Exceptional patients and communication in cancer care-are we missing another survival factor?

OBJECTIVE: There is increased awareness of the issue of exceptional survival beyond expectations among cancer patients with poor prognosis, and researchers are starting to look closely at this phenomenon. In this study, we explored the perceptions of these "exceptional patients" as to their understanding and insight into their unusual experience. METHODS: We used a qualitative approach consisting of in-depth, open-ended interviews with exceptional patients in two locations, Texas and Israel, from 2007 to 2014. The interviews were audio-recorded and qualitatively analyzed, and gave rise to illness narratives entailing detailed descriptions of patients experience over the course of their disease and treatment. A qualitative content analysis focusing on contextual meaning was utilized. RESULTS: Twenty-nine patients participated in our study. The mean years since diagnosis was 9.55 years (range, 4-23 years). All patients had received conventional treatment, including surgery, chemotherapy, and radiation therapy. One of the prevailing themes in these interviews was related to the patient-doctor relationship. Most participants mentioned that the support they received from one or more physicians was a crucial factor for their exceptional survival. CONCLUSION: The significance of patient-doctor relationship in cancer survival requires further research. This research is especially important as it adds to the current trend of patient centered care and points to the added value of relationship between health providers and patients. This relationship, as perceived by these exceptional patients, can be a factor that adds to improved survival in cancer care.

Exceptional patients: narratives of connections.

OBJECTIVE: This study sought to better understand the patient s perspective of the experience of recovery from cancer that appeared to defy medical prognoses. METHODS: Fourteen cases of medically verified exceptional outcomes were identified. A qualitative approach, employing long narrative interviews was used. Data was analyzed using a cross case thematic analytic approach. RESULTS: The major overarching theme was connections, both internal and external. Internal included connections with God or a higher power and with oneself. The external connections, the focus of this paper, included 1) personal connections with friends and family, 2) connections with the medical system: the physician, nurses and other staff, and 3) connections with other patients. They described the nature of these relationships and the importance of frequent contact with family and friends as providing significant emotional and instrumental support. They expressed confidence in receiving care from a reputable clinic, and with very little probing illustrated the importance of the relationship with their providers. They articulated the significance of the compassionate qualities of the physician and identified communication attributes of their physician that were important in establishing this connection. These attributes were demeanor, availability, honesty, sensitivity in the decision making process. They provided examples of positive connections with nurses and other staff as well as with other patients through their illness process. SIGNIFICANCE OF RESULTS: The importance of connections in these illness narratives was richly illustrated. These issues often are overlooked in clinical settings; yet they are of crucial importance to the health and well-being of the patients.

Activism among exceptional patients with cancer.

BACKGROUND: The "exceptional patients" with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients' accounts of their experience. MATERIALS AND METHODS: This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report. RESULTS: Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life. CONCLUSIONS: In this study, we found that activism was a major theme that was independently observed in both Israel and the U.S.A. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.

Integrative medicine consultation service in a comprehensive cancer center: findings and outcomes.

OBJECTIVES: This study portrays the characteristics of patients who attended an integrative oncology clinic at a large comprehensive cancer center and evaluated whether this service addressed patients' concerns about complementary and integrative medicine (CIM). METHODS: Patient information was collected prior to an integrative consultation, including demographics, previous use of CIM, and primary reason for requesting the consultation. Concerns and outcomes were measured using the Measure Yourself Concerns and Well-being (MYCaW) Scale at the consultation and then again at follow-up (6-12 weeks later). Patients met with a physician for an integrative consultation that included a discussion of nutrition, supplements, physical activity, useful complementary therapies, and the mind-body-spirit connection. RESULTS: A total of 238 patients were referred for consultation regarding the integration of CIM into their care. The majority of participants were female (60%, n = 143), and the mean age was 56 years (range, 21-90 years), with all major cancer types represented. Patients' leading concerns were related to "What else can I do?" and "How can I better cope?" Although distressed over these concerns at the initial consultation, intense distress (5-6 out of 6 on the MYCaW scale) was reduced to less than half (31%) by the follow-up visit. Additional qualitative data revealed that patients value the process of obtaining reliable information that empowers them to be more involved in managing their care. CONCLUSIONS: Integrative medicine consultations at a large comprehensive cancer center appear to provide some benefit in addressing patients' concerns about CIM use.