THE NURSES were distressed. They'd been caring for "Lettie," a 76-year-old African American woman, for 2 months. Every time they performed any care for her, she'd wince or start crying. Lettie was ventilator-dependent and bedbound with a tracheostomy, tube feedings, a methicillin-resistant Staphylococcus aureus infection, and a cascade of complications following a severe stroke.
"I wish her family would come to some sense and give the go-ahead to withdraw the vent. She's never going to get better and all we're doing is prolonging her agony," one of the nurses commented.
Yet Lettie's deeply religious family, hoping and praying for a miracle, continued to insist that they wanted "everything" done. Confronted by many different physicians and nurses telling them that Lettie's ventilator support should be withdrawn, the family had "fired" most of the staff. One advanced practice nurse, Karen, was the only healthcare professional they'd talk with about decisions regarding Lettie's care.
Karen's approach was different. Rather than telling them what they should do, she asked. Using concepts of cultural humility to guide her interactions with Lettie's family, Karen gained their trust.
What is cultural humility?
This concept is related to both cultural care and cultural competence, but with some important differences. The cultural care theory describes how cultural factors influence the way people view and experience health and illness, and the choices they make about healthcare treatments.1,2 This framework shows that many different cultural factors should be considered when we provide nursing care, including religion, economic and educational factors, and cultural values, beliefs, customs, and ways of living. As nurses, we should collaborate with patients and families to integrate their culture into patient care and develop mutual goals and the best approach to their care. This theory is often applied to distinct minority subgroups, yet it readily applies as a model of care for any individual, family, group, community, or institution.
Cultural competence, a related concept, is widely utilized in nursing and healthcare. It includes five key elements: cultural awareness, cultural knowledge, cultural skill, cultural encounters, and cultural desire.3 The nurse's motivation or desire to provide culturally responsive care is an essential key to his or her cultural competence.
While cultural competence is widely accepted in nursing, the term competence implies a set of knowledge and skills that can be readily achieved and mastered, such as taking a patient's BP. However, partnering effectively with patients and families from diverse backgrounds requires more than knowledge and clinical skill. It also requires an attitude of openness and a willingness to listen, to learn, to collaborate, and to negotiate. This attitude is the difference that we see when cultural humility is practiced.
Examining Lettie's case, the unit nurse manager found that the clinicians who'd recommended ventilator withdrawal and had been "fired" by the family were culturally competent as defined by the hospital. They'd been through the required diversity training and passed a cultural competency quiz. When they were questioned about the case, they said they weren't surprised about the conflict they were encountering. One young physician said "African-American families typically want 'everything done' because they have a history of being disenfranchised and having poor access to care." Another said, "These patients often have strong religious beliefs, hoping for a miracle even when the situation is futile."
While these team members were culturally competent, demonstrating knowledge and skills, their attitudes were based on assumptions and stereotypical beliefs. They conveyed an unspoken message to the family about their superiority as "the experts." This attitude explains why they failed to communicate effectively with the patient's family.
A better way: Cultural humility
Cultural humility is a process of inquisitiveness, self-reflection, critiquing, and lifelong learning. In contrast to the idea of cultural competence, cultural humility is never mastered-it's an ongoing process, shaped by every encounter we have with every person, as long as we maintain an open mind and heart.
The concept of cultural humility was developed in 1998 by two female physicians to guide medical education.4 It was recently defined in the following way: "In a world where power imbalances exist, cultural humility is a process of openness, self-awareness, being egoless, and incorporating self-reflection and critique after willingly interacting with diverse individuals."5
As nurses, our obligation and duty is to partner with, advocate for, and empower patients and families during the most vulnerable moments of their lives. To do this effectively, we need to be willing to sit down with them, be present, and listen, especially when they're facing difficult decisions.
In addition, we need to be aware of our own biases and withhold our own judgment about what the patient and family say and choose. Our job is to inform, facilitate, and advocate. It's not to make decisions for them.
When patients and families make a decision, we then need to follow through, with their permission, to integrate what we learn from them into the interprofessional care plan and then advocate for them. And we need to do this even when it's hard.
When we as nurses feel distressed, as were the nurses caring for Lettie, we want to do something based on what we believe is best. It can be easy to judge those who make decisions we don't agree with. But this is a mistake.
Lettie's nurses closed the door on partnership with her family because they judged. They didn't believe a miracle was possible. They allowed their disapproval, fueled by their own distress, to communicate an unspoken message to the family that they were foolish to keep praying and hoping. They acted superior, and then the family didn't trust them. No surprise.
Karen's approach was different. In the face of wanting "everything done" and "hoping for a miracle," Karen endeavored to learn from the family what this meant to them. She explored their ideas about alternative outcomes if the hoped-for miracle didn't happen.
Taking a "Yes, and..." approach can help support those hoping for a miracle: "Yes, I hope for that too. And what else do you hope for?" This approach conveys an open mind and an accepting attitude, reinforcing trust and partnership, while also helping patients and families move toward acceptance of other outcomes.6
Keys to cultural humility
So how can you practice cultural humility in your work with patients and families facing difficult end-of-life decisions?
* Be open and inquisitive. Learn from the patient and family about what's important to them and what must be avoided, so you can honor their requests at the end of life. Go in with an open heart and mind to provide quality care that aligns with their preferences whenever possible.
* Be self-aware. Do you judge patients or families who want something different than what you believe is "best" for them? Our biases, values, and assumptions are often unconscious-things we don't even recognize until we look closely at our thoughts and actions.
* Be aware of others. Cultural humility is a two-way street; a partnership. While we need to do our part, we also need to realize that the patient and family may be influenced by deeply held beliefs or biases. Historical trauma, societal pressures, disenfranchisement, and personal experiences can be barriers to an effective nurse-patient partnership. For example, Karen learned that Lettie's family had held deeply rooted negative beliefs about the hospital after her teenage grandson died there years earlier.
* Be egoless. Expect and welcome diversity of thought and expression. Recognize that conflict is a natural part of life, especially when people fear losing their loved ones. Be aware of your personal feelings and reactions in different situations. Identify your "triggers" so you can avoid becoming defensive or asserting yourself inappropriately when you feel threatened. Instead, exude humility and genuine curiosity. Be acutely aware of both verbal and nonverbal communication. Be aware of power imbalances. Level the playing field and give the patient and family a voice and control.
* Self-reflect. Critically evaluate your interactions with your patient. What went well? What could have been improved? You will make mistakes, so learn from them and find ways to improve moving forward.
* Embrace lifelong learning. It's far better to ask patients and families than to assume you know all the answers. Be up-front about your desire to know what they want, need, and value. Allow them to teach you. Show them that you value their expertise, and use what you've learned in planning and implementing their care.
Moving toward shared goals
In Lettie's case, Karen used cultural humility to guide her approach to working with the family, thus gaining their trust. Although Karen believed that withdrawing the ventilator and allowing a peaceful death was the best option for Lettie, she didn't impose her own opinions and biases on the family.
Instead, she asked the family what they felt was best for Lettie. The family continued to state that they believed in prayer, and that all things happening were "God's will." As Karen explored their beliefs and feelings, she found that the family understood that Lettie was indeed reaching the end of her life, but they felt pressured to make a decision. They also felt their dependence on a higher power for guidance hadn't been acknowledged or respected.
When Karen learned this, she assured the family that their cultural values, experiences, and beliefs played an important role in Lettie's overall care, and she communicated this with the team, promoting their understanding and helping the team and family move toward common understanding and shared goals. She also helped the providers understand cultural humility and helped them integrate this in future interactions with Lettie's family and others.
In the end, after much prayer, family meetings, and private talks with Karen, the family decided that they no longer wanted to watch Lettie suffer under these conditions. They determined that it was indeed "God's will" to allow Lettie to pass on peacefully. Lettie's ventilator was withdrawn on a Saturday morning and she peacefully took her final breaths in the presence of her family, pastor, and Karen. Through this experience, the family discovered that like them, the healthcare team had Lettie's best interest at heart.
REFERENCES
1. Leininger M. Culture care theory: a major contribution to advance transcultural nursing knowledge and practices. J Transcult Nurs. 2002;13(3):189-192. [Context Link]
2. Leininger M. Overview of Leininger's theory of culture care diversity and universality. 2008. http://www.madeleine-leininger.com/cc/overview.pdf. [Context Link]
3. Campinha-Bacote J. The process of cultural competence in the delivery of healthcare services: a model of care. J Transcult Nurs. 2002;13(3):181-184. [Context Link]
4. Tervalon M, Murray-Garcia J. Cultural humility versus cultural competence: a critical distinction in defining physician training outcomes in multicultural education. J Health Care Poor Underserved. 1998;9(2):117-125. [Context Link]
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6. Drews M. Hope in advanced cancer. Presentation at Meriter Hospital, Madison, WI. 2016. [Context Link]
RESOURCES
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U.S. Department of Health & Human Services, Office of Minority Health. The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: a blueprint for advancing and sustaining CLAS policy and practice. 2013. https://www.thinkculturalhealth.hhs.gov/content/clas.asp.