Long, Carol O. PhD, RN, FPCN
Communication is complex. It is a 2-way process, contingent upon human interaction to send and receive messages. Messages are verbal and nonverbal and both rely on the interpretation of the sender and receiver. One of the most important components of communication is listening.1 Listening includes not only hearing the verbal message but interpreting nonverbal messages. The gestures, tone of voice, and inflection, through the physical representation of the message by the sender, is evaluated and understood by the person receiving the message. Communication styles vary across individuals, families, communities, and societies. As such, communication is strongly influenced by culture.
Culture is frequently equated to differences among race, ethnicity, or religious affiliation; however, this is a narrow view. Culture is the complex whole. It reflects an ideational system of shared ideas, values, concepts, rules, and meaning about life.2–4 Culture includes the knowledge, beliefs, art, morals, law, customs, and other capabilities and habits acquired by members of a society. Communication is socially constructed within societal and cultural norms. Communication is influenced by a person’s age, race, religion or spiritual beliefs, and personal and family experiences. Rules of communication emerge from a cultural context. These rules include the nature or purpose of communication and how people actually communicate verbal and nonverbal messages.
The cultural context of communication is an important aspect in palliative care. Best practices in communication skills can promote comfort and hope while diminishing suffering and distress. Effective communication is essential for individuals to make informed decisions about their healthcare and life planning and these skills are vitally important in palliative and end-of-life care practice.1,5 The healthcare practitioner and interdisciplinary team require essential competencies in this area.
The purpose of this paper is to describe the significance of communication within a cultural context for adults with cancer receiving palliative care. The Purnell Model for Cultural Competence provides a theoretical framework for this discussion. Practical recommendations and best practices for establishing, improving, and maintaining positive verbal and nonverbal communication is provided to assist healthcare professionals in mobilizing culturally competent communication in palliative care for adults with cancer.
COMMUNICATION AND CULTURE
Communication is one of 12 domains in The Purnell Model for Cultural Competence.6 This organizing framework helps clinicians understand the nuances of culture and practices to assure culturally competent care. There are several key elements in the communication domain. First is knowledge of the person’s primary language and dialect, which addresses the potential need for translation and interpreter services. Another is the consideration of the person’s voice volume and tone, which relays not only words but emotion. Thus, it is also important to explore contextual speech patterns for the person such as intonation, voice volume, and actual word usage.
The second element is cultural communication patterns. Cultural communication patterns include the person’s verbal and nonverbal communication. It also includes the choice and degree of disclosure, the permission of touch, boundaries of personal space, the use of gestures, facial expressions, the permissibility of eye contact, and preferred greetings. Patterns may also include who talks with whom and who defers to whom, especially in decision-making. Verbal communication reveals a person’s willingness to divulge thoughts, feelings, and ideas.7 Nonverbal communication relays emotions and attitudes. Therefore, it is important to assess and address verbal and nonverbal patterns and preferences when interacting with the person and his or her family.
The third element is determining temporal relationships, which include the person’s view of time and references to the past, present, and future. Some individuals may be focused on the past, others engaged in the present, whereas others may be strictly oriented to the future. For some, there may be mixed orientations across time. Health beliefs can interplay with temporal relationships. Past history, current relationships, present healthcare planning and goals for the future are intertwined and emerge throughout communication between healthcare providers and the person with cancer.
Culturally competent communication skills that address these elements are necessary in palliative care. Recently, the American Society of Clinical Oncology called for individualized patient care through improved communication, goal identification, and care planning for persons with advanced cancer.8 The American Cancer Society goals for 2015 include improved quality of life and informed decision-making.9 A quick search on the National Cancer Institute website reveals over 11,000 documents and references on communication. Numerous textbooks on culture and healthcare provide information on various cultural groups and insight into care across the lifespan but do not typically include extensive information on palliative or end-of-life care and the interplay of essential communication skills. There is a tremendous need for information about culturally competent communication in palliative care for the adult with cancer.
Healthcare professionals need to be aware of how cultural determinants influence a person’s role within their family structure, their health beliefs, and how a diagnosis of cancer may affect decisions regarding life planning, life goals, and end-of-life preferences. Ethical principles, healthcare decision-making, truth telling, role expectations, life values, medical terminology, and disclosure are culturally interpreted.10–15 Accordingly, it is necessary for healthcare professionals to ascertain if full disclosure regarding diagnosis and prognosis is acceptable.14 For example, conflict may arise if healthcare providers insist on full disclosure of the cancer diagnosis and prognosis. Some cultures do not want to know of a terminal illness or when death is near. This presents a cultural and ethical dilemma. Re-examining and reframing autonomy can assist the person in determining how much he or she desires to know about his or her diagnosis and prognosis. If the person is asked and chooses to designate a family member to make decisions and receive all information, then the person’s rights have been respected and cultural preferences honored.
Cultural communication competency requires the healthcare provider to assess the role and engagement of the family in the person’s care and decision-making. Doing so also respects confidentiality. Family care conferences can be instrumental in strengthening communication.16 Professionals may ask the family to select one person to serve as the key contact for information.17 Maintaining open lines of communication conveys trust, openness, and sincerity.
Medical language, in general, can be confusing for the person with cancer. Terms such as “DNR,” “Withhold, Withdraw and Discontinue Treatment,” which are frequently used in palliative and end-of-life care settings, can be easily misinterpreted as terminating all caregiving, which would not be the case. This may lead to feelings of abandonment when aggressive care is no longer instituted, resulting in suffering, isolation, and distress. Using clear, easily understood lay terms can mitigate communication difficulties overall.15
Excellent communication skills are an essential competency for all healthcare professionals. These skills become extremely important when individuals are faced with a life-threatening illness, such as cancer, and when palliative and end-of-life care is introduced into the continuum of care. Perhaps no other domain is as complex and interrelated as communication. Correspondingly, culturally competent communication skills are necessary in healthcare settings so that quality of care is promoted and the opportunities for distress are minimized.
COMMUNICATION SKILLS AND BEST PRACTICES
This section identifies 10 ways healthcare providers can assess and address person and family communication needs within the cultural context. These strategies promote positive communication with an overall goal of maximizing quality healthcare and minimizing distress, suffering, and conflict. When these measures are used collectively, positive outcomes can be anticipated.
1. Show respect by assessing the person’s primary language and dialect; secure an interpreter for the person, if needed and determine additional persons who will be included in information and decisions.18,19 Solicit baseline information. Determine how the person prefers to be called. Determine which family members, if any, should be included in information sharing and decision-making. Sample questions include: “What do you want to know about your condition?”, “Whom should we talk to about your treatments and outcomes?”, “Who is the spokesperson for decisions (eg, the person, family member, or community leader)?” Document these findings in the assessment and use this information in the care-planning process.
2. Conduct person-centered interviews through active and reflective listening.20 Active listening includes hearing, understanding, retaining, analyzing, and evaluating information. Active listening will help guide questions. Refrain from asking too many questions. When listening, demonstrate engagement through positive body language. Use direct eye contact, if culturally appropriate. Assure that the environment or milieu is conducive to open and honest communication, such as in a private location.15 End conversations by reflecting and restating the essential content and always ask if there are additional questions or concerns. Reaffirm your intent to honor and respect the person’s choices and plans.
3. Be “present” and “join the journey.” Know yourself and your level of comfort in addressing the humanness of illness and distress. Recognize the possibility for growth during difficult times by exploring the willingness of the person and family to share thoughts, feelings, and ideas.7 Do this by “joining the journey.” Joining the journey is person-directed care; clinicians join the journey by helping the person and his or her family meet realistic goals of care when facing a changing and uncertain future. It is important to listen to their stories, their goals, and their life dreams. Also recognize the interpretation of time; how long it may take to make decisions, the time needed to complete their life’s role, and the imminence of death. Reaffirm commitment to quality of life in all domains: physical, psychological, social, and spiritual and convey these messages when conversing with the person and family members. If agreeable, initiate family care conferences to identify and track goals and open lines of communication related to the cancer diagnosis, prognosis, and treatment plan.21 Show empathy and compassion. Be quiet and reflective during silent times.22
4. Provide maximum support in assessing and addressing uncomfortable or painful symptoms characteristic of the cancer disease process, side effects of treatment, and progression of the disease at the end of life. Reaffirm goals of care and revisit strategies to assure maximum comfort and freedom from distress. Incorporate the person’s preferred healing practices and healing traditions.11 Demonstrate respect and acceptance, displaying genuine sincerity through verbal communication and body language. Tell the person you are there for him or her as much as necessary. Refer to hospice early to support a “good death.”
5. Determine the person’s learning style and provide education in all aspects of physical, psychological, and spiritual self-care, as appropriate. Knowing how the person learns is critical when self-care is included in a treatment plan. Ask outright how the person learns best. Determine auditory versus visual learning styles and assess if there are any motor-sensory or cognitive deficits. If there are sensory deficits, determine alternate means to address educational needs. Incorporate cognitive, affective, and psychomotor approaches to learning that complement the person’s preferred learning style. Provide education to the person and family. Consider small “sound bytes” of information. Anticipate what the person and family will need information about related to medical decision-making. Supplement oral communication with visual teaching materials. Ask persons and family members whether they would like educational materials in the native language and whether they prefer written materials or audiotapes/videotapes. Provide praise and encouragement frequently.
6. Demonstrate respect and dignity by assessing and addressing all aspects of nonverbal communication. Be attentive to nonverbal communication and the cultural context of time orientation, body language, spatial distance or boundaries, touch, and eye contact. Body language should convey acceptance, interest, and support that is congruent with the person’s cultural background. Convey information by providing supportive care and compassion at eye level and in an unhurried and quiet location. Use empathy to determine the person’s comfort with personal space and touch and use integrative methods to promote closeness, sincerity, and caring, such as massage or holding hands, if culturally acceptable and appropriate.
7. Determine how the person interprets the meaning of life for him or her, what is important, and how life can be maximized during their cancer journey. Identify ways the person can maintain a positive outlook and hope. Review the goals of care and modify the plan of care as conditions change. Determine ways to empower and engage the person/family to collaboratively meet goals of care. Reaffirm with the person that his or her life has meaning. Help the person to focus on pleasant past memories and current joy. Recognize the essence of symbolic language, life review, and explore positive connections to past memories or hope for the future. Develop strategies to involve all team members in the implementation of the care plan that supports goals of care.
8. Assess spirituality and incorporate findings in the care-planning process.23 Identify the person’s healing or spiritual practices that support healing and peace. Include traditional healing practices into the palliative care plan. Openly inquire or explore the potential for physical, emotional, or spiritual suffering and distress. If able, provide support for practices, rituals, books, music, or reading that is meaningful. Use pastoral care teams and chaplaincy or community services to assist the person achieve serenity and comfort in their cancer journey.
9. Show respect, convey hope, acknowledge the person’s values, and encourage questions. Practice privacy. Know when to step in and when to back away. Be nonintrusive and aware of boundaries. Be respectful of cultural differences related to decision-making, fostering hope, truth telling, and the degree of disclosure.24,25 Recognize symptoms of loss and grief and refer to interdisciplinary team members for assistance. Provide support through honest communication and ask questions to reaffirm and appraise if goals of care are being attained.
10. Anticipate times when communication may be difficult, such as breaking bad news, or informing the person he or she is dying, and be proactive in addressing potential needs of the person and family.5,26–29 When conflict occurs, be prepared to address it. Ascertain the person’s desire for disclosure and if full disclosure is acceptable.14 Avoid technical medical terminology and jargon that could be confusing or misinterpreted. Attend to the emotional needs of the person and family.30 Conduct family meetings to share information and plan care.31 Assure that the person’s individual goals and preferences for care, as in his or her advance directives, are elicited and acted upon. Help families to communicate last wishes at end of life such as “I love you; I forgive you; Please forgive me, Thank you, and Goodbye.”32 Sometimes families need “permission” to say goodbye and to “let go,” thereby allowing the person to die. Secure help from interdisciplinary team members in all aspects of the person’s treatment plan to anticipate and address needs.
In conclusion, commitment to excellence in communication is necessary and is the foundation of excellent palliative care for individuals with cancer and their families. In addition, the healthcare providers must ascertain their own cultural awareness, knowledge, and competency in communication across different cultural groups. Positive communication strategies can achieve goal-oriented care, openness between healthcare providers and the person with cancer, reduce unnecessary suffering and conflict, and result in a “good death.” Integrating these 10 strategies and best practices can enhance culturally competent communication in palliative care for adults with cancer.
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