Completing the Circle
The great circle of life: It’s the lesson that Simba, the young lion cub in Walt Disney Pictures’ The Lion King, learns as his story unfolds. When Simba loses his father, his view of life changes and eventually he comes to accept “akuna matata”–no worries—as his philosophy. The animated classic illustrates how life has a beginning (birth) and an end (death), but what we encounter in between greatly influences our perceptions.
Of course, life and death are far too complex to be neatly packaged like a children’s movie. But the cultural attitudes, traditions and beliefs we encounter in our lives do affect how we approach these major events. From welcoming a new baby into the family to witnessing the passing of a loved one, it’s at these highly emotional times when we turn to others–such as family, community and health care providers–for support and guidance. It is also at these times–particularly at the end of a life–when nurses can make their greatest impact and perhaps reaffirm their decision to become a nurse.
According to the 2000 U.S. Census, one out of every four Americans is non-white. The traditional American melting pot of assimilation that characterized much of the 20th Century has today evolved into a colorful garden of racial, ethnic, cultural and religious diversity. Because virtually every culture has its own distinct beliefs, customs and practices concerning death and dying, the nation’s health care profession is recognizing that it can no longer take a one-size-fits-all approach to caring for the terminally ill.
By choosing a career in the emerging field of end-of-life (EOL) care, nurses of color can make an exceptional contribution to providing minority patients and their families with culturally competent and sensitive care at a time in their lives when they have never needed it more.
Accepting the End
Most nurses have resigned themselves to the reality that, throughout the course of their careers, some of their patients will lose their battle against illness and disease. Whether it’s a prolonged fight against cancer or the unexpected tragedy of a brain aneurysm, death is an inevitable part of health care. Traditional training, however, teaches health care providers that they must use every available resource to try to thwart a fatal outcome. This is a cornerstone of nursing education and is aided by the constant influx of new, life-saving technology.
It’s not surprising, therefore, that throughout much of the last century, health care providers received very limited education on how to help patients cope with the end of their lives. Helping the dying prepare for that transition was most often left to religious counselors or the patient’s family. But that is changing now, as more health care professionals find their roles evolving to include caring for patients’ needs at all stages of their illnesses.
“It’s not necessarily the length of a life that’s important, but the quality of life,” says Polly Mazanec, RN, MSN, AOCN, a clinical nurse specialist at the Hospice of the Western Reserve in Cleveland. “As nurses, we have been trained in the high-tech ways of keeping people alive, but now we’re also learning how to help people die comfortably and with minimal pain.”
One of health care’s more well-publicized efforts to focus directly on end-of-life issues was the emergence of hospices nearly 30 years ago. Generally speaking, a hospice is a “serene,” compassionate environment in which terminally ill patients can spend their last days in dignity and freedom from pain. Hospice staff are trained to ease suffering, manage diseases’ symptoms and provide emotional support to critically ill patients and their loved ones so that they can be comfortable and reach a sense of peace.
“With end-of-life care, we have to switch from a cure-oriented mode of practice to one of comfort and support,” explains Mazanec
The popularity of this approach to end-of-life care is evident in the growing number of hospice facilities nationwide. According to the National Hospice and Palliative Care Organization (NPCO) in Alexandria, Va., an association representing hospice and palliative care programs and professionals, its member facilities admitted 700,000 patients in 1999–up from 540,000 in 1998.
Interestingly, the majority of hospice patients are white–83% in 1995, says NPCO. The organization estimates that in 1995 only 8% and 3% of hospice patients were African American and Hispanic, respectively.
Why the disparity between the majority and minority populations? Many health care experts point to culture as one of the major contributing factors.
Respecting Cultural Differences
Patients’ cultural norms and beliefs play an important role in their health care decisions–from seeking out a provider to complying with treatment instructions to their ability to communicate with caregivers. This is especially true with end-of-life care, because the patient often brings with him or her a lifetime of perceptions.
“A patient’s vulnerability is intensified at the end of his or her life, so health care providers must be careful to respect cultural differences,” comments Diana Harris, MA, a research associate in the Department of Ethics and Health Policy Initiatives at the Albert Einstein Healthcare Network in Philadelphia. The department has been examining end-of-life care issues in culturally diverse communities with staff, patients and local community and religious leaders.
In minority communities, traditional cultural beliefs and customs surrounding death and dying can hold extreme importance for patients and their families. Depending on the culture, death may call for loud, open wailing, chanting or quiet contemplation.
“Culture is very important and I don’t think it’s being given the consideration it deserves when it comes to end-of-life care,” says Gwen London, executive director of The [Washington] D.C. Partnership to Improve End-of-Life Care. “I don’t think the current health care system is set up to deal with cultural differences.”
Culture, however, isn’t simply defined by race, ethnicity, gender or religion, experts contend. Rather, it’s a combination of all these factors plus many more, including socioeconomic status, education and, especially for immigrant groups, level of acculturation to the American way of life.
“Nurses have become cultural brokers in health care,” notes Carolyn Bloch, RN, MSN, CNS, a certified transcultural nurse specialist and transcultural/diversity consultant with the Los Angeles County Department of Health Services, Office of Diversity Programs, along with her twin sister, Carol Bloch, RN, MSN, CNS. “Nurses can introduce immigrant patients to American health care procedures, but the patients come with their own cultural views, and nurses must find a balance,” Carolyn explains. “This is especially important with issues of death and dying.”
Finding comfort in religious traditions is another way patients and their families cope with death and dying. For example, Catholics believe it is important to receive Holy Communion and Last Rites by a priest during their final hours. In Judaism, it is a sign of respect for relatives and friends to watch as a loved one passes away. And Buddhists, with their belief in reincarnation, may use chanting to calm the patient’s state of mind at the time of death because they believe this will impact the person’s character at rebirth.
Nurses must be aware of these beliefs and practices so they can attend to dying patients’ spiritual needs in the proper way, notes Alice Cornelison, RN, PhD, an assistant professor and assistant to the associate dean for clinical affairs at Howard University in Washington, D.C., a Historically Black University. For example, she says, Muslims believe the dying person should be turned toward Mecca before and after death.
Religion, however, is not the only cultural element affecting how people feel about death. Sometimes, it’s an ancient custom or belief that has carried on through generations. The Bloch sisters point to a case of a Chinese-American physician who was diagnosed with cancer. According to his family’s cultural beliefs, the sick member must not know or be told of his condition for fear of saddening the spirit and bringing death even sooner.
“Because he was a doctor, this man had been the family member who made all the decisions regarding health care,” explains Carol Bloch. “But when he became sick, he had to relinquish the role of decision-maker. His culture demanded that he not know he was dying.”
This, of course, is the opposite of the American philosophy that the patient has a right to know about his diagnosis and prognosis in order to make decisions about treatment options. In this man’s case, Bloch says, health care providers communicated with designated family members and not the patient. The Blochs also cite the example of a Persian immigrant patient whose beliefs required that a dying person not be told of his condition. This was so important to the family that a relative stood guard outside the hospital room door to make sure the patient was not told what was happening.
Hispanic culture holds similar beliefs about preventing the spirit from hastening death, which is why many families in Hispanic communities opt to have a loved one pass away at home, rather than in the hospital. Here, too, the patient’s extended family is often responsible for making treatment decisions. For example, it’s not uncommon for a wife to defer her health care choices to her husband or to family members to be made as a group.
In contrast, other cultures may welcome a more interventive approach, seeking out life-prolonging technology and the hospital environment. Depending on past experiences, some patients may want full control over their treatment decisions, including employing every plausible option.
However, says Harris, some minority patients have concerns about whether they will receive the same quality of care and the same range of treatment options that are offered to white individuals. “Some of this apprehension,” she adds, “doesn’t just arise with the issue of end-of-life care, but may have been rooted very early in their lives.”
This is particularly true with African Americans. In some black communities, there is an overall distrust of the health care system, which may be a reason behind the small percentage of African Americans who opt for hospice care.
While some of these generalizations may seem like stereotypes, and may not apply in all cases, Carolyn Bloch believes that culturally knowledgeable nurses are better equipped to find the most appropriate way to assist all parties involved with end-of-life care–the patient, family members and even other health care staff.
“If they know that Hispanics tend to refer to the family unit, nurses can relieve a lot of anxiety for the patient simply by asking, ‘Would you like to have your family here with you?’” she notes. “Also, incorporating those cultural aspects into a treatment program can help decrease the nurse’s anxiety, because you’re not struggling with trying to change the patient into doing things ‘the American way.’”
When in Doubt, Ask
Even if EOL-care nurses share the same ethnic or cultural background as a particular patient, or have extensive knowledge of that culture, experts caution that they should resist the temptation to make blanket assumptions about a terminally ill patient’s preferences and needs.
“Although a patient may belong to a certain [cultural] group, he may not follow all the practices,” comments Mazanec. “That is why it’s so important to ask questions to find out what he, as an individual, wants at the end of his life.”
Furthermore, nurses have so many duties to fill their shifts that they may not have extra time to storehouse multiple facts about multiple cultures. “It isn’t possible, or even reasonable, to expect every health care provider to be fluent in multiple cultural traditions,” Harris agrees. “But I do think it’s essential for caregivers to have respect for cultural differences and to listen.”
Adds Mazanec, “I don’t think we always need to have cultural matching between patients and nurses to achieve quality end-of-life care. Nurses just have to be able to ask the right questions and treat all patients’ beliefs with respect.”
End-of-life experts agree that asking questions is the most efficient method of discovering how culture could impact a dying patient’s care. Non-threatening questions such as “What did you do for a living?” can yield very telling responses. Questions regarding family members or friends can help nurses determine whom the patient wishes to have near him at this stage. Even a direct approach, such as asking “Is there anything you want me to know about your beliefs or customs while I’m taking care of you?” can immediately explain to nurses how they can incorporate a cultural perspective into their treatment. These questions need not take up huge amounts of time. They can be asked while bathing patients or administering medications or simply while carrying out other nursing responsibilities.
“It’s important to have these conversations with patients and their families in order to understand what they need,” Mazanec emphasizes.
Harris adds this advice: “While facilitating these discussion, however, nurses should not bring their own frustrations or biases to the table.”
Nursing educators are working hard to facilitate end-of-life discussions within the profession so that nurses can become better equipped to help patients at this crucial stage of their diseases. As an example of the lack of knowledge currently available to health care providers, Mazanec cites a recent study of nursing and medical textbooks that revealed that only 2% of the books contained references to EOL care.
To change this situation, in February 2000 the American Association of Colleges of Nursing (AACN) established the End-of-Life Nursing Education Consortium (ELNEC) Project with a grant from The Robert Wood Johnson Foundation. Among the national program’s objectives is to help schools of nursing incorporate end-of-life care information into their curricula.
In collaboration with four nationally recognized nurse experts on end-of-life care, ELNEC has developed a comprehensive EOL-care course curriculum, including supplemental faculty materials such as outlines, Power Point overheads and additional readings. The course is organized into nine content modules, including one devoted exclusively to cultural considerations in EOL care (see sidebar). To date, the ELNEC course has been presented to representatives from nearly all of the 50 states, who, in turn, have taken the information back to colleges and universities in their areas.
“[Schools] are realizing that this is not simply an elective choice but an essential piece of the nursing education program,” says Mazanec.
ELNEC also has recently begun to contact hospitals’ staff development departments and continuing education authorities to provide working nurses with an orientation to end-of-life care, because many of these nurses may not have had exposure to EOL issues while they were in nursing school. “Too much end-of-life content is being learned in on-the-job training after graduation,” comments Cornelison.
Other organizations, too, are examining how they can assist nurses and other health care providers with developing end-of-life care skills. In the nation’s capital, the District of Columbia Hospital Association joined with local health care educators, community leaders and others to form The D.C. Partnership to Improve End-of-Life Care. One of the partnership’s multiple task forces, spearheaded by the nursing school deans at Georgetown University and Howard University, is addressing ways to expand the EOL education options currently available to health care professionals. One result of these efforts is the creation of an EOL-care course–a collaboration between the participating schools–which is being offered in the D.C. area for the first time this fall.
Through a combination of specialized education and cultural sensitivity, nurse can make a difference in creating a peaceful end-of-life experience for patients and their families. By creating a positive and understanding environment where patients of all cultures can complete the circle of life in their own ways, nurses can take part in a profound human experience and reaffirm the dedication to taking care of others that brought them to nursing in the first place.
A Model for Culturally Competent End-of-Life Care Education
In this nine-module EOL-care curriculum developed by the American Association of Colleges of Nursing (AACN)’s End-of-Life Nursing Education Consortium (ELNEC) Project, cultural considerations are not an afterthought but an essential component of the program:
- Nursing Care at the End of Life: Overview of death and dying in America; principles and goals of hospice and palliative care; dimensions of and barriers to quality care at EOL; concepts of suffering and healing; role of the nurse in EOL care.
- Pain Management: Definitions of pain; current status of and barriers to pain relief; components of pain assessment; specific pharmacological and non-pharmacological therapies, including concerns for special populations.
- Symptom Management: Detailed overview of symptoms commonly experienced at the EOL; for each symptom, the cause, impact on quality of life, assessment, and pharmalogical/non-pharmalogical management.
- Ethical/Legal Issues: Recognizing and responding to ethnical dilemmas in EOL care, including issues of comfort, consent, prolonging life, and withholding treatment; euthanasia and allocation of resources; legal issues, including advance care planning, advance directives, and decision making at EOL.
- Cultural Considerations in EOL Care: Multiple aspects of culture and belief systems; components of cultural assessment with emphasis on patient/family beliefs about roles, death and dying, afterlife, and bereavement.
- Communication: Essentials of communication at EOL; attentive listening; barriers to communication; breaking bad news; and interdisciplinary collaboration.
- Grief, Loss, Bereavement: Stages and types of grief; grief assessment and intervention; the nurse’s experience with loss/grief and need for support.
- Achieving Quality Care at the End of Life: Challenge for nursing in EOL care; availability and cost of EOL care; the nurses’ role in improving care systems; opportunities for growth at EOL; concepts of peaceful or “good death,” “dying well” and dignity.
- Preparation and Care for the Time of Death: Nursing care at the time of death, including physical, psychological and spiritual care of the patient, support of family members, the death vigil, recognizing death, and care after death.
Source: American Association of Colleges of Nursing, ELNEC Project, April 2001