Advance Directives, Control, and Quality of Lifefor Persons with Disabilities

Deborah L. Volker, PhD, RN, AOCN, FAAN, Chris Divin-Cosgrove, RN, FNP-BC, ACHPN,and Tracie Harrison, PhD, RN

Abstract

Background: Personal control over end-of-life (EOL) care via advance care planning is a key component of high-quality care. Although this desire for control has been well documented in some populations, EOL care issuesare not well understood within the disabilities community.Objective: The objective for this study was to describe the relationships between individual demographiccharacteristics, health-related quality of life, health locus of control, and attitudes toward advance directives(ADs) in individuals who are disabilities activists.Methods: We surveyed 55 participants attending a disability conference. Instruments included a demographicdata sheet, the Advance Directive Attitude Survey (ADAS), the Multidimensional Health Locus of Control scale,and the Functional Assessment of Non-Life Threatening Conditions quality of life (QOL) scale.Results: Most participants were Hispanic females with some college education. About 46% had a disability.Group means revealed a high level of QOL (M = 75.72, SD = 19.09) and a positive attitude about ADs (M = 66.49,SD = 8.03). On the Opportunities for Treatment Choices subscale of the ADAS, activists without disabilities(M = 14.23) were more positive about their control over EOL decisions than were the activists with disabilities(M = 12.97) [t(2,52) = 2.116, p < 0.05].Conclusions: Although participants were positive about ADs, differences in attitudes about control over op-portunities for treatment choices between the nondisabled and disabled groups support previous findings thatpeople with disabilities may have concerns regarding undertreatment for serious health conditions. Furtherstudy of EOL care issues for persons with disabilities is warranted.

Introduction

Approximately 35 million Americans live with severedisabling conditions.1 These individuals will ultimately

face end-of-life (EOL) issues, and their numbers will growbecause of an increase in those who are aging with early-onset, permanent functional disabilities that originate beforeage 25.2–3 Fortunately, medical advances have made it pos-sible for people with disabilities (PWDs) to age into lateradulthood. Unfortunately, PWDs may be at higher risk forlife-limiting diseases,4 receive disparate care,5 and experienceworse clinical outcomes6–8 than those without disabilities. Yetlittle is known about EOL care issues and needs for thispopulation.

Advance care planning and the use of advance directives(ADs) are well-recognized components of high-quality EOLcare. Indeed, maintaining a sense of control over daily life andcare decisions is a highly valued aspect of quality of life at the

end of life.9–11 ADs are an important tool for achieving thisend. Although completion of ADs and other advance careplanning activities vary with age, race and ethnicity, disease,care setting, and previous personal experience with others’serious illnesses,12–13 and although some reports questiontheir effectiveness,14–15 many studies support their utility fordesignating surrogate decision makers and articulating carepreferences.16–17 However, the voice of PWDs is largely un-known in advance care planning studies, because the partic-ipants’ demographic profiles typically have not includeddisability status.

Advance care planning may represent a unique issue forPWDs, because decisions about withholding and withdraw-ing life-sustaining interventions are more complex for them.For example, nocturnal ventilatory support, wheelchairs, andassistive personnel for aid with bowel and bladder functionare normal components of everyday life for some PWDs. Fornondisabled individuals, ADs allay fears about incurring such

School of Nursing, University of Texas, Austin, Texas.Accepted March 25, 2013.

JOURNAL OF PALLIATIVE MEDICINEVolume 16, Number 8, 2013ª Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2013.0008

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dependence, lack of personal control, and possible poorquality of life (QOL) at the end of life. PWDs, however, mayworry that ADs might be used to prematurely withhold life-sustaining interventions and hasten death.18 Disability activ-ist Diane Coleman described the advance care planningmovement as one that ‘‘developed under the false premisethat the primary or only problem is overtreatment of dyingpeople’’ and argued that it should ‘‘address undertreatment ofpeople who may or may not be terminally ill.’’19 We know thatPWDs want to retain good QOL at the end of life and maintainautonomy, control over health-related decisions, andchoice,20–21 but we do not know whether ADs are an appro-priate mechanism for this goal. The present study thereforeexamines relationships among attitudes about ADs, QOL,and health locus of control among disabilities activists, de-fined as persons who engage in activities that promote therights of PWDs.

Methods

Participants were recruited at a conference attended bydisabilities activists in El Paso, Texas. After reviewing a coverletter that explained the study’s purpose and procedures,participants anonymously completed four survey instru-ments and received a $10 gift card to thank them for theirtime. The study was approved by an institutional reviewboard and written informed consent was waived due to thenature of the study’s purpose and design.

Instruments

Instruments included an investigator-designed demo-graphic questionnaire and three tools to capture variables ofinterest. Attitude about ADs was measured by the AdvanceDirective Attitude Survey (ADAS).22 This instrument has 16items (each scored 1–4, from strongly disagree to strongly agree)and 4 subscales, with a higher score indicating a more fa-vorable attitude about ADs. It has been used in several hos-pitalized and community-dwelling populations and has anestablished validity and reliability among these groups.23

QOL was measured using the Functional Assessment of Non-Life Threatening Conditions (FANLTC) scale, which contains26 items (each scored from 0 = not at all to 4 = very much) and 4subscales.24 The FANLTC is a component of the widely usedFunctional Assessment of Chronic Illness Therapy Measure-ment System, which has been validated in numerousgroups.25 Health locus of control was measured by the Mul-tidimensional Health Locus of Control (MHLC, form B) scale,an 18-item tool that captures 3 dimensions of perceived con-trol: internal, external (‘‘powerful others’’), and chance.26 Eachdimension has 6 items, with responses from 1 (strongly dis-agree) to 6 (strongly agree); scores on each dimension can rangefrom 6 to 36. The MHLC has well-established validity andreliability in many populations.27

Data analysis

Analyses were performed with SPSS 18.0 (SPSS Inc., Chi-cago, IL); descriptive statistics were obtained and relation-ships between all variables (including instrument subscales)calculated using Pearson’s r.28 Because assumptions for t-testscould not be met and the sample was small, nonparametricindependent-samples Mann-Whitney U tests29 were used to

compare scores of participants with a disability versus thosewithout a disability, and to compare scores of participantswho scored either high or low on the various subscales of theinstruments, as well as the total scores for the FANLTC andADAS.

Results

Of the 55 participants (see Table 1), mean age was 43 years(range = 23–63, SD = 11.4), and most were Hispanic females.About 46% had a disability; of these, the mean age whendiagnosed was 19 years.

Table 1. Participant Characteristics (n = 55)

Measure na %

Age 55 (M = 43, range = 23–63,SD = 11.4)

GenderMale 8 15Female 46 85

Race/ethnicityHispanic 34 65Non-Hispanic White 7 13African American 5 10More than one 2 4Native American 1 2Other 3 6

Religious preferenceProtestant 21 41Catholic 21 41Other 4 8None 5 10

Highest educationElementary school 1 2High school 5 11College 35 80Graduate school 3 7

Living with a disabilityYes 25 46No 30 54

Disabling condition (n = 25)Neuromuscular/mobility

impairment13 52

Mental health disorder 3 12Visual impairment 2 8Hearing impairment 2 8Diabetes 1 4Cancer 1 4Multiple conditions 3 12

aNumbers for each measure represent valid responses and maytotal less than 55.

Table 2. Functional Assessment of Non-Life

Threatening Conditions (FANLTC)

N M SD RangeCronbach’s

alpha

Physical well-being 54 21.23 6.19 1–28 .86Social/family

well-being54 17.93 5.68 0–24 .84

Emotional well-being 48 14.77 4.37 6–20 .68Functional well-being 54 20.72 6.61 0–28 .91Total score 48 75.72 19.09 35–104 .91

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Group means revealed a high level of QOL on the FANLTC(M = 75.72, SD = 19.09) (see Table 2) and a positive attitudeabout ADs on the ADAS (M = 66.49, SD = 8.03) (see Table 3).Health-related locus of control (LOC) findings are reported inTable 4. Relationships between QOL, attitudes about ADs,and LOC (including instrument subscales) were examined.Significant positive correlations ( p < .05) were noted betweeninternal LOC and ability to perform activities of daily living(r = .48), physical well-being (r = .33), overall attitude aboutADs (r = 0.33), and the impact of ADs on family (r = 0.32). Thatis, participants who believed they had control over personalhealth events and outcomes (internal LOC) were more likelyto score higher on these items than were those whose LOCdepended on ‘‘powerful others’’ or chance.

Although the small sample limited our ability to evaluatemany of the relationships between participant demographicsand scores on our variables of interest, we were able to com-pare scores of participants with and without a disability. Al-though there were no significant differences between the twogroups on QOL, LOC, or the total score on the ADAS, wefound that on the Opportunities for Treatment Choices sub-scale of the ADAS, activists without disabilities (M = 14.23)were more positive about their control over EOL decisionsthan were activists with disabilities (M = 12.97) [t(2,52) = 2.12,p < .05].

Discussion

Our study findings regarding relationships between healthLOC and aspects of QOL are consistent with other works.That is, in some chronically ill and aging populations, a strongsense of personal control is associated with well-being andpositive health outcomes.30–31 Overall, the disability activistparticipants had a positive attitude about ADs. Their meanADAS score of 66.49 (SD = 8.03) was higher than that ofhospitalized patients (M = 50.38, SD = 5.58)22 and community-

dwelling older adults (M = 50.15, SD = 7.08).23 This differencecould be attributed to higher perceived QOL, younger age,health status, activist role, or other attributes; however, fur-ther studies are needed to explore reasons for these differ-ences. Our findings documenting a positive associationbetween a strong internal LOC and a positive attitude aboutADs support other studies that reveal a link between the de-sire for personal control over EOL decision making.9–11,32

While all of our participants were disabilities activists,about half of them did not have a disability. Notably, ourparticipants with disabilities were less positive about theircontrol over EOL decisions than participants who did nothave a disability. This raises a question about potential EOLcare concerns for PWDs, which might be rooted in the concernsome disability activists have voiced about denial of preferredlife-sustaining measures for PWDs18–19 or might have otherorigins. Additional research is warranted to pinpoint the na-ture of this concern and suggest appropriate responses.

Because our study is limited by a small sample composedprimarily of well-educated, middle-aged Hispanic womenactivists, generalizations to other groups cannot be made.Future research should include qualitative studies designed toelucidate advance care planning needs and concerns uniqueto PWDs, and intervention studies that evaluate advance careplanning interventions designed to meet the needs of thisgroup. Until such evidence-based approaches to advance careplanning are formulated, practitioners should be mindful ofpotential biases about QOL for PWDs and not discount life-sustaining measures based on an assumption that life with adisability is not worth living.33 Given that ethics committeesoften advise HCPs, patients, and families about controversiesregarding withholding and withdrawing life-sustaining in-terventions and requests for futile care, such committeesshould have at least one member well versed in disability andcivil rights issues.5

In sum, the disability perspective must be included in theongoing quest to improve quality and choice at the EOL, in-cluding decisions on how best to allocate limited resources forEOL care.34 This study uncovered a potential concern amongsome PWDs about their ability to effectively control their EOLdecisions. Much work remains to be done to develop bestadvance care planning practices for determining and safe-guarding care preferences for this unique population.

Acknowledgments

This study was presented in part as a poster presentation atthe 2012 Southern Nursing Research Society Conference,February 23, 2012, New Orleans, LA.

The authors thank Ms. Nara Lopez for her assistance withdata collection.

Author Disclosure Statement

No competing financial interests exist.

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Table 3. Advance Directive Attitude Survey (ADAS)

N M SD RangeCronbach’s

alpha

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Impact of ADs on family 51 25.29 3.26 18–32 .59Effect of ADs

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Illness perception 52 2.40 1.12 1–4 n/a (1 item)Total score 50 66.49 8.03 51–84 .75

AD, advance directive.

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LOC, locus of control; MHLOC, multidimensional health locus ofcontrol.

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Address correspondence to:Deborah L. Volker, PhD, RN, AOCN, FAAN

University of TexasSchool of Nursing

1700 Red River RoadAustin, TX 78701

E-mail: dvolker@mail.nur.utexas.edu

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