Surrogate

Hospice

AFTERDEATH

Interview

Toolkit of Instruments

to Measure End

of Life Care

_______________

STUDY ID DATE OF INTERVIEW

_____________________ _________________

INTERVIEWER ID SURROGATE ID

_____/_____/_____ _________________

PATIENT DOB PATIENT AGE

PATIENT DIAGNOSIS: ____________________________________________

PATIENT KARNOFSKY SCORE: __________________________________

PATIENT RELIGIOUS PREFERENCE: ______________________________

PATIENT MARITAL STATUS: ____________________________________

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.
• Do you think this is where (PATIENT) would have most wanted

to die?

YES ........................................1 (5)

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

• 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 (HOSPICE). 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. You and your family will continue to receive 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. Were you (PATIENT'S) main caregiver, or one of the main caregivers?

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

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

___________________________________________________________

V2. Please tell me the address and telephone number of the person who was (PATIENT'S) main caregiver.

________________________________

Address

________________________________

City State Zip

(___) _________________________

Area Code Telephone Number

___________________________________________________________

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

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

_____________________________________________________________

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

Inpatient Hospice.......................1

Patient's Own Home......................2

Surrogates Home.........................3

Other Home..... ........................4

Hospital (ICU Unit).....................5

Hospital (other)........................6

Nursing home or other

long-term care facility ................7

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

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

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

________________________________________________________________

2. Do you think that was where (PATIENT) would have most

wanted to die?

YES ....................................1 (4)

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

______________________________________________________________

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

_______________________________________________

_______________________________________________

_______________________________________________

_______________________________________________

4. Do you think that (PATIENT) was referred to hospice at the right time, or was it too late or too early?

At the right time.......................1 (5)

Too late................................2

Too early...............................+ (5)

4B. (IF TOO LATE) When do you think (PATIENT) should have been referred to hospice? _________________________________

_______________________________________________________

______________________________________________________

5. Did you or (PATIENT) and the hospice team make a plan to ensure that any wishes (PATIENT) had for medical care were followed?

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

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

INTRODUCTION: The next questions are about what happened in the last week of (PATIENT'S) life.

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

YES.....................................1 (25)

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

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

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

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

0 1 2 3 4 5 6 7

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

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

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

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

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

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

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

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

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

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

INTERVIEWER: FOR QUESTION 10, RECORD THE SYMPTOMS NOTED BY THE RESPONDENT. FOR EACH SYMPTOM, ASK QUESTIONS 10B- 10E. FILL IN RESPONSES TO QUESTIONS IN THE TABLE BELOW.

10A. What were the two most bothersome symptoms for (PATIENT)in the last week of life?

10B. How often did (PATIENT) have (SYMPTOM)? Would you say...

10C. How severe was the (SYMPTOM)? Was it...

10D. How much did (SYMPTOM) distress or bother (PATIENT)? Would you say...

10E. Did (PATIENT) tell you directly about (his/her)(SYMPTOM)?

INTERVIEWER: IF RESPONDENT MENTIONED PAIN AS A BOTHERSOME SYMPTOM, GO ON TO QUESTION 12. IF RESPONDENT DID NOT MENTION PAIN AS A BOTHERSOME SYMPTOM, ASK:

____________________________________________________________________

11. In the last week of life, did (PATIENT) experience pain?

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

NO......................................2 (18)

____________________________________________________________________

1. Did someone from the hospice team talk with you or (PATIENT) about how pain would be treated?

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

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

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

1. Did someone from the hospice team tell you or(PATIENT) about medicine for pain in a way that you understood?

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

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

14. Did someone from the hospice team tell you or (PATIENT) how pain would be treated if it got worse?

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

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

15. Was there any time that members of the hospice team at (HOSPICE)did not do everything they could to help control(his/her) pain?

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

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

16. Did you or (PATIENT) ever have to call someone on the hospice team because the pain got so bad?

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

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

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

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

NO......................................2 (22)

17B. IF YES: how long was the wait? _______________

INTERVIEWER: REFER TO THE SYMPTOMS LISTED IN NUMBER 10. IF PAIN WAS ONE OF THE SYMPTOMS MENTIONED, GO ON TO 19, USING THE SYMPTOM OTHER THAN PAIN. IF NEITHER SYMPTOM MENTIONED WAS PAIN, ASK:

____________________________________________________________________

18. Of the symptoms you mentioned as being troublesome for (PATIENT), (NAME THE SYMPTOMS), which of these was the most troublesome for (PATIENT)?

________________________________

19. Did someone from the hospice team talk with you or (PATIENT) about how (SYMPTOM) would be treated?

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

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

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

20. Did someone from the hospice team tell you or (PATIENT)

about the medicine for (SYMPTOM) in a way that you understood?

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

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

21. Did someone from the hospice team tell you or (PATIENT) how (SYMPTOM) would be treated if it got worse?

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

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

22. Was there any time when members of the hospice team at (HOSPICE) did not do everything they could to help control(his/her)(SYMPTOM)?

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

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

23. Did you or (PATIENT) ever have to call someone on the hospice team because the (SYMPTOM)got so bad?

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

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

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

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

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

24B. IF YES: how long was the wait? _______________

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

25. Did someone from the hospice team talk with you and/or (PATIENT) about your religious or spiritual beliefs in a sensitive manner?

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

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

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

26. Did someone from the hospice team suggest that you and/or (PATIENT) see a religious or spiritual leader?

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

NO......................................2 (27)

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

26B. IF YES: Was it at the earliest time it would have been helpful?

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

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

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

27. Was there anything the hospice team at (HOSPICE) did that made it harder to practice your religious or spiritual beliefs? YES 1 NO 2 (28) DON'T KNOW + (28) 27B. IF YES: Please tell me about it:

___________________________________________________________ ___________________________________________________________ ___________________________________________________________

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

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

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

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

29. Did members of the hospice team really listen to you and (PATIENT) about your hopes, fears, and beliefs as much as you wanted?

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

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

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

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

30. Did someone from the hospice team talk to you about what would happen at the time of death?

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

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

31. Did you or (PATIENT) want someone from the hospice team to be there when (PATIENT) died?

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

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

32. Was someone from the hospice team there when (PATIENT) died?

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

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

33. Did someone from the hospice team call you to see how you were doing after (PATIENT'S) death?

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

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

INTRODUCTION: Now I am going to ask you some questions about your feelings about the medical care that (PATIENT) got at (HOSPICE). Please answer yes or no to the following questions.

34. Do you feel that more should have been done by the hospice team to keep (PATIENT) free from pain?

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

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

35. For symptoms other than pain, do you feel that more should have been done to keep (PATIENT) comfortable?

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

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

36. Did you or (PATIENT) want to be more involved in making

decisions about (PATIENT'S) care?

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

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

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

37. Would you have liked the hospice team to be more sensitive to your feelings?

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

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

38. Did you feel that the hospice team should have paid more attention to your wishes for (PATIENT'S) care during the

final illness?

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

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

39. Did you feel that the members of the hospice team were as helpful as possible in explaining (PATIENT'S) condition?

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

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

40. Do you feel that the hospice team provided you with enough information so that there were no surprises or unplanned medical events?

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

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

41. Did you have confidence in the team who took care of (PATIENT) during the final illness?

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

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

INTRODUCTION: Now I would like to ask you a few questions about (PATIENT) and yourself. These questions are asked of each person in the study to show that the study includes people from varied backgrounds.

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

___ Years

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

43. What race did (PATIENT) consider (himself/herself)?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

46. What is your relationship to (PATIENT)?

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

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

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

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

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

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

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

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

47. What is your birth date?

              /   /

48. How many years of school did you complete?

_ _ Years

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

49. If you were to describe the overall treatment of (PATIENT)

and (his/her) loved ones at (HOSPICE), would you say it was excellent, very good, good, fair, or poor?

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

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

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

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

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

50. Did you trust that (HOSPITAL) would provide the best medical care possible for (PATIENT)?

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

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

51. Would you recommend (HOSPICE) for the care of a seriously

ill friend or family member?

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

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

51B. IF NO: Why Not?

___________________________________________________________

___________________________________________________________

___________________________________________________________

___________________________________________________________

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: ____:____