IMPORTANCE As online reviews of health care become increasingly integral to patient decisionmaking, understanding their content can help health care practices identify and address patient concerns.OBJECTIVE To identify the most frequently cited complaints in negative (ie, 1-star) online reviews of hospice agencies across the United States. DESIGN, SETTING, AND PARTICIPANTSThis qualitative study conducted a thematic analysis of online reviews of US hospice agencies posted between August 2011 and July 2019. The sample was selected from a Hospice Analytics database. For each state, 1 for-profit (n = 50) and 1 nonprofit (n = 50) hospice agency were randomly selected from the category of extra-large hospice agencies (ie, serving >200 patients/d) in the database. Data analysis was conducted from MAIN OUTCOMES AND MEASURES Reviews were analyzed to identify the most prevalent concerns expressed by reviewers. RESULTSOf 100 hospice agencies in the study sample, 67 (67.0%) had 1-star reviews; 33 (49.3%) were for-profit facilities and 34 (50.7%) were nonprofit facilities. Of 137 unique reviews, 68 (49.6%) were for for-profit facilities and 69 (50.4%) were for nonprofit facilities. A total of 5 themes emerged during the coding and analytic process, as follows: discordant expectations, suboptimal communication, quality of care, misperceptions about the role of hospice, and the meaning of a good death. The first 3 themes were categorized as actionable criticisms, which are variables hospice organizations could change. The remaining 2 themes were categorized as unactionable criticisms, which are factors that would require larger systematic changes to address. For both for-profit and nonprofit hospice agencies, quality of care was the most frequently commented-on theme (117 of 212 comments [55.2%]). For-profit hospice agencies received more communication-related comments overall (34 of 130 [26.2%] vs 9 of 82 [11.0%]), while nonprofit hospice agencies received more comments about the role of hospice (23 of 33 [69.7%] vs 19 of 31 [61.3%]) and the quality of death (16 [48.5%] vs 12 [38.7%]). CONCLUSIONS AND RELEVANCE Regarding actionable criticisms, hospice agencies could examinetheir current practices, given that reviewers described these issues as negatively affecting the already difficult experience of losing a loved one. The findings indicated that patients and their families, friends, and caregivers require in-depth instruction and guidance on what they can expect from hospice staff, hospice services, and the dying process. Several criticisms identified in this study (continued) Key PointsQuestion What are the most common criticisms found in negative (ie, 1-star) online reviews of hospice agencies? Findings In this qualitative study of 137 unique online reviews of 67 hospice agencies, 2 domains of criticisms emerged: actionable criticisms, which are variables hospice organizations can change and include the themes of expectations, communication, and quality of care, and unactionable criticisms, which are variables that requ...
Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients’ and families’ understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
Background: Growing evidence for coronary stents in patients with stable coronary artery disease (CAD) suggests that the benefits of stents are uncertain. The goal of this study was to assess patients' informational needs and how patients react to information about the uncertain benefit of stents to CAD patients. Methods: Semi-structured qualitative interviews (N=20) were conducted with patients with stable CAD who received a recent stent. Data were coded and analyzed using a mixed inductive-deductive approach. Results: Some patients mistakenly believed that the purpose of their stent was to prevent a future heart attack, and few were previously aware of the uncertain benefit. Nearly all patients perceived positive outcomes from their procedure, even if their symptoms persisted. Some patients had difficulty accepting evidence that stents may not reduce the risk of heart attack or reliably improve symptoms. Nonetheless, patients still expressed a desire to receive new information about the uncertain benefits of stents and wanted to have received this information early in their care. Conclusion:Many patients with stable CAD do not understand the intended benefit of coronary stents and want to be informed of the evidence of uncertain benefit of coronary stents, even if this would not change their decision. Improved communication and patient education tools are needed to better inform patients. An intervention providing patients with this information early has the potential to solve these problems.
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