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1 An exploration of the decision-making process by the elderly patients and their family involving in the discharge planning Advisors: Yu-Tzu Dai, PHD, Hong-Jer Chang, PHD Wen-Lin Tsay 2005 January

2 i 13

3 ii (Grounded theory) (core category) (antecedent condition)

4 iii

5 Abstract The population in this country is aging rapidly. The change in the demographic profile has a great impact on the health care system. Elderly people are the primary consumers of health care. As population ages, the rate of dependency also increases. The needs for Long-Term Care have consequently grown drastically. More and more family members of elders will find themselves burdened with caregiving responsibilities. To meet the increasing needs of elders and their family members, the past several years have witnessed a significant growth in the provision of Long-Term Care services. The system is nonetheless fragmented, lacking integration and coordination among various services. The linkage between acute care, sub-acute care, and long-term care is also unremarkable. As a result, discharge planning becomes indispensable in helping patients to link with service systems. At the juncture of discharge planning, family members face a number of issues related to decision-making. It is a time when the intervention by discharge planners becomes critical. The purpose of this study was two-fold, one to examine the process and patterns of decision-making by elders and their family members upon discharge from an acute care hospital, the other to understand the effects of the participations by planners on the outcome of discharging. This study was qualitative in nature, having the advantage of employing the grounded theory. Data were generated from a purposive sample of elders and their respective primary caregivers self-identified or appointed by other family members, mainly adult children and in-laws. In-depth interviews were conducted and complemented by in-vivo observations. The interviews terminated with the 13 th subject, where the data reaching the saturation iv

6 point and no new pattern of responses were generated. Data were recorded and analyzed with the researcher being in voidance of her framework of thoughts, allowing the data to present themselves. The result indicated that once admitted to the neurosurgical ward in the hospital, the family was confronted with the following issues related to decision-making, including resuscitation options, treatment choices, the use of health aide in the hospital, discharge date, arrangement for after care, and financial consideration. A core category of family decision making patterns stood out in that the primary decision-maker played the role of negotiator and coordinator upon the patient s discharge. The data showed a six-stage of decision making process by the family: sensing changes in family functioning and subsequent needs for redefining members role in making decision, facing various ethical dilemmas instantly, being confirmed of an upcoming discharge, gathering siblings for discussion and negotiation, selecting an option and being prepared for actions, evaluating care outcomes and making care readjustment and living rearrangement. Data analyses indicated four antecedents affecting family decision making process, including the dynamics of family relationship, the belief of and commitment to filial piety, the characteristics of the primary decision-maker, and the quality of discharge planning. In the process of making decision, family members were confronted with some obstacles, including ethical dilemmas, the lack of consensus among siblings, a deterioration of parental conditions, the lack of financial resources and service information. There were some facilitators for family to fall on to in their decision v

7 making process, including an improvement of parental conditions, the interventions by discharge planners, an acquisition of needed resources. The outcomes depended on how well family decision-makers functioned as negotiator and coordinator. The data generated six patterns of the outcomes from the functional role of negotiator and coordinator before or after discharge, including aggressive-passive, directivecooperative, participatory-conflict meditative, participatory-rationally persuasive, participatory-harmony communicative, conflict-self-consumptive-chaotic patterns. This study marked one of the few in that literature that sketched a theoretical framework for decision making process by family while their members were discharged from an acute hospital. Implications for education and training of discharge planners were drawn. Suggestions for future research were also mentioned. Key Words: Grounded theory, Discharge Planning, Chronic conditions, Decision-making process, Patterns of decision-making by family vi

8 vii I II

9 viii

10 ix

11 (Newby,1996) (Zarit & Knight, 1996) (2004) (2005) % 49.59% (2002) % % 91 9% % 1994 (co-morbidity) complication (cumulative) (synergistic) 1999 (2003) 92 (1) (2) (3) (4) 1

12 1999 General Household Survey(GHS) % % Heath & Schofield, 1999 Pierce(1997) 65 0%8 25 (1997) 75.8% 6.7% (2000) (CVA) (2005) Kettel(1996) (2000) (Gross Domestic Products, GDP) % % (Lee, 2001) 2

13 (Barker, 1994; Zarit & Knight, 1996) (1999) (Zarit & Knight, 1996) ( 1989) (Jackson,1994) Rhoads, Dean, Cason & Blaylock, % %

14 ( ) (1) (2) (3) (4) (2000) Abramson, Donnelly, King and Mailick (1993) 4

15 5 (Reust & Mattingly, 1996) (2000)

16 (disable elderly)65 activities of daily living, ADLs (instrumental activities of daily living, IADLs) (chronic condition) (discharge planning) (decision making process) 6

17 Hymovich and Barnard (1973) Heath and Schofield (1999) (Barry, 1984; Heath & Schofield, 1999) (Heath & Schofield, 1999) (Barke, 1994) (Heath & Schofield, 1999) 7

18 (Hymovich & Barnard, 1973; Newby, 1996; Hanson, 2001) (Barry, 1984) Maslow (1) (2) (3) (4) (5) (Heath & Schofield, 1999) Strauss (1) (2) (3) (4) (5) (6) (Heath & Schofield, 1999 ; Archbold, 1980) 60%70% (Robinson, 1997)Heywood Jones 8

19 (Heath & Schofield, 1999; Archbold, 1980) (Heath & Schofield, 1999)Barker(1994) (discharge planning) ( 1998Jackson, 1994 ; Charlesworth & Mckenzie, 1996) (American Hospital Association, AHA) (centralized) (corrdinated) (multidisciplinary) (interdisciplinary) ((Tuzman & Cohen, 1992; Lile, & Borgeson, 1998) Anderson and Helms(1993) 9

20 ( (Dr. Cabot) (National Advisory Commission on Health Facilities) 1983 (diagnosis-related groups, DRG) (prospective payment system, PPS) ( 10

21 1998) ORBA(Omnibus Budget Reconciliaction Act)1986 JCAHOAHAANA (Lile & Borgeson, 1998) (1985) (1985) ( ) ( 1999) 2001 (Joint Committee Accreditation on Health Organization, JCAHO) 11

22 (Lile & Borgeson, 1998)AHA(American Hospital Association)1983 (Lile & Borgeson, 1998) (Jewell, 1993; Lile & Borgeson, 1998) (Charlesworth & Mckenzie, 1996) 12

23 (Bull & Roberts, 2001) (Anthony & Hudson-Barr, 1998)Driscoll (2000) 40 53% 19% 48% 58% Dai, Chang, Hsieh and Tai (2003) (craniotomy) (stroke) 13

24 (2000) % % Carroll Johnson (Lewis, Pearson, Corcoran-Perry & Narayan, 1997; Tuzman & Cohen, 1992) 1997 Marquis and Hustom(1994) (Baumann, Johnston & Antai-Otong, 1990) Herbert A. Simon 14

25 1971 (2003) Matteson and Hawkins (1990) Balneaves and Long(1999) Janis & Mann 1977 (the conflict-theory model of decision making) (1) (2) (3) (4) (5) (6) (7) (2001Beckingharm & Baumann,1990 ; Balneaves & Long, 1999 ; Marquis 15

26 & Huston, 1994) (Balneaves & Long, 1999; Matteson & Hawkins,1990) (1) (2) (3) ( 2001) (2003) (R. J. Sternberg)1985 (1) (2) (3) 1122 ( 2003) 16

27 17 ( ) ( 1994) (1) (2) (3) (4) (5) ( 1997) ( 2000) ( 1997)Duvall Hill 1948 (National Conference on Family life) (family life cycle)

28 18 ( 1999) ( ) ( (familism) (1) (2) (3) (4) (5) ( 1991) ( 1987)

29 ( ) (Jones & Dimond, 1982)Hanson(2001) (symbolic interaction theory) (Charon,1998; Cutcliffe, 2000; Denzin & Lincoln, 2000) ( 1999Hanson, 2001) ( 1999) 19

30 ( 2002Hanson, 2001) (Jones & Dimond, 1982) (Zarit & Knight, 1996) (Zarit & Knight, 1996) 450 ( ) (Hargrave & Hanna, 1997) (Medicare s propective payment system) 20

31 (Collopy, Duble & Zuckerman, 1990; Hardwing, 1990) (case payment (Collopy, Duble & Zuckerman, 1990; Zarit & Knight, 1996) ( 2001) Archbold (1980) (1) (2) (3) (4) 21

32 ( 1999) (1) (2) (3) (4) ( 1991) (1) (2) (3)(4) (5) (6) (7) (8) (9) (10) ( 1991Abramson etal, 1993 ; Miller & Janosik, 1980) (Abramson, 1990) (Collopy, Duble & Zuckerman,1990) (Jackson, 1994) (Abramson, 1990) 22

33 (Blustein, 1993) (Blustein, 1993; Hardwing, 1990) Reust and Mattingly(1996) 39 (Hardwing, 1990) Hardwing(1990) (Blustein, 1993) (Hardwing, 1990) (Reust & Mattingly, 1996) 23

34 (Jackson, 1994) (Tuzman & Cohen, 1992) Donnelly and kings PPS) (DRGS) (Abramson etal, 1993) Morton, Deleon and Fals (1996)Loma Linda Marsha, Valinda, Sheila and Suzanne (1997) Gadow 24

35 (1) (2) (3) (4) (5) (Lewis, Pearson, Corcoran-Perry & Narayan, 1997) (Keffer, 1997) (Abramson etal, 1993) Hardwing (Blustein, 1993) (Hardwing, 1990) 25

36 (Blustein,1993) Jewell (1993) Procter, Wilcockson, Pearson and Allgar (2001) 26

37 (grounded theory) Glaser and Strauss 1967 (Denzin & Lincoln, 2000) (field) (1) (2) (3) (4) (5) (Cutcliffe, 2000 ; Denzin & Lincoln, 2000Strauss & Corbin, 1990) (symbolic interaction) (pragmatism) (Charon,1998) ( 1996) 27

38 Denzin & Lincoln( 2000) (1) (extreme or deviant case sampling)(2) (intensity (3) (maximum variety sampling)(4) (critical case sampling) 28

39 15 in-depth interview 13 (Cutcliffe, 2000)

40 30-2 Burnard (1991) (1997) (coding) 14 (1) (2) (3) (4) (5) / (6) (7) (8) (9) (10) (11) (12) (13) (14)

41 31 N H HI3,33, H HI3,33, N H HI3,33, HI3,33, H I 3 HI

42 32 II1,11, LI2,17, LI2,34, AI2,12, KI1,10, LI2,23, BI1,3,53-55 MI2,19, LI2,16,

43 33 Glaser1967 (Denzin, & Lincoln, ) (work) ( ) (relevance) (member check) (HM) (modifiable)

44 13 A-M 13 CIHM ABDEFHKL G (RCW) 34

45 A RCW B C D E F G H I J K L M RCW RCW RCW

46 A 73 A A RCW A B B B B 24 C C C 36

47 C C C RCW D D D D D E 82 E E 20 E 37

48 E 24 E E E F 74 F F F F F F G 95 G G G G G G 38

49 G G H 80 H H H H H H I 73 39

50 I I I I RCW J 74 J 20 J J 40

51 J K 88 K 30 K K K 921 K K K K K L 88 L 41

52 L L L L L L M 74 M M M RCW 42

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54 44 J E, I G

55 45 F E G I 2.

56 46 A M A M A M

57 47 A M J J 20

58 20 support support support J J J 20 C

59 C H H

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61 51 H L D G D G D G G D

62 52 G E K EK E K 921

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69 59 J C H

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76 L X 66

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79 69 H L B K B H C

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81 71 J G H J M

82 72 H G H

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85 75 M F I 2. A M L

86 76 G 3. B D G L M

87 77 B E K M A F G I

88 78 C J L A B D F

89 79 H L L I E J B

90 80 B E D L C Day care 24

91 81 A 2000 M C D G I

92 82 G E B (1) (2) (3)

93 83 C (1) (2) (3) C C J (1) J (2) J NO (3)J

94 84 J J J H (1) (2) (3) (4) DFK BHJ

95 85 (1) D K B F F K (2) B D F (3)

96 86 F H D F (4) H J E

97 87 G F D F G (6) G B

98 88 J AILM CE (1) E I M (2) L

99 89 M (3) I L E (4) E

100 90 C (5) L M D

101 91 F G F D H G

102 92 J J J J K D

103 93 L OK I

104 94 L A I L C

105 95 (1) C I L (2) E L X (3) A C

106 96 L (4) I M (5) I L

107 97 B L L J

108 98 JL J I I ok H

109 99 H H 6000 D K D 1050

110 E K K K K F F 100

111 101 (1) M F (2) F M A G G C (1)

112 102 C (2) G A (3) C A 60 (4) C C C / /

113 103 B

114 104 B

115 105 G 95 G J J J J

116 106 H

117 107 H H H H BGJ

118 108

119 109 / F FM J J 1. M

120 110 F J 2. J 3. F

121 111 M F M D G

122 112 G D G D G 3. D D G G

123 D G B H H

124 B H 2. H B 3. H

125 115 B 4. H XX XX B 5. H

126 116 B B H H B 7. H

127 117 B B BH LI L L L I

128 I L 2. I L L

129 I L X X X 8 31 X 4. I L

130 I L L 6. I I

131 121 L L L AEK EK A A 1. A

132 122 E K 2. A E K 3. A E K 4. A

133 123 E K AEK EK E

134 124 C C

135

136 126

137 127 ( ) ( )

138 128

139 129 ( ) D A M

140 130

141 131 (2002) I I

142 (dysfunctional) 132

143

144 134 / Kao and Stifbergen (1999) (1) (2) (3) (4) (2000) 12 (1) (2)

145 135 ( 2003) (2000) (1999) (2001) Parrott and Bengtson(1999) A M

146 136 (1999) ( 2003) (2000) (1999) (1) (2) (Brody, Hoffman, Kleban, & Schoonover, 1989)

147 I C (Lee, Mancini, & Maxwell, 1990) L B C C L 137

148 138 H ( 1995) (2001) Peterson (1990) Kim and Lee (2003) 13

149 B F (2000) (1998) Kao and Stuifbergen (1999) / ( ) (Johnson, 1990Jolicoeur & Madden, 2002) Spitze and Logan (1990) 139

150 140 (Brody etal, 1989) Silverstein; Parrot and Bengtson(1995) ( )

151 (principle of autonomy) (self-determined) (self-governed) ( 1997) WHO (1978 UK Audit Commission(1993) (Phillips & Woodward, 1999) (1999) 1986 (Patients Self Determination Act) (living will) (power of attorney) (1997) (competence) (1) (the isolate) (2) (the partner) (3) (the outsider) 141

152 (Nolan etal,1996) (1999) (1) (2) (3) (4) Nolan etal (1996) (1) (positive choice) (2) (rationalized alternative) (3) (the discredited option) (4) ( the fait accompli) 142

153 143 (2004) (1999)

154 2 / (2001) (2002) RU486 Kao and Stuifbergen(1999) (1) (breaking Hansony) (2) (rebuilding Hansony) (3) (evolution) 144

155 ( 2004Ryan. & Scullion, 2000) (Ryan & Scullion, 2000; Watt, 2000) (Watt, 2000) 145

156 146 Hanson (2001) Hanson (2001) Watt (2000) Dellasega and Mastrian(1995)

157 (Watt, 2000) (Dellasega & Mastrian 1995) (Dellasega & Mastrian, 1995; Johnson, 1990; Ryan & Scullion, 2000) (Beckingharm & Baumann, 1990) 147

158 (Watt, 2000) Dellasega and Mastrian (1995) Johnson (1990) Ryan and Scullion (2000) Henderson and Zernike (2001) J G 148

159 Hardwing(1990) 1-3 Hardwig(1990) (Dellasega & Mastrian, 1995; Procter & Wilcockson 2001; Watt,2000) (2001) Gold, Reis, Markiewicz and Andres (1995) % 73.9% 7% Watt (2000) 149

160 150 Beckingharm and Baumann (1990) (Watt,2000) Watt (2000)

161 151 L Dellasega and Mastrian(1995)

162 (Beckingharm & Baumann,1990; Hanson, 2001; Matteson & Hawkins,1990; Pierce & Hicks 2001; Ryan & Scullion, 2000) 13 (Matteson & Hawkins, 1990) (Balneaves & Long,1999; Matteson & Hawkins, 1990; Pierce & Hicks, 2001;Watt, 2000) ( ) (1998) 152

163 ( 1999) Kao and Stuifbergen (1999) (2000) Johnsion (1990) Jolicoeur and Madden (2002) (2001) 153

164 154 (2000) (1) (2) (3) (2000) 1. (1) (2) (3) 2. / 3.

165 155

166 156 ( 1983) (1989) (1999) Johnson (1990)

167 157

168 158 / / DK FB

169 159 B EL

170 160 (2004) 13 13

171 161

172 162 (1971) (pp.56-59) (1999) (2000) (2000) (1994) (2003) (2004) 31(2) (1999) (2000) (1997) 1(4) (1998) 2(1)10-16 (1999) (2001) (pp.79-93) (1983) 30(2)1-14 (1999) (1995) 14(3)

173 163 (1997) (2001) (1999) (2001) 9(1)15-27 (2004) 106 (2000) (pp ) (1998) (2001) (2000) (1995) (2000) (1997) (1989) 36 (2)25-34 (1996) 4(3) (1998)

174 164 (1999) 7(2) (1985) 32(1)7-11 (2002) (pp ) (2003) 2001 (pp ) (2002) (1999) - pp (1985) 32(1)17-23 (1991) (1995) (2001) (2002) 35(4)49-57 (1997) (1999) VS (1998)

175 165 (45) (1998) 45(5)66-72 (2000) 15(2)71-84 (1998) (2004) (2000) 47(4)76-86 (2003) (2003) (1998) 10(1)61-68 (1998) (1987) (2000) 6(1)88-93 (2002)RU486 13(2) (1994) (2001) 5(2) (1999)

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184 The relating factors of family decision making during the period of discharge planning (02) ext

185 175 V ( ) ( ) ) ( ) ( )

186 176 xx (initiate) xxx

187 177 MMSE Barthel scale NO