Little end-of-life planning occurs among ethnic minorities with severe cardiovascular illnesses.
Aim:
The purpose of this study was to explore end-of-life preferences and determine the presence of signed end-of-life advanced directives.
Methods:
Thirty ethnic minority patients volunteered for an open-ended question interview. Content analysis was used to summarize responses into themes using patients’ terms.
Findings:
Five themes emerged: (a) importance of family involvement in care at end of life; (b) being pain free (or pain controlled) at the end of life; (c) having a comfortable environment for death was desired; (d) wanting no procedures for prolonging life; and (e) desiring a relationship with a professional for end-of-life decision making (reported as inconsistently available). New unique findings were related to concerns about multiple and repeatedly rotating professionals not allowing these ethnic patients end-of-life discussions and fear that signing forms would lead to deportation. Overall, 50% of the participants had signed standard advanced directives as requested upon entry to the home care agency.
Conclusions:
Most of these very ill patients did readily discuss these sensitive issues with the research nurse. Cardiovascular training in end-of-life care should include sensitivity to ethnic and cultural preferences and competencies in interviewing on sensitive topics.
DunlaySMSwetzKMMuellerPS. Advance directives in community patients with heart failure. Circ Cardiovasc Qual Outcomes2012; 5: 283–289.
2.
HauptmanPJGoodlinSJLopatinR. Characteristics of patients hospitalized with acute decompensated heart failure who are referred for hospice care. Arch Int Med2007; 167: 1990–1997.
3.
JaarsmaTBeattieJMRyderM. Palliative care in heart failure: A position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail2009; 11: 433–443.
4.
TildenVCorlessIDahlinC. Advance care planning as an urgent public health concern. Nurs Outlook2011; 59: 55–56.
GoodlinSJHauptmanPJArnoldR. Consensus statement: Palliative and supportive care in advanced heart failure. J Card Fail2004; 10: 200–209.
9.
CatherineCR. What you need to know about culturally and linguistically appropriate services. Conn Med2010; 74: 241–242.
10.
BullockK. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care2011; 7: 83–98.
11.
DeSanto-MadeyaSNilssonMLoggersET. Associations between United States acculturation and the end-of-life experience of caregivers of patients with advanced cancer. J Palliat Med2009; 12: 1143–1149.
EvansBCUmeE. Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go. Nurs Outlook2012; 60: 370–375.
14.
BraunUBeythRFordM. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med2008; 23: 267–274.
15.
CarrD. Racial differences in end-of-life planning: Why don’t blacks and latinos prepare for the inevitable?Omega2011; 63: 1–20.
16.
LackanNAEschbachKStimpsonJP. Ethnic differences in in-hospital place of death among older adults in California: effects of individual and contextual characteristics and medical resource supply. Med Care2009; 47: 138–145.
17.
MackJWPaulkMEViswanathK. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med2010; 170: 1533–1540.
18.
CoonDRubertMSolanoN. Well-being, appraisal, and coping in Latina and Caucasian female dementia caregivers: Findings from the REACH study. Aging Ment Health2004; 8: 330–345.
19.
JohnsonKSKuchibhatlaMTulskyJA. What explains racial differences in the use of advance directives and attitudes toward hospice care?J Am Geriatr Soc2008; 56: 1953–1958.
20.
HenrikssonAArestedtK. Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study. Palliat Med2013; 27: 639–646.
21.
FormigaFOlmedoCLopez-SotoA. Dying in hospital of terminal heart failure or severe dementia: The circumstances associated with death and the opinions of caregivers. Palliat Med2007; 21: 35–40.
22.
SetoguchiSGlynnRJStedmanM. Hospice, opiates, and acute care service use among the elderly before death from heart failure or cancer. Am Heart J2010; 160: 139–144.
23.
DowneyLEngelbergRACurtisJR. Shared priorities for the end-of-life period. J Pain Symptom Manage2009; 37: 175–188.
24.
EzenwaMOAmeringerSWardSE. Racial and ethnic disparities in pain management in the United States. J Nurs Scholarsh2006; 38: 225–233.
SmithC. Midrange empirically verified model: Caregiving and efficiency theoretical basis for nursing. In: MelanieMcEwenWillsEvelyn M. Theoretical Basis for Nursing. 2nd ed. Philadelphia: Lippincott Williams, & Wilkins, 2006, pp. 90–94.
28.
SchulzRHebertRBoernerK. Bereavement after caregiving. Geriatrics2008; 63: 20–22.
29.
Bibbins-DomingoKPletcherMJLinF. Racial differences in incident heart failure among young adults. N Engl J Med2009; 360: 1179–1190.
30.
PiamjariyakulUSmithCEWerkowitchM. Part I: Heart failure home management: Patients, multidisciplinary healthcare professionals and family caregivers perspectives. Appl Nurs Res2012: 25: 239–245.
LincolnYSGubaEG. Naturalistic inquiry. Sage: Beverly Hills, California: Sage, 1985.
33.
RichardsNIngletonCGardinerC. Awareness contexts revisited: Indeterminacy in initiating discussions at the end-of-life. J Advanced Nursing2013; 69: 2654–2664.
34.
CarrionIV. Communicating terminal diagnoses to Hispanic patients. Palliat Support Care2010; 8: 117–123.
35.
WashingtonKTBickel-SwensonDStephensN. Barriers to hospice use among African Americans: A systematic review. Health Soc Work2008; 33: 267–274.
36.
KaniVKirkpatrickJN. Ethical challenges in advanced heart failure. Curr Opin Support Palliat Care2013; 7: 21–28.
37.
PiamjariyakulURussellCSmithCE. The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung2013; 42: 32–39.
