Hostname: page-component-76fb5796d-skm99 Total loading time: 0 Render date: 2024-04-25T16:44:31.963Z Has data issue: false hasContentIssue false
  • English
  • Français

What do family caregivers know about palliative care? Results from a national survey

Published online by Cambridge University Press:  08 April 2019

J. Nicholas Dionne-Odom Open the ORCID record for J. Nicholas Dionne-Odom [Opens in a new window] ,
Katherine A. Ornstein  and
Erin E. Kent Open the ORCID record for Erin E. Kent [Opens in a new window]
J. Nicholas Dionne-Odom*
Affiliation:
School of Nursing, University of Alabama at Birmingham (UAB), Birmingham, AL Center for Palliative and Supportive Care, UAB Health System, Birmingham, AL
Katherine A. Ornstein
Affiliation:
Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
Erin E. Kent
Affiliation:
Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control & Population Science, National Cancer Institute, Bethesda, MD ICF International, Fairfax, VA
*
Author for correspondence: J. Nicholas Dionne-Odom, School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, NB 485J, Birmingham, AL 35294. E-mail: dionneod@uab.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.

Method

Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).

Result

More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”

Significance of results

One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Keywords

Family caregiverPalliative careHospiceCaregivingCarer
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 6 , December 2019 , pp. 643 - 649
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ahmed, N, Bestall, JC, Ahmedzai, SH, et al. (2004). Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative Medicine 18(6), 525–542. doi:10.1191/0269216304pm921oaGoogle Scholar
Barnato, AE, Anthony, DL, Skinner, J, et al. (2009) Racial and ethnic differences in preferences for end-of-life treatment. Journal of General Internal Medicine 24(6), 695–701. doi:10.1007/s11606-009-0952-6Google Scholar
Barnato, AE, Berhane, Z, Weissfeld, LA, et al. (2006) Racial variation in end-of-life intensive care use: A race or hospital effect? Health Services Research 41(6), 2219–2237. doi:10.1111/j.1475-6773.2006.00598.xGoogle Scholar
Brown, CE, Engelberg, RA, Sharma, R, et al. (2018) Race/ethnicity, socioeconomic status, and healthcare intensity at the end of life. Journal of Palliative Medicine 21(9), 1308–1316. doi:10.1089/jpm.2018.0011Google Scholar
Center to Advance Palliative Care (2011) 2011 public opinion research on palliative care. Available from https://www.fightcancer.org/sites/default/files/Palliative-Care-Consumer-Research-Findings-Summary.pdf.Google Scholar
Center to Advance Palliative Care (2015). America's care of serious illness: 2015 state-by-state report card on access to palliative care in our nation's hospitals. Available from https://reportcard.capc.org/wp-content/uploads/2015/08/CAPC-Report-Card-2015.pdf.Google Scholar
Claxton-Oldfield, S, Claxton-Oldfield, J and Rishchynski, G (2004) Understanding of the term “palliative care”: A Canadian survey. American Journal of Hospital Palliative Care 21(2), 105–110. doi:10.1177/104990910402100207Google Scholar
Dionne-Odom, J, Hooker, S, Bekelman, D, et al. (2017) Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review. Heart Failure Reviews 22(5):543–557.Google Scholar
Dumanovsky, T, Augustin, R, Rogers, M, et al. (2016) The growth of palliative care in U.S. hospitals: A status report. Journal of Palliative Medicine 19(1), 8–15. doi:10.1089/jpm.2015.0351Google Scholar
Faigle, R, Ziai, WC, Urrutia, VC, et al. (2017) Racial differences in palliative care use after stroke in majority-white, minority-serving, and racially integrated U.S. hospitals. Critical Care Medicine 45(12), 2046–2054. doi:10.1097/CCM.0000000000002762Google Scholar
Ferrell, BR, Temel, JS, Temin, S, et al. (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology 35(1), 96–112. doi:10.1200/JCO.2016.70.1474Google Scholar
Garvelink, MM, Ngangue, PA, Adekpedjou, R, et al. (2016) A synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones. Health Affairs (Millwood) 35(4), 619–626. doi:10.1377/hlthaff.2015.1375Google Scholar
Hesse, BW, Greenberg, AJ, Peterson, EB, et al. (2017) The Health Information National Trends Survey (HINTS): A resource for consumer engagement and health communication research. Studies in Health Technology and Informatics 240, 330–346.Google Scholar
Higginson, IJ, Gomes, B, Calanzani, N, et al. (2014) Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries. Palliative Medicine 28(2), 101–110. doi:10.1177/0269216313488989Google Scholar
Hirai, K, Kudo, T, Akiyama, M, et al. (2011) Public awareness, knowledge of availability, and readiness for cancer palliative care services: A population-based survey across four regions in Japan. Journal of Palliative Medicine 14(8), 918–922. doi:10.1089/jpm.2010.0529Google Scholar
Hoerger, M, Perry, L, Gramling, R, et al. (2017) Does educating patients about the early palliative care study increase preferences for outpatient palliative care? Findings from Project EMPOWER. Health Psychology 36(6), 538–548. doi:10.1037/hea0000489Google Scholar
Johnson, KS (2013) Racial and ethnic disparities in palliative care. Journal of Palliative Medicine 16(11), 1329–1334. doi:10.1089/jpm.2013.9468Google Scholar
Johnson, KS, Kuchibhatla, M, Payne, R, et al. (2013) Race and residence: Intercounty variation in black-white differences in hospice use. Journal of Pain and Symptom Management 46(5), 681–690. doi:10.1016/j.jpainsymman.2012.12.006Google Scholar
Johnson, KS, Kuchibhatla, M and Tulsky, JA (2008) What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatrics Society 56(10), 1953–1958. doi:10.1111/j.1532-5415.2008.01919.xGoogle Scholar
Kamal, AH, Bull, JH, Swetz, KM, et al. (2017) Future of the palliative care workforce: Preview to an impending crisis. American Journal of Medicine 130(2), 113–114. doi:10.1016/j.amjmed.2016.08.046Google Scholar
Koffman, J, Burke, G, Dias, A, et al. (2007) Demographic factors and awareness of palliative care and related services. Palliative Medicine 21(2), 145–153. doi:10.1177/0269216306074639Google Scholar
Kozlov, E, McDarby, M, Reid, MC, et al. (2018) Knowledge of palliative care among community-dwelling adults. American Journal of Hospital Palliative Care 35(4), 647–651. doi:10.1177/1049909117725725Google Scholar
Kozlov, E, Reid, MC and Carpenter, BD (2017) Improving patient knowledge of palliative care: A randomized controlled intervention study. Patient Education and Counseling 100(5), 1007–1011. doi:10.1016/j.pec.2016.12.022Google Scholar
Lamore, K, Montalescot, L and Untas, A (2017) Treatment decision-making in chronic diseases: What are the family members' roles, needs and attitudes? A systematic review. Patient Education and Counseling 100(12):2172–2181. doi:10.1016/j.pec.2017.08.003Google Scholar
Lustbader, D, Mudra, M, Romano, C, et al. (2016) The impact of a home-based palliative care program in an accountable care organization. Journal of Palliative Medicine 20(1):23–28. doi:10.1089/jpm.2016.0265Google Scholar
Manu, E, Mack-Biggs, TL, Vitale, CA, et al. (2013) Perceptions and attitudes about hospice and palliative care among community-dwelling older adults. American Journal of Hospital Palliative Care 30(2), 153–161. doi:10.1177/1049909112445305Google Scholar
Miller, SC, Lima, JC, Intrator, O, et al. (2016) Palliative care consultations in nursing homes and reductions in acute care use and potentially burdensome end-of-life transitions. Journal of the American Geriatrics Society 64(11):2280–2287. doi:10.1111/jgs.14469Google Scholar
Mularski, RA, Reinke, LF, Carrieri-Kohlman, V, et al. (2013) An official American Thoracic Society workshop report: Assessment and palliative management of dyspnea crisis. Annals of the American Thorac Society 10(5), S98–S106. doi:10.1513/AnnalsATS.201306-169STGoogle Scholar
National Academies of Sciences, Engineering, and Medicine (2016) Families caring for an aging America. Washington, DC: The National Academies Press.Google Scholar
National Alliance for Caregiving (2016) Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. Available from http://www.caregiving.org/wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf.Google Scholar
National Alliance for Caregiving and AARP Public Policy Institute (2015) Caregiving in the U.S. Available from https://www.caregiving.org/caregiving2015/.Google Scholar
National Cancer Institute (2018) Health Information National Trends Survey 5 (HINTS 5): Cycle 2 methodology report. Available from https://hints.cancer.gov/docs/methodologyreports/HINTS5_Cycle_2_Methodology_Report.pdf.Google Scholar
National Consensus Project for Quality Palliative Care (2018) Clinical practice guidelines for quality palliative care, 4th ed. Available from https://www.nationalcoalitionhpc.org/ncp.Google Scholar
Ornstein, KA, Kelley, AS, Bollens-Lund, E, et al. (2017) A National profile of end-of-life caregiving in the United States. Health Affairs (Millwood) 36(7), 1184–1192. doi:10.1377/hlthaff.2017.0134Google Scholar
Ornstein, KA, Schulz, R and Meier, DE (2017) Families caring for an aging America need palliative care. Journal of the American Geriatrics Society 65(4), 877–878. doi:10.1111/jgs.14785Google Scholar
Rizzuto, J and Aldridge, MD (2018) Racial disparities in hospice outcomes: A race or hospice-level effect? Journal of the American Geriatrics Society 66(2), 407–413. doi:10.1111/jgs.15228Google Scholar
Scibetta, C, Kerr, K, Mcguire, J, et al. (2016) The costs of waiting: Implications of the timing of palliative care consultation among a cohort of decedents at a comprehensive cancer center. Journal of Palliative Medicine 19(1), 69–75. doi:10.1089/jpm.2015.0119Google Scholar
Sharma, RK, Cameron, KA, Chmiel, JS, et al. (2015) Racial/ethnic differences in inpatient palliative care consultation for patients with advanced cancer. Journal of Clinical Oncology 33(32), 3802–3808. doi:10.1200/JCO.2015.61.6458Google Scholar
Shimizu, M, Nishimura, M, Ishii, Y, et al. (2016) Development and validation of scales for attitudes, self-reported practices, difficulties and knowledge among home care nurses providing palliative care. European Journal of Oncology Nursing 22, 8–22. doi:10.1016/j.ejon.2016.02.009Google Scholar
Temel, JS, Greer, JA, Muzikansky, A, et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine 363(8), 733–742. doi:10.1056/NEJMoa1000678Google Scholar
Willis, GB and Artino, AR (2013) What do our respondents think we're asking? Using cognitive interviewing to improve medical education surveys. Journal of Graduate Medical Education 5(3), 353–356. doi:10.4300/JGME-D-13-00154.1Google Scholar