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. 
49.  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:
 Interviewer: READ THE FOLLOWING FOR 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.
Hello is this (SURROGATE)? My name is (YOUR NAME) and I am working on a Brown University study of the quality of medical care for dying patients in Rhode Island. I would like to speak with you for about 30 minutes about (PATIENT'S) medical care before (HIS/HER) death.  We hope that the results of this study will help a state wide coalition plan an intervention to improve the quality of medical care for dying persons and their loved ones. Because you will be answering questions about medical care of a person close to you, parts of the interview may be upsetting to you. Your participation is completely voluntary. You may choose to not to answer certain questions and you may stop the interview at any time. Participating or not choosing to participate will not affect any future services you receive regarding your medical care. All information will confidential to the extent of the law. If you have any questions, please feel free to call Dr. Joan M Teno, the Principle Investigator at 401-863-1560. Questions about the rights of a study participant should be directed to Brown University office of research administration, Alice A. Tangredi-Hannon or Dorinda Williams at 401-863-2777. 
Do you have any questions?  May I begin?
Yes	(CONTINUE the INTERVIEW)
NO	(THANK THEM FOR THEIR TIME AND STOP THE INTERVIEW)
 
________________________________________________________
	INTERVIEWER: NOTE START TIME HERE ____:_____
________________________________________________________
 
V1. Were you the person who was or would have been involved in decisions about the medical care of (PATIENT)?
	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.
		________________________________
				Address						vsurr4
		________________________________
		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?
        YES....................................................1	      dod01
	NO.....................................................2
        /    /    /   DATE
2. Was the (PATIENT) death expected? 
		     Exp01
	YES ....................................................1 
	NO .....................................................2
3. Where did (his/her) death take place?
	Hospital (ICU Unit) ....................................1	site01
	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
	Emergency Room..........................................8
	Other ..................................................9
	In Transit to Medical Facility .........................10
	DON'T KNOW .............................................+
                                                                 
4. Do you think that (ANSWER TO 3) was where (PATIENT) would
	 have most wanted to die?							
 		     pref10
	YES ....................................................1 (6)
	NO .....................................................2
______________________________________________________________
 
5. What would have allowed (PATIENT) to die at	(his/her) 	preferred place of death?                          
			                                                   pref11
	_______________________________________________
	_______________________________________________
	_______________________________________________
	_______________________________________________


 6. Was a hospice involved in the medical care of the (PATIENT)?
	
 hspice01
	YES ....................................................1 (6B)
	NO .....................................................2 (7)	
	______________________________________________________________
6B. What length of time was the patient enrolled in Hospice?
		________________	(CONVERT TO DAYS for DATE ENTRY) hspice01a
 7. Were you or (PATIENT) told about the option of hospice?    
	YES ....................................................1 
	NO .....................................................2 	
hspice02
			 
	_____________________________________________________________
 ________________________________________________________________
INTRODUCTION:  Now I would like to ask you some questions about (PATIENT'S) final illness.
________________________________________________________________________________________
8. 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..............................................+
 
9.	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 8 AND 9, GO ON TO QUESTION 12.  IF RESPONDENT ANSWERED 1 = YES FOR EITHER QUESTION, ASK:
_____________________________________________________________________
10. 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..............................................+
11.  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...............................................+
 

12.A.  Was there ANYTIME that, there was a problem with a doctor  talking to you or (PATIENT),in an easily understandable way, about the possibility that he/she would die from this illness?	
		                                                      prog20
	YES......................................................1
	NO.......................................................2
	DON'T KNOW...............................................+
12 B If Yes. What was the problem?
13. Was there a time during the final illness when the doctor did NOT tell you or (PATIENT) about choices for treatment, in an easily understandable way?                                                                                                     Acp21                                                                                                     
	YES......................................................1 
	NO.......................................................2
	DON'T KNOW...............................................+
14.  Did (PATIENT) have specific wishes or plans about the types 
  of medical treatment (he/she) wanted, while dying?              acp22
	YES......................................................1
	NO.......................................................2 (17)
	DON'T KNOW...............................................+ (17)
15. Did you or (PATIENT) talk with a doctor about these wishes? 
	YES......................................................1		   acp23 
	NO.......................................................2 (17)
	DON'T KNOW...............................................+ (17)
16. Did you or (PATIENT) and (PATIENT'S) doctor make a plan that ensured that (PATIENT'S) wishes for medical treatment were followed?                                               
	YES......................................................1		    acp24
	NO.......................................................2      
INTRODUCTION:  The next set of questions is about (PATIENT'S) last week of life.
_______________________________________________________________________________________________________
17. 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?
	Extend Life as much as possible..........................1	  course25
	Relieve Pain or discomfort as much as possible...........2
	DON'T KNOW...............................................+ (19)
18. 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...............................................+
19. Was (PATIENT) unconscious or in a coma all the time during the last week of (his/her) life? 
	YES......................................................1  (34)	  coma27
	NO.......................................................2
	DON'T KNOW...............................................+ (34)
20. Could (PATIENT) communicate in some way during the last week of life?
commun28
	YES......................................................1	
	NO.......................................................2	(34)    

 

21. During the last week of life, how difficult was it for (PATIENT) 
     to tolerate physical symptoms? Was it____
pyssym31
	very difficult...........................................1	
	somewhat difficult.......................................2
	not very difficult.......................................3
	not at all difficult.....................................4
22. During the last week of life, 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.
____________________________________________________________________
23. During the last week of life, did (PATIENT) have pain?
pain62
	YES.....................................................1
        No  ____________________________________________________2 (28A)

24. 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
25. How severe was the pain? Was it...
pain64
	not at all severe.......................................1	
	moderately severe.......................................2
	extremely severe........................................3
26. 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
27. Did (PATIENT) tell you directly about (his/her) pain?
pain66
	YES.....................................................1	
	NO......................................................2
 
INTERVIEWER:  FOR QUESTION 28 AND 29, RECORD THE SYMPTOMS NOTED BY THE RESPONDEN. FOR EACH SYMPTOM, ASK QUESTIONS 28B- 28E AND 29B-29E.  FILL IN RESPONSES TO QUESTIONS IN THE TABLE BELOW.
 28. If (PATIENT) had PAIN in the last week of life: 
     Besides pain, what was the OTHER MOST bothersome symptom for (PATIENT) in the last week of life?
28A. What were the two most bothersome symptoms for (PATIENT)in the last week of life?
28B. How often did (PATIENT) have (SYMPTOM)? Would you say...
28C. How severe was the (SYMPTOM)? Was it...
28D. How much did (SYMPTOM) distress or bother (PATIENT)? Would you say...
28E.  Did (PATIENT) tell you directly about (his/her)(SYMPTOM)?
28.  
BOTHERSOME SYMPTOMS	28B.
HOW OFTEN?	        28C.
HOW SEVERE? 	        28D.  
HOW BOTHERSOME?	        28E. 
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
29.  
BOTHERSOME SYMPTOMS	29B.
HOW OFTEN?	        29C.
HOW SEVERE? 	        29D.  
HOW BOTHERSOME?	        29E. 
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:  IF RESPONDENT REPORTED THAT THE PATIENT HAD PAIN THEN DO THE FOLLOWING QUESTION. OTHERWISE GO TO QXT #34 
____________________________________________________________________
30. Did A doctor or nurse talk with you or (PATIENT) about how PAIN would be treated in the last week of life? 
 
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+
31. In the last week of life, did A doctor or nurse tell you or (PATIENT) about 	medicine for PAIN in a way that you understood?
	YES.....................................................1	
	NO......................................................2
32. In the last week of life, did A doctor or nurse tell you or (PATIENT) how PAIN would be treated if it got worse?
	YES.....................................................1	
	NO......................................................2
33. Was there anytime in the last week of life that the doctors or nurses did NOT do everything they could to help control his/her pain?
	YES.....................................................1	
	NO......................................................2 

IF PATIENT WAS UNCONSCIOUS FOR LAST WEEK OF LIFE SKIP TO HERE
34. In (his/her) last days, was (PATIENT) at peace and ready to die?
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+
 
35. During the last week of life, did the doctors (AND??) or nurses really listen to you and (PATIENT), about your hopes, fears, and beliefs as much as you wanted? 
    
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+
36. 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..............................................+
37. During the last week of life, did the doctors or nurses suggest that you and/or (PATIENT) see a religious or spiritual leader?
relig90
	YES.....................................................1	
	NO......................................................2 (38)      
	DON'T KNOW..............................................+ (38)
37a. IF YES, Was it done at the right time?
relig90b
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+

INTRODUCTION: The next section is about your feelings concerning (PATIENT'S) final illness and (his/her) death.
38. 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
 
39. 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
39a. Is there something so important to your life that gives it meaning?
	Yes.....................................................1
	No......................................................2
39b.  Now (SURROGATE NAME), on a scale of 1-5 where 5 is life full of meaning and 1 your life has no meaning, how much or to what degree do you feel that your life has meaning or purpose? 

	____
39c. Have either the degree of meaning in your life or things that you find meaningful changed since (PATIENT'S) death?
	If yes, how?







INTRODUCTION:  Now I am going to ask you some questions about your feelings concerning (PATIENT'S) medical care during (his/her) final illness. Please answer yes or no to the following questions.
40. At any time in the last month of life, do you feel that MORE 
     should have been done by the doctors and nurses to keep  
     (PATIENT) free from pain? 
sat100
	YES.....................................................1	
	NO......................................................2
41. 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
42. At any time in the last month of life, did you or (PATIENT)want to be MORE involved in making decisions about (PATIENT'S) care?
    
sat102
	YES.....................................................1	
	NO......................................................2
	NO DECISIONS MADE.......................................3
43. Do you feel that you or (PATIENT) would have made different decisions about (his/her) care if the doctors had given you MORE information?
sat103
	YES.....................................................1	
	NO......................................................2
 44. Would you have liked the doctors or nurses to be MORE sensitive to your feelings?
	sat104
	YES.....................................................1	
	NO......................................................2
45. Did you feel that the doctors should have paid MORE attention        to your wishes for (PATIENT'S) care in the last month of life?        
sat105
	YES.....................................................1	
	NO......................................................2
46. At any time, did you feel that the nurses were NOT as helpful as 
possible in explaining (PATIENT'S) condition in the last month of life? 
sat106
	YES.....................................................1	
	NO......................................................2
47. At any time, do you feel that the doctors were NOT as helpful as 
possible in explaining (PATIENT'S) condition in the last month of life?
sat107
	YES.....................................................1	
	NO......................................................2
48. At any time, do you feel that (PATIENT'S) doctor DID NOT provide you with enough information, so 	that there were no surprises or unplanned medical events in the last month of life?
sat108
	YES.....................................................1	
	NO......................................................2
49. During the last month of life, was there any time, when it was not clear, which doctor was in charge of (PATIENT'S) care?
sat109
	YES.....................................................1	
	NO......................................................2
50. Did you have confidence in the doctors who took care of (PATIENT) in the last month of life?
sat110
	YES.....................................................1	
	NO......................................................2
 
51. IF NO. Could you please explain why? 

 

52. During (PATIENT'S) final illness, was there a time when the patient did not have health insurance?
	YES.....................................................1	
	NO......................................................2 (53) 		insur01
	IF YES. How did that impact on the patient care?
	____________________________________________________
	____________________________________________________
	_____________________________________________________
52. What type of health insurance did (PATIENT'S NAME) have?
        0_________________None
        1_________________Medicare
        2_________________Private Insurance
        3_________________Other (Specify)
53A. Were there any problems with the health insurance during or after (PATIENT'S) final illness?
Insur02
	YES.....................................................1	
	NO......................................................2 (54)
53B. IF YES, What were they?                            



	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
	_______________________________________________________________
INTRODUCTION: In the next set of questions, I will ask you whether health care providers, throughout the (PATIENT'S) illness, provided medical care consistent with experts opinion. 
54 A. Was (PATIENT) hospitalized in (HIS/HER) last month of life?
	YES.....................................................1
	NO......................................................2
	What was the name of that hospital?
     
     How many days was (he/she) hospitalized in the last month of life? ____________ IF ALL THE DAYS, SKIP 54B and 54C.
54 B. Was (PATIENT) in a nursing home in the last month of life?
	YES.....................................................1
	NO......................................................2
	What was the name of that nursing home?
     How many days was (PATIENT) in the nursing home in the last month of life? ____________. IF ALL MONTH, SKIP 54C 
54 C. Did nurses come to the (PATIENT'S) home or where (he/she) was  staying, in the last month of life? 
	 
	YES.....................................................1
	NO......................................................2
	What was the name of that nursing agency?

54 D. (Surrogate Name.) In the (PATIENT'S) last week of life, how much contact did YOU have with him/her? Would you say?
     Daily______________________
     5-6 days___________________
     3-4 days___________________
     1-2 days___________________
     None_______________________
     
 
     
  
 
In the next set of questions, I am going to read some statements to you about an expert's opinion on end-of-life care, and then ask whether that goal was met by the health care providers involved in the medical care of (PATIENT) in the last month of life. 
INTERVIEWER: FOR EACH YES ANSWER TO 54 A-C, ASK THE RESPONDENT TO RANK THE QUALITY OF CARE THAT THE PATIENT RECEIVED, BY THAT HEALTH CARE PROVIDER
55. Medical Experts state that the health care team should --
Communicate with the patient and family so that they understand the patient's illness and treatment plans.
How well do you think that (NAME OF HEALTH CARE PROVIDER/ INSTITUTION) did in achieving this goal?) Choose a number on the scale of 0 to 10, where 0 is the communication failed to meet that expectation and 10 is greatly exceeded that expectation
	A.			_______
	
	B.			_______
	C.			_______
56.  Additionally, medical experts state that the 
 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 (HEALTH CARE PROVIDER/INSTITUTION) 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.
	A.			_______
	
	B.			_______
	C.			_______
	________
---_____________________________________________________________________
57.  Finally, medical experts state
That a patient dies with dignity - that is, the patient dies on his/her own terms.
 How well do you think the (HEALTH CARE PROVIDER/INSTITUTION) 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. 

	A.			_______
	
	B.			_______
	C.			_______
_________________________________________________________
58. For each location where (PATIENT) was in the last month of life, how would you describe the overall medical treatment of (PATIENT) and (his/her loved one(s)? Would you say it was excellent, very good, good, fair or poor?
   
        Excellent____________________________________________1 
        Very Good____________________________________________2
        Good_________________________________________________3
        Fair_________________________________________________4
        Poor_________________________________________________5
A._______________________________________________________________
B._______________________________________________________________
C._______________________________________________________________

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.
59. 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..............................................+
60. Was (he/she) living alone?
alone114
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+
61. How many years of school did (PATIENT) complete?
educ115
	___ YEARS
	DON'T KNOW..............................................+
62. What race did (PATIENT) consider (himself/herself)?  White, Black, Asian, or something else?
race116
	White...................................................1	
	Black...................................................2
	Asian...................................................3
	Something else..........................................4
63. Did (PATIENT'S) background include Spanish or Hispanic               heritage?
hisp117
	YES.....................................................1	
	NO......................................................2
	DON'T KNOW..............................................+
64. 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..............................................+
65. 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.
66. What is your relationship to (PATIENT)?	
sur120
	SPOUSE..................................................1
	CHILD...................................................2
	PARENT..................................................3
	SIBLING.................................................4
	SOME OTHER RELATIVE.....................................5
	FRIEND..................................................6
	PARTNER.................................................7
	OTHER...................................................+
67. What is your birth date?
sur121
	/    /    /    	
68. How many years of school did you complete?
sur122
		_____  YEARS	




 69. Is there anything else that you would like to share with me about how the medical care could have been improved for (PATIENT)?
 
sat125b
	___________________________________________________________
	___________________________________________________________
	___________________________________________________________
	___________________________________________________________
70. How would you rate your health? Would you say…
	Excellent...............................................1
	Very good...............................................2
	Good....................................................3
	Fair....................................................4
	Poor....................................................5
71. For a small number of persons, we are contacting to do a more open- ended interview. This interview would be scheduled in the next month at a time that is convenient for you. Would you be willing to participate in this study?
1.    YES
2.    NO
INTERVIEWER: I really appreciate the time you that you have spent with me, and the effort you made to respond to the questions.  Do you have any questions?
INTERVIEWER:  NOTE END TIME NOW:  ____:____
 
 	INTERVIEWER:
	
	1.	Rate the quality of data:	 1			 2		 3	int12
											Good		Fair			Poor
	2.	If other than 1, please comment:                       
		
		                                                       
		                                                       
		                                                       
		                                                       
	                                                              
	                                                               
	 
	 


                    INTERVIEWER NOTES