Surrogate
Hospice
AFTERDEATH
Interview
Dyspnea
Report And Ratings
Tool kit of Instruments
to Measure End
of Life Care
_______________ / /
STUDY ID DATE OF INTERVIEW
_____________________ _________________
INTERVIEWER ID SURROGATE ID
_____/_____/_____ _________________
PATIENT DOB PATIENT AGE
PATIENT DIAGNOSIS: ____________________________________________
Patient Admit Date to Hospice
Patient Discharge Date from Hospice__________________________________
Inpatient admit date _______________________________________________
Inpatient Discharge Date ___________________________________________
PATIENT MARITAL STATUS: ____________________________________
PATIENT GENDER: ______0 = FEMALE
1 = MALE
SURROGATE GENDER: _____0 = FEMALE
1 = MALE
SURROGATE NAME: ________________________________________(FIRST) (LAST)
INSTRUCTIONS FOR THE INTERVIEWER:
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.
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?
Do you think this is where (PATIENT) would have most wanted to die?
YES ......................................................1 (5)
NO .......................................................2
This instrument was drafted by Joan M Teno, M.D. Brown University, Box GB 219, Providence, RI 02912 from existing instruments and new questions formulated based on the work of the Tool kit of Instruments to Measure End of Life care. Feed back welcomed. Thanks. ______________________________________________________________
Oral Informed Consent for Telephone Survey
______________________________________________________________
INTRODUCTION:
Hello, is this (SURROGATE)? My name is (YOUR NAME) and I am working on a study on how Hospice Care of RI can improve medical care for dying patients and their family. I am sorry to hear of the loss of (PATIENT). 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.
* 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. Was (PATIENT) unconscious or in a coma all the time during the last week of (his/her) life?
YES.........................1 (SKIP TO 18)
NO..........................2
DON'T KNOW..................+
INTERVIEWER: FOR QUESTION 2, RECORD THE SYMPTOMS NOTED BY THE RESPONDENT. FOR EACH SYMPTOM, ASK QUESTIONS 2B- 2E. FILL IN RESPONSES TO QUESTIONS IN THE TABLE BELOW.
2A. What were the two most bothersome symptoms for (PATIENT)in the last week of life?
2B. How often did (PATIENT) have (SYMPTOM)? Would you say...
2C. How severe was the (SYMPTOM)? Was it...
2D. How much did (SYMPTOM) distress or bother (PATIENT)? Would you say...
2E. Did (PATIENT) tell you directly about (his/her)(SYMPTOM)?
| 2. BOTHERSOME SYMPTOMS |
2B. How often? |
2C. How severe? |
2D. HOW BOTHERSOME? |
2E. TELL DIRECTLY? |
| __Occasionally __About half of the time __Most of the time __All of the time |
__Not at all severe __Moderately severe __Extremely severe |
__Not at all __A little bit __Somewhat __Quite a bit __Very much |
___ Yes ___ No | |
| 3. BOTHERSOME SYMPTOMS |
3B. How often? |
3C. How severe? |
3D. HOW BOTHERSOME? |
3E. TELL DIRECTLY? |
| __Occasionally __About half of the time __Most of the time __All of the time |
__Not at all severe __Moderately severe __Extremely severe |
__Not at all __A little bit __Somewhat __Quite a bit __Very much |
___ Yes ___ No |
INTERVIEWER: SKIP 4, 6 AND 7 IF THE PATIENT MENTIONED SHORTNESS OF BREATH AS A BOTHERSOME SYMPTOM
YES.........................1 (ASK 5, 6)
No..........................2 (SKIP 5, 6)
_____
6. Did (PATIENT) tell you directly about (his/her) difficulty breathing?
Yes........................1
No.........................2
Not at all..................1
A little bit................2
Somewhat....................3
Quite a bit.................4
Very much...................5
INTERVIEWER: IF RESPONDENT REPORTED THAT THE PATIENT HAD TROUBLE BREATHING THEN DO THE FOLLOWING QUESTION. OTHERWISE GO TO QXT 18.
____________________________________________________________________
8. Did someone from the hospice team talk with you or (PATIENT) about how SHORTNESS OF BREATH would be treated?
YES........................1
NO.........................2
DON'T KNOW.................+
9. Did someone from the hospice team tell you or(PATIENT) about medicine for SHORTNESS OF BREATH in a way that you understood?
YES........................1
NO.........................2
10. Did someone from the hospice team tell you or (PATIENT) how SHORTNESS OF BREATH would be treated if it got worse?
YES........................1
NO.........................2
11. Was there any time that members of the hospice team at (HOSPICE)did not do everything they could to help control(his/her) SHORTNESS OF BREATH?
YES........................1
NO.........................2
12. Did you or (PATIENT) ever have to call someone on the hospice team because the SHORTNESS OF BREATH got so bad?
YES........................1
NO.........................2
17. How long from time when someone from hospice team was called did the (PATIENT) have to wait prior to getting the desired relief of his trouble breathing?
_______________ (minutes)
IF PATIENT WAS UNCONSCIOUS FOR LAST WEEK OF LIFE SKIP TO HERE
18. In (his/her) last days, was (PATIENT) at peace and ready to die?
YES........................1
NO.........................2
DON'T KNOW.................+
19. 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.................+
REPORTS AND RATINGS OF QUALITY OF CARE
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.
20. Do you feel that more should have been done by the hospice team to keep(PATIENT) free from pain?
YES........................1
NO.........................2
21. For symptoms other than pain, do you feel that more should have been done to keep (PATIENT) comfortable?
YES........................1
NO.........................2
22. Did you or (PATIENT) want to be more involved in making decisions about (PATIENT'S) care?
YES........................1
NO.........................2
NO DECISIONS MADE..........3
23. Would you have liked the hospice team to be more sensitive to your feelings?
YES........................1
NO.........................2
24. 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
25. Did you feel that the members of the hospice team were as helpful as possible in explaining (PATIENT'S) condition?
YES........................1
NO.........................2
26. 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
27. Did you have confidence in the team who took care of (PATIENT) during the final illness?
YES........................1
NO.........................2
The mission of Hospice Care of Rhode Island is to provide excellent medical care by the following:
Communicating with the patient and family so that they understand the patient's illness and treatment plans.
How well do you think the Hospice Care of Rhode Island did in achieving this goal? Choose a number on the scale 0 to 10, where 0 is the communication failed to meet that expectation and 10 is greatly exceeded that expectation.
_______
A patient's symptoms, such as pain or shortness of breath, are controlled to a degree that is acceptable to the patient.
How well do you think the hospice team did in meeting that expectation? Choose a number on the scale 0 to 10, where 0 is failed to meet that expectation and 10 is greatly exceeded that expectation.
_____________________________________________________________________________
that a patient dies with dignity – that is, the patient dies on his/her own terms.
How well do you think the hospice team helped (Patient's Name) die on his/her own terms? Choose a number on the scale 0 to 10, where 0 is failed to meet that expectation and 10 is greatly exceeded that expectation.
_____
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. YOU MAY COMPLETE THIS BASED ON THE CHART
31. How many years of school did (PATIENT) complete?
___ Years
DON'T KNOW +
32. What race did (PATIENT) consider (himself/herself)?
White......................1
Black......................2
Asian......................3
Something else.............4
33. Did (PATIENT'S) background include a Spanish or Hispanic heritage?
YES........................1
NO.........................2
DON'T KNOW.................+
34. 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....................-
35. What is your relationship to (PATIENT)?
Spouse.....................1
Child......................2
Parent.....................3
Sibling....................4
Some Other Relative........5
Friend.....................6
Partner....................7
Other......................+
36. What is your birth date?
/ /
37. How many years of school did you complete?
_________Years
INTRODUCTION: The last questions are about your overall opinion about (PATIENT'S)care.
37. Overall, what is your rating of Hospice Care of Rhode Island? Choose a number on the scale from 0 to 10, where 0 is worst possible medical care and 10 is the best possible medical care.
_______
38. Would you recommend (HOSPICE) for the care of a seriously ill friend or family member?
YES........................1
NO.........................2
38B. IF NO: Why Not?
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
39. Is there anything else that you would like to share with use about how we could improve the medical care provided by Hospice Care of Rhode Island?
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
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: ____:____