PATIENT

Interview

Toolkit of Instruments

to Measure End

of Life Care

_______________ / /______ _____/____/____

STUDY ID DATE OF INTERVIEW PATIENT DOB

_____________________

INTERVIEWER ID

PATIENT RELIGIOUS PREFERENCE: ______________________________

PATIENT MARITAL STATUS: ___________________________________

PATIENT GENDER: ______0 = FEMALE

1 = MALE

PATIENT 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.
• AT TIMES, THE NAME OF THE INSTITUTION IN WHICH THE PATIENT RECEIVED HIS/HER MEDICAL CARE  SHOULD BE INSERTED. THE INTERVIEWER SHOULD BE PREPARED WITH THIS INFORMATION BEFORE BEGINNING THE INTERVIEW.
• 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 PATIENT 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.
• 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 Survey

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INTRODUCTION:

Hi, (Ms/Mrs/Mr) (NAME), my name is (YOUR NAME). Would it be all right if asked you some questions about your care since you have been in (SITE OF CARE)? I am working on a study with (SITE OF CARE) to try to find out about the kind of care patients are getting, and I have some questions.

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.

Before we begin, I want to tell you that it is very important that I talk to you about your experience here so that we can make sure that patients get good care in the future. You don't have to answer my questions, though, if you don't want to, and you can stop at any time. Your doctors and nurses will still give you with the best care possible whether or not you decide to answer my questions. This interview will be confidential, that is, your name will never be linked to your answers, but your answers will be combined with the answers of other patients to give useful information that might be beneficial to patients in the future. Your answers will not be shared with your health care team.

Is it OK if I start?

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

NO....................2 (CAN I COME BACK ANOTHER TIME THAT WOULD BE BETTER FOR YOU?)

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INTRODUCTION: I would like to start with how you are feeling by finding out about symptoms you may have.

INTERVIEWER: FOR QUESTION 1, RECORD THE SYMPTOMS NOTED BY THE RESPONDENT. FOR EACH SYMPTOM, ASK QUESTIONS 1B- 1D. FILL IN RESPONSES TO QUESTIONS IN THE TABLE BELOW.

1A. In the past two days, which two symptoms have been the most bothersome for you?

1B. How often do you have (SYMPTOM)? Would you say...

1C. How severe is the (SYMPTOM)? Is it...

1D. How much does (SYMPTOM) distress or bother you?...

INTERVIEWER: IF RESPONDENT DID NOT MENTION PAIN AS A BOTHERSOME SYMPTOM, GO ON TO QUESTION 6. IF RESPONDENT DID MENTION PAIN, ASK:

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2. Have any doctors or nurses here talked with you, in a way that you can understand, about treating your pain?

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

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

3. Have any of the doctors or nurse here talked with you about how your pain will be treated if it gets worse?

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

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

4. Has there ever been any time that members of the health care team did not do everything they could to help control your pain?

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

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

5. Have you ever had to wait too long to get pain medication?

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

NO...............................2 (9)

5B. IF YES: how long was the wait? _______________

INTRODUCTION: The next questions are about the medical care that you are receiving at (SITE OF CARE).

6. Do you feel that the health care team should be doing more to keep you free from pain?

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

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

7. For symptoms other than pain, do you feel that the health care team should be doing more to keep you comfortable?

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

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

8. Do you want to be more involved in making decisions about your care?

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

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

9. Would you like members of the health care team to be more sensitive to your feelings?

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

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

10. Do you feel that the health care team should pay more attention to your wishes for medical care?

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

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

11. Do you feel that the members of the health care team are as helpful as possible in explaining your condition?

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

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

12. Do you feel that the health care team provides you with enough information so that there are no surprises or unplanned medical events in your illness?

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

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

13. Do you have confidence in your health care team?

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

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

14. Do you have specific wishes or have you made plans about the types of medical treatment you want or don't want?

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

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

15. Have you talked with your doctor about these wishes?

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

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

16. Have you and your doctor made plans to ensure that your wishes for medical treatment will be followed?

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

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

17. Has someone from the health care team talked with you about your religious or spiritual beliefs in a sensitive manner?

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

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

18. Has someone from the health care team really listened to you about your hopes, fears, and beliefs as much as you want?

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

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

19. Do you feel peaceful and ready to accept the future?

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

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

INTRODUCTION: Now I'd like to ask about your overall opinion of your care here.

20. If you were to describe your overall treatment here,

would you say it has been excellent, very good, good, fair, or poor?

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

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

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

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

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

21. Do you think that you have gotten the best medical care possible since you have been here?

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

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

21B. IF NO: Why not?

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

22. In the last week of life, how many “good days” have you had?

0 1 2 3 4 5 6 7

23. Do you now have a signed Durable Power of Attorney for Health Care naming someone who could make decisions

about medical treatment if ever you could not speak

for yourself?

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

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

24. Do you now have a signed Living Will giving

directions for the kind of medical treatment you

would want if ever you could not speak for yourself?

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

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

INTRODUCTION: The last questions I have are about your background. These questions are asked of each person in the study to show that the study includes people from varied backgrounds.

25. How many years of school have you completed?

___ Years

26. What race do you consider yourself?

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

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

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

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

27. Does your background include a Spanish or Hispanic heritage?

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

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

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

28. What was your 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..........................-