Palliative care can be equally rewarding and challenging. Patients are navigating the emotional and physical turbulence of terminal illness. The right professional can be instrumental in ensuring patients’ needs are met to make their period of care more comfortable.
So much of who people are impacts their experience of the palliative journey. This includes the nuances of their cultural, racial, and socioeconomic identities. It should be no question, then, that minority nurses are an invaluable resource at this time. Yet, the current state of palliative care suggests that the industry doesn’t quite reflect this.
Let’s explore the intersection of minority identity and palliative care nursing. What are the opportunities for minority nurses, and why are they so vital in addressing the challenges related to this sector?
The Opportunities for Minority Nurses
There’s no question that the medical sector, in general, is in greater need of nurses from various backgrounds. However, it’s also essential to look at the disparities within specializations. The needs of patients taking their palliative care journey suggest that minority nurses can find plenty of opportunities in this field.
The changing demographics of the aging population reflect this. It’s worth noting that there is relatively little research into the racial and ethnic disparities in palliative care staff. Nevertheless, there is some evidence that suggests a need for change. A Journal of Palliative Medicine study reported that over the next 20 years, the population of older minorities is expected to grow by 160%. This is far more than their white counterparts. The same study also cited a bereaved families survey that found “African Americans were less satisfied with the quality of end-of-life care.”
This data tells us there are opportunities for minority nurses to contribute to the specific needs that aren’t being met for the growing population of minority patients who will be seeking palliative care in the future.
Palliative nurse practitioners (NPs): Given the disparities in minority palliative care, there must be greater diversity in care leadership roles. Minority NPs can influence strategic decisions that ensure care plans are more relevant and positive for a broader range of patients.
Palliative educators: Palliative care is an emotionally and technically challenging field. Therefore, it requires skilled educators to guide professionals in developing appropriate medical, cultural, and empathic abilities. Nurses from minority backgrounds have invaluable perspectives to provide here.
Certainly, minority nurses themselves can seek the opportunities and talk to one another about them. However, it’s also important to encourage administrators and industry leaders to engage a diverse range of professionals more actively. This should involve pitching palliative care to minority students and nurses looking to shift careers. There must also be more significant financial and psychological support that makes palliative care a practical and attractive option.
Addressing the Challenges
There are clear opportunities for minority nurses in palliative care. But on a practical level, it’s important to establish what specific challenges these professionals are well-equipped to address. Firstly, this helps nurses better serve patients. But it’s also valuable information that care providers and administrators can use to pitch palliative care to minority nurses who may not have considered specializing in it.
Culturally Relevant Care
Palliative care deals with the end of life. Naturally, various cultural nuances influence this experience. One recent report outlined a significant variety of cultural differences related to the just treatment of pain during palliative care. People’s ethnicities, religious beliefs, and even generational demographics can influence how pain at the end of life is both perceived and managed.
Palliative care doesn’t always occur within hospice facilities. Nurses can also treat patients in their own homes. Patients from different cultural and socioeconomic backgrounds can face challenges related to the areas in which they live. Minority nurses can use community knowledge to identify issues and integrate solutions into care processes.
For instance, patients living in heavily industrialized communities may be subjected to poorer air quality. One study found that Black and Hispanic citizens bear 56% and 63% more air pollution, respectively, than they produce. Nurses with greater familiarity with these communities may better understand the signs of air pollution in the home. These may be environmental changes, like unpleasant odors, or additional medical symptoms, such as coughing and congestion. As a result, minority nurses can respond swiftly with preventions and treatments that improve palliative patients’ comfort.
Knowledge of the Practical Barriers
Let’s face it: Nobody better understands the barriers presented by cultural disparities than those subjected to them. Therefore, minority nurses can be powerful allies in improving the palliative care protocols that give hurdles to both patients and professionals.
A continuous commitment to process improvement is vital in any industry. Regularly assessing protocols reveals inefficiencies, issues with regulatory compliance, and tasks ripe for streamlining. It’s important to involve a greater diversity of nurses in mapping out and analyzing care processes. A team with a broader range of perspectives is more conducive to spotting barriers to good care that a more culturally limited one would miss. This enables a positive collaboration for redesigning processes to meet all patients’ needs.
Palliative care is one of the most challenging medical specializations. It deals with a particularly turbulent time for patients and their families and all the more reason, then, to ensure that culturally, racially, and socioeconomically diverse professionals are leading the way.
Nevertheless, addressing the growing disparities in care for those of minority identity needs immediate action. This is likely to require meaningful collaboration. Minority nurses can actively pursue palliative care and advocate for the systemic changes that make a genuine difference. However, administrators and industry leaders have a role in ensuring sufficient respect, support, and resources to make this a viable and enriching option for nurses.
Palliative care is defined as a practice with emphasis on maintaining and improving a patient’s quality of life that can be incorporated at any stage during the disease process. With a focus on symptom management and identifying clear goals of care, palliative care plays a vital part in optimizing quality of life. Currently, palliative care services are offered at a multitude of health care organizations that may consist of a team of physicians, advance practice nurses, social workers, chaplain services, etc. And although palliative care can be beneficial for the patient and their loved ones, there are still many barriers preventing its integration in care delivery. This can result from a misunderstanding of what palliative care can offer, its presumed synonym to hospice, late referrals to the palliative team, or a complete lack of consultation where a patient could have benefited. However, how can direct care nurses integrate the principles of palliative care in their everyday clinical practice?
Palliative care is multifaceted; however, some essential components include pain control, symptom management, and addressing goals of care.
Regarding pain control, the direct care nurse can begin by completing a comprehensive pain assessment. By understanding how to properly assess a patient’s pain, nurses can have a better understanding on how to effectively treat it. While the Numeric Rating Scale can provide some insight to the severity of pain, nurses can also utilize the OPQRST mnemonic to supplement their pain assessment.
Onset: Was the pain sudden or developed gradually? What were you doing when the pain began?
Provocation: What makes the pain worse? What makes the pain better?
Quality: Could you describe the pain? Words like sharp, stabbing, burning can help the nurse better understand what the patient feels.
Region: Is the pain localized in one area of the body or does it move?
Severity: From a scale of 1 – 10 with 1 being minimal pain to 10 being extreme pain, how would you rate your pain?
Time: When did the pain start? Have you experienced this type of pain before?
A functional assessment plays a very important role in controlling pain as well. For example, if a patient states no pain staying in only one position however discomfort when standing or sitting, that patient would be described as having limited functional ability due to inadequate pain relief. Providing efficient pain relief does have its barriers. Patients may be hesitant to accept narcotics in fear of being seen as drug-seeking or they may feel apprehensive to admitting they have pain. Because of this, education is especially important to allow patients better control of their symptoms.
Additional tools that a nurse can incorporate in their pain assessment are noticing body behaviors, like those presented in the Face, Legs, Activity, Cry, Consolability (FLACC) scale for children as well as non-verbal adults. A patient may state minimal pain; however, grimacing, clenched teeth, sweating, and tachycardia might indicate otherwise. Finally, when an intervention is implemented, such as medication, a pain reassessment should be conducted within an appropriate timeframe to evaluate its effectiveness. However, if repeated ineffectiveness of the current pain regimen, nurses should feel empowered to inquire about a proper pain management consult if services are provided at that health care institution.
From a physiological standpoint, multiple symptoms can prove to be quite challenging in supporting a patient’s comfort level. Symptoms such as shortness of breath, consistent coughing, fatigue, nausea, vomiting, constipation, and diarrhea can be a difficult burden. Hospitalized patients introduced to new medications and treatments are at risk for developing side effects, which is why medication education is especially important for patients in understanding what they may expect. For example, opioid treatment may be met with resistance for fear of its constipating side effect; however, effective management is possible by addressing fears, providing education, and potentially supplementing with a stool softener.
While pharmacological interventions are utilized more often in the hospital environment, manipulating the environment can provide some benefit as well. For example, in conjunction to oxygen support and medication, having a fan blow cool air in the direction of the patient or lowering the temperature in the room can provide some additional relief. Dyspnea is not always caused by a patient’s low oxygen saturation as contributing factors such as anxiety could produce the feeling of difficulty of breathing.
Coughing can interfere with adequate sleep and oral intake and can lead to physical exhaustion. Positioning and removing environmental irritants can be supplementary interventions that can be utilized alongside medications. A full respiratory assessment should be conducted, especially in regard to assessing the characteristics of a patient’s cough. Adjectives such as dry, moist, and productive can help the provider prescribe the appropriate medication.
Constipation and diarrhea attributed by underlying disease or medication side effects are distressing and exhausting symptoms that impacts patient mood and dignity. What can be done to help alleviate these symptoms? In regard to medication-induced constipation, commonly seen through opioid usage, prophylactic laxatives/stool softeners can be started to help potential side effects. Having a consistent regimen and re-evaluating its effectiveness allows the nurse to assess if the patients’ constipation is being managed appropriately.
Communication is the foundation of palliative care; through proper communication and transparency amongst the health care team can patients and families make informed decisions around their treatment options. The nurse is pivotal in accompanying the patient through the illness journey, whether it be simply through active listening and presence to ultimately providing guidance regarding treatment effectiveness. This nurse-patient relationship is built on trust and through supporting patients and families to be active participants in their care.
How can direct care nurses improve their communication skills, especially when it comes to a goal of care conversation? One strategy that can be implemented is to utilize open-ended questions. Questions such as “What do you understand about your medical condition?” elicits the patient’s perspective of their disease course. The conversation can delve deeper potentially into the patient’s perspective of their prognosis and the treatment options they believe to be available. This Ask-Tell-Ask strategy explores the patient’s understanding first before the nurse provides information. This back and forth cycle between the patient and nurses addresses four main principles: the patient’s perspective, information that needs to be delivered, response to the patient’s emotions, and recommendations from the nurse. When delivering information, the nurse should avoid using medical jargon and speak in simple terms. Finally, trust and compassion provide a foundation of effective palliative communication. Many times, when palliative care is discussed, the conversation can be somber as it may be dealing with advanced illness and burdensome symptoms. Therapeutic presence results in empathy, thus creating a safe space to discuss difficult issues.
Unfortunately, barriers still exist that prevent palliative care from being effectively delivered to those patients who would benefit from it the most. Palliative care is time and time again mistaken with death or hospice, thus resulting in reluctance to appropriate consults being in place. Additionally, some nurses may feel inadequate in engaging the patient and family in palliative topics or believe that these conversations should be solely conducted by the physician. Nurses need to be involved in overcoming these barriers to reduce misconceptions and ensure that other health care providers, patients, and families understand the benefit of palliative care implementation. These benefits include early focus on comfort treatments, reduction in cost of care, and overall decreased length of stay. Nurses play a crucial role in palliative care, and with continued self-education and engagement can the direct care nurse utilize their skills and knowledge to benefit their patients by acting as that essential extra layer of support.
Although many people don’t like to think about death and dying, it will happen eventually. When it does, those who are fortunate enough to have hospice and palliative care nurses caring for them will understand the importance of these nurses’ roles.
Palliative and hospice care nurses provide care for those who are the end of their lives. They are there for the final transition and use an entire array of medical knowledge and tools, skills, compassion, and life experiences to help in the best ways they can. Hospice and palliative care nurses strive to make patients as comfortable as possible both physically and emotionally. As their physical body shuts down, these nurses can use a combination of medication, music, talk, touch, and companionship to make the process something the patient is comfortable with.
The Hospice & Palliative Nurses Association and the National Hospice and Palliative Care Organization offer resources and education about this nursing specialty. Palliative and hospice nurses often provide education to the public as many people think of nurses as providing life-saving care and aren’t sure what end-of-life care entails. If they haven’t had interactions with hospice care, they may not comprehend all that goes into the nursing practice as someone approaches end of life.
While many find the end-of-life stage difficult to cope with, these nurses often consider it a supreme privilege to be present during someone’s last days. Nurses often develop deep connections with these patients as they try to meet their wishes and help them die with a sense of dignity and control. They also become close to families and even provide guidance and education to help families cope and to make them feel like they can take an active part in offering comfort and acceptance.
Hospice and palliative care nurses deal with grief, often very profound grief, on a daily basis. While the dying patient is coping with life coming to an end, a circle of loved ones is doing the same and trying to prepare for life after the person’s death, while also making the most of the final days. These nurses are especially skilled in managing grief and helping others learn coping skills while they still focus fully on the patient.
Hospice nurses need to take special care to make sure they are also able to cope with profound levels of grief and death in their lives so they don’t get burned out or experience compassion fatigue. Forming strong relationships with other nurses in this specialty is important as is joining professional organizations devoted to hospice and palliative care and even continuing education like certification or additional coursework or conferences. There is much to be learned from others in similar work and hearing how they cope and even what might be a red flag to take notice of. Turning to others and counseling professionals if needed can help nurses stay focused while acknowledging and honoring the challenges of providing end-of-life care on a daily basis.
This career path is one that offers great rewards and hospice nurses are often remembered as a steady presence in a chaotic time.
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.
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