Journal of Pain and Symptom Management
Volume 38, Issue 3 , Pages 372-380, September 2009

Relationships Between Psychosocial-Spiritual Well-Being and End-of-Life Preferences and Values in African American Dialysis Patients

  • Mi-Kyung Song, PhD, RN

      Affiliations

    • Division of Adult and Geriatric Health, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
    • Corresponding Author InformationAddress correspondence to: Mi-Kyung Song, PhD, RN, School of Nursing, University of North Carolina at Chapel Hill, Carrington Hall, CB# 7460, Chapel Hill, NC 27599-7460, USA.
    • ,
  • Laura C. Hanson, MD, MPH

      Affiliations

    • Division of Geriatric Medicine, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
    • Palliative Care Program, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

Accepted 10 December 2008. published online 09 April 2009.

Article Outline

Abstract 

The objective of the study was to examine whether psychosocial and spiritual well-being is associated with African American dialysis patients' end-of-life treatment preferences and acceptance of potential outcomes of life-sustaining treatment. Fifty-one African Americans with end-stage renal disease (ESRD) completed a sociodemographic questionnaire and interview with measures of symptom distress, health-related quality of life, psychosocial and spiritual well-being, and preferences and values related to life-sustaining treatment choices. The subjects were stratified by end-of-life treatment preferences and by acceptance of life-sustaining treatment outcomes, and compared for psychosocial and spiritual well-being, as well as sociodemographic and clinical characteristics. Individuals who desired continued use of life-sustaining treatment in terminal illness or advanced dementia had significantly lower spiritual well-being (P=0.012). Individuals who valued four potential outcomes of life-sustaining treatment as unacceptable showed a more positive, adaptive well-being score in the spiritual dimension compared with the group that valued at least one outcome as acceptable (P=0.028). Religious involvement and importance of spirituality were not associated with end-of-life treatment preferences and acceptance of treatment outcomes. African Americans with ESRD expressed varied levels of psychosocial and spiritual well-being, and this characteristic was associated with life-sustaining treatment preferences. In future research, the assessment of spirituality should not be limited to its intensity or degree but extended to other dimensions.

Key Words: Spirituality, end-of-life preferences

 

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Introduction 

Although studies have indicated that African Americans generally prefer more aggressive treatment at the end of life than Caucasians,1, 2, 3, 4 the characteristics of those who desire to delay death with life-sustaining measures have not been well described. Some experts hypothesize that one of the reasons African Americans prefer life-sustaining treatment more than their Caucasian counterparts may be their strong religiosity or spirituality.5, 6, 7, 8, 9, 10, 11 However, surprisingly little empirical evidence supports the theory that African Americans' spirituality influences their end-of-life preferences. Furthermore, in empirical studies, religiosity or spirituality typically has been assessed in a restrictive and simplified manner by asking individuals' religious affiliation, degree of religiosity or spirituality, and the frequency of religious involvement. These methodological approaches assume that religion or spirituality varies only in intensity and does not have more complex effects or manifestations.

A recent study11 examined the role of ethnicity and spiritual coping in cancer patients' end-of-life treatment preferences and reported that African Americans were more likely to desire life-sustaining measures than the Caucasians. Among all study participants, belief in divine intervention, turning to God for strength, support, and guidance, and using spirituality to cope with cancer were significantly associated with preference for cardiopulmonary resuscitation (CPR) and life-sustaining measures, but only at a modest level (r<0.40). Spirituality in this study was assessed with dimensions beyond what has been typically asked in other studies, and the study findings reflect an association between individuals' spiritual coping style and their preferences for life-sustaining treatment.

This research raises further questions about how spiritual well-being within illness experience is associated with African Americans' views on life-sustaining treatment. We explored this question using the baseline interview data collected from African Americans with end-stage renal disease (ESRD). The purposes of the study were: 1) to examine the differences in sociodemographic and clinical characteristics and psychosocial-spiritual well-being between African American dialysis patients who would and who would not prefer comfort care only at the end of life; and 2) to determine whether psychosocial-spiritual well-being is associated with their acceptance of potential outcomes of life-sustaining treatment.

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Methods 

Sample and Setting 

This study used the baseline interview data from 51 individuals who participated in a randomized clinical trial of an end-of-life communication intervention and who met the following inclusion criteria: 1) self-identified African American; 2) 18 years or more of age; and 3) receiving dialysis for at least three months before the study enrollment. Subjects were recruited from five dialysis clinics in western Pennsylvania. They were first approached by a social worker at the dialysis clinic between January 2007 and January 2008. Those who indicated an interest in the study were subsequently approached by the research staff for informed consent and a cognitive function test, the 10-item Short Portable Mental Status Questionnaire (SPMSQ).12 Patients with two or fewer errors on the SPMSQ, indicating normal cognitive functioning, were eligible and enrolled in the study after giving informed consent. Of the 101 patients who were deemed eligible and initially approached, one failed the SPMSQ and 49 refused to participate in the study. The study procedures were approved by the University of Pittsburgh Institutional Review Board.

Instruments 

Data were collected using a brief written questionnaire, a structured chart review, and in-person interview. The written sociodemographic questionnaire included data on age, gender, education, marital status, employment status, annual household income, health insurance, religious preference and involvement, and a single item asking the individual to rate the importance of spirituality in life on a 4-point scale (from “not at all important” to “extremely important”). Clinical data collected by chart review included duration of dialysis and comorbidities using the modified Charlson Comorbidity Index (CCI). The CCI incorporates the underlying illness condition for dialysis and other known predictors of complications, such as age, albumin level, diabetes, and cardiovascular disease, and has shown its usefulness as a predictor of mortality in dialysis patients.13 Scores range from 2 to 14, with a higher score indicating a greater risk of mortality. Good interrater reliability for the index has been reported (kappa=0.93) in dialysis patients.14

The in-person interviews included measures of symptom distress, health-related quality of life, psychosocial-spiritual well-being, and preferences and values related to life-sustaining treatment choices. Symptom distress was assessed using the Dialysis Symptom Index, which comprises 30 items that measure the presence (yes/no) of specific physical or emotional symptoms experienced during the previous seven days.15, 16 Each item is scored on a 5-point Likert scale (1=“not at all bothersome” to 5=“bothered very much”) to assess the distress of each symptom. The overall symptom-burden score is computed by summing the number of symptoms present (range: 0–30). A total symptom distress score is calculated by summing distress scores for individual symptoms (range: 0–150). The scale's content validity and test-retest reliability have been reported with African American and Caucasian dialysis patients (percent total agreement=0.80, kappa=0.48–0.90).15 The SF12v2™ Health Survey (QualityMetric Inc., Lincoln, RI) was used to measure health-related quality of life based on eight dimensions: physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health. Each dimension is scored using a norm-based method to have a mean of 50 and a standard deviation (SD) of 10 in the general U.S. population. These eight scores are aggregated to compute two standardized summary scores, Physical Component Summary (PCS) and Mental Component Summary (MCS).17

Psychosocial-spiritual well-being was measured using the 28-item Self-Perception and Relationship Tool.18 This instrument measures the perceptions of the impact of illness experience on physical and mental-emotional, as well as social and spiritual dimensions. Each item is scored with a 7-point semantic rating scale (+3 to −3) between word pairs. A mean score between +1 and +2 indicates adaptive well-being with the current illness. The tool has consistently shown good internal consistency (α≥0.94) and convergent and criterion-related validities (0.49–0.67) in renal and cancer patients.18

Specific items in the interview were used to clarify the patient's threshold for unacceptable conditions/outcomes of life-sustaining treatment. In our pilot study,19 four outcomes of life-sustaining treatment were chosen based on a comprehensive literature review and in-depth interviews with 10 African Americans with ESRD who identified conditions that would be unacceptable and considered worse than death. These items ask patients to imagine that they develop cancer that has spread, or have a severe stroke or heart attack and become seriously ill in the hospital. Patients then were asked to think about conditions that for them would be worse than death and they would want their family member to make a decision to stop life-sustaining treatment, including dialysis, and focus on treatment to make them as comfortable as possible. Patients were presented with four outcomes and asked whether the outcome would be “acceptable,” “not acceptable,” or “unsure.” The outcomes of life-sustaining treatment include: cannot recognize my family or friends; only responding to pain and still in untreatable pain most of the time; can no longer control my bowels; and have to live in a nursing home until death. Patients were encouraged to add any other conditions that were not addressed in the four outcomes.

End-of-life treatment preferences were assessed using the Goals of Care document, which presents two scenarios describing medical conditions that commonly occur in patients with ESRD. The first scenario describes a condition where the patient develops cancer that spreads or has severe complications and cannot speak for him- or herself. The medical team believes that he or she is unlikely to recover and that continuing life-sustaining treatment, including dialysis, is no longer beneficial to him or her. The second scenario describes a condition where the patient develops advanced dementia and he or she can no longer be him- or herself. His or her dementia no longer responds to treatment. For each scenario, patients choose one of three options: “the goals of care should be focused on delaying my death, and thus I want to continue life-sustaining treatment;” “the goals of care should be focused on my comfort and peace, and thus I do not want life-sustaining treatment, including dialysis;” and “I am not sure.”

Data Analysis 

Descriptive statistics were used to summarize the sample characteristics. The subjects' responses were stratified by end-of-life treatment preferences (comfort care only in both scenarios, continue use of dialysis in both scenarios, or mixed preferences). Responses also were stratified by how they valued four potential life-sustaining treatment outcomes (unacceptable for all four outcomes vs. acceptable for at least one outcome). Nonparametric tests (Chi-squared test, Fisher's exact test, or Mann Whitney U test as appropriate) were used to examine group differences in sociodemographic and clinical characteristics. To test the hypotheses whether psychosocial and spiritual well-being differs by end-of-life preferences and by values of life-sustaining treatment outcomes, permutation tests were used with Monte Carlo estimation procedures.20, 21, 22, 23 Permutation tests are a resampling approach and are particularly useful for statistics based on small samples where asymptotics do not work properly.20 The procedures began with computing a test statistic (either t or F as appropriate) for the data. Second, the data were permuted (rearranged) repeatedly. The number of repetitions was 10,000 based on Lunneborg's formula.24 Third, the test statistic was computed for each of the resulting data permutations. These data permutations, including the one representing the obtained results, comprise the reference set for determining significance. Fourth, the significance or probability value was computed. The proportion of data permutations in the reference set that has test statistic values greater than or equal to (or less than or equal to) the value for the observed results was the P value.

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Results 

Sample Characteristics 

Table 1 presents the characteristics of the overall sample and the three groups stratified by their end-of-life treatment preferences in two clinical scenarios. The mean age of the overall sample was 58 years and, roughly, half the subjects were male. Seven patients completed less than high school education. Over 90% (n=47) of the sample was retired or disabled. Seventeen (33.3%) were currently married or living with a significant other and 12 (23.5%) were never married. The patients were undergoing dialysis treatment for nearly four years on average. The mean of CCI was 6.18, a high score suggesting a 27% one-year mortality rate.25 The patients were experiencing a total of 13 symptoms at that moment. The mean PCS of the SF12 (SD) was 34.13 (9.95), which is a somewhat worse physical health-related quality of life than the 50th percentile for the U.S. kidney disease population.17 However, the mean MCS (SD) was 49.03 (12.72), which is somewhat higher mental health-related quality of life than the 50th percentile for the U.S. kidney disease population of a similar age (=44.82). Of the 51 subjects, two patients were listed on the kidney transplant candidate list at the time of study participation. All subjects had a durable power of attorney for health care document in their medical charts. However, it was unknown whether they had a living will, because having an advance directive was not an inclusion criterion.

Table 1. End-of-Life Treatment Preferences by Sample Characteristics
CharacteristicsTotal Sample (n=51)End-of-Life Treatment Preferences in Two Scenarios
Both Continue Dialysis (n=11)Mixed (n=13)Both Comfort Care Only (n=27)
Sociodemographic
Age57.78±13.1852.91±14/6662.15±13.5057.67±12.14
Male29 (56.90)7 (63.64)8 (61.54)14 (51.85)
Female22 (43.10)4 (36.36)5 (38.46)13 (48.15)
Currently married15 (29.40)3 (27.30)2 (15.40)10 (37.00)
Disabled/unable to work30 (58.80)11 (100.0)8 (61.5)11 (40.70)
Education in years13.63±2.6813.82±2.9312.85±1.7713.93±2.95
Annual household income
<$13,00023 (45.10)7 (63.64)6 (46.15)10 (37.04)
≥$13,00028 (54.90)4 (36.36)7 (53.85)17 (62.96)

Clinical
Duration of dialysis in months47.77±49.2245.68±51.6953.35±55.3145.94±46.89
CCI6.18±2.494.91±1.977.00±2.836.30±2.38
Dialysis symptom distress40.96±24.6839.09±30.4341.92±24.3841.26±23.21
SF12v2
PCS34.14±9.9535.84±9.5228.98±7.8535.92±10.45
MCS49.03±12.7245.88±11.6251.01±11.7849.36±13.75

Religious custom and psychosocial-spiritual well-being
Extent of following religious customs and practices
Never or sometimes18 (35.29)5 (45.45)3 (23.08)10 (37.04)
Frequently or always33 (64.71)6 (54.55)10 (76.92)17 (62.96)
Importance of spirituality in life
<Extremely20 (39.22)5 (45.45)5 (38.46)10 (37.04)
Extremely31 (60.78)6 (54.55)8 (61.54)17 (62.96)
Psychosocial-spiritual well-being
Mental-emotionala0.88±1.120.95±1.261.20±1.260.69±0.99
Socialb1.91±1.111.51±1.492.04±0.972.01±1.0
Spiritualc1.53±1.320.51±1.761.88±1.161.77±0.98

aF=0.926, P=0.40.

bF=0.929, P=0.41.

cF=4.830, P=0.012; P-values are based on permutation tests.

Religiosity and Spirituality Variables and Psychosocial-Spiritual Well-Being 

Sixty-five percent of the total sample responded that they followed religious customs and practices frequently or always, and 61% reported that spirituality was extremely important in their lives. The social and spiritual well-being scores (≥1.0) in the total sample indicated a positive, adaptive well-being in those dimensions. The mental-emotional well-being scores (M=0.88) reflect the subjects' less-than-optimal emotional well-being.

End-of-Life Treatment Preferences and Values of the Life-Sustaining Treatment Outcomes 

Of the 51 participants, 27 selected comfort care for both scenarios of terminal illness and advanced dementia, 11 selected continued use of dialysis and other forms of life-sustaining treatment in both scenarios, and 13 had mixed preferences. Seventeen (33.3%) responded that all four outcomes of life-sustaining treatment presented were unacceptable. The outcome endorsed as unacceptable most often was “If I can no longer control my bowels” (n=41 [80.4%]), followed by “If I am only responding to pain and yet in untreatable pain most of the time” (n=38 [74.5%]) and “If I cannot recognize my family or friends” (n=34 [66.7%]). Half the sample (n=25) found the outcome “If I have to live in a nursing home until death after surviving hospitalization” to be unacceptable.

Associations of the Sociodemographic and Clinical Characteristics with End-of-Life Treatment Preferences and Values of the Life-Sustaining Treatment Outcomes 

There were no significant differences among the three groups stratified by the end-of-life treatment preferences in sociodemographic and clinical characteristics. Religious involvement and importance of spirituality were not associated with these treatment preferences. Similarly, sociodemographic and clinical characteristics as well as religious involvement and importance of spirituality did not significantly differ between the two groups stratified by the values of the life-sustaining treatment outcomes.

End-of-Life Treatment Preferences, Values of the Life-Sustaining Treatment Outcomes, and Psychosocial-Spiritual Well-Being 

Spiritual well-being was associated with participants' choices in goals of care in end-of-life scenarios. Likewise, spiritual well-being was associated with their willingness to accept potential poor health outcomes from life-sustaining treatments. Individuals who desired continued use of life-sustaining treatment in both scenarios of terminal illness and advanced dementia had significantly lower spiritual well-being compared with those favoring comfort care in one or both scenarios (obtained F=4.83, P=0.012) (Table 1). Similarly, the group endorsing all four poor health outcomes as unacceptable showed a more positive, adaptive well-being score in the spiritual dimension (obtained t=2.17, P=0.028) compared with the group endorsing at least one outcome acceptable (Table 2).

Table 2. Acceptance of Outcomes of Life-Sustaining Treatment by Religious Involvement, Importance of Spirituality, and Psychosocial-Spiritual Well-Being
Dimensions“Unacceptable” for All 4 Outcomes (n=17)“Acceptable” for at Least 1 Outcome (n=34)
Extent of following religious customs and practices, n (%)
Never or sometimes (n=18)7 (41.18)11 (32.35)
Frequently or always (n=33)10 (58.82)23 (67.66)

Importance of spirituality in life
<Extremely (n=20)7 (41.18)13 (38.24)
Extremely (n=31)10 (58.82)21 (61.76)

Psychosocial-spiritual well-being dimensions, M±SD
Mental-emotionala0.66±1.000.99±1.18
Socialb2.29±0.821.72±1.20
Spiritualc2.03±1.021.28±1.39

at=0.98, P=0.41.

bt=1.78, P=0.08.

ct=2.17, P=0.043; P-values are based on permutation tests.

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Discussion 

This study is the first to examine spiritual well-being as a dimension of religious and spiritual influences on clinical treatment choices. In a group of African Americans with ESRD on dialysis, we found that greater spiritual well-being characterized those individuals who would choose comfort care only if faced with terminal cancer or advanced dementia. Individuals with higher spiritual well-being also expressed a greater tendency to stop life-sustaining treatments if faced with four adverse health outcomes. Notably, common assessments of religious practices and importance of spirituality were not associated with these preferences or values. These findings indicate that the intensity of religious or spiritual expression may not explain African Americans' preference for a higher use of life-sustaining treatment. Rather, those with better spiritual well-being may be more willing to forgo life-sustaining treatment, whereas those who do not derive a sense of well-being from spiritual sources of support may be less willing to do so.

The latter result may appear counterintuitive or contradictory to the current literature. However, it is important to note the conceptual distinction among religiosity, spirituality, and spiritual well-being. Religiosity or religiousness often refers to the various organized, individual, and attitudinal manifestations of different faith traditions.26 Spirituality refers to the individual's personal experience, commonly seen as connected to some formal religion but increasingly viewed as independent of any organized religion.27, 28 Spiritual well-being is defined as a sense of harmonious interconnectedness between self and others or a transcendent being and achieved through an integrative growth process that leads to a realization of the ultimate purpose and meaning of life.29 These three constructs are related but distinctive, and it is possible that people with strong religiosity or spirituality may not necessarily be in high spiritual well-being, particularly in a time of illness or suffering. In this study, most of the sample members endorsed a high degree of religious involvement and the importance of spirituality in life; nonetheless, the level of spiritual well-being varied. Furthermore, the correlations of religious involvement and the importance of spirituality in life with spiritual well-being were modest (r<0.45).

The findings that spiritual well-being, not the degree of religiousness or spirituality, are correlated with African Americans' preferences and values underscore the importance of exploring end-of-life preferences and values in the context of individuals' illness experiences. Previous studies indicated that patients with ESRD experienced severe burden of illness and existential suffering (e.g., questioning life on life support) during the course of illness.30, 31 Therefore, other dimensions of spirituality should be assessed to better understand what mediates the relationship between spirituality and end-of-life treatment preferences. Our findings also suggest that African American dialysis patients who report strong religiosity and spirituality may have varying levels of spiritual well-being and may express differing end-of-life treatment preferences and values than the existing, common belief that they would prefer aggressive treatment at end of life. This is important information for health care providers, as they are facing increasing responsibility for spiritual care for those with serious illness.32, 33, 34, 35, 36, 37

The four outcomes of life-sustaining measures used in this study were selected based on interviews with a group of African American dialysis patients who had similar characteristics of the study sample. Although others also used scenarios reflecting values of treatment outcomes to understand the treatment preferences of seriously ill patients,38, 39, 40 our approach to assess African American dialysis patients' acceptance of potential outcomes of life-sustaining measures differs in that the four treatment outcomes were drawn from the members of the study patient population, and individual responses to the outcomes reveal their unique values as shown in the results. Again, the fact that these values were significantly associated with spiritual well-being enhances our understanding of factors influencing end-of-life treatment preferences and values.

Conclusions drawn from our findings are preliminary, given the study limitations. First, our sample size was small, although it was determined based on the number of subjects required for the original clinical trial of an end-of-life communication intervention. Although the sample appeared to be similar to African Americans in the national dialysis population,41 our sample was somewhat younger and consisted of patients who met our specific inclusion criteria. Therefore, our study findings may not be generalizable to a larger patient group. Second, the study included solely dialysis patients without comparison groups of African Americans with other serious illnesses, and thus, caution is needed in interpreting the results.

Although religiosity or religion may provide intellectual, behavioral, and social form to spiritual expression,42, 43 the common assessment of spirituality has been limited to degree or intensity of spirituality or the frequency of religious involvement. However, several studies revealed that spirituality provides African Americans with guidance and hope and is a major resource for adjustment to and coping with serious illness.44, 45, 46 Religion and spirituality are complex and heterogeneous aspects of human experience. Variation in intensity of belief alone is unlikely to represent individual differences in interpretation of health and healing in relationship to spiritual belief. Future research should include the assessment of other dimensions of spirituality, rather than a simplified measure of intensity, to explore how spirituality manifests and contributes to African Americans' treatment preferences and values.

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Acknowledgments 

The authors sincerely thank Ms. Anne-Marie Shields, BA, RN, and Ms. Mary Connolly, BSN, RN, at the University of Pittsburgh School of Nursing for their efforts in subject recruitment, data collection, and data management.

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References 

  1. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics. 1993;4:155–165
  2. Garrett JM, Harris RP, Norburn JK, Patrick DL, Danis M. Life-sustaining treatments during terminal illness: who wants what?. J Gen Intern Med. 1993;8:361–368
  3. Hopp FP, Duffy SA. Racial variations in end-of-life care. J Am Geriatr Soc. 2000;48:658–663
  4. McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11:651–656
  5. Waters CM. Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11:385–398
  6. Heeren O, Menon AS, Raskin A, Ruskin P. Religion and end of life treatment preferences among geriatric patients. Int J Geriatr Psychiatry. 2001;16:203–208
  7. Shrank WH, Kutner JS, Richardson T, et al. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med. 2005;20:703–709
  8. Bullock K, McGraw SA, Blank K, Bradley EH. What matters to older African Americans facing end-of-life decisions? A focus group study. J Soc Work End Life Palliat Care. 2005;1:3–19
  9. Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc. 2005;53:711–719
  10. Balboni TA, Vanderwerker LC, Block SD, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol. 2007;25:555–560
  11. True G, Phipps EJ, Braitman LE, et al. Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med. 2005;30:174–179
  12. Pfeiffer E. A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. J Am Geriatr Soc. 1975;23:433–441
  13. Fried L, Bernardini J, Piraino B. Charlson comorbidity index as a predictor of outcomes in incident peritoneal dialysis patients. Am J Kidney Dis. 2001;37:337–342
  14. Bernardini J, Callen S, Fried L, Piraino B. Inter-rater reliability and annual rescoring of the Charlson comorbidity index. Adv Perit Dial. 2004;20:125–127
  15. Weisbord SD, Fried LF, Arnold RM, et al. Development of a symptom assessment instrument for chronic hemodialysis patients: the Dialysis Symptom Index. J Pain Symptom Manage. 2004;27:226–240
  16. Weisbord SD, Fried LF, Unruh ML, et al. Associations of race with depression and symptoms in patients on maintenance haemodialysis. Nephrol Dial Transplant. 2007;22:203–208
  17. Ware J, Kosinski M, Turner-Bowker DM, Gandek B. How to score version 2 of the SF-12 Health Survey (with a supplement documenting version 1). Lincoln, Rhode Island: QualityMetric Inc.; 2002;
  18. Atkinson MJ, Wishart PM, Wasil BI, Robinson JW. The Self-Perception and Relationships Tool (S-PRT): a novel approach to the measurement of subjective health-related quality of life. Health Qual Life Outcomes. 2004;2:36–50
  19. Song M, Donovan H, Piraino B, et al. Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease: a pilot study. Appl Nurs Res. In press.
  20. Edgington ES. Randomization tests. 3rd ed.. New York: Marcel Dekker, Inc.; 1995;
  21. Berger VW. Pros and cons of permutation tests in clinical trials. Stat Med. 2000;19:1319–1328
  22. Ludbrook J. Advantages of permutation (randomization) tests in clinical and experimental pharmacology and physiology. Clin Exp Pharmacol Physiol. 1994;21:673–686
  23. Ludbrook J, Dudley H. Why permutation tests are superior to t and F tests in biomedical research. Am Stat. 1998;52:127–132
  24. Lunneborg CE. Data analysis by resampling: Concepts and applications. Pacific Grove: Duxbury Press; 2000;
  25. Cohen LM, Moss AH, Weisbord SD, Germain MJ. Renal palliative care. J Palliat Med. 2006;9:977–992
  26. Wulff DM. Psychology of religion, classic and contemporary. 2nd ed.. New York: John Wiley; 1997;
  27. Miller WR, Thoresen CE. Spirituality, religion, and health. An emerging research field. Am Psychol. 2003;58:24–35
  28. Thoresen CE, Harris AH. Spirituality and health: what's the evidence and what's needed?. Ann Behav Med. 2002;24:3–13
  29. Hungelmann J, Kenkel-Rossi E, Klassen L, Stollenwerk R. Focus on spiritual well-being: harmonious interconnectedness of mind-body-spirit—use of the JAREL spiritual well-being scale. Geriatr Nurs. 1996;17:262–266
  30. Gregory DM, Way CY, Hutchinson TA, Barrett BJ, Parfrey PS. Patients' perceptions of their experiences with ESRD and hemodialysis treatment. Qual Health Res. 1998;8:764–783
  31. Russ AJ, Shim JK, Kaufman SR. “Is there life on dialysis?”: time and aging in a clinically sustained existence. Med Anthropol. 2005;24:297–324
  32. Block SD. Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA. 2001;285:2898–2905
  33. Branch WT, Torke A, Brown-Haithco RC. The importance of spirituality in African-Americans' end-of-life experience. J Gen Intern Med. 2006;21:1203–1205
  34. Daaleman TP, Perera S, Studenski SA. Religion, spirituality, and health status in geriatric outpatients. Ann Fam Med. 2004;2:49–53
  35. Driscoll J. Spirituality and religion in end-of-life care. J Palliat Med. 2001;4:333–335
  36. McClain CS, Rosenfeld B, Breitbart W. Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet. 2003;361:1603–1607
  37. Hanson LC, Dobbs D, Usher BM, et al. Providers and types of spiritual care during serious illness. J Palliat Med. 2008;11:907–914
  38. Fried TR, Bradley EH, Towle VR. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci. 2002;57:S348–S354
  39. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061–1066
  40. Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006;26:313–322
  41. U.S. Renal Data System . USRDS 2007 Annual data report: Atlas of end-stage renal disease in the United States. Vol. 2007. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2007;
  42. Burkhardt MA. Spirituality: an analysis of the concept. Holist Nurs Pract. 1989;3:69–77
  43. Nagai-Jacobson MG, Burkhardt MA. Spirituality: cornerstone of holistic nursing practice. Holist Nurs Pract. 1989;3:18–26
  44. Mattis J. African American women's definitions of spirituality and religiosity. J Black Psych. 2000;26:101–122
  45. Meraviglia MG. Critical analysis of spirituality and its empirical indicators. Prayer and meaning in life. J Holist Nurs. 1999;17:18–33
  46. Newlin K, Knafl K, Melkus GD. African-American spirituality: a concept analysis. Adv Nurs Sci. 2002;25:57–70

 This study was supported by the National Institutes of Health, National Institute for Nursing Reserach, NINR R21NR009662-01A1.

PII: S0885-3924(09)00303-0

doi:10.1016/j.jpainsymman.2008.11.007

Journal of Pain and Symptom Management
Volume 38, Issue 3 , Pages 372-380, September 2009

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