Elizabeth Lobb

Communicating With Realism and Hope: Incurable Cancer Patients' Views on the Disclosure of Prognosis

PURPOSE To identify preferences for the process of prognostic discussion among patients with incurable metastatic cancer and variables associated with those preferences. PATIENTS AND METHODS One hundred twenty-six (58%) of 218 patients invited onto the study participated. Eligible patients were the consecutive metastatic cancer patients of 30 oncologists, who were diagnosed within 6 weeks to 6 months before recruitment, over 18 years of age, and without known mental illness. Patients completed a postal survey measuring patient preferences for the manner of delivery of prognostic information, including how doctors might instill hope. RESULTS Ninety-eight percent of patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. Doctor behaviors rated the most hope giving included offering the most up to date treatment (90%), appearing to know all there is to know about the patients cancer (87%), and saying that pain will be controlled (87%). The majority of patients indicated that the doctor appearing to be nervous or uncomfortable (91%), giving the prognosis to the family first (87%), or using euphemisms (82%) would not facilitate hope. Factor analysis revealed six general styles and three hope factors; the most strongly endorsed styles were realism and individualized care and the expert/positive/collaborative approach. A range of demographic, psychological, and disease factors were associated with preferred general and hope-giving styles, including anxiety, information-seeking behavior, expected survival, and age. CONCLUSION The majority of patients preferred a realistic and individualized approach from the cancer specialist and detailed information when discussing prognosis.

Cancer Patient Preferences for Communication of Prognosis in the Metastatic Setting

PURPOSE To identify preferences for and predictors of prognostic information among patients with incurable metastatic cancer. PATIENTS AND METHODS One hundred twenty-six metastatic cancer patients seeing 30 oncologists at 12 outpatient clinics in New South Wales, Australia, participated in the study. Patients were diagnosed with incurable metastatic disease within 6 weeks to 6 months of recruitment. Patients completed a survey eliciting their preferences for prognostic information, including type, quantity, mode, and timing of presentation; anxiety and depression levels; and information and involvement preferences. RESULTS More than 95% of patients wanted information about side effects, symptoms, and treatment options. The majority wanted to know longest survival time with treatment (85%), 5-year survival rates (80%), and average survival (81%). Words and numbers were preferred over pie charts or graphs. Fifty-nine percent (59%) wanted to discuss expected survival when first diagnosed with metastatic disease. Thirty-eight percent and 44% wanted to negotiate when expected survival and dying, respectively, were discussed. Patients with higher depression scores were more likely to want to know shortest time to live without treatment (P =.047) and average survival (P =.049). Lower depression levels were significantly associated with never wanting to discuss expected survival (P =.03). Patients with an expected survival of years were more likely to want to discuss life expectancy when first diagnosed with metastases (P =.02). CONCLUSION Most metastatic cancer patients want detailed prognostic information but prefer to negotiate the extent, format, and timing of the information they receive from their oncologists.

Predictors of Complicated Grief: A Systematic Review of Empirical Studies

A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional designs, heterogeneous samples, high attrition, demographic differences between cases and controls, differences in length of time since death, and differences in types of death experienced. Notwithstanding these limitations, some consistent findings have emerged. Further research into conceptualizations of CG in terms of attachment theory and constructivist and cognitive-behavioral concepts of finding purpose and meaning after bereavement is warranted.

Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomes.

This longitudinal study aimed to document (i) the information-giving and patient-communication styles of clinical geneticists and genetic counsellors (consultants) in familial breast cancer clinics and (ii) assess the effect of these styles on womens knowledge, whether their expectations were met, satisfaction, risk perception and psychological status. A total of 158 women from high-risk breast cancer families completed self-report questionnaires at 2 weeks preconsultation and 4 weeks postconsultation. The consultations were audiotaped, transcribed and coded. Multivariate logistic regressions showed that discussing prophylactic mastectomy (P=0.00) and oophorectomy (P=0.01) led to women having significantly more expectations met; discussing genetic testing significantly decreased anxiety (P=0.03) and facilitating understanding significantly decreased depression (P=0.05). Receiving a summary letter of the consultation significantly lowered anxiety (P=0.01) and significantly increased the accuracy of perceived risk (P=0.02). Women whose consultant used more supportive communications experienced significantly more anxiety about breast cancer at the 4 weeks follow-up (P=0.00). These women were not significantly more anxious before genetic counselling. In conclusion, this study found that consultants vary in the amount of information they give and the way they communicate; and this variation can result in better or worse psychosocial outcomes. Greater use of supportive and counselling communications appeared to increase anxiety about breast cancer. Identifying methods to assist consultants to address emotional issues effectively may be helpful.

Assessment of the Content and Process of Genetic Counseling: A Critical Review of Empirical Studies

This article reviews studies that assessed the process and content of genetic counseling communication. A systematic search of the literature was undertaken of studies that audio- or videotaped genetic counseling sessions conducted by genetics health care providers and subjected them to communication analyses. A total of 18 studies (published in 34 articles) were identified that met the eligibility criteria. Studies show that providers speak more than clients, that a large proportion of communication is biomedical rather than psychosocial and that the teaching model of genetic counseling is widely implemented. Higher levels of counselor facilitation of understanding and empathic responses, lower levels of verbal dominance (ratio of counselor to client talk) and the provision of a summary letter of the consultation are associated with more positive client outcomes. Findings from these studies should be used as an evidence base for teaching and continuing education of genetic counseling providers.

Analyzing the process and content of genetic counseling in familial breast cancer consultations.

A detailed examination of the process of genetic counseling has been identified as a priority area for research by previous authors. This multicenter longitudinal study examined the process and content of genetic counseling in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight consultations with women unaffected and affected with breast cancer were audio taped and transcribed verbatim. A detailed coding system was developed. Clinical geneticists and genetic counselors demonstrated consistently good practice in giving detailed information on essential aspects related to familial breast cancer such as screening and management, genetic testing, breast cancer genetics, and prophylactic surgery. Eliciting emotional concerns and facilitating communication were found to be inconsistently present. As clinical practice guidelines and the general communication literature emphasize the importance of these factors, this is an area where training in or self-monitoring of such behaviors may assist consultants to further develop these skills.

Caring for someone with high-grade glioma: a time of rapid change for caregivers

Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.

Women’s preferences for discussion of prognosis in early breast cancer

Objectives To determine preference for prognostic information in women with early breast cancer.

A bridge between cultures: interpreters' perspectives of consultations with migrant oncology patients.

BackgroundMigration is increasing worldwide. In previous research into people with cancer from culturally and linguistically diverse backgrounds, interpreter accuracy, professionalism and continuity have emerged as key concerns for patients. Little is known about interpreters’ perceptions of their role and the challenges they face. This study aimed to obtain their perspective.MethodsThirty interpreters (Greek n = 7, Chinese n = 11, and Arabic n = 12) participated in four focus groups which were audio-taped, transcribed and analysed for themes using N-Vivo software.ResultsSkills as an interpreter were broadly perceived as conveying information accurately, being confidential and impartial. Three broad dilemmas faced by interpreters emerged: accuracy versus understanding; translating only versus cultural advocacy and sensitivity; and professionalism versus providing support. Some saw themselves as merely an accurate conduit of information, while others saw their role in broader terms, encompassing patient advocacy, cultural brokerage and provision of emotional support. Perceived challenges in their role included lack of continuity, managing their own emotions especially after bad news consultations, and managing diverse patient and family expectations. Training and support needs included medical terminology, communication and counselling skills and debriefing. Interpreters suggested that oncologists check on interpreter/patient’s language or dialect compatibility; use lay language and short sentences; and speak in the first person.ConclusionsResolving potential conflicts between information provision and advocacy is an important area of cross-cultural communication research. Further training and support is required to enhance interpreters’ competence in managing delicate situations from a professional, cultural and psychological perspective; and to assist doctors to collaborate with interpreters to ensure culturally competent communication. Ultimately, this will improve interpreters’ well-being and patient care.

Women’s preferences and consultants’ communication of risk in consultations about familial breast cancer: impact on patient outcomes

The risk information to be conveyed as part of expert counselling of women at increased risk for breast cancer potentially impacts on decision making about screening, prophylactic strategies, and psychological adjustment. Australian geneticists and genetic counsellors working in cancer genetics nominated risk counselling as the central feature of their work.1 Also, women attending genetic counselling expect to discuss their own and other family members’ risk.2–6 However, studies have consistently reported high levels of inaccurate risk perception in women at high risk, even after counselling, suggesting that risk counselling as currently practised in not optimal.7–10 The information to be conveyed about risk related to breast cancer is exceedingly complex. Statistics commonly presented to patients include population and individual risk, not only for breast cancer, but also for other cancers associated with BRCA1 and BRCA2 mutations, for example, ovarian cancer. Risk may be presented separately for different age groups, for men, and for those with an Ashkenazi Jewish background (which conveys a higher risk). The proportion of population risk attributable to germline mutations may be presented. Risk may be given for an unaffected person’s chance of developing breast cancer, or for an affected person’s chance of developing a second cancer. The risk estimate may apply to the next five years, the next 10 years, or to a lifetime. The probability that a family may have a germline breast cancer susceptibility gene mutation may be raised. Finally, the risk estimates for cancer in proven mutation carriers (and their broad confidence intervals) may be discussed, and the chance of the mutation being found through testing. The multitude of risk statistics possibly presented (sometimes in several formats) has the potential to leave the patient confused and distressed. Although previous studies have identified the type of information women with breast cancer …