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Communication in Cancer Care (PDQ®)

Health Professional Version

Factors Affecting Communication

Age, Race, Ethnicity, and Communication

An important area of communication problems centers on the differences in communication between doctors and older women versus doctors and younger women. Better patient-physician communication has been associated, particularly for older and disadvantaged patients, with the following:[1]

  • Patient choice about treatment.
  • Satisfaction with care.
  • Quality of cancer care.

A study examining health care disparities in older patients with breast cancer found that older age and Latina ethnicity were negatively associated with physician provision of interactive informational support; these patients received less interactive informational support from their physicians than did younger patients.[2] The authors concluded that improving the quality of communication at the level of patient-physician interaction could be an important avenue to reducing age and ethnic group treatment disparities among patients with breast cancer.[2]

Research suggests that older patients with breast cancer who receive less-than-definitive care have higher recurrence rates and higher mortality rates than other women and remain at greater risk for receiving less-than-definitive treatment. In one investigation, patients aged 80 years and older reported receiving markedly less information about treatment options than did younger patients, were less likely to state that they were given a choice of breast cancer treatment, and were less likely to initiate communication or to perceive that their surgeons initiated communication.[1] Another study [3] also highlighted the importance of communication between older patients with breast cancer and their physicians. Investigators found that although older women obtained information regarding breast cancer from different sources, they relied most heavily on their physicians for information. Despite this expectation, the knowledge about the importance of patient-physician communication, and the increasing use of breast-conserving surgery (BCS), older breast cancer patients undergo BCS less frequently than do younger women. In addition, within older populations, radiation therapy is sometimes omitted after BCS. Even though many factors could explain these patterns of care,[4] it is possible that the quality of communication between older patients and their oncologists contributes to the observed treatment variability—although the traditional medical standard of care might account for physicians who do not recommend BCS,[4] in addition to a possible geographic preference for recommended treatments.[5] Nevertheless, a study has shown that discussing treatment options with physicians increased the probability of an older woman receiving definitive primary breast cancer therapy (defined as modified radical mastectomy or BCS with axillary dissection and radiation therapy).[1]

Several studies have investigated the relationship between race and communication in oncology. One study of 405 newly diagnosed cancer patients reported that physicians spent more time in relationship building with white patients than with nonwhite patients.[6] Another study found that black patients with lung cancer received significantly less information from their doctors and were less likely to prompt their doctors for information.[7] These patients also had lower postvisit trust in their physicians.[8] Clearly, this is an area of neglected importance in communication skills.

Socioeconomic Status

Younger and more educated patients are most likely to take an active role in medical decision making. Some researchers have observed that low-income women who are not as well educated do not communicate as well with their physicians about their treatment preferences or concerns and fears.[4,9-11] Being unmarried, having a lower socioeconomic status, and having treatment options discussed less frequently are risk factors that, in addition to older age, predicted receiving conservative primary tumor therapy.[11] Limited financial resources have been shown to be a barrier to receiving radiation therapy after lumpectomy. Transportation to and from a radiation therapy facility is another impediment. Additionally, research data suggest that differences in physician-patient communication patterns could contribute to variance in BCS rates among income strata.

Influence of Culture/Ethnicity/Language

Using culturally appropriate approaches to communicating about cancer may lessen levels of distress for the patient and/or members of the patient's family. Developing an awareness of cross-cultural practices regarding cancer disclosure issues allows the clinician to become more sensitive to the expectations of culturally and individually diverse cancer patients. When discussing diagnoses and treatment options with patients from different cultures, it is important for clinicians to consider how to balance a commitment to frank discussion and a respect for the cultural values of the patient.[12]

In general, patients whose dominant culture is derived from a Western philosophy subscribe to certainty, predictability, control, and obtainable outcomes.[13] This culture has engendered an approach that fosters self-determination and autonomy in making treatment decisions.[14] This patient-centered society values having fully informed patients who make accurate assessments about their health as a cultural prerogative.[12] Western cultural assumptions exist about what is good and just in medical care. One such assumption is the principle of self-determination and its importance in enabling patients to make autonomous treatment decisions.[15]

On the other hand, patients in Italy, China, and Japan;[14] patients in Spain;[16] patients in Tanzania;[17] and Korean Americans and Mexican Americans believe that there is a positive value inherent in nondisclosure of diagnosis and of a terminal prognosis.[14-16] In the family-centered model of medical decision making, such as that found among Mexican Americans and Korean Americans, among Ethiopian refugees, and in Italy, autonomy is seen as isolating.[14,16] Patients with an Egyptian background believe that dignity, identity, and security are conferred by belonging to a family and dealing with illness within a family context.[18] Navajo culture provides another example of diverse cultural attitudes toward illness. Navajos feel that order and harmony are disrupted by receiving negative information;[14] receiving an unfavorable diagnosis and prognosis is seen as a curse.[16]

In some cultures, the negative stigma associated with the word cancer is so strong that the use of the word can be perceived as rude, disrespectful, and even causal. A study investigating the puzzling factors and solutions of family-related barriers to truthfulness with patients who have terminal cancer was conducted through a nationwide survey conducted in Taiwan. The results showed that families believe it is unnecessary to tell aged patients the truth, and patients can be happier without knowing the truth.[19] For Ethiopian refugees who are diagnosed with cancer, it is important to tell the family first but also important not to give unfavorable information at night so as to avoid the burden of a sleepless night.[16] An awareness of the use of nonverbal communication in some cultures and the psychosocial impact of terms such as cancer is helpful. Often, phrases such as malignant tumor or growth are less inflammatory and are more readily accepted,[16] as is approaching loaded topics indirectly. Thus, it is essential to assess and consider patients cultural beliefs when communicating with them about their cancer.

A study of the breast cancer experience of Asian American women [20] found that a lack of knowledge about breast cancer, cultural factors related to beliefs about illness, gender role and family obligations (e.g., self-sacrifice), and language barriers contributed to Asian American women’s apparent lack of active involvement in their care.

As described above, cultural background greatly influences many aspects of the communication process. Although some cross-cultural descriptive studies have been conducted, especially on the views about disclosure of the diagnosis, relatively little is known about the specific influence of culture on the interaction between patients and their health care practitioners. How cultural variables might affect the information patients want, patients’ preferred and assumed participatory styles, and other aspects of the interaction warrant future study.

The Patient’s Family

Families can help patients make better decisions about their care.[21] Some therefore believe that patient-centered approaches emphasizing patient autonomy in medical decision making should be shifted to family-centered approaches because most decision making in health care is carried out in the context of family care and obligation.

Health care professionals are valued when they establish a structured and ongoing dialogue with family members about the following:[22]

  • Treatment goals.
  • Plans of care.
  • Expectations regarding patient outcomes.

Caregivers report that specific and tailored direction is supportive and reduces the uncertainty they experience as they provide care.[22] Family caregivers must be considered an integral part of the advanced cancer care partnership.[22] In one investigation, being welcomed into the medical setting was a simple action that was greatly appreciated by caregivers and allowed them to move on with unfolding events.[23] In taking a legitimate place in the cancer scenario, caregivers may more easily attend to their own needs alongside those of the patient.[23] Ideally, however, the physician should check with the patient to determine his or her desires about the level of involvement that caretakers should have in making decisions.

(Refer to the PDQ summary on Family Caregivers in Cancer: Roles and Challenges for more information.)

Other Communication Barriers

Unless directly invited, many patients are often reluctant to ask important questions about their disease and its treatment. Some researchers have found that indirect cues signaling informational and emotional needs are far more common from patients than direct requests for information or support. Concomitantly, doctors readily respond to direct expressions of need but find it difficult to detect and respond to indirect behaviors cueing patient needs.

The indirect forms of communication that are particularly difficult for many doctors to detect and respond to include the following:[24]

  • Allusions.
  • Paraverbal expressions (e.g., auditory pitch and tone).
  • Nonverbal behaviors (e.g., facial expression and posture).

Patients may assume that their doctors will tell them whatever is relevant; others worry about appearing foolish if they reveal their ignorance by asking questions; and some feel guilty about taking too much of the busy doctor’s time.[25,26] In the absence of explicit discussion, physicians may make incorrect assumptions and unilateral decisions about patients’ information needs and preferences, incorrectly assessing their own information-giving behavior.[27] Other barriers to communication may include the multiple specialists that patients see; the multiple clinicians and others that the patient may see within the treatment team (e.g., physician, mid-level practitioner, nurse, billing office clerk, patient advocate); the challenges posed by variations in education level, cultural differences, and ethnicity; and the anxiety that often accompanies an initial or high-stakes interview (e.g., disclosure of restaging results), which may affect patient comprehension and understanding.

Nurses as Advocates for Patients and Their Families

Nurses play an important role in supporting patients through the crisis of cancer and play an important role in today’s multidisciplinary cancer team. They perform key functions at almost every stage of the cancer trajectory. Clinic and inpatient nurses are frequently the first clinical contacts for patients and family members and, through their initial interactions, set the tone for the support the patient will receive throughout his or her care. Nurses are important sources of information about procedures, treatments, and other aspects of patient care. Spending more time with the patient than do physician members of the treatment team, nurses are frequently the most trusted member of the cancer team when it comes to obtaining information, and they serve as advocates for the patient when important and sensitive questions such as “How bad is it?” or “How long do I have to live?” arise. Nurses must also attend to patient and family emotional needs after bad news is given and deal first with other emotionally draining situations, such as angry patients or family members or patients who are withdrawn and depressed. Advanced practice nurses provide direct patient care, often acting as physician extenders and managing much of the day-to-day care of the patient.

References

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  2. Maly RC, Leake B, Silliman RA: Health care disparities in older patients with breast carcinoma: informational support from physicians. Cancer 97 (6): 1517-27, 2003. [PUBMED Abstract]
  3. Silliman RA, Dukes KA, Sullivan LM, et al.: Breast cancer care in older women: sources of information, social support, and emotional health outcomes. Cancer 83 (4): 706-11, 1998. [PUBMED Abstract]
  4. Zuckerman DM: The need to improve informed consent for breast cancer patients. J Am Med Womens Assoc 55 (5): 285-9, 2000. [PUBMED Abstract]
  5. Nattinger AB, Gottlieb MS, Veum J, et al.: Geographic variation in the use of breast-conserving treatment for breast cancer. N Engl J Med 326 (17): 1102-7, 1992. [PUBMED Abstract]
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  7. Gordon HS, Street RL Jr, Sharf BF, et al.: Racial differences in doctors' information-giving and patients' participation. Cancer 107 (6): 1313-20, 2006. [PUBMED Abstract]
  8. Gordon HS, Street RL Jr, Sharf BF, et al.: Racial differences in trust and lung cancer patients' perceptions of physician communication. J Clin Oncol 24 (6): 904-9, 2006. [PUBMED Abstract]
  9. Degner LF, Kristjanson LJ, Bowman D, et al.: Information needs and decisional preferences in women with breast cancer. JAMA 277 (18): 1485-92, 1997. [PUBMED Abstract]
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  12. Hern HE Jr, Koenig BA, Moore LJ, et al.: The difference that culture can make in end-of-life decisionmaking. Camb Q Healthc Ethics 7 (1): 27-40, 1998. [PUBMED Abstract]
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  • Updated: August 20, 2014