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Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians.
Methods
A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data.
Results
Community-based and patient focus group participants (N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer (N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician–patient relationship.
Significance of results
An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.
We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.
Method
Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.
Result
Participants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.
Significance of results
The literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.
Most patients diagnosed with lung cancer present with advanced stage disease and have a poor chance of long-term survival. Despite the advantages of hospice care for lung cancer patients, many are enrolled late in the course of their illness or not at all. We sought to identify reasons for this pattern.
Method:
A list of perceived barriers to hospice enrollment was generated and used to create two self-administered surveys, one for physicians and one for caregivers. After focus group testing, the finalized instruments were mailed to physicians in South Carolina and to caregivers of lung cancer patients who died under hospice care with a local hospice between 2000 and 2004.
Results:
Fifty-three caregivers and 273 physicians responded to the survey. From the caregivers' perspectives, leading reasons for deferred hospice enrollment included patients' unanticipated rapid transition from well to sick and a belief that hospice means giving up hope. From the physicians' perspectives, impediments to earlier hospice enrollment included patients and caregivers overestimating survival from lung cancer and an (incorrect) assumption that patients need to be “DNR/DNI” prior to hospice enrollment.
Significance of results:
Lung cancer patients may benefit from earlier introduction to the concepts of hospice care and more education regarding prognosis so that an easier transition in goals of care could be achieved. A smaller proportion of lung cancer patients may benefit from earlier hospice enrollment.
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