Surrogate

Integrated Care System

AFTERDEATH

Interview

Toolkit of Instruments

to Measure End

of Life Care

_______________

STUDY ID DATE OF INTERVIEW

_____________________

INTERVIEWER ID

_________________

SURROGATE ID

_____/____/____

PATIENT DOB

PATIENT GENDER: ___________ 0 = FEMALE

1 = MALE

SURROGATE GENDER: 0 = FEMALE

1 = MALE

SURROGATE NAME:

(FIRST) (LAST)

INSTRUCTIONS FOR THE INTERVIEWER:

• WHEN CONDUCTING THIS INTERVIEW, READ ALL LOWERCASE TEXT ALOUD.
• INSTRUCTION FOR INTERVIEWERS IS PROVIDED THROUGHOUT THE QUESTIONNAIRE IN CAPITAL LETTERS. WORDS APPEARING IN CAPITAL LETTERS ARE MEANT TO GUIDE THE INTERVIEWER AND SHOULD NOT BE READ ALOUD.
• INSTRUCTIONS, WRITTEN IN LOWERCASE LETTERS, SHOULD BE READ ALOUD TO THE RESPONDENT TO GUIDE HIM/HER IN ANSWERING.
• QUESTIONS SHOULD BE READ IN THEIR ENTIRETY, EXACTLY AS WRITTEN.
• MANY OF THE QUESTIONS ARE FOLLOWED BY ELLIPSIS (...) INDICATING THAT THE INTERVIEWER SHOULD READ THE ANSWER CHOICES ALOUD TO THE RESPONDENT. READ ALL OF THE ANSWER CHOICES BEFORE PAUSING FOR A RESPONSE. FOR YES/NO QUESTIONS, AS WELL AS A FEW SELECT OTHERS, THE ANSWER CATEGORIES SHOULD NOT BE READ. THESE QUESTIONS WILL NOT BE FOLLOWED BY ELLIPSIS AND THE ANSWER CATEGORIES WILL APPEAR IN UPPERCASE LETTERS.
• THE INTERVIEWER WILL OFTEN BE EXPECTED TO FILL IN PERSONAL INFORMATION INTO SURVEY QUESTIONS. FOR INSTANCE, THE PATIENT'S NAME IS OFTEN INSERTED INTO QUESTIONS. THE INTERVIEWER WILL KNOW TO SUBSTITUTE SPECIFIC INFORMATION WHEN A WORD WRITTEN IN CAPITAL LETTERS IS ENCLOSED IN PARENTHESES:

Was (PATIENT) able to make decisions in the last week of life?

READ AS:

Was Mr. Smith able to make decisions in the last week of life?

AT TIMES, THE NAME OF THE HOSPITAL IN WHICH THE PATIENT DIED SHOULD BE INSERTED, OR THE DATE ON WHICH THE PATIENT DIED. THE INTERVIEWER SHOULD BE PREPARED WITH THIS INFORMATION BEFORE BEGINNING THE INTERVIEW.

• WHEN LOWER CASE WORDS APPEAR IN PARENTHESES, THE INTERVIEWER SHOULD CHOOSE THE APPROPRIATE WORD:

Was (PATIENT) unconscious or in a coma all of the time during the last week of (his/her) life?

READ AS:

Was Mrs. Jones unconscious or in a coma all of the time during the last week of her life?

• WORDS THAT ARE UNDERLINED SHOULD BE EMPHASIZED WHEN READ. IT IS IMPORTANT TO THE MEANING OF THE QUESTION THAT THESE WORDS ARE READ WITH EMPHASIS.
• AT TIMES, OPTIONAL WORDS OR PHRASES ARE PROVIDED IN PARENTHESES AFTER A QUESTION. THESE WORDS OR PHRASES SHOULD BE READ ONLY IF THE RESPONDENT REQUESTS FURTHER CLARIFICATION. IN ALL OTHER CASES, QUESTIONS SHOULD BE READ AS WRITTEN, AND NO DEFINITION OR CLARIFICATION SHOULD BE PROVIDED TO THE RESPONDENT.
• CIRCLE THE NUMBER CORRESPONDING TO THE ANSWER CHOSEN BY THE RESPONDENT. FOR FILL IN OR OPEN TEXT ANSWERS, WRITE IN THE APPROPRIATE INFORMATION AS STATED BY THE RESPONDENT.
• BASED ON THE ANSWERS TO CERTAIN QUESTIONS, IT IS SOMETIMES LOGICAL TO SKIP SUBSEQUENT QUESTIONS (A SURROGATE WHO REPORTS NO PAIN SHOULD NOT BE ASKED ABOUT PAIN SEVERITY). INSTRUCTION ON SKIPS IS GENERALLY PROVIDED WITHIN PARENTHESES AFTER A SPECIFIC ANSWER CHOICE. IF THIS ANSWER IS SELECTED, MOVE ON TO THE QUESTION NUMBER INDICATED AFTER THAT ANSWER CHOICE.
• During the last hospitalization, did (PATIENT) have depression?

YES 1

NO 2(54)

• AT TIMES, IT IS NECESSARY TO REFER BACK TO PREVIOUS ANSWERS TO DETERMINE IF A QUESTIONS OR GROUP OF QUESTIONS SHOULD BE SKIPPED OR READ. IT IS IMPORTANT THAT THE INTERVIEWER FAMILIARIZE HIM/HERSELF WITH THE INSTRUMENT BEFORE CONDUCTING INTERVIEWS.

______________________________________________________________

Oral Informed Consent for Telephone Survey

______________________________________________________________

INTRODUCTION:

Hello, is this (SURROGATE)? My name is (YOUR NAME) and I am working on a study of patients of (SYSTEM). I am sorry to hear of the loss of (PATIENT). We are working on a program to help seriously ill patients and families make the best possible medical decisions. We are doing this by speaking to individuals such as yourself who can provide important information about the dying experience of a loved one. I realize that this is a difficult time for you, (SURROGATE), but I wonder if I might ask you some questions. Your answers will help families in the future. To make sure you have all the information, I am going to read you a few sentences about the study.

Interviewer: Read the following to each respondent. Do Not proceed with the interview until the points have been heard by the respondent and all questions and concerns have been answered.

* The study that I am asking you to participate in will provide important information about how doctors and patients discuss decisions that will be made at the end of life.

* Your participation is very important for the success of this research.

* I will be asking question about (PATIENT'S) health and about (his/her) expectations and preferences for medical care.

* You are free to decide Not to be involved at all or you may stop at any time. You are free to refuse to answer any question or group of questions. Your physician, (SYSTEM), and (HOSPITAL) will continue to provide you with the best care possible whether or Not you decide to participate in the study.

* Your answers will be kept strictly confidential and will be used only for the purpose of this project.

May I begin?

YES...................1 (continue)

NO....................2 (thank them for their time)

________________________________________________________

INTERVIEWER: NOTE START TIME HERE ____:_____

________________________________________________________

V1. You were identified as the person who was or would have been involved in decisions about the medical care of (PATIENT). Is this correct?

YES.....................................1 vsurr1

NO......................................2

____________________________________________________________

V2. Is there anyone else who was or would have been involved in decision making on (his/her)behalf?

Name__________________________________ vsurr2

NO other person.........................2 (1)

DON'T KNOW..............................+ (1)

___________________________________________________________

V3. What is this person's relationship to (PATIENT)?     (vsurr3)

Patient's spouse........................1

Patient's child.........................2

Patient's parent........................3

Patient's sibling.......................4

Some other relative (SPECIFY) _________ 5

Friend..................................6

Partner.................................7

Other __________________________________8

_____________________________________________________________

V4. Please tell me (PERSON'S) address and telephone number. (vsurr4)

________________________________

Address 

________________________________

City State Zip

(___) _________________________

Area Code Telephone Number

INTERVIEWER: IF V1 = `NO', TERMINATE INTERVIEW

INTRODUCTION: Let me begin by asking a few questions about some of the circumstances surrounding (PATIENT'S) death.

1. According to our records, (PATIENT) died on (DATE). Is this correct? (dod01)

YES.....................................1

NO......................................2

DATE____________________________

2. Was (PATIENT) hospitalized in the last month of life?       (hosp02)

YES ....................................1

NO .....................................2

1. Where was (PATIENT) prior to the last hospitalization?   (hosp03)

      Patient's Own Home .................1

      Nursing home ........................

      or other long-term care facility.....2

      Inpatient Hospice ...................3

      Surrogates Home .....................4

      Other Home ..........................5

      Other ...............................6

      Don't know ..........................+

1. Did the health care team at (HOSPITAL) have enough information about (PATIENT)to provide the best care possible?    (info04)

      YES .................................1

      NO ..................................2

5. Where did (his/her) death take place?   (site050 

Hospital (ICU Unit) ........................1

Hospital (other) ...........................2

Patient's Own Home .........................3

Nursing home

or other long-term care facility............4

Inpatient Hospice ..........................5

Surrogates Home ............................6

Other Home .................................7

Other ......................................8

In Transit to Medical Facility .............9

Don't kNow .................................+

6. Was inpatient Hospice involved in the care of (PATIENT), so that (he/she) stayed in a hospice facility?  (hspice06)

YES ........................................1

NO .........................................2 (8)

______________________________________________________________

7. For about how long did (PATIENT) get inpatient hospice care before (his/her) death?   (hspice07)

_______ DAYS

_____________________________________________________________

8. Was outpatient Hospice involved in the care of (PATIENT), so that a hospice worker cared for (him/her) in the home?  (hspice08)

YES ........................................1

NO .........................................2 (10)

_____________________________________________________________

9. For about how long did (PATIENT) get outpatient hospice care before (his/her) death?  (hspice09)

_______ DAYS

________________________________________________________________

10. Do you think that (ANSWER TO 2) was where (PATIENT) would have most wanted to die?  (pref10)

YES ........................................1 (11)

NO .........................................2

______________________________________________________________

11. What would have allowed (PATIENT) to die at (his/her) preferred place of death?   (pref11)

_______________________________________________

_______________________________________________

_______________________________________________

_______________________________________________

INTRODUCTION: Now I would like to ask you some questions about (PATIENT'S) last day of life.

12. During the last day of life, did (PATIENT) have a resuscitation effort? (that is, was CPR done when (his/her)heart stopped)  (hspice12)

YES..............................1

NO...............................2

DON'T KNOW.......................+

13. During the last day of life, was (PATIENT) attached to a respirator or ventilator? (that is, a machine which helps breathing) (vent13)

YES..............................1

NO...............................2

14. During the last day of life, was (PATIENT) fed through a tube?       (tube14)

YES..............................1

NO...............................2

15. During the last day of life, did (PATIENT) receive dialysis? (or, artificial kidney treatments)  (dialys15)

YES..............................1

NO...............................2

____________________________________________________________________

INTRODUCTION: Now I would like to ask you some questions about (PATIENT'S) final illness.

________________________________________________________________________________________

16. Did (PATIENT) have a signed Durable Power of Attorney for Health Care naming someone to make decisions about medical treatment if (he/she) could not speak for (him/her)self?     (dpoa16)

YES..............................1

NO...............................2

DON'T KNOW.......................+

17. Did (PATIENT) have a signed Living Will giving directions for the kind of medical treatment (he/she) would want if (he/she) could not speak for (him/her) self?      (lw17)

YES..............................1

NO...............................2

DON'T KNOW.......................+

INTERVIEWER: IF RESPONDENT ANSWERED 2 = NO TO BOTH QUESTION 16 AND 17, GO ON TO QUESTION 20. IF RESPONDENT ANSWERED 1 = YES FOR EITHER QUESTION, ASK:

_____________________________________________________________________

18. Had you or (PATIENT) discussed (his/her) Living Will or Durable Power of Attorney for Health Care with (PATIENT'S) primary care doctor?       (addis18)

YES..............................1

NO...............................2

DON'T KNOW.......................+

19. What role did (PATIENT'S) Living Will or Durable Power of Attorney play in making medical decisions? Did it help a great deal, help a little, have no effect, cause some problems, or cause major problems?     (role19)

It helped a great deal...................1

It helped a little.......................2

It had no effect.........................3

It caused some problems..................4

It caused major problems.................5

DON'T KNOW...............................+

20. Did (PATIENT'S) doctor talk with you or (PATIENT), in a way that was easily understandable, about the possibility that (he/she) would die from(his/her)illness?      (prog20)

YES......................................1

NO.......................................2

DON'T KNOW...............................+

21. During the final illness, did (PATIENT'S) doctor tell you or (PATIENT) about choices for treatment in a way you could understand?  (acp21)

YES......................................1

NO.......................................2

DON'T KNOW...............................+

22. Did (PATIENT) have specific wishes or plans about the types of medical treatment (he/she) wanted while dying?  (acp22)

YES......................................1

NO.......................................2 (25)

DON'T KNOW...............................+ (25)

23. Did you or (PATIENT) talk with a doctor about these wishes?  (acp23)

YES......................................1

NO.......................................2 (25)

DON'T KNOW...............................+ (25)

24. Did you or (PATIENT) and (PATIENT'S) doctor make a plan that ensured that (PATIENT'S) wishes for medical treatment were followed?  (acp24)

YES .....................................1

NO.......................................2

INTRODUCTION: The next set of questions is about (PATIENT'S) last week of life.

_______________________________________________________________________________________________________

25. During the last week of (PATIENT'S) life, did (he/she) prefer a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long?     (course25)

Extend Life as much as possible....................1

Relieve Pain or discomfort as much as possible.....2

DON'T KNOW.........................................+ (27)

26. To what extent were these wishes followed in the medical treatment (he/she) received during the last week of life? Were they followed...  (pref26)

a great deal.............................1

very much................................2

moderately...............................3

very little..............................4

not at all...............................5

DON'T KNOW...............................+

27. Was(PATIENT)unconscious or in a coma all the time during the last week of(his/her)life?  (coma27)

YES......................................1 (89)

NO.......................................2

DON'T KNOW...............................+ (89)

28. Could(PATIENT)communicate in some way during the last week of life?    (commun28)

YES......................................1

NO.......................................2

29. Was(PATIENT)able to make decisions in the last week of life?      (decis29)

YES......................................1

NO.......................................2

INTERVIEWER: FOR THE FOLLOWING QUESTION, LET THE RESPONDENT DEFINE “GOOD” AS WHATEVER IT MEANS TO THE RESPONDENT. DO NOT PROVIDE ANY DEFINITION.

____________________________________________________________________

30. In the last week of life, how many “good days” do you think (PATIENT) had?    (gooday30)

0 1 2 3 4 5 6 7

31. How difficult was it for (PATIENT) to tolerate the physical symptoms and problems(he/she)experienced? Was it...       (pyssym31)

very difficult..........................1

somewhat difficult......................2

not very difficult......................3

not at all difficult....................4

32. How difficult were the emotional symptoms and problems (he/she) experienced? Were they...     (emsym32)

very difficult..........................1

somewhat difficult......................2

not very difficult......................3

not at all difficult....................4

INTRODUCTION: The following questions are about (PATIENT'S) last week of life.

____________________________________________________________________

33. During the last week of life, did (PATIENT) have shortness of breath? (sob33)

YES.....................................1

NO......................................2 (38)

34. How often did (he/she) have shortness of breath? Did (he/she) have it... (sob34)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

35. How severe was the shortness of breath? Was it...      (sob35)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

36. How much did the shortness of breath distress or bother (him/her)? Would you say...     (sob36)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

37. Did(PATIENT)tell you directly about(his/her)shortness of breath?           (sob37)

YES.....................................1

NO......................................2

38. During the last week of life, did (PATIENT) have nausea or vomiting? (sob38)

YES.....................................1

NO......................................2 (43)

39. How often did(he/she)have nausea or vomiting? Was it...  (nausea39)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

40. How severe was the nausea or vomiting? Was it...       (nausea40)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

41. How much did the nausea or vomiting distress or bother(him/her)? Would you say...     (nausea41)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

42. Did(PATIENT)tell you directly about(his/her)nausea or vomiting?     (nausea42)

YES.....................................1

NO......................................2

43. During the last week of life, did (PATIENT) have fatigue?      (ftigue43)

YES.....................................1

NO......................................2 (48)

44. How often did (he/she) have fatigue? Was it...     (ftigue44)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

45. How severe was the fatigue? Was it...     (ftigue45)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

46. How much did the fatigue distress or bother (him/her)? Would you say... (ftigue46)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

47. Did (PATIENT) tell you directly about (his/her) fatigue? (ftigue47)

YES.....................................1

NO......................................2

48. During the last week of life, did (PATIENT) have anxiety?     (anxty48)

YES.....................................1

NO......................................2 (53)

49. How often did (he/she) have anxiety? Was it...  (anxty49)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

50. How severe was the anxiety? Was it...     (anxty50)

not at all severe.......................1

moderately severe.......................2

extremely severe 3

51. How much did the anxiety distress or bother (him/her)? Would you say... (anxty51)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

52. Did (PATIENT) tell you directly about (his/her) anxiety?      (anxty52)

YES.....................................1

NO......................................2

53. During the last week of life, did (PATIENT) have depression?     (depres53)

YES.....................................1

NO......................................2 (58)

54. How often did (he/she) have depression? Was it...      (depres54)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

55. How severe was the depression? Was it...     (depres55)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

56. How much did the depression distress or bother (him/her)? Would you say...   (depres56)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

57. Did (PATIENT) tell you directly about (his/her) depression?     (depres57)

YES.....................................1

NO......................................2

58. During the last week of life, did (PATIENT) have confusion?    (confus58)

YES.....................................1

NO......................................2 (62)

59. How often did (he/she) have confusion? Was it...       (confus59)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

60. How severe was the confusion? Was it...      (confus60)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

61. How much did the confusion distress or bother (him/her)? Would you say...       (confus61)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

62. During the last week of life, did (PATIENT) have pain?      (pain62)

YES.....................................1

NO......................................2 (67)

63. How often did (he/she) have pain? Was it...     (pain63)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

64. How severe was the pain? Was it...     (pain64)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

65. How much did the pain distress or bother (him/her)? Would you say... (pain65)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

66. Did (PATIENT) tell you directly about (his/her) pain?       (pain66)

YES.....................................1

NO......................................2

67. During the last week of life, what were the two most troublesome symptoms for (PATIENT)?     (sx67)

1. ___________________________________
2. ___________________________________

INTERVIEWER: HAVE BOTH SYMPTOMS FROM #67 BEEN MENTIONED IN EARLIER QUESTIONS? IF NOT, ASK THE FOLLOWING QUESTIONS FOR EACH SYMPTOM. IF BOTH HAVE BEEN ASKED, SKIP TO QUESTION #76.

____________________________________________________________________

68. How often did (he/she) have (SYMPTOM)? Was it...     (sx68)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

69. How severe was the(SYMPTOM)? Was it...     (sx69)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

70. How much did the (SYMPTOM) distress or bother (him/her)? Would you say...      (sx70)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

71. Did (PATIENT) tell you directly about his/her (SYMPTOM)?      (sx71)

YES.....................................1

NO......................................2

72. How often did (he/she) have (SYMPTOM)? Was it...    (sx72)

occasionally............................1

about half of the time..................2

most of the time........................3

all of the time.........................4

73. How severe was the(SYMPTOM2)? Was it...      (sx73)

not at all severe.......................1

moderately severe.......................2

extremely severe........................3

74. How much did the (SYMPTOM2) distress or bother (him/her)? Would you say...     (sx74)

not at all..............................1

a little bit............................2

somewhat................................3

quite a bit.............................4

very much...............................5

75. Did (PATIENT) tell you directly about his/her (SYMPTOM2)?       (sx75)

YES.....................................1

NO......................................2

INTRODUCTION: The following questions refer to (PATIENT'S) final illness.

INTERVIEWER: IF PATIENT ANSWERED 2=NO TO QUESTION 62 (DID PATIENT HAVE PAIN?), SKIP TO 82. IF PATIENT ANSWERED 1=YES, ASK:

____________________________________________________________________

76. Did (PATIENT'S) doctor talk with you or (PATIENT) about how pain would be treated? IF YES: Who did the doctor speak with, you, (PATIENT), or both of you?      (pain76)

YES, with the patient...................1

YES, with me only.......................2

YES, with both of us....................3

NO......................................4

DON'T KNOW..............................+

77. Did (PATIENT'S) primary care doctor tell you or (PATIENT) about the medicine for pain in a way that you understood?     (pain77)

YES.....................................1

NO......................................2

78. Did (PATIENT'S) primary care doctor tell you or (PATIENT) how pain would be treated if it got worse?     (pain78)

YES.....................................1

NO......................................2

79. Was there any time during the course of illness that (PATIENT'S) doctors or nurses did not do everything they could to help control(his/her) pain?

IF YES: Was the problem with a doctor, a nurse, or both?      (pain79)

YES, doctor.............................1

YES, nurse..............................2

YES, both...............................3

NO......................................4 (80)

79B. Where was (PATIENT) when this occurred? Was it at...

home....................................1

hospital................................2

nursing home or other

long term care facility.................3

inpatient hospice.......................4

80. Did you or (PATIENT) ever have to call someone on the health care team because the pain got so bad?     (pain80)

YES.....................................1

NO......................................2

81. Did (PATIENT) ever have to wait too long for a pain medication to be given to (him/her)?     (pain81)

YES.....................................1

NO......................................2 (82)

81B. IF YES: how long was the wait? _______________  (pain81b)

INTERVIEWER: REFER TO THE SYMPTOMS LISTED IN NUMBER 67. USING THESE SYMPTOMS, ASK:

____________________________________________________________________

82. Of the two symptoms you mentioned as being troublesome for (PATIENT), (NAME BOTH SYMPTOMS), which of these was the most troublesome for (PATIENT)? (sx82)

________________________________

INTERVIEWER: IF PATIENT STATED THAT PAIN IS THE MOST TROUBLESOME SYMPTOM, SKIP TO QUESTION #89. IF THE MOST TROUBLESOME SYMPTOM IS NOT PAIN, ASK:

____________________________________________________________________

83. Did (PATIENT'S) primary care doctor talk with you or (PATIENT) about how (SYMPTOM) would be treated? IF YES: Who did the doctor speak with, you, (PATIENT), or both of you?     (pain83)

YES, with the patient...................1

YES, with me only.......................2

YES, with both of us....................3

NO......................................4

DON'T KNOW..............................+

84. Did (PATIENT'S) primary care doctor tell you or (PATIENT)about the medicine for (SYMPTOM) in a way that you understood?     (pain84)

YES.....................................1

NO......................................2

85. Did (PATIENT'S) primary care doctor tell you or (PATIENT) how (SYMPTOM) would be treated if it got worse?     (pain85)

YES.....................................1

NO......................................2

86. Was there any time during the course of illness that (PATIENT'S) doctors or nurses did not do everything they could to help control(his/her) (SYMPTOM)?

IF YES: Was the problem with a doctor, a nurse, or both?      (pain86)

YES, doctor.............................1

YES, nurse..............................2

YES, both...............................3

NO......................................4

87. Did you or (PATIENT) ever have to call someone on the health care team because the (SYMPTOM)got so bad?     (pain87)

YES.....................................1

NO......................................2

88. Did (PATIENT) ever have to wait too long for (SYMPTOM) medication to be given to (him/her)?     (pain88)

YES.....................................1

NO......................................2 (89)

88B. IF YES: how long was the wait? _______________  (pain88b)

INTRODUCTION: The next set of questions is about religious or spiritual beliefs. Please answer based on (PATIENT'S) final illness.

89. Did someone talk with you and/or (PATIENT) about your religious or spiritual beliefs in a sensitive manner?     (relig89)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

90. Did someone on the health care team suggest that you and/or (PATIENT) see a religious or spiritual leader?     (relig90)

YES.....................................1

NO......................................2 (91)

DON'T KNOW..............................+ (91)

90B. IF YES: Was it at the earliest time it would have been helpful? (relig90b)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

91. At anytime during (PATIENT'S) final illness, was there anything the health care team did that interfered with the practice of your religious or spiritual beliefs?      (relig91)

YES.....................................1

NO......................................2 (92)

DON'T KNOW..............................+ (92)

91B. IF YES: Please tell me about it:     (relig91b)

___________________________________________________________

___________________________________________________________

___________________________________________________________

___________________________________________________________

92. In (his/her) last days, was (PATIENT) at peace and ready to die?     (relig92)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

93. Did any member of the health care team do anything that interfered with (PATIENT) finding peace in (his/her) last days?     (relig93)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

94. Did a doctor really listen to you and (PATIENT) about your hopes, fears, and beliefs as much as you wanted?     (relig94)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

95. Did nurses really listen to you and (PATIENT) about your hopes, fears, and beliefs as much as you wanted?  (relig95)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

INTRODUCTION: The next section is about your feelings about (PATIENT'S) final illness and (his/her) death.

96. Did a member of the health care team talk to you about what would happen at the time of death?     (bereav96)

YES.....................................1

NO......................................2

97. Did a member of the health care team call you to see how you were doing after (PATIENT'S) death?     (bereav97)

YES.....................................1

NO......................................2

98. Did a member of the health care team talk with you about what it would be like for you after (PATIENT'S) death?     (bereav98)

YES.....................................1

NO......................................2

99. Did a member of the health care team suggest someone you could turn to for help if you were feeling overwhelmed?     (bereav99)

YES.....................................1

NO......................................2

INTRODUCTION: Now I am going to ask you some questions about your feelings about (PATIENT'S) medical care during (his/her) final illness. Please answer yes or no to the following questions.

100. Do you feel that more should have been done by the health care team to keep (PATIENT) free from pain during the final illness?     (sat100)

YES.....................................1

NO......................................2

101 For symptoms other than pain, do you feel that more should have been done to keep (PATIENT) comfortable during the final illness?     (sat101)

YES.....................................1

NO......................................2

102. Did you or (PATIENT) want to be more involved in making decisions about (PATIENT'S) care during the final illness?     (sat102)

YES.....................................1

NO......................................2

NO DECISIONS MADE.......................3

103. Do you feel that you or (PATIENT) would have made different decisions about (his/her) care if the health care team had given you more information? (sat103)

YES.....................................1

NO......................................2

104. Would you have liked the health care team to be more sensitive to your feelings?      (sat104)

YES.....................................1

NO......................................2

105. Did you feel that the health care team should have paid more attention to your wishes for (PATIENT'S) care during the final illness?    (sat105)

YES.....................................1

NO......................................2

106. Did you feel that the nurses were as helpful as possible in explaining (PATIENT'S) condition during the final illness?     (sat106)

YES.....................................1

NO......................................2

107. Do you feel that the doctors were as helpful as possible in explaining (PATIENT'S) condition during the final illness?     (sat107)

YES.....................................1

NO......................................2

108. Do you feel that (PATIENT'S) doctor provided you with enough information so that there were no surprises or unplanned medical events in (his/her) final illness?      (sat108)

YES.....................................1

NO......................................2

109. Was there any time during the final illness when it was not clear which doctor was in charge of (PATIENT'S) care?     (sat109)

YES.....................................1

NO......................................2

110. Did you have confidence in the doctors who took care of (PATIENT) during the final illness?     (sat110)

YES.....................................1

NO......................................2

111. Was (PATIENT) referred to specialists (he/she) needed at the right time during the final illness?     (sat111)

YES.....................................1

NO......................................2

NONE NEEDED.............................3

112. Were there any problems with bills, paper work, or anything else to do with (HOSPITAL) during or after (PATIENT'S) final illness?     (sat112)

YES.....................................1

NO......................................2 (113)

112B. IF YES: What were they?  (sat112b)

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INTRODUCTION: The following questions are about (PATIENT) and (his/her) family. These questions are asked of each person in the study to show that the study includes people from various age, financial, educational, and religious backgrounds.

113. Was (PATIENT) married, divorced, separated, widowed, or never been married?      (marr113)

Married.................................1

Divorced................................2

Separated...............................3

Widowed.................................4

Single (never married)..................5

DON'T KNOW..............................+

114. Was (he/she) living alone?     (alone114)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

115. How many years of school did (PATIENT) complete?      (educ115)

___ Years

DON'T KNOW +

116. What race did (PATIENT) consider (himself/herself)? White, Black, Asian, or something else?     (race116)

White...................................1

Black...................................2

Asian...................................3

Something else..........................4

117. Did (PATIENT'S) background include a Spanish or Hispanic heritage? (hisp117)

YES.....................................1

NO......................................2

DON'T KNOW..............................+

118. What was (PATIENT'S) religious preference?     (relig118)

None....................................0

Jewish..................................1

Orthodox Jewish.........................2

Catholic (incl Roman, Orthodox).........3

Jehovah's Witness.......................4

Christian Scientist.....................5

Seventh Day Adventist...................6

Protestant and all other Christian

Denominations...........................7

Some Other Religion.....................8

DON'T KNOW..............................+

119. What was (PATIENT'S) household income in 19__ from all sources before taxes were taken out? Was it...  (incom119)

under $11,000...........................1

$11,000-25,000..........................2

$25,000-50,000..........................3

over $50,000............................4

DON'T KNOW..............................+

Refused.................................-

INTRODUCTION: Now I would like to ask you a few questions about yourself.

120. What is your relationship to (PATIENT)?  (sur120)

Spouse..................................1

Child...................................2

Parent..................................3

Sibling.................................4

Some Other Relative.....................5

Friend..................................6

Partner.................................7

Other...................................+

121. What is your birth date?     (sur121)

            /     /

122. How many years of school did you complete?     (sur122)

____Years

INTRODUCTION: The last questions are about your overall opinion about (PATIENT'S) final illness.

123. If you were to describe the overall treatment of (PATIENT) and (his/her) loved ones during (his/her) final illness,would you say it was excellent, very good, good, fair, or poor?     (sat123)

Excellent...............................1

Very Good...............................2

Good....................................3

Fair....................................4

Poor....................................5

1. Did you trust that (SYSTEM) would provide the best medical care possible for (PATIENT)?  (sat124)

YES.....................................1

NO......................................2

125. Would you recommend (SYSTEM) for the care of a seriously ill friend or family member?     (sat125)

YES.....................................1

NO......................................2

125B. IF NO: Why Not?     (sat125b)

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INTERVIEWER: I really appreciate the time you spent with me and the effort you made to respond to the questions. Do you have any questions?

INTERVIEWER: NOTE END TIME NOW: ____:____