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Applied Nursing Research 23 (2010) 65–72www.elsevier.com/locate/apnr

Effects of an intervention to improve communication about end-of-lifecare among African Americans with chronic kidney disease

Mi-Kyung Song, PhD, RNa,b,⁎, Heidi S. Donovan, PhD, RNb, Beth M. Piraino, MDc,Jiyeon Choi, PhD, RNb, Judith Bernardini, BSNc, Denise Verosky, MSNd,

Sandra E. Ward, PhD, RN, FAANe,1

aUniversity of North Carolina at Chapel Hill School of Nursing, Chapel Hill, NC 27599, USAbUniversity of Pittsburgh School of Nursing, Pittsburgh, PA 15261, USAcUniversity of Pittsburgh School of Medicine, Pittsburgh, PA 15261, USA

dNursing Education and Research, University of Pittsburgh Medical Center, Pittsburgh, PA 15213, USAeUniversity of Wisconsin-Madison School of Nursing, Madison, WI 53792, USA

Received 11 June 2007; revised 2 May 2008; accepted 9 May 2008

Abstract The prevalence of and mortality from chronic kidney disease (CKD) are high among African

⁎ Corresponding aE-mail address: so1 Senior author: T

edu (S.E. Ward).

0897-1897/$ – see frodoi:10.1016/j.apnr.200

Americans. Interventions to improve knowledge of the likely illness course and the benefits and risksof life-sustaining treatment at the end-of-life are needed for African Americans with CKD and theirsurrogate decision makers. Nineteen African Americans with stage 5 CKD and their surrogates wererandomized to either patient-centered advance care planning (PC-ACP) or usual care. PC-ACP dyadsshowed greater improvement in congruence in end-of-life treatment preferences (p b .05) and higherperceived quality of communication (p b .05) than do control dyads, but the two groups did not differon other primary outcomes or acceptability measures, such as perceptions of cultural appropriate-ness. At posttest, 80% of patients in the intervention group reported that they would choose tocontinue all life-sustaining treatments in a situation of a low chance of survival, whereas 28.6% ofpatients in the control group reported that they would make that choice. At posttest, 90% of patientsin the intervention group reported that they would choose to undergo cardiopulmonary resuscitationeven if the chance of surviving the attempt would be low, whereas 57% of patients in the controlgroup reported that they would make that choice. PC-ACP can be effective in improving patient andsurrogate congruence in end-of-life treatment preferences. However, the results suggest a need forfurther improvements in the intervention to enhance cultural appropriateness for African Americanswith CKD.

© 2010 Elsevier Inc. All rights reserved.

Renal replacement therapy (dialysis or kidney transplant)is central to survival for individuals with stage 5 chronickidney disease (CKD; Chambers, Germain, & Brown, 2004).However, patients on dialysis have significant comorbiditiesand high mortality rates. Up to 50% have diabetes, coronaryartery disease, or congestive heart failure, and 20% haveperipheral vascular disease (U.S. Renal Data System, 2007).Thus, patients with CKD are likely to experience sudden

uthor. Tel.: +1 919 843 9496; fax: +1 919 843 9900.ngm@email.unc.edu (M.-K. Song).el.: +1 608 263 5277; e-mail address: sward@wisc.

nt matter © 2010 Elsevier Inc. All rights reserved.8.05.002

declines or complications that leave their responsiblesurrogate decision makers unprepared for treatment deci-sions. Consequently, clinicians' effective communicationabout future medical care is critical for patients with CKDand their families.

The prevalence and incidence of CKD are higher inAfrican Americans than those in other ethnic groups (U.S.Renal Data System, 2007), but efforts to improve end-of-lifecommunication with African Americans have been sorelylacking (Kwak & Haley, 2005). For African Americans, end-of-life discussions may be particularly difficult because theymay mistrust the health care system and because thesepatients and their health care providers may lack a shared

66 M. Song et al. / Applied Nursing Research 23 (2010) 65–72

understanding of the meaning of illness or death (Kagawa-Singer & Blackhall, 2001).

Advance care planning (ACP), defined as an interactionwith a patient to discuss the patient's future treatment andcare needs (Emanuel, 2004), has been promoted for patientswith CKD. However, evidence indicates that ACP focusingon the completion of an advance directive results in limitedbenefit (Calvin, 2004; Cohen, Germain, & Poppel, 2003;Holley et al., 1999; Mendelssohn & Singer, 1994). There-fore, this study was conducted to evaluate an intervention,patient-centered advance care planning (PC-ACP), designedto enhance communication regarding end-of-life care.

An important goal of PC-ACP is to improve under-standing—on the part of both the patient and the surrogate—of the patient's current illness, values, and preferences.PC-ACP is an educational process based on the representa-tional approach to patient education (Donovan & Ward,2001). The representational approach is based on twocomplementary theories regarding the structure of knowl-edge and processes of learning (Donovan & Ward, 2001;Donovan et al., 2007). The first theory, Leventhal'scommon sense model, proposes that individuals have aset of beliefs (representations) regarding their healthproblems. In general, illness representations are made upof five dimensions: (a) identity (how one describes thesymptoms of the health problem), (b) cause (an individual'sbeliefs about the origin of the health problem), (c) timeline(temporal ideas, such as the acute or chronic nature of theproblem), (4) consequences (ideas about the short- or long-term outcomes of the health problem), and (5) cure/control(beliefs about the extent to which an individual can controlor cure the health problem; Leventhal & Diefenback, 1991;Leventhal, Nerenz, & Steele, 1984). A critical feature ofillness representations is that they provide a cognitiveframework in which new information is processed.

The second core theory of the representational approach isthe conceptual change model, which identifies conditionsthat increase the likelihood that learning (conceptual change)will occur. These conditions include (a) an opportunity toreflect and comment on current ideas and their conse-quences; (b) dissatisfaction with current ideas or a recogni-tion of their limitation; and (c) alternative information that isseen as intelligible, plausible, and beneficial (Donovan &Ward, 2001; Donovan et al., 2007; Hewson, 1993; Posner,Strike, Hewson, & Gertzog, 1982).

An educational intervention using the representationalapproach systematically explores patient's existing illnessrepresentations to encourage the patient to examine thosebeliefs carefully. Through this discussion, the clinician andpatient have the opportunity to recognize gaps, confusions,and misconceptions in the patient's representation. Equallyimportant is that, by understanding the individual's repre-sentations of the health problem, the clinician can providenew information in a specific, highly relevant, individualizedmanner that is more likely to be accepted by the patient(Donovan & Ward, 2001; Donovan et al., 2007).

Patient-centered advance care planning was generated byintegrating the representational approach and an ACPfacilitator training program, Respecting Choices, a programthat has been successfully implemented in many clinicalcommunities. Respecting Choices promotes skills related toinitiating discussions, assisting individuals in the identifica-tion of values and goals related to their health care, anddeveloping educational and organizational systems that areeffective in implementing an individual's plan of care(Briggs, 2003; Hammes & Briggs, 2000). The PC-ACPintervention has been demonstrated to have beneficial effectsfor Caucasian patients and their surrogates (Briggs, Kirchh-off, Hammes, Song, & Colvin, 2004; Song, Kirchhoff,Douglas, Ward, & Hammes, 2005). For example, PC-ACPwas effective in improving surrogate's understanding of theirloved one's end-of-life preferences, thereby increasingpatient–surrogate congruence, decreasing patient's per-ceived difficulty in making end-of-life choices, and increas-ing satisfaction with the quality of patient–cliniciancommunication about end-of-life care.

The potential benefits and limitations of PC-ACP havenot been evaluated in African Americans. It is particularlyimportant to conduct such an evaluation because ofdocumented concerns about African Americans' mistrust inthe health care system, their preferences for life-sustainingtreatment at the end of life (Kagawa-Singer & Blackhall,2001; Phipps et al., 2003; Waters, 2001), and the potentialinfluence of spirituality on end-of-life decision making inthis population (Bullock, McGraw, Blank, & Bradley, 2005;Heeren, Menon, Raskin, & Ruskin, 2001; Waters, 2001).Specifically, it is important to evaluate whether PC-ACP canactually increase African American surrogates' comfortlevels about end-of-life decision making and whetherPC-ACP is consistent with African American dyad's valuesand spiritual beliefs. Therefore, the aims of this pilot studywere to (a) determine the feasibility and acceptability ofPC-ACP among African Americans with stage 5 CKD andtheir surrogate decision makers and (b) examine thepreliminary short-term effects of PC-ACP compared withthose on usual care on the following outcomes: (a) patient'slevel of difficulty in making choices, (b) patient–surrogatecongruence in end-of-life care preferences, (c) surrogate'slevel of comfort in decision making, and (d) psychospiritualwell-being of patient and surrogate.

1. Methods

1.1. Sample and design

Dialysis clinic patients were eligible to join the study ifthey (a) had been receiving either center hemodialysis orhome peritoneal dialysis for at least 3 months, (b) were overthe age of 18, and (c) had a surrogate decision maker whowas over the age of 18. Thirty-four patients were assessed foreligibility and approached with study information by a socialworker at the clinic. Nineteen patient and surrogate dyads

67M. Song et al. / Applied Nursing Research 23 (2010) 65–72

who joined the study as pairs were stratified by type ofdialysis (hemodialysis vs. peritoneal dialysis) and randomlyassigned to either PC-ACP or usual care control (Fig. 1).Random assignment occurred by sequential, opaque,numbered envelopes prepared by an individual not asso-ciated with the study. Assessments were done at enrollment(baseline) and 1 week after baseline by data collectors whowere blind to group assignments. The sample size wasdetermined based on the feasibility to recruit and retainparticipants in the given period for the study.

1.2. Treatment conditions

1.2.1. Patient-centered advance care planning interventionThe goals of PC-ACP were to help patients and their

surrogates better understand the course of the patient'sillness and to clarify their values regarding life-sustainingtreatment under situations where survival or quality of lifemight be severely undermined. PC-ACP was an in-depthinterview with the patient–surrogate dyad, delivered by atrained nurse interventionist who had nearly 20 years ofclinical experience in medical–surgical nursing and hadcompleted 2.5 days of PC-ACP training. The interventiontook place over approximately 1 hour (from 48 to 65minutes) in a face-to-face session. During that session, theinterventionist addressed the five elements of the repre-sentational approach: (a) representational assessment of

Fig. 1. Participant's progress in the study. ⁎The surrogate did

participants' beliefs about their illness condition along thefive dimensions of illness representation; (b) exploration ofgaps or misunderstandings regarding CKD and its progres-sion and life-sustaining treatment, including dialysis; (c)creation of conditions for conceptual change; (d) introduc-tion of replacement information; and (e) summarization ofthe discussion (Donovan & Ward, 2001; Donovan et al.,2007). The intervention has been described in detailelsewhere (Briggs, 2003; Song, Kirchhoff, Douglas,Ward, & Hammes, 2005).

1.2.2. Usual careWritten information on advance directives was provided

to every patient by a nurse or social worker who encouragedpatients to complete an advance directive and addressed theirquestions about life-sustaining treatment options. Completedadvance directives were placed in the medical record.Questions about medical conditions and end-of-life treatmentoptions were referred to patients' physicians.

1.3. Measures

1.3.1. Descriptive measuresSociodemographic and clinical information was collected

from all dyads. Patient's comorbid conditions and risk ofmortality were scored using the Charlson comorbidity index(CCI; Charlson, Pompei, Ales, & MacKenzie, 1987).Possible scores range from 2 to 14; higher scores indicate

not want to participate in the study after randomization.

68 M. Song et al. / Applied Nursing Research 23 (2010) 65–72

a greater mortality risk. The 30-item dialysis symptom indexassesses physical and emotional symptoms specific tochronic dialysis (Weisbord et al., 2004). Response optionsrange from 0 (not at all) to 4 (very much); higher scoresindicate greater symptom burden (Cronbach's α = .87).

1.3.2. Outcome measuresPatient–Surrogate congruence in treatment preferences

was measured using the statement of treatment preferences(Briggs, Kirchhoff, Hammes, Song, & Colvin, 2004). Threevignettes specific to patients with CKD undergoing dialysiswere presented. For each vignette, patients and theirsurrogates were asked to independently choose one ofthree options for each of the vignettes, “Continue alltreatment to prolong my life,” “Stop all treatment,” and“Don't know.” The three vignettes include a situation with alow chance of survival, a situation of a high chance ofsurvival with permanent physical impairment, and a situationwith high chance of survival with permanent cognitiveimpairment. Two additional items ask about preferences forreceiving cardiopulmonary resuscitation (CPR) and theextent to which the patient wishes to grant decision-makingauthority to the surrogate. Congruence between patient's andsurrogate's answers was assessed, with a possible range from0 (incongruent in all five decisions) to 5 (congruent in alldecisions).

Patients' level of difficulty in making choices wasmeasured using the 13-item decisional conflict scale (Song& Sereika, 2006). They responded on a 5-point scale from 1(strongly agree) to 5 (strongly disagree). A mean of the13 items was used in the analyses, and a score ≥2 indicatesdifficulty in making choices (Cronbach's α = .91).

Surrogate's level of comfort in decision making wasmeasured using the decision-making confidence scaledeveloped for this study. The instrument consists of fiveitems with response options from 0 (not confident at all) to4 (very confident), reflecting an individual's level ofcomfort in the role of surrogate. A mean of the five itemswas used in the analyses (Cronbach's α = .85).

Psychospiritual well-being of patient and surrogate wasmeasured using the 28-item Self-Perception and Relation-ship Tool (Atkinson, Wishart, Wasil, & Robinson, 2004).Each item is scored with a 7-point rating scale (+3 to −3)between word pairs. A mean of the 28 items was used inthe analyses. Good convergent and criterion-relatedvalidity have been shown (Atkinson, Wishart, Wasil, &Robinson, 2004) and Cronbach's α = .98.

1.3.3. Feasibility and acceptability measuresThe feasibility of recruiting African American patients

with CKD and their surrogates was assessed by trackingthe proportion of dyads who agreed to participate amongthose who were eligible for the study and by trackingreasons for refusal. The feasibility of conducting PC-ACPwas assessed by tracking the proportion of dyads thatcompleted the intervention among those who consented

and tracking the proportion of dyads that completed theentire study.

The acceptability of PC-ACP was assessed in three ways.The quality of patient–clinician communication about end-of-life care (Curtis, Patrick, Caldwell, Greenlee, & Collier,1999) consists of four items to determine the quality ofcommunication. Items are rated on a 3-point scale from noto definitely yes, and a sum of the 4 items was used in theanalyses. Cronbach's alpha in this study was .90. Theinstrument also includes a single generic question rating thequality of communication (poor to excellent). The patient–clinician interaction index (Saha, Arbelaez, & Cooper,2003) consists of five questions about specific clinicianbehaviors indicative of quality interactions. Participantsrespond on a 4-point scale from a great deal to none at allregarding clinician behaviors such as listening, explaining,participatory decision making, spending time, and havingrespect. A sum of these items, ranging from 5 to 20, is usedas a patient–clinician interaction index, with lower scoresindicating better interaction (Cronbach's α = .93). Culturalsensitivity was measured using the 2-item clinician'scultural sensitivity (Saha, Arbelaez, & Cooper, 2003),with a 5-point response scale from strongly agree tostrongly disagree: (a) “My health care provider or theinterventionist (for the intervention dyads) understands mybackground and values” and (b) “My health care provider orthe interventionist looks down on me and the way I livemy life.”

1.4. Procedures

The study protocol was approved by the institutionalreview board. Patient consent was obtained first, and thensurrogate decision makers were contacted to explain thestudy, obtain consent, and schedule a baseline data collectionsession at the dialysis clinic. At baseline, sociodemographicinformation, the CCI, the dialysis symptom index, and theoutcome measures were collected. Immediately after base-line data collection, dyads randomized to the interventiongroup participated in the PC-ACP intervention. For hemo-dialysis dyads, the intervention was delivered during or afterdialysis, depending on their preference. For peritonealdialysis dyads, the intervention was delivered after theirclinic appointment or over the weekend at the clinic. Eachintervention was audio recorded for quality monitoring. Theoutcome measures were completed 1 week after baselinealong with the acceptability measures. Each member of thedyad received a $50 compensation at the completion ofthe study.

2. Results

2.1. Sociodemographic and clinical characteristics ofthe sample

Most of the patients were men (n = 10, 58.8%), single (n =11, 64.7%), and had completed a high school education or

69M. Song et al. / Applied Nursing Research 23 (2010) 65–72

higher (n = 15, 88.2%). Their average age is 52.82 (SD =15.50) years. Just less than half of the patients (n = 8, 47.1%)reported their annual household incomes to be b$11,000 andstated that Medicare was their primary health insurance.Most of the surrogates were women (n = 15, 88.2%),single (n = 11, 64.7%), and had completed a high schooleducation or higher (n = 15, 88.2%). Their average age is46.00 (SD = 10.12) years. Twelve surrogates (70.6%)reported their annual household incomes to be ≥$11,000,6 (35.3%) were children of the patients, and 1 (5.9%) wasCaucasian. With respect to religious affiliation, all dyadsreported being Christian.

More than 70% (n = 12) of the patients were receivinghemodialysis therapy. Their time on dialysis ranged from4.5 months to 29 years. Their average CCI score was 5.29(SD = 2.87; range = 2–11). Forty-seven percent (n = 8)had a CCI score ≥6, indicating a mortality rate perpatient year of 27% (Cohen, Moss, Weisbord, & Germain,2006). More than 50% (n = 9) reported currentlyexperiencing at least 10 bothersome symptoms. Themost frequently reported symptoms were trouble stayingasleep (n = 12), fatigue (n = 11), trouble falling asleep(n = 10), itchiness (n = 8), and irritableness (n = 8).Seventy-six percent reported their health status as fair orpoor. The number of symptoms was inversely correlatedwith perceived health status (r = −.51, p b .05). The twogroups (intervention versus control) did not differsignificantly on clinical and sociodemographic character-istics or baseline outcome measures.

2.2. Feasibility

Of the 34 patients assessed for eligibility, 2 were excludedbecause of not having an available surrogate. For 6 dyads,either the patient or the surrogate declined to participate,yielding an 18.8% refusal rate. Of the 26 dyads whoconsented, 7 dropped out before baseline data completionand randomization. As a result, 59.4% of those eligible wererandomized. All intervention dyads (n = 10) but 1 receivedthe intervention because 1 surrogate missed the appointmentand never returned our calls. All dyads who received PC-ACP intervention (n = 9) completed the study, whereas 1control dyad was lost to follow-up.

Table 1Group comparisons in changes in primary outcomes from baseline to 1 week

Outcome measure Intervention (n = 10), M ± SD

Baseline 1 week

Dyad congruence⁎ 2.30 ± 1.25 4.20 ± 1.03Patient's decisional conflict 2.05 ± 0.61 1.92 ± 0.43Surrogate's decision making confidence 16.70 ± 3.06 18.40 ± 1.84Patient S-PRT 1.54 ± 0.88 1.60 ± 0.62Surrogate S-PRT 1.32 ± 0.64 1.56 ± 0.87

Note. Possible score ranges: congruence (0–5), decisional conflict (1–5), decision-and Relationship Tool.

⁎ p b .05 (Mann–Whitney U = 12.0).

2.3. Effects of PC-ACP

Nonparametric statistical analyses (i.e., Fisher's exact orchi-square test and Mann–Whitney U test) were employedto compare the two groups on changes in outcome measuresfrom baseline to 1 week after baseline. Effect sizes (eitherCohen's d or φ as appropriate) were computed for theoutcomes of the intervention.

2.3.1. Patient–Surrogate congruence intreatment preferences

The intervention dyads showed a significantly greaterpreimprovement–postimprovement (d = 1.12) in congruencein end-of-life treatment preferences compared with thecontrol dyads (Table 1). Dyads in both groups revealed astrong preference for life-sustaining treatment at the end oflife in general, although this preference was particularly truein the intervention group. At posttest, 80% (n = 8) of patientsin the intervention group reported that they would chose tocontinue all life-sustaining treatments in a situation of a lowchance of survival, whereas 28.6% (n = 2) of patients in thecontrol group reported that they would make that choice. Allbut one patient in the intervention group (n = 9, 90%) wouldchoose to undergo CPR even if the chance of surviving theattempt would be low, whereas 57% (n = 4) of the controlgroup patients would make that choice.

2.3.2. Patient's level of difficulty in making choicesBoth groups showed difficulty in making end-of-life

choices at baseline (mean score N2), and the before–afterchanges in decisional conflict in the two groups were notsignificantly different (d = .47).

2.3.3. Surrogate's level of comfort in decision makingSurrogates in both groups showed high confidence in

making decisions for their loved ones, and the before–afterchanges in confidence in the two groups were notsignificantly different (d b .30).

2.3.4. Psychospiritual well-being of patient and surrogatePatients and surrogates in both groups showed a mean

score between +1 and +2, indicating adaptive well-beingwith the current illness (Atkinson, Wishart, Wasil, &Robinson, 2004). No before–after changes were found in

Control (n = 7), M ± SD

Change Baseline 1 week Change

1.90 ± 1.52 2.00 ± 1.00 2.00 ± 0.82 0.01 ± 1.29−0.13 ± 0.46 2.11 ± 0.52 1.80 ± 0.43 −0.31 ± 0.241.70 ± 2.67 16.71 ± 3.15 18.57 ± 2.44 1.86 ± 3.890.06 ± 0.69 1.21 ± 1.70 1.08 ± 1.74 −0.13 ± 0.570.23 ± 0.57 1.76 ± 1.07 1.97 ± 1.07 0.20 ± 1.36

making confidence (5–20), and S-PRT (−3 to +3). S-PRT = Self-Perception

Table 2Group comparisons in acceptability measures

Measure Intervention(n = 10)

Control(n = 7)

Quality of communication⁎, M ± SD 10.10 ± 2.08 8.14 ± 2.34Patient–Clinician interaction index, M ± SD 6.20 ± 2.90 6.29 ± 2.56Clinician's cultural sensitivity“Understands my background and values”Strongly or somewhat agree 10 (100) 6 (85.7)Neither agree nor disagree 0 1 (14.3)“Looks down on me”Strongly or somewhat agree 0 2 (28.6)Neither agree nor disagree 1 (10.0) 0Somewhat or strongly disagree 9 (90.0) 5 (71.4)

Note. Possible score ranges: quality of communication (3–12) and patient–clinician interaction index (5–20; lower scores indicating better interaction).Values are in n (%) unless otherwise indicated.

⁎ p b .05 (Mann Whitney U = 19.0).

70 M. Song et al. / Applied Nursing Research 23 (2010) 65–72

psychospiritual well-being for patients and surrogates ineither group.

2.4. Acceptability

The perceived quality of communication about end-of-lifecare reported by the intervention patients was significantlyhigher than that of the control group (d = .84, p b .05).However, there were no significant group differences ineither the patient–clinician interaction index (d b .30) or theclinician's cultural sensitivity (φ = .34–.50; Table 2).

3. Discussion

Among the primary outcomes, only dyads' congruenceimproved significantly after PC-ACP. The hypotheses thatPC-ACP would decrease patients' decisional conflict andincrease surrogates' decision-making confidence were notsupported. We observed a shift in preferences for life-sustaining treatment from baseline to 1 week follow-upamong seven (70%) patients in the intervention group.However, the direction of the shift was counter to ourexpectation. The shift occurred either from “stop all life-sustaining treatment, including dialysis” to “continue allpossible treatment” (four patients) or from “unsure” to“continue all possible treatment” (three patients).

The fact that African Americans typically prefer continu-ing life-sustaining treatment has been documented in theliterature (Welch, Teno, & Mor, 2005); however, the reasonfor a decisional shift in this direction in this study is unclear.We offer two speculations. First, according to Schwarz(2005), treatment decision making involves subjectiveexperiences that serve as a basis for judgments. Thesesubjective experiences include, for example, ease ordifficulty of thought generation that accompanies thedecision-making process and emotional reactions to thedecision-making content. Therefore, when individuals findthe thought process difficult, they tend to express more

conservative choices, such as the “continue all possibletreatment” option in our study. Similar to findings by Holleyet al. (1999), nearly all of the patients in the PC-ACPintervention group perceived dialysis to be a fundamentalpart of their lives—their lives and dialysis were inseparable.

Our second speculation for the study finding revolvesaround what constitutes an unacceptable quality of life forthis study sample. All patients but one stated that they wouldundergo all possible life-sustaining treatments to prolongtheir lives even if their quality of life was severelyundermined due to permanent physical and cognitiveimpairment that would require 24-hour nursing care. Thesepatients stated that life should be prolonged at least for a fewmonths unless death is certain so that God could intervene.During PC-ACP, the dyads described having strong relation-ships with God that provided satisfaction with life and asense of purpose in life. This finding is consistent with Tanyiand Werner's (2007) study of female African Americanswith end-stage renal disease. The relationship betweenstrong spiritual beliefs and a high tolerance for impairedquality of life is not well understood and thus, furtherinvestigation is needed, with particular attention to thecontext of end-of-life decision making.

The goals of the intervention were to help patients andtheir surrogates better understand the likelihood of illnessprogression and the benefits and burdens associated withlife-sustaining treatment and to clarify their values on life-sustaining treatment under situations where the risks andburden of the treatment are high. Whether these goals wereachieved for the study sample is not clear from the currentfindings. The illness representations observed during theintervention were, at times, contradictory from a medicalperspective. For example, the participants appreciated theseverity and chronicity of their illness (identity andtimeline); however, they expressed high controllabilityand positive/optimistic outcomes of illness (cure/controland consequences) and linked these beliefs to their closerelationship with a divine presence. Consistent withLeventhal's common sense model, these illness representa-tions provided a cognitive and emotional framework thatmay have competed with new information regarding thelikelihood of illness progression and death. It is imperativethat further attention be given to illness representations inAfrican Americans facing end of life so that theserepresentations can be fully explored and understoodduring interventions, such as PC-ACP.

The findings from this study have implications for thedesign of future ACP interventions in this patient population.Most importantly, interventions need to explicitly addressthe influence of spirituality on patients' end-of-life decisionmaking. In addition, the intervention may need to beextended to multiple interactions to support patients andsurrogates as they work through the difficult thoughts andemotions needed to prepare for end-of-life decision making.Finally, the assessment phase of PC-ACP in this study wasfocused on representations of symptoms related to CKD.

71M. Song et al. / Applied Nursing Research 23 (2010) 65–72

This initial focus on symptoms rather than the illness itselfmight have precluded dyads from reflecting on the broaderimplications of CKD and dialysis on their lives.

The idea of discussing end-of-life care was well receivedby the participants. The intervention patients rated thequality of communication significantly higher than do thecontrol patients. However, when compared with the controlgroup, they did not perceive the quality of the interactionwith the interventionist to be higher or more culturallysensitive. Perry et al. (2005) reported that peer mentoring onend-of-life decision making improved the completion ofadvance directives, comfort discussing advance directives,subjective well-being, and anxiety among long-term dialysisAfrican Americans. The authors suggested that a relation-ship-centered, person-to-person approach, which is consis-tent with “oral traditions,” is effective in African Americans.Although PC-ACP is thought to be consistent with AfricanAmericans' oral traditions, the interventionist was neither apeer nor an African American. Therefore, the findingswarrant further research to examine the cultural appropriate-ness of the intervention for African Americans and todetermine the influence of racial concordance between theinterventionist and dyads.

Recruiting African Americans to clinical trials is knownto be challenging (Dilworth-Anderson & Williams, 2004).The process of recruitment in this study was facilitated byclinicians at the study site who were highly respected bythe patients, which led to a high rate of consent. However,the actual number of dyads randomized was diminisheddue to difficulty in scheduling appointments that did notconflict with surrogates' daily activities, even when weoffered the option of participating on weekends orevenings. Future research should incorporate strategies toease such conflicts (e.g., telephone follow-ups). Deliveringthe intervention at the clinic either during dialysis treatmentor after a clinic visit appeared to be feasible and preferredby the participants.

Study limitations include the small sample size and the1 week follow-up data collection that might have been tooshort to observe changes in psychospiritual well-being.Therefore, caution is needed for interpreting the results.The mixed findings suggest that the intervention elementsmay need to be further tailored for African Americans, andits focus may need to shift from symptom representationsto illness representations. Nonetheless, this study providesuseful information about the feasibility and acceptability ofan ACP intervention and demonstrates its potentialbeneficial effects.

Findings from this study also have clinical implica-tions. Although the intervention showed limited positiveeffects in this study, its value in helping both patients andsurrogates to clarify illness progression and patient'streatment preferences should draw clinicians' attention.An in-depth assessment of African Americans' illnessrepresentations in the context of their spiritual beliefs canhelp surrogates and clinicians better understand patients'

end-of-life preferences. Particularly, it is important to notethat when a clinician attempts to gain understanding of apatient's goals and values, he or she needs to accept thatthe patient's values may differ greatly from his or herown values regarding what would be best medical carefor the patient. This patient's values can only beunderstood in the context of his or her spirituality andillness representations.

Acknowledgment

This study was supported by the University ofPittsburgh Central Research Development Fund and wasconducted at the University of Pittsburgh School ofNursing. The authors thank Linda Briggs, MS, MA, RN,and Bernard Hammes, PhD, for their contributions to theproject: interventionist training and the consultations inimplementing the intervention. The authors also thank IrisHayes, MSW, and the staff at the Dialysis Clinic Inc.-Oakland for their effort in participant recruitment.

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