Context. Lack of knowledge or misconceptions about palliative care (PC) can serve as barriers to accessing PC for seriously ill patients. Although self-reported rates of PC knowledge have been increasing, little is known about how self-reports relate to actual PC knowledge.Objective. To determine the prevalence of PC knowledge and the portion of those reporting they are knowledgeable have actual PC knowledge of basic PC principals.Methods. We used the Health Information National Trends Survey 5, Cycle 2, a nationally representative data set to describe the prevalence of self-reported PC knowledge. We conducted chi-squared test to compare self-rated PC knowledge level with actual knowledge. Finally, we ran a logistic regression to examine if self-reported knowledge level, age, and cancer history were associated with actual PC knowledge.Results. About 34% of participants self-reported having at least some knowledge of PC, and 41% of those reporting familiarities with PC were able to answer all three basic PC questions correctly. Rates of correct responses for cancer patients were similar (42%) to the general sample and older adults were lower (35%). Compared with those with less than a high school education, people with a bachelor's degree and post-baccalaureate degree had higher odds ratio (21.07 and 23.07, respectively) of actual understanding of PC.Conclusions. We found that self-reported PC knowledge may not reflect actual PC knowledge. Physicians should carefully explain PC when introducing it to patients. In addition, this PC information should be provided at a low literacy level to ensure widespread understanding of the service.
Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.
Introduction: Health care costs remain high at the end of life. It is not known if there is a relationship between advance directive (AD) completion and hospital out-ofpocket costs. This analysis investigated whether AD completion was associated with lower hospital out-of-pocket costs at end of life.Methods: We used Health and Retirement Study participants who died between 2000 and 2014 (N = 9228) to examine the association between AD completion status and hospital out-of-pocket spending in the last 2 years of life through the use of a two-part model controlling for socioeconomic status, death-related characteristics and health insurance coverage.Results: About 44% of decedents had completed ADs. Having an AD was significantly associated with $673 lower hospital out-of-pocket costs, with a higher magnitude of savings among younger decedents. Decedents who completed ADs 3 months or less before death had higher out-of-pocket costs ($1854 on average) than those who completed ADs more than 3 months before death ($1176 on average).Conclusions: AD completion was significantly associated with lower hospital out-ofpocket costs, with greater out-of-pocket savings among younger decedents. Early AD completers experienced lower costs than decedents who completed ADs closer to death.
Our results are consistent with those from related studies. Yelp reviewers focus on NH aspects that are not evaluated in most other NH rating systems. The federal Nursing Home Compare website, for instance, does not report measures of staff attitudes or the NH's physical setting. Rather, it reports measures of staffing levels and clinical processes and outcomes. We recommend that NH consumers consult both types of rating systems because they provide complementary information.
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