Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - Physicians Interacting With Family Caregivers
Patients and caregivers may present with different needs, making it difficult to decide whose needs take priority. This situation is especially common when it comes to truth-telling, with family members asking the health care team to keep bad news a secret from the cancer patient, or vice versa.
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Cultural differences can profoundly affect communication with the patient and family. For example, some Asian Americans believe that talking about death or dying is bad luck. Such differences complicate discussions about prognosis, treatment choices, and even the use of terms such as chemotherapy, radiation, and hospice. Keeping a life-threatening diagnosis a secret from the patient and avoiding discussions of disease progression further add to a caregiver's sense of burden, isolation, and responsibility. A cross-sectional study was conducted in Taiwan to determine the frequency and difficulty of decisions encountered by bereaved caregivers of terminally ill patients who had died in one university hospital. In Asian cultures, it is not uncommon for health care providers to refrain from telling the complete truth to patients, especially in the case of terminal disease, with the responsibility often left to family caregivers. In this study, truth-telling was the most common difficult decision experienced by family caregivers. Health care providers should be aware of such cultural differences from the Western notion of truth-telling to provide culturally competent care to such patients.
Breaking Bad News
Delivering bad news to patients and caregivers is an essential skill for oncologists, palliative care physicians, and other members of the health care team. To do this well, the physician should:
Become comfortable with end-of-life issues.
Understand the range of options available for families.
Let caregivers know what can, rather than what cannot, be done for the patient.
Share and receive information in a compassionate manner.
Oncotalk is a teaching program designed to improve communication skills for postgraduate medical trainees. The program covers essential communication skills such as the "Ask-Tell-Ask" principle and the "Tell me more" principle, and communication tasks are linked to the illness trajectory:
The first visit.
Making anticancer treatment decisions.
Offering clinical trials.
Completing anticancer therapy.
Discontinuing palliative chemotherapy.
Responding to Difficult Situations
Family caregivers may believe that their concerns are inevitable and their needs cannot be met. In an ideal setting, the social worker or psychologist should be present at meetings with family caregivers to assist with follow-up and support.
Just as a patient's family can appoint a spokesperson, the oncology team can designate a family liaison. However, most family caregivers prefer direct access to the treating oncologist; in fact, active listening by physicians may reduce caregiver burden. One study found that caregivers experienced less burden and distress if they felt that the treating physician listened to their needs and opinions. The oncology team should maintain frequent communication to ensure that messages and other information delivered to the family are consistent and that treatment goals are clear to all concerned.