Journal of palliative medicine
-
Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. ⋯ Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.
-
Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood. Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic. Design: Cross-sectional survey study. ⋯ Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay. Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.
-
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking. Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain. Design: A single-center cross-sectional survey. ⋯ These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.
-
Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation. Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators. Design: A statewide initiative to improve ACP setting/subjects-trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). ⋯ Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured. Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
-
Background: As the number of geriatric trauma patients rises, end-of-life planning is of increased importance. A community-wide initiative to increase advance care planning was undertaken in the 1990s, resulting in a high rate (85%) of completed advance directives (ADs). Objectives: To assess the impact of ADs on quality measures of care and outcomes for elderly trauma patients. To determine if the historically high rate of completed ADs in the community applied to the trauma patient population. Design: A single trauma center's registry was retrospectively reviewed. ⋯ Although 30-day mortality was higher in patients with ADs versus without (21% vs. 15%; p = 0.03), this difference was not significant on case-control analysis (20% vs. 15%, p = 0.31). No difference was identified in LOS, ICU days, ventilator days, or charges. Conclusions: Presence of an AD was not associated with any difference in 30-day mortality, LOS, or hospital charges. More widespread efforts at AD education and documentation are necessary, particularly in the setting of trauma.