Original Article
Evaluation of Hospice Care by Family Members of Hispanic and Non-Hispanic Patients
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(3) 313-321 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114526969 ajhpm.sagepub.com
Abbie Kirkendall, PhD1, Jason M. Holland, PhD2, Jennifer R. Keene, PhD3, and Nora Luna, MEd4
Abstract The Hispanic older adult population is increasing rapidly and past research suggests that this demographic group underutilizes hospice services, highlighting the need to improve our understanding of their needs in end of life. This study relied upon information from the family evaluation of hospice care survey provided by 2980 caregivers, 152 of whom cared for a Hispanic patient and 2828 who cared for a non-Hispanic patient. Caregivers of Hispanic patients were more likely to report that hospice was inconsistent with the patient’s wishes, and that they received more attention than desired for emotional issues. Caregivers of Hispanic patients were also more likely to express that emotional/spiritual forms of support were insufficient. Similar levels of satisfaction were reported for caregivers of Hispanics and non-Hispanics regarding dignity/respect, information received, care coordination, and overall satisfaction. Keywords end of life, satisfaction, Hispanic, hospice, caregivers, emotional support
Introduction In 2008, the older Hispanic population in the United States was 2.7 million and it is expected to increase to 17 million by 2050.1 As the proportion of Hispanic older adults increases so too will the need for culturally sensitive end-of-life care. Currently, Hispanics are less likely to utilize hospice services than their non-Hispanic counterparts. For example, in 2011, 93.8% of hospice patients were of non-Hispanic origin compared to only 6.2% who were Hispanic.2 The increasing ethnic diversity among seniors combined with Hispanic patients’ underuse of hospice services highlights the importance of gaining a greater understanding of Hispanic patients’ and caregivers’ needs at the end of life in order to better serve them. Previous research of Hispanics’ hospice utilization suggests that their underuse relates to factors including language barriers, lack of insurance, greater desire for life-sustaining treatments, preference for informal sources of support over professional services, mistrust of the medical system, low referral rates, and concerns related to revealing their immigration status.3-7 Additional research suggests that Hispanics are likely to have lower levels of satisfaction when compared to caucasians who were receiving hospice services.8 Hospices around the country provide caregiver satisfaction surveys to monitor quality and to identify areas of needed improvement.9 The most popular survey used is the family evaluation of hospice care (FEHC), which assesses the caregiver’s level of satisfaction several months after their loved one has died. The FEHC covers the following areas: the caregivers’
perception of the fulfillment of patient’s wishes for medical treatment; the caregivers’ level of satisfaction with coordination of care, information received, and emotional support before and after death; and the caregivers’ perception of their overall satisfaction.9-11 Studies have reported that a positive relationship exists between fulfilling patients’ wishes and overall satisfaction with hospice care.12 There is reason to believe that Hispanics may experience lower levels of satisfaction with the fulfillment of patient’s wishes at the end of life.13-17 For example, Hispanics tend to evade or perhaps deny terminal diagnoses, believing that acknowledging and accepting that a loved one will die removes any hope of recovery and may hasten death.13 Although denial can be an adaptive coping mechanism, it also prevents planning for end of life and discussing important issues such as patients’ wishes for medical treatment.14 Reaching consensus on a medical decision can also be complicated when there are generational differences in the way
1
School of Social Work, University of Nevada, Las Vegas, NV, USA Department of Psychology, University of Nevada, Las Vegas, NV, USA 3 Department of Sociology, University of Nevada, Las Vegas, NV, USA 4 Nathan Adelson Hospice, Las Vegas, NV, USA 2
Corresponding Author: Abbie Kirkendall, PhD, School of Social Work, University of Nevada Las Vegas, Greenspun College of Urban Affairs, 4505 S. Maryland Parkway, Las Vegas, NV 89154, USA. Email: [email protected]
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314 Hispanic families view doctors.13 In these situations, the family and patient may view the physician as the authority giving her or him control over treatment decisions.14-16 With these kinds of cultural issues in mind, scholars and practitioners need to work toward developing culturally sensitive approaches to discuss terminal diagnoses with patients and family members. The ultimate goal is to support patients’ medical wishes at the end of life and increase their satisfaction with hospice services.17 Research has also demonstrated a positive relationship between patients’ and caregivers’ satisfaction with the coordination of care and the consistency of information that patients and caregivers receive as well as having a nurse or doctor who is knowledgeable about the patient’s medical history.9-12 Some research has suggested that Hispanic families are often referred to hospice following a medical crises that brought their family member to the emergency department.8,18 As a result, medical personnel with no prior knowledge of a patient’s history may make inappropriate hospice referrals or may be culturally insensitive during the visit, leaving Hispanic families feeling distrustful of medical professionals and of hospice more specifically. Doctors with no prior relationship with the patient or family or who do not speak Spanish have difficulty establishing trust with Hispanic patients and family members. Some studies have also found that Hispanics may lack accurate information about hospice and its services and may assume that hospices only care for older adults.19,20 In order to establish trust and consistency, Hispanic patients respond best to doctors who they see consistently, have a relationship with, and who are culturally sensitive to their needs and beliefs about death and dying.21 A consistent finding in the research on caregivers’ satisfaction with hospice services is the desire for frequent and accurate information about the patients’ health, symptoms, and what to expect during the dying process.22-24 Despite these findings, language barriers may impede hospice workers’ ability to relay information to Hispanic patients and caregivers.8 In addition, if Hispanic family members prefer not to discuss the terminal illness or the dying process, that limits the hospice staff’s ability to provide useful information to the patient or the family. In this context, Hispanic family members may feel fear and anxiety about the physical changes that signal when death is near.25 The provision of emotional support from hospice has also been associated with higher levels of patient and caregiver satisfaction.26 Nonetheless, Hispanic patients without an understanding of the hospice services available may not take advantage of emotional support services.27 Hispanics who rely on religious beliefs and prayer during times of illness may not have their emotional needs met by hospice staff or may not welcome the emotional support that hospice staff can provide.15,17 These patterns run parallel with other research documenting that Hispanics utilize mental health services far less than non-Hispanics.28,29 During times of emotional distress, Hispanics tend to prefer support from their family system rather than someone who they consider a stranger, including mental health professionals from hospice.30 With all of these studies
uncovering Hispanics’ underutilization of professional emotional and mental health support resources, it is clear that greater efforts are needed to better understand their preferences and develop culturally sensitive approaches for providing emotional support to Hispanics in hospice.31 Notwithstanding the usefulness of studies identifying Hispanic patients’ obstacles and barriers to the benefits of hospice, no study to our knowledge has comprehensively examined Hispanic and non-Hispanic patients and their families’ levels of satisfaction with various kinds of hospice services. Notably, information of this kind may help shed light on Hispanic families’ specific end-of-life preferences and inform future efforts to develop culturally sensitive models of hospice care. The purpose of this study is to fill this gap in the literature and examine ethnic differences in caregivers of Hispanic patients’ satisfaction with hospice across 6 domains: patient’s end-of-life wishes, perceived treatment with dignity/respect, the quality and quantity of information received from hospice staff, emotional/spiritual support, the coordination of care, and their overall satisfaction. We address the following hypotheses: (1) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanic patients to perceive that the patient’s wishes for medical treatment were not met, (2) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanics to express dissatisfaction with care coordination by Hospice, (3) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanic patients to express lower satisfaction with the information they received from Hospice, and (4) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanics to experience some dissatisfaction with the emotional support received from hospice staff before and after the death than caregivers of non-Hispanics.
Method Participants and Procedure This study employed the FEHC survey to examine a sample of 2980 caregivers (from December 2007 to April 2013), following the death of a loved one who received services from a large hospice in an urban southwestern US city. The 2980 caregivers were drawn from a larger sample of 3226 individuals and the sample of caregivers for the current study includes only those who provided information about the patient’s ethnicity. Those who were included in this investigation were more likely to be responding to the FEHC survey regarding a younger patient (P < .05) who primarily received inpatient hospice services (P < .001), compared to the 246 individuals not included this study. However, these 2 groups were similar on other demographic and background factors, including sex, years of education, and relationship with the family member who completed the FEHC survey. Consistent with its recommended guidelines, participants in this study were mailed the FEHC survey 1 to 3 months following their loved one’s death, along with a postage paid, preaddressed envelope for returning the completed survey. Surveys were
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Table 1. Descriptive Information for Hispanic and Non-Hispanic Patients.a Hispanic
Patient age Length of stay in hospice, days
Non-Hispanic
M
SD
78.13 47.17
14.85 125.72
M 78.85 52.09
Hispanic n Patient gender Men Women Patient education Eighth grade or less Some high school High-school graduate or GED 1-3 years of college 4-Year college graduate More than 4-year degree Location of hospice services Home services Inpatient Relationship with the caregiver Spouse Nonspouse
SD
t
12.92 145.90
0.67 0.41
%
w2
Non-Hispanic %
n
1.09 67 85
44.1 55.9
1368 1457
48.4 51.6 79.16b
22 11 25 8 6 3
29.3 14.7 33.3 10.7 8.0 4.0
57 102 520 278 97 117
4.9 8.7 44.4 23.7 8.3 10.0
111 41
73.0 27.0
2097 731
74.2 25.8
0.10 11.55c 53 99
34.9 65.1
1386 1442
49.0 51.0
Abbreviations: GED, General Educational Development; M, mean; SD, standard deviation; w2, chi-square. a There are some missing data for these variables, and percentages represent the percentage of valid cases. Comparisons between Hispanic and non-Hispanic patients for each variable were made using t and chi-square tests as shown in the right-most column. b P < .001. c P < .01.
mailed to the individual listed as the patient’s primary caregiver or health representative (note 1), most of whom were spouses/ partners of the patient (48.3%) or their adult children (30.6%). Most participants provided information about a woman (51.7%) receiving services at home (74.1%) with a primary diagnosis of cancer (44.5%), and the modal patient’s highest level of education was a high school diploma or General Educational Development (43.7%). On average, patients were 78.8 (standard deviation [SD] ¼ 13.0) years old at the time of death and received hospice services for 51.8 (SD ¼ 144.9) days. Of the 2980 participants in the sample, 152 patients were identified as Hispanic and 2828 were identified as nonHispanic. The primary purpose of this study was to compare perceptions of hospice experiences as reported by caregivers of Hispanic versus non-Hispanic patients. Demographic information about the Hispanic and non-Hispanic participants included in this study are presented in Table 1. As can be seen in Table 1, Hispanic patients were similar to non-Hispanic patients on most variables, except that Hispanic patients tended to have less education and were more likely to be cared for by a nonspouse. Additional details about this sample can be found elsewhere.24
Measures All participants provided information on the FEHC survey, which is widely used for program evaluation purposes in
hospices across the nation.10 This survey includes questions regarding the caregiver’s perceptions of the patient’s end-oflife wishes, the extent to which the patient was treated with dignity/respect, the quality of information received from hospice staff, the coordination of care, and the emotional/spiritual support the patient and family received from hospice staff as well as their overall level of satisfaction with hospice services. Items that tap into each of these content areas have been identified and validated in previous studies.10-12 Patient ethnicity. Caregivers were asked whether the patient was ‘‘of Hispanic or Spanish family background’’ (0 ¼ Non-Hispanic, 1 ¼ Hispanic). This item served as the primary independent variable of interest. Of those surveyed, 152 (5.1%) caregivers indicated that the patient was of Hispanic background. Control variables. In an effort to reduce the influence of differences between Hispanic and non-Hispanic patients on factors other than ethnicity, several variables were included in the analyses as statistical controls, which may be confounded with ethnicity (as shown to be the case for education level and relationship to the caregiver) and/or one or more of the dependent variables. These control variables included patient’s age, patient’s sex (0 ¼ men and 1 ¼ women), the patient’s highest level of education, primary location of services (0 ¼ home and
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316 1 ¼ inpatient), length of hospice services in days, and relationship with the caregiver (0 ¼ nonspouse and 1 ¼ spouse). Dependent variables. Six categories of dependent variables were examined: end-of-life wishes, patient’s dignity/respect, quality of information received, emotional and spiritual support, coordination of care, and overall satisfaction. Items assessing these various domains were chosen based on the recommendations from previous validation studies of the FEHC survey.10-12 The available sample size differed somewhat for each variable due to some items being phased in/out of newer versions of the survey that were introduced during the data collection period as well as the inclusion of items that some participants could ‘‘skip out’’ of based on a prior response. Binary- and ordinaldependent variables were coded in such a way that a higher score indicated greater satisfaction with hospice. End-of-life wishes. End-of-life wishes were assessed with 3 items: ‘‘As far as you know, did any member of the hospice team speak to the patient or to a family member about the patient’s wishes for medical treatment as he/she was dying’’ (0 ¼ no and 1 ¼ yes); ‘‘At any time while the patient was under the care of hospice, did the doctor or another hospice team member do anything with respect to end-of-life care that was inconsistent with the patient’s previously stated wishes?’’ (0 ¼ yes and 1 ¼ no); and ‘‘Did the patient’s death occur in the setting of the patient’s choice?’’ (0 ¼ no and 1 ¼ yes). Patient dignity/respect. Patient dignity and respect were measured by 2 items: ‘‘How often were the patient’s personal care needs— such as bathing, dressing, and changing bedding—taken care of as well as they should have been by the hospice team?’’ (0 ¼ never to 3 ¼ always) and ‘‘How often did the hospice team treat the patient with respect?’’ (0 ¼ never to 3 ¼ always). Quality of information received. Caregivers’ perceptions of the quality of information received from hospice staff were gauged by 4 items: ‘‘How often did the hospice team keep you or other family members informed about the patient’s condition?’’ (0 ¼ never to 3 ¼ always); ‘‘Did you or your family receive any information from the hospice team about what to expect while the patient was dying?’’ (0 ¼ no, 1 ¼ yes); ‘‘Would you have wanted more information about what to expect while the patient was dying’’ (0 ¼ yes, 1 ¼ no); and ‘‘Did you want more information than you got about management of the patient’s pain and/or breathing problems?’’ (0 ¼ yes to one or both and 1 ¼ no for all endorsed symptoms). Emotional and spiritual support. Caregivers’ appraisal of the emotional and spiritual support offered by hospice staff was measured by 5 items: ‘‘Did any member of the hospice team talk with you about your religious or spiritual beliefs? (0 ¼ no and 1 ¼ yes); ‘‘Did you have as much contact of that kind as you wanted?’’ (0 ¼ no and 1 ¼ yes); ‘‘How much emotional support did the hospice team provide to you prior to the patient’s death?’’ (1 ¼ less than was wanted, 2 ¼ more attention than was wanted, or 3 ¼ right amount [reference category]); ‘‘How
much emotional support did the hospice team provide to you after the patient’s death?’’ (1 ¼ less than was wanted, 2 ¼ more attention than was wanted, or 3 ¼ right amount [reference category]); and ‘‘How much help in dealing with these feelings (sadness/anxiety) did the patient receive?’’ (1 ¼ less than was wanted, 2 ¼ more help or attention to these feelings than patient wanted, or 3 ¼ right amount [reference category]). This last item was only completed by caregivers who indicated that their loved one experienced some sadness or anxiety at the end of life. Coordination of care. Coordination of hospice services was assessed via 3 items: ‘‘How often did someone from the hospice team give confusing or contradictory information about the patient’s medical treatment?’’ (0 ¼ always to 3 ¼ never); ‘‘While under the care of hospice, was there always one nurse who was identified as being in charge of the patient’s overall care?’’ (0 ¼ no and 1 ¼ yes); and ‘‘Was there any problem with hospice doctors or nurses not knowing enough about the patient’s medical history to provide the best possible care?’’ (0 ¼ yes and 1 ¼ no). Overall satisfaction. One item was used to assess overall satisfaction with hospice care: ‘‘Overall, how would you rate the care the patient received while under the care of hospice?’’ (0 ¼ poor to 4 ¼ excellent).
Plan of Analysis Binary logistic regression was employed for binary outcomes (eg, 0 ¼ no and 1 ¼ yes), ordinal logistic regression was used for dependent variables measured on an ordinal scale (eg, 0 ¼ poor to 4 ¼ excellent), and multinomial logistic regression was used when the outcome variable was assessed on a nominal scale (eg, 1 ¼ less than wanted, 2 ¼ more than wanted, and 3 ¼ right amount). In each analysis, patient’s ethnicity (ie, Hispanic vs non-Hispanic) was entered as an independent variable, along with the control variables. Missing data in the independent variables were handled using multiple imputation, which has the advantage of providing unbiased estimates while making use of all available cases.32
Results Results from the logistic regressions for dependent variables related to end-of-life wishes are presented in Table 2. These results revealed that even in the presence of the control variables, caregivers of Hispanic patients were 71% more likely to feel as though the hospice team did something inconsistent with the patient’s wishes (note 2).33 Caregivers of Hispanic patients were also somewhat (38%) less likely to report that the patient died in the setting of their choice; however, this finding only approached statistical significance (P ¼ .06). Patient’s ethnicity was not found to be significantly related to caregivers’ perceptions about whether or not the hospice team discussed the patient’s wishes for medical treatment. Although not a primary focus of this study, it should also be noted that nonspousal caregivers and those reporting on younger male patients were more likely to
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Table 2. Unique Associations Between Patient Ethnicity and End-of-Life Wishes.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Hospice team spoke to patient or family about patient’s wishes for medical treatment (n ¼ 1149)
Hospice team did something inconsistent with the patient’s previously stated wishes (n ¼ 1121)
Death occurred in the setting of the patient’s choice (n ¼ 2783)
Binary logistic regression
Binary logistic regression
Binary logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
.11a .15b .08 .04 .00 .17c 0.04
.05 .05 .05 .05 .05 .05 .05
0.99 0.58 1.12 .87 1.00 0.53 1.36
.04 .04 .10 .04 .03 .08 .29c
.06 .07 .07 .07 .05 .07 .04
1.01 1.18 1.17 1.16 1.00 1.34 0.29
.09b .06 .07 .11b .04 .09a .06
.03 .04 .05 .03 .03 .04 .03
1.01 1.27 1.11 0.62 1.00 1.40 0.62
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .01. c P < .001.
Table 3. Unique Associations Between Patient Ethnicity and Dignity/Respect.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Frequency with which the patient’s personal care needs were taken care of as they should have been by hospice team (n ¼ 2477)
Frequency with which hospice team treated the patient with respect (n ¼ 2900)
Ordinal logistic regression
Ordinal logistic regression
b
SE
OR
b
SE
OR
.06a .01 .01 .17b .01 .03 .04
.03 .03 .05 .03 .03 .03 .03
1.01 0.97 0.98 2.05 1.00 0.91 1.34
.15b .06 .00 .02 .00 .01 .09
.04 .05 .08 .05 .05 .05 .06
1.02 0.81 1.00 1.07 1.00 1.04 2.03
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .001.
report that the hospice team discussed the patient’s wishes for medical treatment. In addition, spousal caregivers reporting on patients who were older and primarily received services at home were more likely to indicate that the death occurred in the setting of the patient’s choice. With regard to the treatment of the patient with dignity and respect, levels of satisfaction with the degree to which the patient was respected and had their personal needs met did not significantly differ based on the patient’s ethnicity, as shown in Table 3. However, those caring for older patients were more likely to express a positive assessment of the respect and treatment of personal care issues that the patient received. Those who primarily received inpatient services were also more likely to be content with hospice staff’s attention to patients’ personal care needs. As can be seen in Table 4, caregivers of Hispanic patients expressed similar levels of satisfaction with the information (as assessed by 4 items) that was received from hospice staff, compared to individuals who cared for a non-Hispanic patient. Although not a primary focus, those who primarily received
inpatient services expressed more positive attitudes across all informational variables. Nonspousal caregivers and those caring for older patients were also more likely to report that they received enough information about what to expect while the patient was dying. In terms of emotional/spiritual support provided by hospice staff, caregivers of Hispanic patients were found to be 47% less likely than caregivers of non-Hispanic patients to report having as much religious and spiritual contact as they wanted, although patient ethnicity did not seem to significantly influence the likelihood of reporting that these issues were discussed with the family (see Table 5). These caregivers were also 4.9 and 3.0 times more likely to report receiving more emotional support than they wanted from hospice staff before and after the death, respectively. In addition, among patients who experienced sadness/anxiety at the end of life, caregivers of Hispanic patients were 3.0 times more likely to report that the patient received more help with these feelings than he or she wanted. It is also worth noting briefly that caregivers of older patients
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Table 4. Unique Associations Between Patient Ethnicity and Informational Variables. Hospice team kept the family informed about the patient’s condition (n ¼ 2875) Ordinal logistic regression b Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
SE
.00 .01 .00 .09b .02 .01 .02
.03 .03 .03 .03 .03 .03 .03
Wanted more information Wanted more information Received information about medicines for pain and/or about what to expect about what to expect management of breathing while the patient was dying while patient was dying problems (n ¼ 2626) (n ¼ 2872) (n ¼ 2867) Binary logistic regression b
OR 1.00 1.02 1.00 1.47 1.00 1.02 1.16
SE
.03 .04 .08 .06a .09 .08a .05
b
OR
.03 .03 .04 .03 .05 .03 .03
Binary logistic regression
a
1.00 1.14 1.12 0.79 1.00 0.75 1.46
.05 .01 .04 .07a .03 .06a .01
Binary logistic regression
SE
OR
b
SE
OR
.03 .03 .04 .03 .03 .03 .03
1.01 1.05 1.06 1.33 1.00 0.79 0.89
.05 .04 .07 .09a .10 .05 .05
.04 .04 .06 .04 .06 .04 .03
1.01 0.85 1.11 1.46 1.00 0.83 0.64
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .001.
Table 5. Unique Associations Between Patient Ethnicity and Emotional/Spiritual Support.a Hospice team talked about religious and spiritual beliefs with the family (n ¼ 2878) Binary logistic regression b
SE
OR
Patient age .02 .02 1.00 Patient sex .02 .03 0.93 Patient education .01 .04 1.02 Location of services .00 .02 1.02 Length of stay .01 .03 1.00 Relationship with CG .04 .03 1.18 Patient ethnicity .05 .03 1.48
Family had as much religious and spiritual contact as they wanted (n ¼ 2802)
Amount of emotional support hospice team provided to the family before the death: more attention than was wanted vs right amount (n ¼ 2867)
Amount of emotional support hospice team provided to the family after the death: more attention than was wanted vs right amount (n ¼ 2852)
Amount of help provided to the patient for sadness/anxiety: more than patient wanted vs right amount (n ¼ 1146)
Binary logistic regression
Multinomial logistic regression
Multinomial logistic regression
Multinomial logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
b
SE
OR
.04 .05 .03 .01 .02 .03 .08c
.04 .04 .06 .04 .05 .05 .03
1.01 1.20 1.05 1.03 1.00 1.12 0.53
.63b .19 .41 .04 .16 .19 .61b
.17 .26 .33 .26 .21 .27 .15
.97 1.25 1.22 0.95 1.00 1.24 4.86
.42 .21 .38 .48 .19 .33 .49c
.24 .29 .30 .28 .21 .29 .20
.98 1.22 .86 .58 1.00 1.39 3.01
.16 .23 .30 .15 .14 .30 .80d
.48 .54 .57 .52 .44 .55 .30
1.00 0.87 0.92 0.88 1.00 0.83 3.02
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a For amount of emotional support provided to the family (before and after the death) and amount of help provided to the patient for sadness/anxiety, results for the comparison between the responses ‘‘more attention than was wanted’’ and ‘‘right amount’’ (which was the reference category) are only presented. Ethnicity was not a significant predictor when the ‘‘less than was wanted’’ and ‘‘right amount’’ responses were compared. b P < .001. c P < .05. d P < .01.
were more likely to report that they received the ‘‘right amount’’ of emotional support (vs too much) before the death. As presented in Table 6, patient ethnicity was not significantly associated with either of the coordination of care variables. Only the location of services was found to be significantly related to these variables, with those who primarily received inpatient services being more likely to express satisfaction with the coordination of care. Finally, caregivers of Hispanic patients were found to be similarly satisfied overall with hospice services, compared to those
who cared for a non-Hispanic patient (b ¼ .02, P ¼ .50). However, individuals reporting on a patient who primarily received inpatient services tended to be more satisfied overall (b ¼ .11, P < .001).
Discussion In support of our first hypothesis, family members of Hispanic patients were more likely than non-Hispanics to perceive that the patient’s wishes for medical treatment were somehow not
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Table 6. Unique Associations Between Patient Ethnicity and Coordination of Care.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Someone from hospice gave confusing or contradictory information (n ¼ 2822)
One nurse was identified as being in charge of the patient’s overall care (n ¼ 2822)
Problem with hospice doctors/nurses not knowing enough about the patient’s medical history (n ¼ 2790)
Ordinal logistic regression
Binary logistic regression
Binary logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
.04 .06 .09 .12a .03 .00 .01
.03 .03 .05 .03 .03 .03 .03
1.01 1.24 1.14 1.64 1.00 1.00 0.94
.03 .01 .01 .14a .10 .02 .00
.04 .05 .09 .05 .07 .05 .04
1.01 1.04 1.01 1.81 1.00 1.07 0.98
.02 .06 .10 .11b .01 .04 .05
.05 .05 .07 .05 .04 .05 .04
1.00 1.24 1.16 1.57 1.00 0.87 0.66
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .01. b P < .05.
met and/or that the patient did not die in the desired setting. Although this pattern of results is subject to multiple interpretations, it is possible that this difference is due to a tendency for Hispanics to prefer to exhaust all life-saving treatments, in addition to the belief that admission to hospice means losing hope and accepting death.5 As a result, Hispanics are often referred to hospice when they are far advanced in their disease process, which perhaps leaves the patient and the family with less time to access services, discuss their preferences, and express concerns.17 Contrary to our hypotheses, these results indicate that family members of Hispanic and non-Hispanic hospice patients report similar levels of satisfaction with coordination of care in hospice and the dignity/respect they received from hospice staff and, perhaps as a result, tend to have comparable levels of overall satisfaction with hospice care. Also inconsistent with our hypotheses, similar levels of satisfaction with the information received from hospice staff were found for family members of Hispanic and non-Hispanic patients. Taken as a whole, these findings suggest that at a broad level, hospice is adequately meeting the needs of both Hispanic and non-Hispanic patients and their caregivers. Findings related to emotional/spiritual support provide yet another possible explanation for the observed differences between family members of Hispanic and non-Hispanic patients’ perceptions of the extent to which end-of-life wishes were properly addressed. Consistent with our fourth hypothesis, family members of Hispanic patients were more likely than non-Hispanics to report receiving more attention than they desired for emotional issues both before and after the death of the patient. In addition, family members of Hispanic patients who were experiencing sadness and/or anxiety at the end of life were also more likely to indicate that the patient received more assistance than they desired for these issues. This reaction may be due to the lack of a culturally sensitive approach to addressing Hispanics’ emotional and/or spiritual needs. Research suggests that Hispanics believe that individuals are responsible for
their own emotional healing and outside support may not be viewed as favorably.16 Moreover, acknowledging depression or anxiety is often viewed as shameful for many Hispanics, perhaps making it more difficult to discuss these issues with someone outside the family.34,35 In contrast to findings related to perceptions of emotional support, family members of Hispanic patients were more likely than non-Hispanics to report not having as much spiritual or religious support as they would have liked from hospice staff. This finding also supports our fourth hypothesis and fits with past research suggesting that Hispanic individuals frequently rely on religious means of coping with depression and personal struggles.34-36 The fact that families of Hispanic patients tended to have a greater desire for spiritual and religious forms of support could offer an additional explanation for why more secular approaches were perceived as unwanted or more than what was needed. Although not a primary aim of this study, it should also be noted that nonspousal caregivers reporting on older patients who received services in an inpatient setting often tended to report more positive experiences in hospice across a variety of domains. This pattern of findings may stem from a tendency for more distant and perhaps less emotionally invested caregivers (eg, extended family members, friends) and caregivers who have more exposure and opportunities to interact with hospice staff to have fewer concerns. Likewise, older patients may be more likely to be admitted to hospice for chronic health problems, which may not be associated with the same level of concerns compared to younger patients who are perhaps admitted due to an unexpected illness or tragic accident. Despite the contribution of the present investigation in shedding light on the unique experience of Hispanic patients and their families in hospice, this study is not without limitations. For example, the use of a cross-sectional design limits our ability to make any causal claims or examine how observed differences between Hispanic and non-Hispanic individuals might emerge and change over time. These results are also limited
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American Journal of Hospice & Palliative Medicine® 32(3)
320 to 1 geographical area making generalizability to regions outside the Southwestern United States difficult. Finally, it should be noted that this study largely relied on single-item measures, and researchers may wish to attempt replication of these findings using validated, multidimensional assessment tools. Notwithstanding these limitations, the findings of this study have important clinical implications that may inform the development of a culturally sensitive model of hospice care for Hispanic patients and their families. In particular, these results suggest that hospice programs would do well to modify the way in which emotional support is provided to Hispanic patients and family members, since traditional forms of support are more likely to be viewed as unwelcome among this group.36 Given Hispanics’ preference for spiritually oriented forms of support, hospices may consider discussing spiritual issues, facilitating religious rituals, and addressing religious/spiritual concerns as part of their routine support services with Hispanic patients who have strong religious beliefs.34-36 Hospices should also make a special effort to thoroughly discuss Hispanic patients and families’ preferences for end-of-life care. When language barriers exist, discussion of these sensitive topics may be facilitated by including Spanish speaking staff to help interpret and clarify key points.31 Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
Notes 1. From this point forward, all caregivers and/or health representative that completed the family evaluation of hospice care (FEHC) survey will be referred to as ‘‘caregivers’’ although some of these individuals may have not been directly involved in the patient’s care. 2. The percentage of change in the odds of a yes or no response based on patient ethnicity is calculated as 100 (odds ratio 1) as has been described elsewhere.33
References 1. A statistical profile of Hispanic Older Americans aged 65þ. Department of Health and Human Services Administration on Aging Web site. http://www.aoa.gov/Aging_Statistics/minority_aging/ Facts-on-Hispanic-Elderly-2008.aspx. Published 2008. Accessed September 5, 2013. 2. NHPCO facts and figures: hospice care in America. National Hospice and Palliative Care Organization Web site. http://www. nhpco.org/sites/default/files/public/Statistics_Research/2012_ Facts_Figures.pdf. Updated 2012. Accessed September 10, 2013. 3. Carrion IV. Communicating terminal diagnoses to Hispanic patients. Palliat Support Care. 2010;8(2):117-123. doi:10.1017/ S147895150999085X. 4. Carrion IV, Bullock K. A case study of Hispanics and hospice care. Int J Humanit Soc Sci. 2012;2(4):9-16.
5. Carrion IV. 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. 6. Colon M. Hospice and Latinos: a review of the literature. J Soc Work End Life Palliat Care. 2005;1(2):27-43. doi:10.1300/ J457v01n02_04. 7. Selsky C, Kreling B, Luta G, et al. Hospice knowledge and intentions among Latinos using safety-net clinics. J Palliat Med. 2012; 15(9):984-990. doi:10.1089/jpm.2011.0517. 8. Kreling B, Selsky C, Perret-Gentil M, Huerta EE, Mandelblatt JS. The worst thing about hospice is that they talk about death’: contrasting hospice decisions and experience among immigrant Central and South American Latinos with USborn White, non-Latino cancer caregivers. Palliat Med. 2010;24(4):427-434. 9. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008;35(4):365-371. 10. Connor SR, Teno J, Spence C, Smith N. Family evaluation of hospice care: results from voluntary submission of data via website. J Pain Symptom Manage. 2005;30(1):9-17. doi:10.1016/j.jpainsymman.2005.04.001. 11. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage. 2001;22(3):752-758. doi:10. 1016/S0885-3924(01)00331-1. 12. Jackson J, Derderian L, White P, et al. Family perspectives on end-of-life care: a metasynthesis. J Hosp Palliat Nurs. 2012; 14(4):303-311. 13. Colon M. The experience of physicians who refer Latinos to hospice. Am J Hosp Palliat Care. 2012;29(4):254-259. doi:10.1177/ 1049909111418777. 14. Carrion IV, Nedjat-Haiem FR, Marquez DX. Examining cultural factors that influence treatment decisions: a pilot study of Latino men with cancer. J Cancer Educ. 2013;28(4):729-737. doi:10. 1007/s13187-013-0522-9. 15. Carrion IV, Nedjat-Haiem FR. Caregiving for older Latinos at end of life: perspectives from paid and family (unpaid) caregivers. Am J Hosp Palliat Care. 2013;30(2):183-191. doi:10. 1177/1049909112448227. 16. Cruz-Oliver DM, Talamantes M, Sanchez-Reilly S. What evidence is available on end-of-life (EOL) care and Latino elders? A literature review. Am J Hosp Palliat Care. 2014;31(1):87-97. doi:10.1177/1049909113480841. 17. Nedjat-Haiem FR, Carrion IV, Cribbs K, Lorenz K. Advocacy at the end of life: meeting the needs of vulnerable Latino patients. Soc Work Health Care. 2013;52(6):558-577. doi:10.1080/ 00981389.2013.779359. 18. Carrion IV, Park NS, Lee BS. Hospice use among African Americans, Asians, Hispanics, and Whites: implications for practice. Am J Hosp Palliat Care. 2012;29(2):116-121. doi:10.1177/ 1049909111410559. 19. Colon M. Acculturation and attitudes of Latinos toward hospice. J Soc Work End Life Palliat Care. 2012;8(3):229-248. doi:10. 1080/15524256.2012.708110.
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20. Quinones-Gonzalez S. Bridging the communication gap in hospice and palliative care for Hispanics and Latinos. Omega (Westport). 2013;67(1-2):193-200. 21. Nedjat-Haiem FR, Carrion IV, Ell K, Palinkas L. Navigating the advanced cancer experience of underserved Latinas. Support Care Cancer. 2012;20(12):3095-3104. doi:10.1007/s00520-012-1437-4. 22. Csikai Ellen L. Bereaved hospice caregivers’ perceptions of the end-of-life care communication process and the involvement of health care professionals. J Palliat Med. 2006;9(6): 1300-1309. 23. Schockett ER, Teno JM, Miller SC, Stuart B. Late referral to hospice and bereaved family member perception of quality of end-of-life care. J Pain Symptom Manage. 2005;30(5): 400-407. 24. Holland JM, Keene JR, Kirkendall AM, Luna N. Family evaluation of hospice care: examining direct and indirect associations with overall satisfaction and caregiver confidence. Manuscript Submitted for Publication. 2014. 25. Taxis JC, Keller T, Cruz V. Mexican Americans and hospice care: culture, control, and communication. J Hosp Palliat Nurs. 2008; 10(3):133-141. 26. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88-93. 27. Nedjat-Haiem FR, Carrion IV, Lorenz KA, Ell K, Palinkas L. Psychosocial concerns among Latinas with life-limiting advanced cancers. Omega (Westport). 2013;67(1-2):167-174.
28. Cueller I, Arnold B, Gonzalez G. Cognitive referents of acculturation: assessment of cultural constructs in Mexican Americans. J Community Psychol. 1993;23(4):339-356. 29. Padgett DK, Patrick C, Burns BJ, Schlesinger HJ. Ethnicity and the use of outpatient mental health services in a national insured population. Am J Pub Health. 1994;84(2):222-226. 30. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7(2):247-256. 31. Crawley LM, Marshall PA, Lo B, Koenig BA. Strategies for culturally effective end-of-life care. Ann Intern Med. 2002;136(9): 673-679. 32. Kenward MG, Carpenter J. Multiple imputation: current perspectives. Stat Methods Med Res. 2007;16(3):199-218. doi:10.1177/ 0962280206075304. 33. LaValley MP. Logistic regression. Circulation. 2008;117(18): 2395-2399. doi:10.1161/CIRCULATIONAHA.106.682658. 34. Caplan S, Escobar J, Paris M, et al. Cultural influences on casual beliefs about depression among Latino immigrants. J Transcult Nurs. 2012;24(1):68-77. 35. Hampton NZ., Sharp SE. Shame-focused attitudes toward mental health problems: the role of gender and culture [published online September 6, 2013]. Rehabil Couns Bull. 2013. 36. Martinez Tyson DD, Castaneda H, Porter M, Quiroz M, Carrion I. More similar than different? Exploring cultural models of depression among Latino immigrants in Florida. Depress Res Treat. 2011;2011:564396. doi:10.1155/2011/564396.
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Evaluation of Hospice Care by Family Members of Hispanic and Non-Hispanic Patients
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(3) 313-321 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114526969 ajhpm.sagepub.com
Abbie Kirkendall, PhD1, Jason M. Holland, PhD2, Jennifer R. Keene, PhD3, and Nora Luna, MEd4
Abstract The Hispanic older adult population is increasing rapidly and past research suggests that this demographic group underutilizes hospice services, highlighting the need to improve our understanding of their needs in end of life. This study relied upon information from the family evaluation of hospice care survey provided by 2980 caregivers, 152 of whom cared for a Hispanic patient and 2828 who cared for a non-Hispanic patient. Caregivers of Hispanic patients were more likely to report that hospice was inconsistent with the patient’s wishes, and that they received more attention than desired for emotional issues. Caregivers of Hispanic patients were also more likely to express that emotional/spiritual forms of support were insufficient. Similar levels of satisfaction were reported for caregivers of Hispanics and non-Hispanics regarding dignity/respect, information received, care coordination, and overall satisfaction. Keywords end of life, satisfaction, Hispanic, hospice, caregivers, emotional support
Introduction In 2008, the older Hispanic population in the United States was 2.7 million and it is expected to increase to 17 million by 2050.1 As the proportion of Hispanic older adults increases so too will the need for culturally sensitive end-of-life care. Currently, Hispanics are less likely to utilize hospice services than their non-Hispanic counterparts. For example, in 2011, 93.8% of hospice patients were of non-Hispanic origin compared to only 6.2% who were Hispanic.2 The increasing ethnic diversity among seniors combined with Hispanic patients’ underuse of hospice services highlights the importance of gaining a greater understanding of Hispanic patients’ and caregivers’ needs at the end of life in order to better serve them. Previous research of Hispanics’ hospice utilization suggests that their underuse relates to factors including language barriers, lack of insurance, greater desire for life-sustaining treatments, preference for informal sources of support over professional services, mistrust of the medical system, low referral rates, and concerns related to revealing their immigration status.3-7 Additional research suggests that Hispanics are likely to have lower levels of satisfaction when compared to caucasians who were receiving hospice services.8 Hospices around the country provide caregiver satisfaction surveys to monitor quality and to identify areas of needed improvement.9 The most popular survey used is the family evaluation of hospice care (FEHC), which assesses the caregiver’s level of satisfaction several months after their loved one has died. The FEHC covers the following areas: the caregivers’
perception of the fulfillment of patient’s wishes for medical treatment; the caregivers’ level of satisfaction with coordination of care, information received, and emotional support before and after death; and the caregivers’ perception of their overall satisfaction.9-11 Studies have reported that a positive relationship exists between fulfilling patients’ wishes and overall satisfaction with hospice care.12 There is reason to believe that Hispanics may experience lower levels of satisfaction with the fulfillment of patient’s wishes at the end of life.13-17 For example, Hispanics tend to evade or perhaps deny terminal diagnoses, believing that acknowledging and accepting that a loved one will die removes any hope of recovery and may hasten death.13 Although denial can be an adaptive coping mechanism, it also prevents planning for end of life and discussing important issues such as patients’ wishes for medical treatment.14 Reaching consensus on a medical decision can also be complicated when there are generational differences in the way
1
School of Social Work, University of Nevada, Las Vegas, NV, USA Department of Psychology, University of Nevada, Las Vegas, NV, USA 3 Department of Sociology, University of Nevada, Las Vegas, NV, USA 4 Nathan Adelson Hospice, Las Vegas, NV, USA 2
Corresponding Author: Abbie Kirkendall, PhD, School of Social Work, University of Nevada Las Vegas, Greenspun College of Urban Affairs, 4505 S. Maryland Parkway, Las Vegas, NV 89154, USA. Email: [email protected]
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314 Hispanic families view doctors.13 In these situations, the family and patient may view the physician as the authority giving her or him control over treatment decisions.14-16 With these kinds of cultural issues in mind, scholars and practitioners need to work toward developing culturally sensitive approaches to discuss terminal diagnoses with patients and family members. The ultimate goal is to support patients’ medical wishes at the end of life and increase their satisfaction with hospice services.17 Research has also demonstrated a positive relationship between patients’ and caregivers’ satisfaction with the coordination of care and the consistency of information that patients and caregivers receive as well as having a nurse or doctor who is knowledgeable about the patient’s medical history.9-12 Some research has suggested that Hispanic families are often referred to hospice following a medical crises that brought their family member to the emergency department.8,18 As a result, medical personnel with no prior knowledge of a patient’s history may make inappropriate hospice referrals or may be culturally insensitive during the visit, leaving Hispanic families feeling distrustful of medical professionals and of hospice more specifically. Doctors with no prior relationship with the patient or family or who do not speak Spanish have difficulty establishing trust with Hispanic patients and family members. Some studies have also found that Hispanics may lack accurate information about hospice and its services and may assume that hospices only care for older adults.19,20 In order to establish trust and consistency, Hispanic patients respond best to doctors who they see consistently, have a relationship with, and who are culturally sensitive to their needs and beliefs about death and dying.21 A consistent finding in the research on caregivers’ satisfaction with hospice services is the desire for frequent and accurate information about the patients’ health, symptoms, and what to expect during the dying process.22-24 Despite these findings, language barriers may impede hospice workers’ ability to relay information to Hispanic patients and caregivers.8 In addition, if Hispanic family members prefer not to discuss the terminal illness or the dying process, that limits the hospice staff’s ability to provide useful information to the patient or the family. In this context, Hispanic family members may feel fear and anxiety about the physical changes that signal when death is near.25 The provision of emotional support from hospice has also been associated with higher levels of patient and caregiver satisfaction.26 Nonetheless, Hispanic patients without an understanding of the hospice services available may not take advantage of emotional support services.27 Hispanics who rely on religious beliefs and prayer during times of illness may not have their emotional needs met by hospice staff or may not welcome the emotional support that hospice staff can provide.15,17 These patterns run parallel with other research documenting that Hispanics utilize mental health services far less than non-Hispanics.28,29 During times of emotional distress, Hispanics tend to prefer support from their family system rather than someone who they consider a stranger, including mental health professionals from hospice.30 With all of these studies
uncovering Hispanics’ underutilization of professional emotional and mental health support resources, it is clear that greater efforts are needed to better understand their preferences and develop culturally sensitive approaches for providing emotional support to Hispanics in hospice.31 Notwithstanding the usefulness of studies identifying Hispanic patients’ obstacles and barriers to the benefits of hospice, no study to our knowledge has comprehensively examined Hispanic and non-Hispanic patients and their families’ levels of satisfaction with various kinds of hospice services. Notably, information of this kind may help shed light on Hispanic families’ specific end-of-life preferences and inform future efforts to develop culturally sensitive models of hospice care. The purpose of this study is to fill this gap in the literature and examine ethnic differences in caregivers of Hispanic patients’ satisfaction with hospice across 6 domains: patient’s end-of-life wishes, perceived treatment with dignity/respect, the quality and quantity of information received from hospice staff, emotional/spiritual support, the coordination of care, and their overall satisfaction. We address the following hypotheses: (1) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanic patients to perceive that the patient’s wishes for medical treatment were not met, (2) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanics to express dissatisfaction with care coordination by Hospice, (3) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanic patients to express lower satisfaction with the information they received from Hospice, and (4) caregivers of Hispanic patients may be more likely than caregivers of non-Hispanics to experience some dissatisfaction with the emotional support received from hospice staff before and after the death than caregivers of non-Hispanics.
Method Participants and Procedure This study employed the FEHC survey to examine a sample of 2980 caregivers (from December 2007 to April 2013), following the death of a loved one who received services from a large hospice in an urban southwestern US city. The 2980 caregivers were drawn from a larger sample of 3226 individuals and the sample of caregivers for the current study includes only those who provided information about the patient’s ethnicity. Those who were included in this investigation were more likely to be responding to the FEHC survey regarding a younger patient (P < .05) who primarily received inpatient hospice services (P < .001), compared to the 246 individuals not included this study. However, these 2 groups were similar on other demographic and background factors, including sex, years of education, and relationship with the family member who completed the FEHC survey. Consistent with its recommended guidelines, participants in this study were mailed the FEHC survey 1 to 3 months following their loved one’s death, along with a postage paid, preaddressed envelope for returning the completed survey. Surveys were
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Table 1. Descriptive Information for Hispanic and Non-Hispanic Patients.a Hispanic
Patient age Length of stay in hospice, days
Non-Hispanic
M
SD
78.13 47.17
14.85 125.72
M 78.85 52.09
Hispanic n Patient gender Men Women Patient education Eighth grade or less Some high school High-school graduate or GED 1-3 years of college 4-Year college graduate More than 4-year degree Location of hospice services Home services Inpatient Relationship with the caregiver Spouse Nonspouse
SD
t
12.92 145.90
0.67 0.41
%
w2
Non-Hispanic %
n
1.09 67 85
44.1 55.9
1368 1457
48.4 51.6 79.16b
22 11 25 8 6 3
29.3 14.7 33.3 10.7 8.0 4.0
57 102 520 278 97 117
4.9 8.7 44.4 23.7 8.3 10.0
111 41
73.0 27.0
2097 731
74.2 25.8
0.10 11.55c 53 99
34.9 65.1
1386 1442
49.0 51.0
Abbreviations: GED, General Educational Development; M, mean; SD, standard deviation; w2, chi-square. a There are some missing data for these variables, and percentages represent the percentage of valid cases. Comparisons between Hispanic and non-Hispanic patients for each variable were made using t and chi-square tests as shown in the right-most column. b P < .001. c P < .01.
mailed to the individual listed as the patient’s primary caregiver or health representative (note 1), most of whom were spouses/ partners of the patient (48.3%) or their adult children (30.6%). Most participants provided information about a woman (51.7%) receiving services at home (74.1%) with a primary diagnosis of cancer (44.5%), and the modal patient’s highest level of education was a high school diploma or General Educational Development (43.7%). On average, patients were 78.8 (standard deviation [SD] ¼ 13.0) years old at the time of death and received hospice services for 51.8 (SD ¼ 144.9) days. Of the 2980 participants in the sample, 152 patients were identified as Hispanic and 2828 were identified as nonHispanic. The primary purpose of this study was to compare perceptions of hospice experiences as reported by caregivers of Hispanic versus non-Hispanic patients. Demographic information about the Hispanic and non-Hispanic participants included in this study are presented in Table 1. As can be seen in Table 1, Hispanic patients were similar to non-Hispanic patients on most variables, except that Hispanic patients tended to have less education and were more likely to be cared for by a nonspouse. Additional details about this sample can be found elsewhere.24
Measures All participants provided information on the FEHC survey, which is widely used for program evaluation purposes in
hospices across the nation.10 This survey includes questions regarding the caregiver’s perceptions of the patient’s end-oflife wishes, the extent to which the patient was treated with dignity/respect, the quality of information received from hospice staff, the coordination of care, and the emotional/spiritual support the patient and family received from hospice staff as well as their overall level of satisfaction with hospice services. Items that tap into each of these content areas have been identified and validated in previous studies.10-12 Patient ethnicity. Caregivers were asked whether the patient was ‘‘of Hispanic or Spanish family background’’ (0 ¼ Non-Hispanic, 1 ¼ Hispanic). This item served as the primary independent variable of interest. Of those surveyed, 152 (5.1%) caregivers indicated that the patient was of Hispanic background. Control variables. In an effort to reduce the influence of differences between Hispanic and non-Hispanic patients on factors other than ethnicity, several variables were included in the analyses as statistical controls, which may be confounded with ethnicity (as shown to be the case for education level and relationship to the caregiver) and/or one or more of the dependent variables. These control variables included patient’s age, patient’s sex (0 ¼ men and 1 ¼ women), the patient’s highest level of education, primary location of services (0 ¼ home and
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316 1 ¼ inpatient), length of hospice services in days, and relationship with the caregiver (0 ¼ nonspouse and 1 ¼ spouse). Dependent variables. Six categories of dependent variables were examined: end-of-life wishes, patient’s dignity/respect, quality of information received, emotional and spiritual support, coordination of care, and overall satisfaction. Items assessing these various domains were chosen based on the recommendations from previous validation studies of the FEHC survey.10-12 The available sample size differed somewhat for each variable due to some items being phased in/out of newer versions of the survey that were introduced during the data collection period as well as the inclusion of items that some participants could ‘‘skip out’’ of based on a prior response. Binary- and ordinaldependent variables were coded in such a way that a higher score indicated greater satisfaction with hospice. End-of-life wishes. End-of-life wishes were assessed with 3 items: ‘‘As far as you know, did any member of the hospice team speak to the patient or to a family member about the patient’s wishes for medical treatment as he/she was dying’’ (0 ¼ no and 1 ¼ yes); ‘‘At any time while the patient was under the care of hospice, did the doctor or another hospice team member do anything with respect to end-of-life care that was inconsistent with the patient’s previously stated wishes?’’ (0 ¼ yes and 1 ¼ no); and ‘‘Did the patient’s death occur in the setting of the patient’s choice?’’ (0 ¼ no and 1 ¼ yes). Patient dignity/respect. Patient dignity and respect were measured by 2 items: ‘‘How often were the patient’s personal care needs— such as bathing, dressing, and changing bedding—taken care of as well as they should have been by the hospice team?’’ (0 ¼ never to 3 ¼ always) and ‘‘How often did the hospice team treat the patient with respect?’’ (0 ¼ never to 3 ¼ always). Quality of information received. Caregivers’ perceptions of the quality of information received from hospice staff were gauged by 4 items: ‘‘How often did the hospice team keep you or other family members informed about the patient’s condition?’’ (0 ¼ never to 3 ¼ always); ‘‘Did you or your family receive any information from the hospice team about what to expect while the patient was dying?’’ (0 ¼ no, 1 ¼ yes); ‘‘Would you have wanted more information about what to expect while the patient was dying’’ (0 ¼ yes, 1 ¼ no); and ‘‘Did you want more information than you got about management of the patient’s pain and/or breathing problems?’’ (0 ¼ yes to one or both and 1 ¼ no for all endorsed symptoms). Emotional and spiritual support. Caregivers’ appraisal of the emotional and spiritual support offered by hospice staff was measured by 5 items: ‘‘Did any member of the hospice team talk with you about your religious or spiritual beliefs? (0 ¼ no and 1 ¼ yes); ‘‘Did you have as much contact of that kind as you wanted?’’ (0 ¼ no and 1 ¼ yes); ‘‘How much emotional support did the hospice team provide to you prior to the patient’s death?’’ (1 ¼ less than was wanted, 2 ¼ more attention than was wanted, or 3 ¼ right amount [reference category]); ‘‘How
much emotional support did the hospice team provide to you after the patient’s death?’’ (1 ¼ less than was wanted, 2 ¼ more attention than was wanted, or 3 ¼ right amount [reference category]); and ‘‘How much help in dealing with these feelings (sadness/anxiety) did the patient receive?’’ (1 ¼ less than was wanted, 2 ¼ more help or attention to these feelings than patient wanted, or 3 ¼ right amount [reference category]). This last item was only completed by caregivers who indicated that their loved one experienced some sadness or anxiety at the end of life. Coordination of care. Coordination of hospice services was assessed via 3 items: ‘‘How often did someone from the hospice team give confusing or contradictory information about the patient’s medical treatment?’’ (0 ¼ always to 3 ¼ never); ‘‘While under the care of hospice, was there always one nurse who was identified as being in charge of the patient’s overall care?’’ (0 ¼ no and 1 ¼ yes); and ‘‘Was there any problem with hospice doctors or nurses not knowing enough about the patient’s medical history to provide the best possible care?’’ (0 ¼ yes and 1 ¼ no). Overall satisfaction. One item was used to assess overall satisfaction with hospice care: ‘‘Overall, how would you rate the care the patient received while under the care of hospice?’’ (0 ¼ poor to 4 ¼ excellent).
Plan of Analysis Binary logistic regression was employed for binary outcomes (eg, 0 ¼ no and 1 ¼ yes), ordinal logistic regression was used for dependent variables measured on an ordinal scale (eg, 0 ¼ poor to 4 ¼ excellent), and multinomial logistic regression was used when the outcome variable was assessed on a nominal scale (eg, 1 ¼ less than wanted, 2 ¼ more than wanted, and 3 ¼ right amount). In each analysis, patient’s ethnicity (ie, Hispanic vs non-Hispanic) was entered as an independent variable, along with the control variables. Missing data in the independent variables were handled using multiple imputation, which has the advantage of providing unbiased estimates while making use of all available cases.32
Results Results from the logistic regressions for dependent variables related to end-of-life wishes are presented in Table 2. These results revealed that even in the presence of the control variables, caregivers of Hispanic patients were 71% more likely to feel as though the hospice team did something inconsistent with the patient’s wishes (note 2).33 Caregivers of Hispanic patients were also somewhat (38%) less likely to report that the patient died in the setting of their choice; however, this finding only approached statistical significance (P ¼ .06). Patient’s ethnicity was not found to be significantly related to caregivers’ perceptions about whether or not the hospice team discussed the patient’s wishes for medical treatment. Although not a primary focus of this study, it should also be noted that nonspousal caregivers and those reporting on younger male patients were more likely to
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Table 2. Unique Associations Between Patient Ethnicity and End-of-Life Wishes.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Hospice team spoke to patient or family about patient’s wishes for medical treatment (n ¼ 1149)
Hospice team did something inconsistent with the patient’s previously stated wishes (n ¼ 1121)
Death occurred in the setting of the patient’s choice (n ¼ 2783)
Binary logistic regression
Binary logistic regression
Binary logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
.11a .15b .08 .04 .00 .17c 0.04
.05 .05 .05 .05 .05 .05 .05
0.99 0.58 1.12 .87 1.00 0.53 1.36
.04 .04 .10 .04 .03 .08 .29c
.06 .07 .07 .07 .05 .07 .04
1.01 1.18 1.17 1.16 1.00 1.34 0.29
.09b .06 .07 .11b .04 .09a .06
.03 .04 .05 .03 .03 .04 .03
1.01 1.27 1.11 0.62 1.00 1.40 0.62
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .01. c P < .001.
Table 3. Unique Associations Between Patient Ethnicity and Dignity/Respect.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Frequency with which the patient’s personal care needs were taken care of as they should have been by hospice team (n ¼ 2477)
Frequency with which hospice team treated the patient with respect (n ¼ 2900)
Ordinal logistic regression
Ordinal logistic regression
b
SE
OR
b
SE
OR
.06a .01 .01 .17b .01 .03 .04
.03 .03 .05 .03 .03 .03 .03
1.01 0.97 0.98 2.05 1.00 0.91 1.34
.15b .06 .00 .02 .00 .01 .09
.04 .05 .08 .05 .05 .05 .06
1.02 0.81 1.00 1.07 1.00 1.04 2.03
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .001.
report that the hospice team discussed the patient’s wishes for medical treatment. In addition, spousal caregivers reporting on patients who were older and primarily received services at home were more likely to indicate that the death occurred in the setting of the patient’s choice. With regard to the treatment of the patient with dignity and respect, levels of satisfaction with the degree to which the patient was respected and had their personal needs met did not significantly differ based on the patient’s ethnicity, as shown in Table 3. However, those caring for older patients were more likely to express a positive assessment of the respect and treatment of personal care issues that the patient received. Those who primarily received inpatient services were also more likely to be content with hospice staff’s attention to patients’ personal care needs. As can be seen in Table 4, caregivers of Hispanic patients expressed similar levels of satisfaction with the information (as assessed by 4 items) that was received from hospice staff, compared to individuals who cared for a non-Hispanic patient. Although not a primary focus, those who primarily received
inpatient services expressed more positive attitudes across all informational variables. Nonspousal caregivers and those caring for older patients were also more likely to report that they received enough information about what to expect while the patient was dying. In terms of emotional/spiritual support provided by hospice staff, caregivers of Hispanic patients were found to be 47% less likely than caregivers of non-Hispanic patients to report having as much religious and spiritual contact as they wanted, although patient ethnicity did not seem to significantly influence the likelihood of reporting that these issues were discussed with the family (see Table 5). These caregivers were also 4.9 and 3.0 times more likely to report receiving more emotional support than they wanted from hospice staff before and after the death, respectively. In addition, among patients who experienced sadness/anxiety at the end of life, caregivers of Hispanic patients were 3.0 times more likely to report that the patient received more help with these feelings than he or she wanted. It is also worth noting briefly that caregivers of older patients
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Table 4. Unique Associations Between Patient Ethnicity and Informational Variables. Hospice team kept the family informed about the patient’s condition (n ¼ 2875) Ordinal logistic regression b Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
SE
.00 .01 .00 .09b .02 .01 .02
.03 .03 .03 .03 .03 .03 .03
Wanted more information Wanted more information Received information about medicines for pain and/or about what to expect about what to expect management of breathing while the patient was dying while patient was dying problems (n ¼ 2626) (n ¼ 2872) (n ¼ 2867) Binary logistic regression b
OR 1.00 1.02 1.00 1.47 1.00 1.02 1.16
SE
.03 .04 .08 .06a .09 .08a .05
b
OR
.03 .03 .04 .03 .05 .03 .03
Binary logistic regression
a
1.00 1.14 1.12 0.79 1.00 0.75 1.46
.05 .01 .04 .07a .03 .06a .01
Binary logistic regression
SE
OR
b
SE
OR
.03 .03 .04 .03 .03 .03 .03
1.01 1.05 1.06 1.33 1.00 0.79 0.89
.05 .04 .07 .09a .10 .05 .05
.04 .04 .06 .04 .06 .04 .03
1.01 0.85 1.11 1.46 1.00 0.83 0.64
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .05. b P < .001.
Table 5. Unique Associations Between Patient Ethnicity and Emotional/Spiritual Support.a Hospice team talked about religious and spiritual beliefs with the family (n ¼ 2878) Binary logistic regression b
SE
OR
Patient age .02 .02 1.00 Patient sex .02 .03 0.93 Patient education .01 .04 1.02 Location of services .00 .02 1.02 Length of stay .01 .03 1.00 Relationship with CG .04 .03 1.18 Patient ethnicity .05 .03 1.48
Family had as much religious and spiritual contact as they wanted (n ¼ 2802)
Amount of emotional support hospice team provided to the family before the death: more attention than was wanted vs right amount (n ¼ 2867)
Amount of emotional support hospice team provided to the family after the death: more attention than was wanted vs right amount (n ¼ 2852)
Amount of help provided to the patient for sadness/anxiety: more than patient wanted vs right amount (n ¼ 1146)
Binary logistic regression
Multinomial logistic regression
Multinomial logistic regression
Multinomial logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
b
SE
OR
.04 .05 .03 .01 .02 .03 .08c
.04 .04 .06 .04 .05 .05 .03
1.01 1.20 1.05 1.03 1.00 1.12 0.53
.63b .19 .41 .04 .16 .19 .61b
.17 .26 .33 .26 .21 .27 .15
.97 1.25 1.22 0.95 1.00 1.24 4.86
.42 .21 .38 .48 .19 .33 .49c
.24 .29 .30 .28 .21 .29 .20
.98 1.22 .86 .58 1.00 1.39 3.01
.16 .23 .30 .15 .14 .30 .80d
.48 .54 .57 .52 .44 .55 .30
1.00 0.87 0.92 0.88 1.00 0.83 3.02
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a For amount of emotional support provided to the family (before and after the death) and amount of help provided to the patient for sadness/anxiety, results for the comparison between the responses ‘‘more attention than was wanted’’ and ‘‘right amount’’ (which was the reference category) are only presented. Ethnicity was not a significant predictor when the ‘‘less than was wanted’’ and ‘‘right amount’’ responses were compared. b P < .001. c P < .05. d P < .01.
were more likely to report that they received the ‘‘right amount’’ of emotional support (vs too much) before the death. As presented in Table 6, patient ethnicity was not significantly associated with either of the coordination of care variables. Only the location of services was found to be significantly related to these variables, with those who primarily received inpatient services being more likely to express satisfaction with the coordination of care. Finally, caregivers of Hispanic patients were found to be similarly satisfied overall with hospice services, compared to those
who cared for a non-Hispanic patient (b ¼ .02, P ¼ .50). However, individuals reporting on a patient who primarily received inpatient services tended to be more satisfied overall (b ¼ .11, P < .001).
Discussion In support of our first hypothesis, family members of Hispanic patients were more likely than non-Hispanics to perceive that the patient’s wishes for medical treatment were somehow not
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Table 6. Unique Associations Between Patient Ethnicity and Coordination of Care.
Patient age Patient sex Patient education Location of services Length of stay Relationship with CG Patient ethnicity
Someone from hospice gave confusing or contradictory information (n ¼ 2822)
One nurse was identified as being in charge of the patient’s overall care (n ¼ 2822)
Problem with hospice doctors/nurses not knowing enough about the patient’s medical history (n ¼ 2790)
Ordinal logistic regression
Binary logistic regression
Binary logistic regression
b
SE
OR
b
SE
OR
b
SE
OR
.04 .06 .09 .12a .03 .00 .01
.03 .03 .05 .03 .03 .03 .03
1.01 1.24 1.14 1.64 1.00 1.00 0.94
.03 .01 .01 .14a .10 .02 .00
.04 .05 .09 .05 .07 .05 .04
1.01 1.04 1.01 1.81 1.00 1.07 0.98
.02 .06 .10 .11b .01 .04 .05
.05 .05 .07 .05 .04 .05 .04
1.00 1.24 1.16 1.57 1.00 0.87 0.66
Abbreviations: CG, caregiver; OR, odds ratio; SE, standard error. a P < .01. b P < .05.
met and/or that the patient did not die in the desired setting. Although this pattern of results is subject to multiple interpretations, it is possible that this difference is due to a tendency for Hispanics to prefer to exhaust all life-saving treatments, in addition to the belief that admission to hospice means losing hope and accepting death.5 As a result, Hispanics are often referred to hospice when they are far advanced in their disease process, which perhaps leaves the patient and the family with less time to access services, discuss their preferences, and express concerns.17 Contrary to our hypotheses, these results indicate that family members of Hispanic and non-Hispanic hospice patients report similar levels of satisfaction with coordination of care in hospice and the dignity/respect they received from hospice staff and, perhaps as a result, tend to have comparable levels of overall satisfaction with hospice care. Also inconsistent with our hypotheses, similar levels of satisfaction with the information received from hospice staff were found for family members of Hispanic and non-Hispanic patients. Taken as a whole, these findings suggest that at a broad level, hospice is adequately meeting the needs of both Hispanic and non-Hispanic patients and their caregivers. Findings related to emotional/spiritual support provide yet another possible explanation for the observed differences between family members of Hispanic and non-Hispanic patients’ perceptions of the extent to which end-of-life wishes were properly addressed. Consistent with our fourth hypothesis, family members of Hispanic patients were more likely than non-Hispanics to report receiving more attention than they desired for emotional issues both before and after the death of the patient. In addition, family members of Hispanic patients who were experiencing sadness and/or anxiety at the end of life were also more likely to indicate that the patient received more assistance than they desired for these issues. This reaction may be due to the lack of a culturally sensitive approach to addressing Hispanics’ emotional and/or spiritual needs. Research suggests that Hispanics believe that individuals are responsible for
their own emotional healing and outside support may not be viewed as favorably.16 Moreover, acknowledging depression or anxiety is often viewed as shameful for many Hispanics, perhaps making it more difficult to discuss these issues with someone outside the family.34,35 In contrast to findings related to perceptions of emotional support, family members of Hispanic patients were more likely than non-Hispanics to report not having as much spiritual or religious support as they would have liked from hospice staff. This finding also supports our fourth hypothesis and fits with past research suggesting that Hispanic individuals frequently rely on religious means of coping with depression and personal struggles.34-36 The fact that families of Hispanic patients tended to have a greater desire for spiritual and religious forms of support could offer an additional explanation for why more secular approaches were perceived as unwanted or more than what was needed. Although not a primary aim of this study, it should also be noted that nonspousal caregivers reporting on older patients who received services in an inpatient setting often tended to report more positive experiences in hospice across a variety of domains. This pattern of findings may stem from a tendency for more distant and perhaps less emotionally invested caregivers (eg, extended family members, friends) and caregivers who have more exposure and opportunities to interact with hospice staff to have fewer concerns. Likewise, older patients may be more likely to be admitted to hospice for chronic health problems, which may not be associated with the same level of concerns compared to younger patients who are perhaps admitted due to an unexpected illness or tragic accident. Despite the contribution of the present investigation in shedding light on the unique experience of Hispanic patients and their families in hospice, this study is not without limitations. For example, the use of a cross-sectional design limits our ability to make any causal claims or examine how observed differences between Hispanic and non-Hispanic individuals might emerge and change over time. These results are also limited
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320 to 1 geographical area making generalizability to regions outside the Southwestern United States difficult. Finally, it should be noted that this study largely relied on single-item measures, and researchers may wish to attempt replication of these findings using validated, multidimensional assessment tools. Notwithstanding these limitations, the findings of this study have important clinical implications that may inform the development of a culturally sensitive model of hospice care for Hispanic patients and their families. In particular, these results suggest that hospice programs would do well to modify the way in which emotional support is provided to Hispanic patients and family members, since traditional forms of support are more likely to be viewed as unwelcome among this group.36 Given Hispanics’ preference for spiritually oriented forms of support, hospices may consider discussing spiritual issues, facilitating religious rituals, and addressing religious/spiritual concerns as part of their routine support services with Hispanic patients who have strong religious beliefs.34-36 Hospices should also make a special effort to thoroughly discuss Hispanic patients and families’ preferences for end-of-life care. When language barriers exist, discussion of these sensitive topics may be facilitated by including Spanish speaking staff to help interpret and clarify key points.31 Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
Notes 1. From this point forward, all caregivers and/or health representative that completed the family evaluation of hospice care (FEHC) survey will be referred to as ‘‘caregivers’’ although some of these individuals may have not been directly involved in the patient’s care. 2. The percentage of change in the odds of a yes or no response based on patient ethnicity is calculated as 100 (odds ratio 1) as has been described elsewhere.33
References 1. A statistical profile of Hispanic Older Americans aged 65þ. Department of Health and Human Services Administration on Aging Web site. http://www.aoa.gov/Aging_Statistics/minority_aging/ Facts-on-Hispanic-Elderly-2008.aspx. Published 2008. Accessed September 5, 2013. 2. NHPCO facts and figures: hospice care in America. National Hospice and Palliative Care Organization Web site. http://www. nhpco.org/sites/default/files/public/Statistics_Research/2012_ Facts_Figures.pdf. Updated 2012. Accessed September 10, 2013. 3. Carrion IV. Communicating terminal diagnoses to Hispanic patients. Palliat Support Care. 2010;8(2):117-123. doi:10.1017/ S147895150999085X. 4. Carrion IV, Bullock K. A case study of Hispanics and hospice care. Int J Humanit Soc Sci. 2012;2(4):9-16.
5. Carrion IV. 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. 6. Colon M. Hospice and Latinos: a review of the literature. J Soc Work End Life Palliat Care. 2005;1(2):27-43. doi:10.1300/ J457v01n02_04. 7. Selsky C, Kreling B, Luta G, et al. Hospice knowledge and intentions among Latinos using safety-net clinics. J Palliat Med. 2012; 15(9):984-990. doi:10.1089/jpm.2011.0517. 8. Kreling B, Selsky C, Perret-Gentil M, Huerta EE, Mandelblatt JS. The worst thing about hospice is that they talk about death’: contrasting hospice decisions and experience among immigrant Central and South American Latinos with USborn White, non-Latino cancer caregivers. Palliat Med. 2010;24(4):427-434. 9. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008;35(4):365-371. 10. Connor SR, Teno J, Spence C, Smith N. Family evaluation of hospice care: results from voluntary submission of data via website. J Pain Symptom Manage. 2005;30(1):9-17. doi:10.1016/j.jpainsymman.2005.04.001. 11. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage. 2001;22(3):752-758. doi:10. 1016/S0885-3924(01)00331-1. 12. Jackson J, Derderian L, White P, et al. Family perspectives on end-of-life care: a metasynthesis. J Hosp Palliat Nurs. 2012; 14(4):303-311. 13. Colon M. The experience of physicians who refer Latinos to hospice. Am J Hosp Palliat Care. 2012;29(4):254-259. doi:10.1177/ 1049909111418777. 14. Carrion IV, Nedjat-Haiem FR, Marquez DX. Examining cultural factors that influence treatment decisions: a pilot study of Latino men with cancer. J Cancer Educ. 2013;28(4):729-737. doi:10. 1007/s13187-013-0522-9. 15. Carrion IV, Nedjat-Haiem FR. Caregiving for older Latinos at end of life: perspectives from paid and family (unpaid) caregivers. Am J Hosp Palliat Care. 2013;30(2):183-191. doi:10. 1177/1049909112448227. 16. Cruz-Oliver DM, Talamantes M, Sanchez-Reilly S. What evidence is available on end-of-life (EOL) care and Latino elders? A literature review. Am J Hosp Palliat Care. 2014;31(1):87-97. doi:10.1177/1049909113480841. 17. Nedjat-Haiem FR, Carrion IV, Cribbs K, Lorenz K. Advocacy at the end of life: meeting the needs of vulnerable Latino patients. Soc Work Health Care. 2013;52(6):558-577. doi:10.1080/ 00981389.2013.779359. 18. Carrion IV, Park NS, Lee BS. Hospice use among African Americans, Asians, Hispanics, and Whites: implications for practice. Am J Hosp Palliat Care. 2012;29(2):116-121. doi:10.1177/ 1049909111410559. 19. Colon M. Acculturation and attitudes of Latinos toward hospice. J Soc Work End Life Palliat Care. 2012;8(3):229-248. doi:10. 1080/15524256.2012.708110.
Downloaded from ajh.sagepub.com by guest on November 16, 2015
Kirkendall et al
321
20. Quinones-Gonzalez S. Bridging the communication gap in hospice and palliative care for Hispanics and Latinos. Omega (Westport). 2013;67(1-2):193-200. 21. Nedjat-Haiem FR, Carrion IV, Ell K, Palinkas L. Navigating the advanced cancer experience of underserved Latinas. Support Care Cancer. 2012;20(12):3095-3104. doi:10.1007/s00520-012-1437-4. 22. Csikai Ellen L. Bereaved hospice caregivers’ perceptions of the end-of-life care communication process and the involvement of health care professionals. J Palliat Med. 2006;9(6): 1300-1309. 23. Schockett ER, Teno JM, Miller SC, Stuart B. Late referral to hospice and bereaved family member perception of quality of end-of-life care. J Pain Symptom Manage. 2005;30(5): 400-407. 24. Holland JM, Keene JR, Kirkendall AM, Luna N. Family evaluation of hospice care: examining direct and indirect associations with overall satisfaction and caregiver confidence. Manuscript Submitted for Publication. 2014. 25. Taxis JC, Keller T, Cruz V. Mexican Americans and hospice care: culture, control, and communication. J Hosp Palliat Nurs. 2008; 10(3):133-141. 26. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88-93. 27. Nedjat-Haiem FR, Carrion IV, Lorenz KA, Ell K, Palinkas L. Psychosocial concerns among Latinas with life-limiting advanced cancers. Omega (Westport). 2013;67(1-2):167-174.
28. Cueller I, Arnold B, Gonzalez G. Cognitive referents of acculturation: assessment of cultural constructs in Mexican Americans. J Community Psychol. 1993;23(4):339-356. 29. Padgett DK, Patrick C, Burns BJ, Schlesinger HJ. Ethnicity and the use of outpatient mental health services in a national insured population. Am J Pub Health. 1994;84(2):222-226. 30. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7(2):247-256. 31. Crawley LM, Marshall PA, Lo B, Koenig BA. Strategies for culturally effective end-of-life care. Ann Intern Med. 2002;136(9): 673-679. 32. Kenward MG, Carpenter J. Multiple imputation: current perspectives. Stat Methods Med Res. 2007;16(3):199-218. doi:10.1177/ 0962280206075304. 33. LaValley MP. Logistic regression. Circulation. 2008;117(18): 2395-2399. doi:10.1161/CIRCULATIONAHA.106.682658. 34. Caplan S, Escobar J, Paris M, et al. Cultural influences on casual beliefs about depression among Latino immigrants. J Transcult Nurs. 2012;24(1):68-77. 35. Hampton NZ., Sharp SE. Shame-focused attitudes toward mental health problems: the role of gender and culture [published online September 6, 2013]. Rehabil Couns Bull. 2013. 36. Martinez Tyson DD, Castaneda H, Porter M, Quiroz M, Carrion I. More similar than different? Exploring cultural models of depression among Latino immigrants in Florida. Depress Res Treat. 2011;2011:564396. doi:10.1155/2011/564396.
Downloaded from ajh.sagepub.com by guest on November 16, 2015
