Sage Journals: Discover world-class research

Abstract

Context:

Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public’s understanding of hospice.

Objectives:

To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics.

Methods:

A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice.

Results:

123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice.

Conclusion:

Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound – and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.

Keywords

hospice knowledge end of life preference for hospice myths and misconceptions about hospice attitudes and beliefs Medicare Hospice Benefit

Get full access to this article

View all access options for this article.

References

National Hospice and Palliative Care Organization. Fast Facts and Figures: Hospice Care in America. 2013 Edition. Alexandria, VA: National Hospice and Palliative Care Organization; 2013:1–18.

Centers for Medicare & Medicaid Services. Hospice Conditions of Participation Final Rule. Federal Register Vol. 73 No. 109; 2008. http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf. Accessed April 24, 2013.

Christakis

Iwashyna

. The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med. 2003;57(3):465–475.

Miceli

Mylod

. Satisfaction of families using end-of-life care: current successes and challenges in the hospice this questionnaire to reflect the thinking of the industry. Am J Hosp Palliat Care. 2003;20(5):360–370.

Harrison

Ford

Wilson

. The impact of hospice programs on U.S. hospitals. Nurs Econ. 2005:23(2):78–90.

Carrion

Park

Lee

. Hospice use among African-Americans, Asians, Hispanics and Whites: implications for practice. Am J Hosp Palliat Med. 2012;29(2):12–117.

Cohen

. Racial/ethnic disparities in hospice care: a systematic review. J Palliat Med. 2008;11(5):763–768.

Washington

Bickel-Swenson

Stephens

. Barriers to hospice use among African Americans: a systematic review. Health Soc Work. 2008;33(4):267–274.

Greiner

Perera

Ahluwalia

. Hospice usage by minorities in the last year of life: results from the National Mortality Followback Survey. J Am Geriatr Soc. 2003;51(7):970–978.

10.

Smith

Earle

McCarthy

. Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009;57(1):153–158. doi:10.1111/j.1532-5415.2008.02081.x.

11.

Cagle

Kovacs

. Caregivers of cancer patients: perceptions of preparedness and the need for support during hospice care. J Gerontol Soc Work. 2011;54(1):92–115.

12.

Johnson

Kuchibhatla

Tulsky

. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriat Soc. 2008;56(10):1953–1958.

13.

Casarett

Crowley

Stevenson

Xie

Teno

. Making difficult decisions about hospice enrollment: what do patients and families want to know? J Am Geriat Soc. 2005;53(2):249–254.

14.

Carlson

MDA

Morrison

Bradley

. Improving access to hospice care: informing the debate. J Palliat Med. 2008;11(3):438–443.

15.

Duffy

Jackson

Schim

Ronis

Fowler

. Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. J Am Geriat Soc. 2006;54(1):150–157.

16.

Melvin

. Patients’ and families’ misperceptions about hospice and palliative care: listen as they speak. J Hosp Palliat Nurs. 2010;12(2):107–115.

17.

Chung

Essex

Samson

. Does caregiver knowledge matter for hospice enrollment and beyond? Pilot study of minority hospice patients. Am J Hospice Palliat Med. 2009:26(3):165–171.

18.

Cagle

Lamantia

Williams

Pek

Edwards

. Preference for hospice among older adults: The roles of uncertainty, spirituality, gender and race. Paper presented at: The Gerontological Society of America, 63rd Annual Scientific Meeting; November 20-24, 2010; New Orleans, LA.

19.

Van Dussen

Culler

Cagle

. Perceptions about hospice from a community-based pilot study: lessons and findings. Am J Hospice Palliat Med. 2011;28(6):418–423.

20.

Born

Greiner

Sylvia

Butler

Ahluwalia

. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7(2):247–256.

21.

Kempf

Remington

. New challenges for telephone survey research in the twenty-first century. Annu Rev Publ Health. 2007;28:113–26.

22.

Webb

Tucker

. Young adults’ opinions about hospice and home death. J Palliat Med. 2009;12(4):337–342.

23.

Gerbino

. Burnout Among Hospice Social Workers [unpublished dissertation]. New York: New York University, School of Social Work; 1994.

24.

Becker

. Oncology social workers’ attitudes toward hospice care and referral behavior Health Soc Work. 2004;29(1):36–45. doi:10.1093/hsw/29.1.36.

25.

Carrion

Cagle

Van Dussen

Culler

Hong

. Knowledge about hospice care and beliefs about pain management: exploring differences between Hispanics and non-Hispanics. Am J Hospice Palliat Med. 2015;32(6):647–53.

26.

Carrion

. When do Latinos use hospice services? Studying the utilization of hospice services by Hispanics/Latinos. Soc Work Health Care. 2010;49(3):197–210. doi:10.1080/00981380903493038.

27.

Johnson

Kuchibhatla

Tulsky

. Racial differences in self-reported exposure to information about hospice care. J Palliat Med. 2009;12(10):921–927. doi:10.1089/jpm.2009.0066.

28.

Moone

Cagle

. An analysis of end-of-life content in aging network conference proceedings. Gerontol Geriatr Educ. 2009;30(2):130–145. doi:10.1080/02701960902911307.

Knowledge About Hospice

Abstract

Context:

Objectives:

Methods:

Results:

Conclusion:

Keywords

Get full access to this article

References