"Lost to Follow-up": Ethnic Disparities in Continuity of Hospice Care at the End of Life

Kapo, Jennifer; Macmoran, Holly; Casarett, David

doi:10.1089/jpm.2005.8.603

Cited by 26 publications

(22 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Minorities are less likely to have advance directives [8–10], are more likely to receive high intensity care at the end of life [11, 12], and are less likely to receive care consistent with stated preferences [13, 14]. In addition, rates of hospice utilization are lower and rates of hospice disenrollment higher for minorities [15–17]. Although the great majority of these studies have focused on African American and, to a lesser degree Hispanic minorities, limited data available from other racial/ethnic groups support similar findings [2, 7].…”

Section: Introductionmentioning

confidence: 99%

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

Lee

Long

Curtis

et al. 2016

Journal of Pain and Symptom Management

View full text Add to dashboard Cite

Context Racial and ethnic differences in end-of-life care may be attributable to both patient preferences and healthcare disparities. Identifying factors that differentiate preferences from disparities may enhance end-of-life care for critically ill patients and their families. Objectives To understand the association of minority race/ethnicity and education with family ratings of the quality of dying and death, taking into consideration possible markers of patient and family preferences for end-of-life care as mediators of this association. Methods Data were obtained from 15 ICUs participating in a cluster-randomized trial of a palliative care intervention. Family members of decedents completed self-report surveys evaluating quality of dying. We used regression analyses to identify associations between race/ethnicity, education and quality of dying ratings. We then used path analyses to investigate whether advance directives and life-sustaining treatment acted as mediators between patient characteristics and ratings of quality of dying. Results Family members returned 1290 surveys for 2850 decedents. Patient and family minority race/ethnicity were both associated with lower ratings of quality of dying. Presence of a living will and dying in the setting of full support mediated the relationship between patient race and family ratings; patient race exerted an indirect, rather than direct, effect on quality of dying. Family minority race had a direct effect on lower ratings of quality of dying. Neither patient nor family education was associated with quality of dying. Conclusion Minority race/ethnicity was associated with lower family ratings of quality of dying. This association was mediated by factors that may be markers of patient and family preferences (living will, death in the setting of full support); family member minority race/ethnicity was directly associated with lower ratings of quality of dying. Our findings generate hypothesized pathways that require future evaluation.

show abstract

Section: Introductionmentioning

confidence: 99%

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

Lee

Long

Curtis

et al. 2016

Journal of Pain and Symptom Management

View full text Add to dashboard Cite

show abstract

“…Although we reached saturation of the data, we might have heard different themes from participants who were not knowledgeable about hospice, had negative attitudes towards it, were in denial about their clinical conditions, or were from different ethnic, cultural, or religious groups. [20][21][22][23]27 Lastly, participating hospice organizations did not record the number of patients to whom they sent introductory letters; therefore, we do not know what proportion of eligible patients are represented in our study.…”

Section: Discussionmentioning

confidence: 99%

“…7,[11][12][13]18 Additionally, patients' cultural, religious, and/or ethnic backgrounds may impact or even preclude the use of hospice services. [19][20][21][22][23][24][25][26][27][28] Finally, some clinicians report that they don't discuss hospice with eligible patients until all non-palliative treatments have been exhausted. 29 To our knowledge, no study has directly asked patients and their families who had an admissions visit by a hospice organization why they hadn't enrolled.…”

Section: Introductionmentioning

confidence: 99%

Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?

et al. 2010

View full text Add to dashboard Cite

In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients' and families' perceptions and concerns.

show abstract

“…African Americans have less exposure to hospice information, are more likely to withdraw from hospice programs once enrolled (Johnson, Kuchibhatla, Tanis & Tulsky, 2008) and are less likely to return (Kapo, Macmoran & Casarett, 2005). Such decisions may be due to health literacy rather than race, with increasing health literacy resulting in greater acceptance of comfort care (Volandes, et al; 2008).…”

Section: What We Know: Receipt Of Carementioning

confidence: 99%

Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go

Evans

Ume

2012

Nursing Outlook

View full text Add to dashboard Cite

Background Although health disparities are well documented, the extent to which they affect end of life care is unknown. Limited research funding leads to sparse and often contradictory palliative care literature, with few studies on causal mechanisms. Purpose The purpose of this article is to explore the psychosocial, cultural and spiritual health disparities existing in palliative and end of life care with the goal of identifying future research needs. Method To determine knowledge gaps related to health disparities in psychosocial, cultural, and spiritual aspects of end of life care we draw upon recent literature from multiple databases. Discussion Although there are few data, we do know minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end of life care than hospice allows. Conclusion Future research should include a search for theoretical and causal mechanisms; prospective longitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions.

show abstract

"Lost to Follow-up": Ethnic Disparities in Continuity of Hospice Care at the End of Life

Cited by 26 publications

References 28 publications

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?

Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go

Contact Info

Product

Resources

About