “train the trainer” initiative designed to provide nursing school faculty and other nurse educators with training in end-of-life care so that they can teach this information to nursing students and practicing nurses. As of April 2007, over 3,700 nurses coast to coast have received ELNEC training.
Davies, who has spent much of her career researching and working in end-of-life care, is now a professor in the Department of Family Health Care Nursing at the University of California, San Francisco, which recently started a new acute care pediatric nurse practitioner program with an emphasis on palliative care. She says the school recognized that many pediatric NPs were getting jobs in hospitals but didn’t have the training for acute care. Because most children who die do so in the hospital, nurses working in these settings need to know how to address end-of-life issues.
“Nurses play a critical role in how families deal with the death of a child,” Davies explains. “Just by what they say and do, they can send a family on a course of bereavement that’s either helpful or not. If anyone needs to know about death and dying, it’s nurses.”
Excelsior College, an online college based in Albany, N.Y., recently launched a Hospice and Palliative Care Certificate Program with a strong focus on cultural competency and serving the needs of diverse communities. In creating the program, which was funded by a grant from the U.S. Department of Labor, the school contacted hospices around the country to learn which concepts should be included in the curriculum. “One of the [most important ones] was culture,” says Deborah Sopczyk, PhD, RN, director of the college’s Health Sciences Programs. “This was something hospices told us again and again.”
Excelsior staff and faculty also visited hospices that provide exemplary care to minority populations, such as Hospice of Siouxland and the Central Texas Medical Center Hospice. The certificate program includes case studies and video clips based on these hospices’ best practices to teach students about the importance of addressing cultural issues at the end of life.
“We were very careful not to use a cookie-cutter approach,” Sopczyk says. Students are taught to not make assumptions that all members of a particular ethnic group share the same beliefs.
For instance, the Omaha and Winnebago Indian tribes served by Hospice of Siouxland take opposite approaches to grief. The Omaha tribe believes tears help the passage of loved ones to the next world. They often cry and wail to express their grief in the presence of their loved ones, says faculty member Linda F. Kennelly, PhD, RN. The Winnebago, however, try not to cry, because they believe tears may block the dying person’s passage into the next world.
Excelsior College has also worked with the Rainbow Access Initiative to teach nurses how to provide hospice care that is sensitive to the needs of gay, lesbian and transgendered patients and their loved ones.