Perceptions About Hospice From a Community-Based Pilot Study

Dussen, Daniel Van; Culler, Krystal L.; Cagle, John G.

doi:10.1177/1049909110394339

Cited by 26 publications

(31 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…For example, in one U.S. study, nearly three-quarters of those who had heard of palliative care associated it with end-of-life care and less than 10% mentioned that it could be employed at any point in the illness [26]. Similarly, people believe that hospice care is “only about death” or is equivalent to “giving up” [36]. As palliative care is often conflated with hospice, and awareness of hospice is higher than awareness of palliative care [26], these negative beliefs about hospice might extend to palliative care.…”

Section: Introductionmentioning

confidence: 99%

Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample

et al. 2019

View full text Add to dashboard Cite

Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care following subsequent illness diagnosis. We explored knowledge and beliefs about palliative care among the general public using nationally-representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care ( n = 1,162, M age = 51.8, 64% female) were queried on knowledge and beliefs. We examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding “don’t know” to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond “don’t know,” but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). Findings suggest a need to improve awareness and attitudes about palliative care.

show abstract

Section: Introductionmentioning

confidence: 99%

Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample

et al. 2019

View full text Add to dashboard Cite

show abstract

“…This finding is consistent with other studies exploring the barriers to hospice enrollment. 12,13,40 The hospice providers in our study were especially vocal about the time spent explaining insurance benefits to potential enrollees. Although Medicare, Medicaid, most private insurers, and the Veterans Administration cover most if not all the costs associated with hospice, this vital fact is not successfully communicated to patients.…”

Section: Discussionmentioning

confidence: 99%

“…However, our findings are consistent with the evidence reported in other studies investigating perspectives of hospice care. 12,13,32,34 To combat the effect of our subjectivity, we employed a team-based analytic process and were very mindful to both bracket our biases around underutilization of hospice during analysis and to state these perspectives in the introduction of this report. Despite these limitations, we feel our study illuminated clear decision needs that could be acted upon in future work.…”

Section: Limitationsmentioning

confidence: 99%

“…12 For example, the belief that hospice care is unaffordable is pervasive despite the fact that most payers cover hospice services. 12,13 Families and caregivers fear enrolling their loved ones in hospice is equivalent to institutionalizing them, even though 80% of hospice care occurs at home and those enrolled in hospice are more likely to die at home. 12,14,15 Enrolling in hospice is often viewed as "giving up," despite evidence that hospice enrollees and their loved ones report a sense of hope, relief, and improved quality of life resulting from the care provided.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Tate

Venechuk

Brereton

et al. 2019

Am J Hosp Palliat Care

View full text Add to dashboard Cite

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.

show abstract

“…Findings from community-based studies suggest public attitudes toward hospice are generally favorable (Catt et al, 2005;Van Dussen, Culler, & Cagle, 2011). Low levels of familiarity with palliative care, however, suggest that additional education is needed to improve knowledge of palliative care.…”

Section: Discussionmentioning

confidence: 99%

Measuring Attitudes About End-of-Life Care: Evaluation of a Modified Version of the Hospice Philosophy Scale

et al. 2018

Self Cite

View full text Add to dashboard Cite

The Hospice Philosophy Scale (HPS) is the only scaled instrument that measures health professionals’ attitudes about end-of-life care consistent with the hospice philosophy. This study tested the properties of a modified version of the HPS to provide preliminary validation data on internal consistency, convergent validity, and factorability in a broad population of adults. A cross-sectional telephone survey designed to assess the general population’s attitudes regarding hospice use was administered. exploratory factor analysis elicited an eight-item instrument (HPS-8). The HPS-8 produced a Cronbach’s alpha of .73 and demonstrated sufficient convergent validity, including positive associations with a scale measuring the importance of relevant end-of-life issues ( r = .41, p < .001), a personal preference for hospice (ρ = .36, p < .001), and, among those who had experienced hospice care, satisfaction with hospice care (ρ = .28, p < .01). Our evidence suggests the HPS-8 is a reliable and valid instrument for use with a general adult population.

show abstract

Perceptions About Hospice From a Community-Based Pilot Study

Cited by 26 publications

References 16 publications

Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample

Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample

“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Measuring Attitudes About End-of-Life Care: Evaluation of a Modified Version of the Hospice Philosophy Scale

Contact Info

Product

Resources

About