The association of medical, social, and normative factors with the implementation of end-of-life care practices.
End-of-life care
Family caregivers
Palliative care
Socio-normative attitudes
Journal
Israel journal of health policy research
ISSN: 2045-4015
Titre abrégé: Isr J Health Policy Res
Pays: England
ID NLM: 101584158
Informations de publication
Date de publication:
09 Jan 2024
09 Jan 2024
Historique:
received:
29
06
2023
accepted:
29
12
2023
medline:
10
1
2024
pubmed:
10
1
2024
entrez:
9
1
2024
Statut:
epublish
Résumé
End-of-life (EoL) care practices (EoLCP) are procedures carried out at the EoL and bear directly on this stage in the patient's life. Public support of these practices in Israel is far from uniform. Previous studies show that while ∼30% of participants support artificial respiration or feeding of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. This study aimed to create a typology of six end-of-life care practices in Israel and assess the association of medical, social, and normative factors with the implementation of those practices. These practices included mechanical ventilation, artificial feeding, deep sedation, providing information to the patient and family caregivers, including family caregivers in EoL decision-making, and opting for death at home. This cross-sectional study was performed as an online survey of 605 adults aged 50 or more in Israel, of which ~ 50% (n = 297) reported supporting a dying terminally ill relative in the last 3 years. Participants were requested to provide their account of the EoL process of their relative dying from a terminal illness in several aspects, as well as the EoL care practices utilized by them. The accounts of the 297 interviewees who supported a dying relative reveal a varied EoL typology. The utilization of end-of-life care practices was associated with the socio-normative beliefs of family caregivers but not with their socioeconomic status. Strong correlations were found between family caregiver support for three key practices (mechanical ventilation, artificial feeding, and family involvement in EoL) and the actual utilization of these practices in the care of dying patients. The findings portray an important image of equity in the utilization of EoLCP in Israel, as the use of these practices was not associated with socioeconomic status. At the same time, the study found substantial diversity in family caregivers' preferences regarding EoL care practices use not related to socioeconomic status. We believe that differences in preferences that do not lead to problems with equity or other important societal values should be respected. Accordingly, policymakers and health system leaders should resist calls for legislation that would impose uniform EoL practices for all Israelis. Instead, they should take concrete steps to preserve and enhance the widespread current practice of practitioners to adapt EoL care to the varied needs and preferences of Israeli families and cultural, social, and religious subgroups. These steps should include providing frameworks and tools for family caregivers to support their loved ones close to their deaths, such as educational programs, seminars, supportive care before and during the end of life of their loved ones, etc.
Sections du résumé
BACKGROUND
BACKGROUND
End-of-life (EoL) care practices (EoLCP) are procedures carried out at the EoL and bear directly on this stage in the patient's life. Public support of these practices in Israel is far from uniform. Previous studies show that while ∼30% of participants support artificial respiration or feeding of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. This study aimed to create a typology of six end-of-life care practices in Israel and assess the association of medical, social, and normative factors with the implementation of those practices. These practices included mechanical ventilation, artificial feeding, deep sedation, providing information to the patient and family caregivers, including family caregivers in EoL decision-making, and opting for death at home.
METHODS
METHODS
This cross-sectional study was performed as an online survey of 605 adults aged 50 or more in Israel, of which ~ 50% (n = 297) reported supporting a dying terminally ill relative in the last 3 years. Participants were requested to provide their account of the EoL process of their relative dying from a terminal illness in several aspects, as well as the EoL care practices utilized by them.
RESULTS
RESULTS
The accounts of the 297 interviewees who supported a dying relative reveal a varied EoL typology. The utilization of end-of-life care practices was associated with the socio-normative beliefs of family caregivers but not with their socioeconomic status. Strong correlations were found between family caregiver support for three key practices (mechanical ventilation, artificial feeding, and family involvement in EoL) and the actual utilization of these practices in the care of dying patients.
CONCLUSIONS
CONCLUSIONS
The findings portray an important image of equity in the utilization of EoLCP in Israel, as the use of these practices was not associated with socioeconomic status. At the same time, the study found substantial diversity in family caregivers' preferences regarding EoL care practices use not related to socioeconomic status. We believe that differences in preferences that do not lead to problems with equity or other important societal values should be respected. Accordingly, policymakers and health system leaders should resist calls for legislation that would impose uniform EoL practices for all Israelis. Instead, they should take concrete steps to preserve and enhance the widespread current practice of practitioners to adapt EoL care to the varied needs and preferences of Israeli families and cultural, social, and religious subgroups. These steps should include providing frameworks and tools for family caregivers to support their loved ones close to their deaths, such as educational programs, seminars, supportive care before and during the end of life of their loved ones, etc.
Identifiants
pubmed: 38195649
doi: 10.1186/s13584-024-00589-w
pii: 10.1186/s13584-024-00589-w
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
3Subventions
Organisme : Israel National Institute for Health Policy Research
ID : A-6-2020
Informations de copyright
© 2024. The Author(s).
Références
Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. Redefining palliative care—a new consensus-based definition. J Pain Symptom Manag. 2020;60(4):754–64.
doi: 10.1016/j.jpainsymman.2020.04.027
Norton CK, Hobson G, Kulm E. Palliative and end-of-life care in the emergency department: guidelines for nurses. J Emerg Nurs. 2011;37(3):240–5.
doi: 10.1016/j.jen.2010.02.019
pubmed: 21550456
Aquino J, Crilly J, Ranse K. The end-of-life care practices of emergency care nurses and the factors that influence these practices: an integrative review. Int Emerg Nurs. 2022;63:101168.
doi: 10.1016/j.ienj.2022.101168
pubmed: 35584560
Chang H-T, Lin M-H, Chen C-K, Chen T-J, Hwang S-J. Aggressive end-of-life care and symptom relief treatments in terminally ill patients who had discussed withdrawal of mechanical ventilation: a hospital-based observational study. Am J Hospice Palliat Medicine®. 2020;37(11):897–903.
doi: 10.1177/1049909120906612
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.
doi: 10.1056/NEJMoa1000678
pubmed: 20818875
Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respiratory Medicine. 2014;2(12):979–87.
doi: 10.1016/S2213-2600(14)70226-7
pubmed: 25465642
Hoerger M, Wayser GR, Schwing G, Suzuki A, Perry LM. Impact of interdisciplinary outpatient specialty palliative care on survival and quality of life in adults with advanced cancer: a meta-analysis of randomized controlled trials. Ann Behav Med. 2019;53(7):674–85.
doi: 10.1093/abm/kay077
pubmed: 30265282
González-González AI, Schmucker C, Nothacker J, Nury E, Dinh TS, Brueckle M-S, et al. End-of-life care preferences of older patients with multimorbidity: a mixed methods systematic review. J Clin Med. 2020;10(1):91.
doi: 10.3390/jcm10010091
pubmed: 33383951
pmcid: 7795676
Luta X, Maessen M, Egger M, Stuck AE, Goodman D, Clough-Gorr KM. Measuring intensity of end-of-life care: a systematic review. PLoS ONE. 2015;10(4):e0123764.
doi: 10.1371/journal.pone.0123764
pubmed: 25875471
pmcid: 4396980
Hill AD, Stukel TA, Fu L, Scales DC, Laupacis A, Rubenfeld GD, et al. Trends in site of death and health care utilization at the end-of-life: a population-based cohort study. Can Med Assoc Open Access J. 2019;7(2):E306–E15.
Velan B, Ziv A, Kaplan G, Rubin C, Connelly Y, Karni T, et al. Truth-telling and doctor-assisted death as perceived by Israeli physicians. BMC Med Ethics. 2019;20(1):1–13.
doi: 10.1186/s12910-019-0350-5
Bodas M, Velan B, Kaplan G, Ziv A, Rubin C, Peleg K. Assisted life termination and truth telling to terminally ill patients—a cross-sectional study of public opinions in Israel. Isr J Health Policy Res. 2020;9(1):1–10.
doi: 10.1186/s13584-020-00419-9
CBS, Population. by Population Group, Religion, Sex and Age—Average 2019: CentralBureau of Statistics 2019. https://www.cbs.gov.il/he/publications/doclib/2020/2.shnatonpopulation/st02_03.pdf .
Sullivan KM, Dean A, Soe MM. OpenEpi: a web-based epidemiologic and statistical calculator for public health. Public Health Rep. 2009;124(3):471–4.
doi: 10.1177/003335490912400320
pubmed: 19445426
pmcid: 2663701
Tawil Y, Bodas M, Shaulov A, Ziv A, Kaplan G, Velan B. Agencies displayed by patients, medical teams, and caregivers at the end-of-life from the perspectives of family members—a qualitative study. OMEGA-Journal of Death and Dying. 2023. https://doi.org/10.1177/00302228231166736 .
doi: 10.1177/00302228231166736
Bodas M, Ziv A, Rubin C, Oberman B, Tawil Y, Shaulov A et al. Polarization in public attitudes toward end-of-life decisions in Israel–A cross-sectional study. Palliat Support Care. 2023:1–8. https://doi.org/10.1017/S1478951523000780
Abdel-Rahman N, Yoffe N, Siman-Tov M, Radomislensky I, Peleg K. Achieving ethnic equality in the Israel trauma healthcare system: the case of the elderly population. Isr J Health Policy Res. 2019;8(1):1–8.
doi: 10.1186/s13584-019-0294-8
Cohen-Manheim I, Radomislensky I, Siman-Tov M, Peleg K. Motorcycle-related head and neck injuries: increased risk among ethnic minorities. Isr J Health Policy Res. 2020;9(1):1–10.
doi: 10.1186/s13584-020-00428-8
Politzer E, Shmueli A, Avni S. The economic burden of health disparities related to socioeconomic status in Israel. Isr J Health Policy Res. 2019;8(1):1–16.
doi: 10.1186/s13584-019-0306-8
Abu-Qarn A, Lichtman-Sadot S. Can greater access to secondary health care decrease health inequality? Evidence from bus line introduction to arab towns in Israel. Econ Model. 2022;106:105695.
doi: 10.1016/j.econmod.2021.105695
Muhsen K, Green MS, Soskolne V, Neumark Y. Inequalities in non-communicable diseases between the major population groups in Israel: achievements and challenges. The Lancet. 2017;389(10088):2531–41.
doi: 10.1016/S0140-6736(17)30574-3
Adini B. Ethnic inequality within the elderly population in utilizing healthcare services. Isr J Health Policy Res. 2019;8:1–4.
doi: 10.1186/s13584-019-0311-y
McNamara B. Good enough death: autonomy and choice in Australian palliative care. Soc Sci Med. 2004;58(5):929–38.
doi: 10.1016/j.socscimed.2003.10.042
pubmed: 14732606
Payne R. Racially associated disparities in hospice and palliative care access: acknowledging the facts while addressing the opportunities to improve. J Palliat Med. 2016;19(2):131–3.
doi: 10.1089/jpm.2015.0475
pubmed: 26840847
Hsieh T-C, Zou G, Yeo YH, Zheng J, Kloss RA. Racial and socioeconomic factors associated with palliative care utilization in pancreatic cancer: an analysis of National Inpatient Sample. American Society of Clinical Oncology; 2022.
Mondor L, Wodchis WP, Tanuseputro P. Persistent socioeconomic inequalities in location of death and receipt of palliative care: a population-based cohort study. Palliat Med. 2020;34(10):1393–401.
doi: 10.1177/0269216320947964
pubmed: 32772809
Sullivan R, Ugalde A, Sinclair C, Breen LJ. Developing a research agenda for adult palliative care: a modified Delphi study. J Palliat Med. 2019;22(5):480–8.
doi: 10.1089/jpm.2018.0462
pubmed: 30461347
Falzarano F, Moxley J, Pillemer K, Czaja SJ. Family matters: cross-cultural differences in familism and caregiving outcomes. The Journals of Gerontology: Series B. 2022;77(7):1269–79.
doi: 10.1093/geronb/gbab160
Schwartz SJ. The applicability of familism to diverse ethnic groups: a preliminary study. J Soc Psychol. 2007;147(2):101–18.
doi: 10.3200/SOCP.147.2.101-118
pubmed: 17601075
Youn G, Knight BG, Jeong H-S, Benton D. Differences in familism values and caregiving outcomes among Korean, Korean American, and white American dementia caregivers. Psychol Aging. 1999;14(3):355.
doi: 10.1037/0882-7974.14.3.355
pubmed: 10509692
Fogiel-Bijaoui S, Rutlinger-Reiner R. Guest editors’ introduction: rethinking the family in Israel. Isr Stud Rev. 2013;28(2):vii–xii.
Mucchi-Faina A, Pacilli MG, Verma J. The two faces of familism: a cross-cultural research in India and Italy. Psychol Stud. 2010;55:365–73.
doi: 10.1007/s12646-010-0042-1
León M, Pavolini E. Social investment’or back to ‘familism’: the impact of the economic crisis on family and care policies in Italy and Spain. South Eur Soc Politics. 2014;19(3):353–69.
doi: 10.1080/13608746.2014.948603
Hansford L, Thomas F, Wyatt K. Poverty, choice and dying in the UK: a call to examine whether public health approaches to palliative care address the needs of low-income communities. Mortality. 2023;28(4):610-626. https://doi.org/10.1080/13576275.2022.2044299
Brezis M, Lahat Y, Frankel M, Rubinov A, Bohm D, Cohen MJ, et al. What can we learn from simulation-based training to improve skills for end-of-life care? Insights from a national project in Israel. Isr J Health Policy Res. 2017;6:1–9.
doi: 10.1186/s13584-017-0169-9
Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med. 2008;168(9):912–8.
doi: 10.1001/archinte.168.9.912
pubmed: 18474754
Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manag. 2002;24(1):17–31.
doi: 10.1016/S0885-3924(02)00419-0
Mayland C, Williams E, Ellershaw J. How well do current instruments using bereaved relatives’ views evaluate care for dying patients? Palliat Med. 2008;22(2):133–44.
doi: 10.1177/0269216307085742
pubmed: 18372378
Hales S, Zimmermann C, Rodin G. The quality of dying and death: a systematic review of measures. Palliat Med. 2010;24(2):127–44.
doi: 10.1177/0269216309351783
pubmed: 20085963
Zhang B, Nilsson ME, Prigerson HG. Factors important to patients’ quality of life at the end-of-life. Arch Intern Med. 2012;172(15):1133–42.
doi: 10.1001/archinternmed.2012.2364
pubmed: 22777380
pmcid: 3806298
Teno JM. Time: Toolkit of Instruments to Measure End-of-Life Care: Center for Gerontology and Health Care Research, Brown Medical School; 2005. http://www.chcr.brown.edu/pcoc/toolkit.htm .
Office for National Statistics NE. National Survey of Bereaved People (VOICES). : UK Data Service; 2016. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/methodologies/nationalbereavementsurveyvoicesqmi .
Sorek T, Ceobanu AM. Benjamin Netanyahu as a mobilizing symbol in ethno-class divisions among Jewish Israelis, 2009–2021. Ethnic and Racial Studies. 2022;45(10):1961–82.
doi: 10.1080/01419870.2021.1981968
Aronoff MJ. Political polarization: contradictory interpretations of Israeli reality. The Begin Era: Routledge; 2019. pp. 53–77.
Kahn DT, Björklund F, Hirschberger G. Why are our political rivals so blind to the problems facing society? Evidence that political leftists and rightists in Israel mentally construe collective threats differently. Peace Confl J Peace Psychol. 2021;27(3):426.
doi: 10.1037/pac0000567