At the end of life, anxious attitudes concerning the dying process are common in patients in Palliative Care. Measurement tools can identify vulnerabilities, resources and the need for subsequent treatment to relieve suffering and support well-being.
Aim:
To systematically review available tools measuring attitudes towards dying, their operationalization, the method of measurement and the methodological quality including generalizability to different contexts.
Design:
Systematic review according to the PRISMA Statement. Methodological quality of tools assessed by standardized review criteria.
Data sources:
MEDLINE, PsycINFO, PsyndexTests and the Health and Psychosocial Instruments were searched from their inception to April 2017.
Results:
A total of 94 identified studies reported the development and/or validation of 44 tools. Of these, 37 were questionnaires and 7 alternative measurement methods (e.g. projective measures). In 34 of 37 questionnaires, the emotional evaluation (e.g. anxiety) towards dying is measured. Dying is operationalized in general items (n = 20), in several specific aspects of dying (n = 34) and as dying of others (n = 14). Methodological quality of tools was reported inconsistently. Nine tools reported good internal consistency. Of 37 tools, 4 were validated in a clinical sample (e.g. terminal cancer; Huntington disease), indicating questionable generalizability to clinical contexts for most tools.
Conclusion:
Many tools exist to measure attitudes towards the dying process using different endpoints. This overview can serve as decision framework on which tool to apply in which contexts. For clinical application, only few tools were available. Further validation of existing tools and potential alternative methods in various populations is needed.
SpeidelH.Palliative medicine and anxiety. Palliativmedizin2007; 8: 31–34.
2.
MisslerMStroebeMGeurtsenLet al. Exploring death anxiety among elderly people: a literature review and empirical investigation. Omega2012; 64: 357–379.
3.
NeimeyerRAWittkowskiJMoserRP.Psychological research on death attitudes: an overview and evaluation. Death Stud2004; 28: 309–340.
4.
FortnerBVNeimeyerRA.Death anxiety in older adults: a quantitative review. Death Stud1999; 23: 387–411.
5.
Monforte-RoyoCVillavicencio-ChávezCTomás-SábadoJet al. What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS ONE2012; 7: e37117.
6.
World Health Organisation (WHO). WHO definition of palliative care. Geneva: WHO, 2002.
7.
NeimeyerRA.From death anxiety to meaning making at the end of life: recommendations for psychological assessment. Clin Psychol: Sci Pr2005; 12: 354–357.
8.
TomerA.Death-related attitudes: conceptual distinctions. In: TomerA (ed.) Death attitudes and the older adult: theories, concepts, and applications. Philadelphia, PA: Taylor & Francis; Brunner-Routledge, 2000, pp.87–94.
9.
CollettLJLesterD.The fear of death and the fear of dying. J Psychol1969; 72: 179–181.
10.
MunnichsJMA. Finitude and dying. Z Gerontol1974; 6: 355–361.
11.
TomerAEliasonG.Theories on attitudes towards dying and death. In: WittkowskiJ (ed.) Dying, death and grief. Stuttgart: Kohlhammer, 2003, pp.33–51.
12.
WongPTPRekerGTGesserG.Death attitude profile-revised: a multidimensional measure of attitudes toward death. In: NeimeyerRA (ed.) Death anxiety handbook: research, instrumentation, and application. Washington, DC: Taylor & Francis, 1994, pp.121–148.
13.
ZannaMRempelJK.Attitudes: a new look at an old concept. In: Bar-TalDKruglanskiAW (eds). The social psychology of knowledge. Cambridge: Cambridge University Press, 1988, pp.315–334.
LoCHalesSZimmermannCet al. Measuring death-related anxiety in advanced cancer: preliminary psychometrics of the Death and Dying Distress Scale. J Pediatr Hematol Oncol2011; 33(Suppl. 2): S140–115.
21.
KrauseSRydallAHalesSet al. Initial validation of the Death and Dying Distress Scale for the assessment of death anxiety in patients with advanced cancer. J Pain Symptom Manage2015; 49: 126–134.
22.
Abdel-KhalekAM.The Arabic Scale of Death Anxiety (ASDA): its development, validation, and results in three Arab countries. Death Stud2004; 28: 435–457.
23.
DicksteinLS.Death concern: measurement and correlates. Psychol Rep1972; 30: 563–571.
24.
DicksteinLS.Self-report and fantasy correlates of death concern. Psychol Rep1975; 37: 147–158.
25.
KlugLBossM.Factorial structure of the death concern scale. Psychol Rep1976; 38: 107–112.
26.
KlugLBossM.Further study of the validity of the Death Concern Scale. Psychol Rep1977; 40: 907–910.
27.
HammerSCBrookingsJB.Factor structure of the Death Concern Scale: a replication. Psychol Rep1987; 60: 199–202.
28.
CarlozziNEDowningNRMcCormackMKet al. New measures to capture end of life concerns in Huntington disease: meaning and purpose and concern with death and dying from HDQLIFE (a patient-reported outcomes measurement system). Qual Life Res2016; 25: 2403–2415.
29.
TemplerDI.The construction and validation of a Death Anxiety Scale. J Gen Psychol1970; 82: 165–177.
30.
McMordieWR.Improving measurement of death anxiety. Psychol Rep1979; 44: 975–980.
31.
WarrenWGChopraPN.Some reliability and validity considerations on Australian data from the Death Anxiety Scale. Omega1979; 9: 293–299.
32.
LonettoRFlemingSMercerGW.The structure of death anxiety: a factor analytic study. J Pers Assess1979; 43: 388–392.
33.
VargoM.Relationship between the Templer Death Anxiety Scale and the Collett-Lester Fear of Death scale. Psychol Rep1980; 46: 561–562.
34.
AlvaradoKATemplerDIBreslerCet al. Are death anxiety and death depression distinct entities?Omega1993; 26: 113–118.
35.
LesterDCastromayorI.The construct validity of Templer’s Death Anxiety Scale in Filipino students. J Soc Psychol1993; 133: 113–114.
36.
LesterD.What do Death Anxiety Scales measure?Psychol Rep2007; 101: 754.
37.
RoyalKDElahiF.Psychometric properties of the Death Anxiety Scale (DAS) among terminally ill cancer patients. J Psychosoc Oncol2011; 29: 359–371.
38.
Tomas-SabadoJGomez-BenitoJ.Psychometric properties of the Spanish form of Templer’s Death Anxiety Scale. Psychol Rep2002; 91: 1116–1120.
39.
Tomás-SábadoJGómez-BenitoJ.Concurrent and divergent validity of the Spanish form of Templer’s Death Anxiety Scale. Psychol Rep2003; 93: 776–778.
40.
Tomás-SábadoJGómez-BenitoJ.Death anxiety and death obsession in Spanish students. Percept Mot Skills2004; 98: 31–34.
41.
SagginoAKlineP.Item factor analysis of the Italian version of the Death Anxiety Scale. J Clin Psychol1996; 52: 329–333.
42.
HoogstratenJKoelePvan der LaanJ.Templer’s Death Anxiety Scale revisited: the Dutch version. Percept Mot Skills1998; 87: 1259–1264.
43.
Abdel-KhalekABeshaiJATemplerDI.The structure of Templer’s Death Anxiety Scale among Egyptian students. Psychol Rep1993; 72: 920–922.
44.
Abdel-KhalekAM.Two scales of death anxiety: their reliability and correlation among Kuwaiti samples. Percept Mot Skills1997; 84: 921–922.
45.
Abdel-KhalekAM.Death anxiety in Egyptian samples. Pers Indiv Differ1986; 7: 479–483.
46.
LesterDAbdel-KhalekA.The Collett-Lester fear of Death Scale: a correction. Death Stud2003; 27: 81–85.
47.
McMordieWR.Concurrent validity of Templer and Templer/McMordie Death Anxiety Scales. Psychol Rep1982; 51: 265–266.
48.
TemplerDIAwadallaAAl-FayezGet al. Construction of a Death Anxiety Scale-extended. Omega2006; 53: 209–226.
49.
ThorsonJAPowellFC.A revised Death Anxiety Scale. Death Stud1992; 16: 507–521.
50.
TomerAEliasonGSmithJ.The structure of the Revised Death Anxiety Scale in young and old adults. In: TomerA (ed.) Death attitudes and the older adult: theories, concepts, and applications. New York: Brunner-Routledge, 2000, pp.109–122.
51.
MazorKMSchwartzCERogersHJ.Development and testing of a new instrument for measuring concerns about dying in health care providers. Assessment2004; 11: 230–237.
52.
LarrabeeMJ.Measuring fear of death: a reliability study. J Psychol1978; 100: 33–37.
53.
LooR.Personality correlates of the Fear of Death and Dying Scale. J Clin Psychol1984; 40: 120–122.
54.
LooRSheaL.Structure of the Collett-Lester Fear of Death and Dying Scale. Death Studies1996; 20: 577–586.
55.
LesterD.The Collett-Lester Fear of Death scale: the original version and a revision. Death Stud1990; 14: 451–468.
56.
MooneyDCO’GormanJG.Construct validity of the Revised Collett-Lester Fear of Death and Dying Scale. Omega2001; 43: 157–173.
57.
KolawoleMSOlusegunAK.The reliability and validity of revised Collett-Lester Fear of Death Scale (version 3) in a Nigerian population. Omega2008; 57: 195–205.
58.
Abdel-KhalekALesterD.The factorial structure of the Arabic version of the revised Collett-Lester fear of Death Scale. Death Stud2004; 28: 787–793.
59.
Tomás-SábadoJLimoneroJTAbdel-KhalekAM.Spanish adaptation of the Collett-Lester fear of Death Scale. Death Stud2007; 31: 249–260.
60.
Tomás-SábadoJGómez-BenitoJ.Construction and validation of the death anxiety inventory (DAI). Eur J Psychol Assess2005; 21: 108–114.
61.
GómezJHidalgoMDTomás-SábadoJ.Using polytomous item response models to assess death anxiety. Nurs Res2007; 56: 89–96.
62.
Tomás-SábadoJGómez-BenitoJ.Death anxiety and death depression in Spanish nurses. Psychol Rep2005; 97: 21–24.
63.
Tomas-SabadoJGomez-BenitoJLimoneroJT.The death anxiety inventory: a revision. Psychol Rep2005; 97: 793–796.
64.
Abdel-KhalekAMAl-KandariY.Death anxiety in Kuwaiti middle-aged personnel. Omega2007; 55: 297–310.
65.
WittkowskiJ.Multidimensional orientation toward dying and death inventory (MODDI-F) manual. Göttingen: Hogrefe, 1996.
66.
WittkowskiJ.The construction of the multidimensional orientation toward dying and death inventory (MODDI-F). Death Stud2001; 25: 479–495.
67.
WittkowskiJHoSMYChanWCH. Factor structure of the multidimensional orientation toward dying and death inventory among Hong Kong college students: a preliminary study. Death Stud2011; 35: 59–72.
68.
KlugA.Attitude towards dying, death, and hereafter. Aachen: Verlag Mainz, 1997.
69.
OchsmannR.Anxiety of death and dying. Göttingen: Hogrefe, 1993.
70.
HensleU.Fear of death: approach on structuring and development of a questionnaire scale. Psychol Beitr1977; 19: 545–566.
71.
HoelterJW.Multidimensional treatment of fear of death. J Consult Clin Psychol1979; 47: 996–999.
72.
WalkeyFH.The multidimensional Fear of Death Scale: an independent analysis. J Consult Clin Psychol1982; 50: 466–467.
73.
NeimeyerRAMooreMK. Validity and reliability of the Multidimensional Fear of Death Scale. In: NeimeyerRA (ed.) Death anxiety handbook: research, instrumentation, and application. Philadelphia, PA: Taylor & Francis, 1994, pp.103–119.
74.
WittkowskiJHoSMYChanWCH. The Chinese version of the multidimensional orientation toward dying and death inventory (MODDI-F/chin): an introduction. Omega2011–2012; 64: 15–27.
75.
GesserGWongPTRekerGT.Death attitudes across the life-span: the development and validation of the Death Attitude Profile (DAP). Omega1988; 18: 113–128.
76.
TemplerDILavoieMChalgujianHet al. The measurement of death depression. J Clin Psychol1990; 46: 834–839.
77.
TemplerDIHarvilleMHuttonSet al. Death Depression Scale-Revised. Omega2002; 44: 105–112.
78.
Tomas-SabadoJLimoneroJT.Death depression and death obsession: are they different constructs?Psychol Rep2007; 100: 755–758.
79.
ConteHRWeinerMBPlutchikR.Measuring death anxiety: conceptual, psychometric, and factor-analytic aspects. J Pers Soc Psychol1982; 43: 775–785.
80.
CellaDFTrossS.Death anxiety in cancer survival: a preliminary cross-validation study. J Pers Assess1987; 51: 451–461.
81.
Abdel-KhalekAM.Why do we fear death? The construction and validation of the reasons for death fear scale. Death Stud2002; 26: 669–680.
82.
CarmackHJDeGrootJM.Development and validation of the communication apprehension about death scale. Omega2016; 74: 239–259.
83.
SpilkaBStoutLMintonBet al. Death and personal faith: a psychometric investigation. J Sci Stud Relig1977; 16: 169–178.
84.
NelsonLDNelsonCC.A factor analytic inquiry into the multidimensionality of death anxiety. Omega1975; 6: 171–178.
85.
NelsonLD.The multidimensional measurement of death attitudes: construction and validation of a three-factor instrument. Psychol Rec1978; 28: 525–533.
86.
SaundersS.A methodological study to develop and validate a death attitude scale: Buddhists and medical students compared. Omega1999; 38: 211–234.
87.
PettyEHayslipBJRCaballeroDMet al. Development of a scale to measure death perspectives: overcoming and participating. Omega2015; 71: 146–168.
88.
LevasseurOMcDermottMRLafreniereKD.The multidimensional mortality awareness measure and model: development and validation of a new self-report questionnaire and psychological framework. Omega2015; 70: 317–341.
89.
WuAMSTangCS-KYanECW.Assessment of death anxiety among Chinese: a study of reliability and validity. In: ShohovSPShohovSP (eds). Advances in psychology research, vol. 28. Hauppauge, NY: Nova Science Publishers, 2004, pp.121–130.
90.
Abdel-KhalekAM.The death distress construct and scale. Omega2011–2012; 64: 171–184.
91.
Abdel-KhalekAM.The structure and measurement of death obsession. Pers Indiv Differ1998; 24: 159–165.
92.
MaltbyJDayL.The reliability and validity of the Death Obsession Scale among English university and adult samples. Pers Indiv Differ2000; 28: 695–700.
93.
KellnerR.Somatization and hypochondriasis. New York: Praeger Publishers, 1986.
94.
LohrKN.Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res2002; 11: 193–205.
95.
IrelandMMalgadyRG.Thematic instrument for measuring death anxiety in children (TIMDAC). J Pediatr Nurs1999; 14: 28–37.
96.
CostantinoGMalgadyRRoglerL.TEMAS (Tell-me-a-story) Manual. Los Angeles, CA: Western Psychological Services, 1988.
97.
NeimeyerRAFontanaDJGoldK.A manual for content analysis of death constructs. Death Educ1983; 7: 299–320.
98.
WittkowskiJ.Interview in psychology. Opladen: Westdeutscher Verlag, 1994.
99.
GottschalkLAWingetCNGleserGC.Manual of instructions for using the Gottschalk-Gleser content analysis scales: anxiety, hostility, and social alienation-personal disorganization. Berkeley, CA: University of California Press, 1969.
100.
KurlychekRT.Assessment of death acceptance: a proposed scale. Psychology1976; 13: 19–20.
101.
SchellDSeefeldtC.Development of a Death Anxiety Scale for children. Omega1991; 23: 227–234.
102.
BermannSRichardsonV.Social change in the salience of death among adults in America: a projective assessment. Omega1987; 17: 195–207.
103.
PiersRDvan EechoudIJvan CampSet al. Advance care planning in terminally ill and frail older persons. Patient Educ Couns2013; 90: 323–329.
104.
EmanuelEJFaircloughDLWolfePet al. Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?Arch Intern Med2004; 164: 1999–2004.
105.
BernackiREBlockSD.Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med2014; 174: 1994–2003.
106.
RatsakG.Anxiety and coping with fears. In: AulbertENauckFRadbruchL (eds). Textbook of palliative medicine. 3rd ed.Stuttgart: Schattauer, 2012, pp.1059–1076.
107.
NeimeyerRAvan BruntD.Death anxiety. In: WassHNeimeyerRA (eds). Dying: facing the facts. 3rd ed.Washington, DC: Taylor & Francis, 1995, pp.49–88.
108.
Bellido-PérezMMonforte-RoyoCTomás-SábadoJet al. Assessment of the wish to hasten death in patients with advanced disease: a systematic review of measurement instruments. Palliat Med2017; 31: 510–525.
109.
HalesSZimmermannCRodinG.Review: the quality of dying and death: a systematic review of measures. Palliat Med2010; 24: 127–144.
110.
EngelmannDScheffoldKFriedrichMet al. Death-related anxiety in patients with advanced cancer: validation of the German version of the death and dying distress scale. J Pain Symptom Manage2016; 52: 582–587.
111.
BeshaiJATemplerDI.American and Egyptian attitudes toward death. Essence1978; 2: 155–158.
112.
Abdel-KhalekAM.Convergent validity of the Collett-Lester Fear of Death and Templer Death Anxiety Scales in Egyptian male college students. Psychol Rep2002; 90: 849–850.
113.
McMordieWRKumarA.Cross-cultural research on the Templer/McMordie Death Anxiety Scale. Psychol Rep1984; 54: 959–963.
114.
DonovanJM.Validation of a Portuguese form of Templer’s Death Anxiety Scale. Psychol Rep1993; 73: 195–200.
115.
ZeyrekEYLesterD.Cronbach alpha reliability and concurrent validity of the Collett-Lester Fear of Death scale in a Turkish sample. Psychol Rep2008; 102: 706–708.
116.
VenegasMEAlvaradoOSBarrigaO.Validation of Collett-Lester’s Fear of Death Scale in a sample of nursing students. Rev Lat Am Enfermagem2011; 19: 1171–1180.
117.
LongDD.A cross-cultural examination of fears of death among Saudi Arabians. Omega1986; 16: 43–50.
118.
Tomas-SabadoJGomez-BenitoJ.The Spanish form of the Death Depression Scale. Percept Mot Skills2003; 96: 49–53.
119.
Tomás-SábadoJGómez-BenitoJ.Psychometric properties of the Spanish adaptation of the Death Obsession Scale (DOS). Omega2003; 46: 263–272.
