XT. End-of-Life Interview

Up to survey overview Start of XT. End-of-Life Interview   XT104 IWER:note sex of decedent (ask if unsure) view item details » IWER:NOTE SEX OF DECEDENT (ASK IF UNSURE) 1 Male 2 Female   XT001 [{Name of the deceased}] has participated in the SHARE study before [his/her] death. [His/Her] contribution was very valuable. We would find it extremely helpful to havesome information about the final year of [{Name of the deceased}]'s life. All the information collected is strictly confidential, and will be held anonymously. view item details » [{NAME OF THE DECEASED}] HAS PARTICIPATED IN THE SHARE STUDY BEFORE [HIS/HER] DEATH. [HIS/HER] CONTRIBUTION WAS VERY VALUABLE. WE WOULD FIND IT EXTREMELY HELPFUL TO HAVESOME INFORMATION ABOUT THE FINAL YEAR OF [{NAME OF THE DECEASED}]'S LIFE. ALL THE INFORMATION COLLECTED IS STRICTLY CONFIDENTIAL, AND WILL BE HELD ANONYMOUSLY. 1 Continue   XT006 IWER:Code proxy respondent's sex. view item details » IWER:CODE PROXY RESPONDENT'S SEX. 1 Male 2 Female   XT002 Before we start ask ing questions about the last year of life of [{Name of the deceased}], would you please tell me what was your relationship to the deceased? view item details » BEFORE WE START ASK ING QUESTIONS ABOUT THE LAST YEAR OF LIFE OF [{NAME OF THE DECEASED}], WOULD YOU PLEASE TELL ME WHAT WAS YOUR RELATIONSHIP TO THE DECEASED? 1 Husband or wife or partner 2 Son or Daughter 3 Son- or Daughter-in-law 4 Son or Daughter of husband, wife or partner 5 Grandchild 6 Sibling 7 Other relative (specify) 8 Other non-relative (specify)   If Before we start ask ing questions about the last year of life of [{Name of the deceased}], would you please tell me what was your relationship to the deceased? view item details » = A7 »         XT003 IWER:Specify other relative view item details » IWER:SPECIFY OTHER RELATIVE     If Before we start ask ing questions about the last year of life of [{Name of the deceased}], would you please tell me what was your relationship to the deceased? view item details » = A8 »         XT004 IWER:Specify other non-relative view item details » IWER:SPECIFY OTHER NON-RELATIVE     XT005 During the last twelve months of [his/her] life, how often did you have contact with [{Name of the deceased}], either personally, by phone, mail, email, or any other electronicmeans? view item details » DURING THE LAST TWELVE MONTHS OF [HIS/HER] LIFE, HOW OFTEN DID YOU HAVE CONTACT WITH [{NAME OF THE DECEASED}], EITHER PERSONALLY, BY PHONE, MAIL, EMAIL, OR ANY OTHER ELECTRONICMEANS? 1 Daily 2 Several times a week 3 About once a week 4 About every two weeks 5 About once a month 6 Less than once a month 7 Never   If Before we start ask ing questions about the last year of life of [{Name of the deceased}], would you please tell me what was your relationship to the deceased? view item details » != A1 Husband or wife or partner 2 Son or Daughter 3 Son- or Daughter-in-law 4 Son or Daughter of husband, wife or partner 5 Grandchild 6 Sibling 7 Other relative (specify) 8 Other non-relative (specify)  »         XT007 Can you tell me your year of birth? view item details » CAN YOU TELL ME YOUR YEAR OF BIRTH? 1900..2001     XT101 Let us now talk about the deceased. Just to mak e sure that we have the correct information about [{Name of the deceased}], can I just confirm that [he/she] was born in[{Month and Year birth of deceased}]? view item details » LET US NOW TALK ABOUT THE DECEASED. JUST TO MAK E SURE THAT WE HAVE THE CORRECT INFORMATION ABOUT [{NAME OF THE DECEASED}], CAN I JUST CONFIRM THAT [HE/SHE] WAS BORN IN[{MONTH AND YEAR BIRTH OF DECEASED}]? 1 Yes 5 No   If Let us now talk about the deceased. Just to mak e sure that we have the correct information about [{Name of the deceased}], can I just confirm that [he/she] was born in[{Month and Year birth of deceased}]? view item details » = A5 »         XT102 In which month and year was [{Name of the deceased}] born?MONTH:YEAR: view item details » IN WHICH MONTH AND YEAR WAS [{NAME OF THE DECEASED}] BORN?MONTH:YEAR: 1 January 2 February 3 March 4 April 5 May 6 June 7 July 8 August 9 September 10 October 11 November 12 December       XT103 In which month and year were [{Name of the deceased}] born?MONTH: ^XT102_DecMonthBirthYEAR: view item details » IN WHICH MONTH AND YEAR WERE [{NAME OF THE DECEASED}] BORN?MONTH: ______YEAR: 1900..2010     XT008 We would lik e to k now more about the circumstances of [{Name of the deceased}] 's death. In what month and year did [he/she] pass away?MONTH:YEAR: view item details » WE WOULD LIK E TO K NOW MORE ABOUT THE CIRCUMSTANCES OF [{NAME OF THE DECEASED}] 'S DEATH. IN WHAT MONTH AND YEAR DID [HE/SHE] PASS AWAY?MONTH:YEAR: 1 January 2 February 3 March 4 April 5 May 6 June 7 July 8 August 9 September 10 October 11 November 12 December   XT009 In what month and YEAR did [he/she] pass away?MONTH: ^XT008_MonthDiedYEAR: view item details » IN WHAT MONTH AND YEAR DID [HE/SHE] PASS AWAY?MONTH: ______YEAR: 1. 2006 2. 2007 3. 2008 4. 2009 5. 2010 6. 2011 7. 2012 8. 2013 9. 2014 10. 2015 11. 2016 12. 2017   XT010 How old was [{Name of the deceased}] when [he/she] passed away? view item details » HOW OLD WAS [{NAME OF THE DECEASED}] WHEN [HE/SHE] PASSED AWAY? 20..120   XT109 Was [{Name of the deceased}] married at the time of [his/her] death? view item details » WAS [{NAME OF THE DECEASED}] MARRIED AT THE TIME OF [HIS/HER] DEATH? 1 Yes 5 No   XT039 How many children did [ {Name of the deceased}] have that were still alive at the time of [ his/ her] death?Please count all natural children, fostered, adopted and stepchildren view item details » NUMBER OF CHILDREN THE DECEASED HAD AT THE END 0..999   XT011 What was the main cause of [his/her] death? view item details » WHAT WAS THE MAIN CAUSE OF [HIS/HER] DEATH? 1 Cancer 2 A heart attack 3 A stroke 4 Other cardiovascular related illness such as heart failure, arrhythmia 5 Respiratory disease 6 Disease of the digestive system such as gastrointestinal ulcer, inflammatory bowel disease 7 Severe infectious disease such as pneumonia, septicemia or flu 8 Accident 97 Other (Please specify)   If What was the main cause of [his/her] death? view item details » = A97 »         XT012 IWER:Specify other cause of death view item details » IWER:SPECIFY OTHER CAUSE OF DEATH     If What was the main cause of [his/her] death? view item details » != A8 »         XT013 How long had [{Name of the deceased}] been ill before [he/she] died? view item details » HOW LONG HAD [{NAME OF THE DECEASED}] BEEN ILL BEFORE [HE/SHE] DIED? 1 Less than one month 2 One month or more but less than 6 months 3 6 months or more but less than a year 4 One year or more       XT014 Did [he/she] die ... IWER: {ReadOut} PLACE OF DYING view item details » DID [HE/SHE] DIE ... IWER: {READOUT} PLACE OF DYING 1. at______ own home 2. at another person's home 3. in a hospital 4. in a nursing home 5. in a residential home, sheltered housing, or old people's home 6. in a hospice 7. in transit to a medical facility 97. at some other place       If Did [he/she] die ... IWER: {ReadOut} PLACE OF DYING view item details » = A3. in a hospital »             XT750 Was that in the Intensive Care Unit? IN INTENSIVE CARE UNIT view item details » WAS THAT IN THE INTENSIVE CARE UNIT? IN INTENSIVE CARE UNIT 1. Yes 5. No           If Was that in the Intensive Care Unit? IN INTENSIVE CARE UNIT view item details » = A5. No »                 XT751 Was that in a palliative care or inpatient hospice unit? view item details » WAS THAT IN A PALLIATIVE CARE OR INPATIENT HOSPICE UNIT? PALLIATIVE CARE OR INPATIENT HOSPICE 1. Yes 5. No           Else             If Did [he/she] die ... IWER: {ReadOut} PLACE OF DYING view item details » = A5. in a residential home, sheltered housing, or old people's home »                 XT767 Was there at least one (certified) nurse in the assistance or supervision staff? At LEAST A NURSE view item details » WAS THERE AT LEAST ONE (CERTIFIED) NURSE IN THE ASSISTANCE OR SUPERVISION STAFF? AT LEAST A NURSE 1. Yes 5. No               XT753 Was the residential housing provided by hospice? RESIDENTIAL PROVIDED BY HOSPICE view item details » WAS THE RESIDENTIAL HOUSING PROVIDED BY HOSPICE? RESIDENTIAL PROVIDED BY HOSPICE 1. Yes 5. No           XT615 In the last year before [he/she] died, on how many different occasions did [{Name of the deceased}] stay in a hospital, hospice or nursing home? view item details » IN THE LAST YEAR BEFORE [HE/SHE] DIED, ON HOW MANY DIFFERENT OCCASIONS DID [{NAME OF THE DECEASED}] STAY IN A HOSPITAL, HOSPICE OR NURSING HOME? 0..999       If In the last year before [he/she] died, on how many different occasions did [{Name of the deceased}] stay in a hospital, hospice or nursing home? view item details » > 0 »             XT016 During the last year of [his/her] life, for how long altogether did [{Name of the deceased}] stay at hospitals, hospices or nursing homes? view item details » DURING THE LAST YEAR OF [HIS/HER] LIFE, FOR HOW LONG ALTOGETHER DID [{NAME OF THE DECEASED}] STAY AT HOSPITALS, HOSPICES OR NURSING HOMES? 1 Less than one week 2 One week or more but less than one month 3 One month or more but less than 3 months 4 3 months or more but less than 6 months 5 6 months or more but less than a year 6 A full year         XT756 The next couple of questions are about the care [{Name of the deceased}] received in the last month of [his/her] life. Please answer these questions based on your experience and the deceased s experience while [he/she] was receiving care. Some o view item details » THE NEXT COUPLE OF QUESTIONS ARE ABOUT THE CARE [{NAME OF THE DECEASED}] RECEIVED IN THE LAST MONTH OF [HIS/HER] LIFE. PLEASE ANSWER THESE QUESTIONS BASED ON YOUR EXPERIENCE AND THE DECEASED S EXPERIENCE WHILE [HE/SHE] WAS RECEIVING CARE. SOME OF THE QUESTIONS ASK ABOUT THE STAFF. BY STAFF, WE MEAN DOCTORS, NURSES, SOCIAL WORKERS, CHAPLAINS, NURSING ASSISTANTS, THERAPISTS, AND OTHER PERSONNEL. CARE INTRO 1. Continue       If NOT ((((XT014 = A6) or (XT751 = A1)) or (XT752 = A1)) or (XT753 = A1))             XT757 In the last four weeks of [his/her] life, did [{Name of the deceased}] have any hospice or palliative care? view item details » IN THE LAST FOUR WEEKS OF [HIS/HER] LIFE, DID [{NAME OF THE DECEASED}] HAVE ANY HOSPICE OR PALLIATIVE CARE? IWER: BY HOSPICE CARE WE MEAN PALLIATIVE CARE FOR TERMINALLY ILL OR SERIOUSLY ILL PATIENTS, DELIVERED AT HOME OR IN AN INSTITUTION. ACCORDING TO THE WHO DEFINITION, "PALLIATIVE CARE IS AN APPROACH THAT IMPROVES THE QUALITY OF LIFE OF PATIENTS AND THEIR FAMILIES FACING THE PROBLEM ASSOCIATED WITH LIFE-THREATENING ILLNESS, THROUGH THE PREVENTION AND RELIEF OF SUFFERING BY MEANS OF EARLY IDENTIFICATION AND IMPECCABLE ASSESSMENT AND TREATMENT OF PAIN AND OTHER PROBLEMS, PHYSICAL, PSYCHOSOCIAL AND SPIRITUAL HOSPICE OR PALLIATIVE CARE 1. Yes 5. No           If In the last four weeks of [his/her] life, did [{Name of the deceased}] have any hospice or palliative care? view item details » = A5. No »                 XT754 What was the reason that [he/she] did not have hospice or palliative care? view item details » WHAT WAS THE REASON THAT [HE/SHE] DID NOT HAVE HOSPICE OR PALLIATIVE CARE? IWER: {READOUT} REASON NOT HOSPICE 1. Was not needed or wanted 2. Was needed or wanted but not available 3. Was needed or wanted but too expensive           XT758 In [his/her] last month of life, did [{Name of the deceased}] have pain or take medicine for pain? MEDICINE FOR PAIN view item details » IN [HIS/HER] LAST MONTH OF LIFE, DID [{NAME OF THE DECEASED}] HAVE PAIN OR TAKE MEDICINE FOR PAIN? MEDICINE FOR PAIN 1. Yes 5. No       If In [his/her] last month of life, did [{Name of the deceased}] have pain or take medicine for pain? MEDICINE FOR PAIN view item details » = A1. Yes »             XT759 Did the deceased receive too much, too little, or just the right amount of medication for [his/her] pain? MEDICATION AMOUNT view item details » DID THE DECEASED RECEIVE TOO MUCH, TOO LITTLE, OR JUST THE RIGHT AMOUNT OF MEDICATION FOR [HIS/HER] PAIN? MEDICATION AMOUNT 1. Too much 2. Too little 3. Right amount         XT760 In [his/her] last month of life, did [{Name of the deceased}] have trouble breathing? TROUBLE BREATHING view item details » IN [HIS/HER] LAST MONTH OF LIFE, DID [{NAME OF THE DECEASED}] HAVE TROUBLE BREATHING? TROUBLE BREATHING 1. Yes 5. No       If In [his/her] last month of life, did [{Name of the deceased}] have trouble breathing? TROUBLE BREATHING view item details » = A1. Yes »             XT761 How much help in dealing with [his/her] breathing did the deceased receive - too little, or just the right amount? HOW MUCH HELP BREATHING view item details » HOW MUCH HELP IN DEALING WITH [HIS/HER] BREATHING DID THE DECEASED RECEIVE - TOO LITTLE, OR JUST THE RIGHT AMOUNT? HOW MUCH HELP BREATHING 1. Too little 2. Right amount         XT762 In [his/her] last month of life, did [{Name of the deceased}] have any feelings of anxiety or sadness? ANXIETY SADNESS view item details » IN [HIS/HER] LAST MONTH OF LIFE, DID [{NAME OF THE DECEASED}] HAVE ANY FEELINGS OF ANXIETY OR SADNESS? ANXIETY SADNESS 1. Yes 5. No       If In [his/her] last month of life, did [{Name of the deceased}] have any feelings of anxiety or sadness? ANXIETY SADNESS view item details » = A1. Yes »             XT763 How much help in dealing with these feelings did the deceased receive - too little, or just the right amount? HOW MUCH HELP ANXIETY OR SADNESS view item details » HOW MUCH HELP IN DEALING WITH THESE FEELINGS DID THE DECEASED RECEIVE - TOO LITTLE, OR JUST THE RIGHT AMOUNT? HOW MUCH HELP ANXIETY OR SADNESS 1. Too little 2. Right amount         XT764 How often were the deceased's personal care needs - such as bathing, dressing, and changing bedding - taken care of as well as they should have been? view item details » HOW OFTEN WERE THE DECEASED'S PERSONAL CARE NEEDS - SUCH AS BATHING, DRESSING, AND CHANGING BEDDING - TAKEN CARE OF AS WELL AS THEY SHOULD HAVE BEEN? IWER: {READOUT}. PERSONAL CARE NEEDS MET 1. Always 2. Usually 3. Sometimes 4. Never 5. Help was not needed or wanted for personal care       XT765 During [his/her] last month of life, how often overall was the staff who took care of [him/her] kind, caring, and respectful? view item details » DURING [HIS/HER] LAST MONTH OF LIFE, HOW OFTEN OVERALL WAS THE STAFF WHO TOOK CARE OF [HIM/HER] KIND, CARING, AND RESPECTFUL? IWER: {READOUT}. STAFF CARING AND RESPECTFULL 1. Always 2. Usually 3. Sometimes 4. Never       XT766 Overall, how would you rate the care the deceased received in [his/her] last month of life? IWER: view item details » OVERALL, HOW WOULD YOU RATE THE CARE THE DECEASED RECEIVED IN [HIS/HER] LAST MONTH OF LIFE? IWER: {READOUT}. RATE CARE 1. Excellent 2. Very good 3. Good 4. Fair 5. Poor     XT017 We would now like to ask you some questions about any expenses which [{Name of the deceased}] incurred as a result of the medical care [he/she] received in the last 12 months before [he/she] died. view item details » WE WOULD NOW LIKE TO ASK YOU SOME QUESTIONS ABOUT ANY EXPENSES WHICH [{NAME OF THE DECEASED}] INCURRED AS A RESULT OF THE MEDICAL CARE [HE/SHE] RECEIVED IN THE LAST 12 MONTHS BEFORE [HE/SHE] DIED. FOR EACH OF THE TYPES OF CARE I WILL NOW LIST, PLEASE INDICATE WHETHER [{NAME OF THE DECEASED}] RECEIVED THE CARE AND, IF SO, GIVE YOUR BEST ESTIMATE OF THE COSTS INCURRED FROM THAT CARE. PLEASE INCLUDE ONLY COSTS NOT PAID OR REIMBURSED BY THE HEALTH INSURANCE OR THE EMPLOYER. INTRODUCTION EXPENSES MEDICAL CARE 1. Continue   XT018 Did [ {Name of the deceased}] have any [ care from a general practitioner/ care from specialist physicians/ hospital stays/ care in a nursing home/ hospice stays/ medication/ aids and appliances/ help with personal care due to disability/ help with domestic tasks due to disability] (in the last 12 months of [ his/ her] life)? view item details » HAD TYPE OF MEDICAL CARE IN THE LAST TWELVE MONTHS 1 Yes 5 No   If Did [ {Name of the deceased}] have any [ care from a general practitioner/ care from specialist physicians/ hospital stays/ care in a nursing home/ hospice stays/ medication/ aids and appliances/ help with personal care due to disability/ help with domestic tasks due to disability] (in the last 12 months of [ his/ her] life)? view item details » = A1 Yes 5 No  »         XT119 About how much did [ he/ she] pay out of pocket for [ care from a general practitioner/ care from specialistphysicians/ hospital stays/ care in a nursing home/ hospice stays/ medication/ aids and appliances/ help with personal care due to disability/ help with domestic tasks due to disability] (in the last 12 months of [ his/ her] life)? [ By out of pocket we mean that the costs were not covered or reimbursed by the health insurance/national health system/third party.] view item details » COSTS OF TYPE OF MEDICAL CARE IN THE LAST TWELVE MONTHS 0..100000000000000000     XT105 We would like to k now more about the difficulties people have in their last year of life because of a physical, mental, emotional or memory problems. During the last year of[his/her] life, did [{Name of the deceased}] have any difficulty remembering where [he/she] was? Please name only difficulties that lasted at least three months? view item details » WE WOULD LIKE TO K NOW MORE ABOUT THE DIFFICULTIES PEOPLE HAVE IN THEIR LAST YEAR OF LIFE BECAUSE OF A PHYSICAL, MENTAL, EMOTIONAL OR MEMORY PROBLEMS. DURING THE LAST YEAR OF[HIS/HER] LIFE, DID [{NAME OF THE DECEASED}] HAVE ANY DIFFICULTY REMEMBERING WHERE [HE/SHE] WAS? PLEASE NAME ONLY DIFFICULTIES THAT LASTED AT LEAST THREE MONTHS? 1 Yes 5 No   XT106 During the last year of [his/her] life, did [{Name of the deceased}] have any difficulty remembering what year it was? (Please name only difficulties that lasted at least three months?) view item details » DURING THE LAST YEAR OF [HIS/HER] LIFE, DID [{NAME OF THE DECEASED}] HAVE ANY DIFFICULTY REMEMBERING WHAT YEAR IT WAS? (PLEASE NAME ONLY DIFFICULTIES THAT LASTED AT LEAST THREE MONTHS?) 1 Yes 5 No   XT107 During the last year of [his/her] life, did [{Name of the deceased}] have any difficulty recognizing family members or good friends? (Please name only difficulties that lasted at least three months?) view item details » DURING THE LAST YEAR OF [HIS/HER] LIFE, DID [{NAME OF THE DECEASED}] HAVE ANY DIFFICULTY RECOGNIZING FAMILY MEMBERS OR GOOD FRIENDS? (PLEASE NAME ONLY DIFFICULTIES THAT LASTED AT LEAST THREE MONTHS?) 1 Yes 5 No   XT020 Because of a physical, mental, emotional or memory problem, did [{Name of the deceased}] have difficulty doing any of the following activities during the last twelve months of [his/her] life? Please name only difficulties that lasted at least three view item details » BECAUSE OF A PHYSICAL, MENTAL, EMOTIONAL OR MEMORY PROBLEM, DID [{NAME OF THE DECEASED}] HAVE DIFFICULTY DOING ANY OF THE FOLLOWING ACTIVITIES DURING THE LAST TWELVE MONTHS OF [HIS/HER] LIFE? PLEASE NAME ONLY DIFFICULTIES THAT LASTED AT LEAST THREE MONTHS. IWER: {READOUT}. {CODEALL} INTRODUCTION DIFFICULTIES DOING ACTIVITIES 1. Dressing, including putting on shoes and socks 2. Walking across a room 3. Bathing or showering 4. Eating, such as cutting up your food 5. Getting in or out of bed 6. Using the toilet, including getting up or down 96. None of these   If Because of a physical, mental, emotional or memory problem, did [{Name of the deceased}] have difficulty doing any of the following activities during the last twelve months of [his/her] life? Please name only difficulties that lasted at least three view item details » > 0 »         XT022 Think ing about the activities that the deceased had problems with during the last twelve months of [his/her] life, has anyone helped regularly with these activities? view item details » THINK ING ABOUT THE ACTIVITIES THAT THE DECEASED HAD PROBLEMS WITH DURING THE LAST TWELVE MONTHS OF [HIS/HER] LIFE, HAS ANYONE HELPED REGULARLY WITH THESE ACTIVITIES? 1 Yes 5 No       If Think ing about the activities that the deceased had problems with during the last twelve months of [his/her] life, has anyone helped regularly with these activities? view item details » = A1 Yes 5 No  »             XT023 Who, including yourself, has helped mainly with these activities? Please name at most three persons. view item details » WHO, INCLUDING YOURSELF, HAS HELPED MAINLY WITH THESE ACTIVITIES? PLEASE NAME AT MOST THREE PERSONS. 1 Yourself (proxy respondent) 2 Husband or wife or partner of the deceased 3 Mother or father of the deceased 4 Son of the deceased 5 Son-in-law of the deceased 6 Daughter of the deceased 7 Daughter-in-law of the deceased 8 Grandson of the deceased 9 Granddaughter of the deceased 10 Sister of the deceased 11 Brother of the deceased 12 Other relative 13 Unpaid volunteer 14 Professional helper (e.g 15 Friend or neighbor of the deceased 16 Other person           XT024 Overall, during the last twelve months of [his/her] life, for how long did the deceased receive help? view item details » OVERALL, DURING THE LAST TWELVE MONTHS OF [HIS/HER] LIFE, FOR HOW LONG DID THE DECEASED RECEIVE HELP? 1 Less than one month 2 One month or more but less than 3 months 3 3 months or more but less than 6 months 4 6 months or more but less than a year 5 A full year           XT025 And about how many hours of help were necessary during a typical day? view item details » AND ABOUT HOW MANY HOURS OF HELP WERE NECESSARY DURING A TYPICAL DAY? 0..24         XT620 Because of a physical, mental, emotional or memory problem, did {FL_XT620_1} have difficulty doing any ofthe following activities during the last twelve months of [ his] life? Please name only difficulties that lasted at least three months. INTRODUCTION DIFFICULTIES view item details » INTRODUCTION DIFFICULTIES 1 Preparing a hot meal 2 Shopping for groceries 3 Making telephone calls 4 Taking medication 5 Using a map to figure out how to get around in a strange place 6 Doing work around the house or garden 7 Managing money, such as paying bills and keeping track of expenses 8 Leaving the house independently and accessing transportation services 9 Doing personal laundry 10 Continence over urination or defecation 96 None of these       If Because of a physical, mental, emotional or memory problem, did {FL_XT620_1} have difficulty doing any ofthe following activities during the last twelve months of [ his] life? Please name only difficulties that lasted at least three months. INTRODUCTION DIFFICULTIES view item details » > 0 »             XT622 Thinking about the activities that [ {Name of the deceased}] had problems with during the last twelve months of[ his/ her] life, has anyone helped regularly with these activities? ANYONE HELPED WITH ADLII view item details » THINKING ABOUT THE ACTIVITIES THAT [ {NAME OF THE DECEASED}] HAD PROBLEMS WITH DURING THE LAST TWELVE MONTHS OF[ HIS/ HER] LIFE, HAS ANYONE HELPED REGULARLY WITH THESE ACTIVITIES? ANYONE HELPED WITH ADLII 1 Yes 5 No           If Thinking about the activities that [ {Name of the deceased}] had problems with during the last twelve months of[ his/ her] life, has anyone helped regularly with these activities? ANYONE HELPED WITH ADLII view item details » = A1 Yes 5 No  »                 XT623 Who, including yourself, has mainly helped with these activities? Please name up to three persons.WHO HAS HELPED WITH ADLII view item details » WHO, INCLUDING YOURSELF, HAS MAINLY HELPED WITH THESE ACTIVITIES? PLEASE NAME UP TO THREE PERSONS.WHO HAS HELPED WITH ADLII 1 Yourself (proxy respondent) 2 Husband or wife or partner of the deceased 3 Mother or father of the deceased 4 Son of the deceased 5 Son-in-law of the deceased 6 Daughter of the deceased 7 Daughter-in-law of the deceased 8 Grandson of the deceased 9 Granddaughter of the deceased 10 Sister of the deceased 11 Brother of the deceased 12 Other relative 13 Unpaid volunteer 14 Professional helper (e.g 15 Friend or neighbor of the deceased 16 Other person               XT624 Overall, during the last twelve months of [ his/ her] life, for how long did [ {Name of the deceased}] receivehelp? view item details » OVERALL, DURING THE LAST TWELVE MONTHS OF [ HIS/ HER] LIFE, FOR HOW LONG DID [ {NAME OF THE DECEASED}] RECEIVEHELP? 1 Less than one month 2 One month or more but less than 3 months 3 3 months or more but less than 6 months 4 6 months or more but less than a year 5 A full year               XT625 And about how many hours of help did [ {Name of the deceased}] receive during a typical day?HOURS OF HELP NECESSARY DURING TYPICAL DAY view item details » AND ABOUT HOW MANY HOURS OF HELP DID [ {NAME OF THE DECEASED}] RECEIVE DURING A TYPICAL DAY?HOURS OF HELP NECESSARY DURING TYPICAL DAY 0..24           XT026A The next questions are about the assets and life insurance policies the deceased may have owned and what happened to those assets after [{Name of the deceased}] died.I appreciate that this may upset or distress you, but we would find it very helpful to have some information about the financial issues surrounding death. Before I continue,though, I'd lik e to assure you again that everything you have already told me and anything else you tell me will be k ept completely confidential. view item details » INTRODUCTION TO ASSETS 1 Continue       XT026B Some people mak e a will to determine who receives what parts of the estate.Did [{Name of the deceased}] have a will? view item details » SOME PEOPLE MAK E A WILL TO DETERMINE WHO RECEIVES WHAT PARTS OF THE ESTATE.DID [{NAME OF THE DECEASED}] HAVE A WILL? 1 Yes 5 No       XT027 Who were the beneficiaries of the estate, including yourself? view item details » WHO WERE THE BENEFICIARIES OF THE ESTATE, INCLUDING YOURSELF? 1. Yourself (proxy) 2. Husband or wife or partner of the deceased 3. Children of the deceased 4. Grandchildren of the deceased 5. Siblings of the deceased 6. Other relatives of the deceased 7. Other non-relatives 8. Church, foundation or charitable organization 9. Deceased did not leave anything at all (SPONTANEOUS) 10. Not decided yet (SPONTANEOUS)       XT030 Did the deceased own [his/her] home or apartment - either in total or a share of it? view item details » DID THE DECEASED OWN [HIS/HER] HOME OR APARTMENT - EITHER IN TOTAL OR A SHARE OF IT? 1 Yes 5 No       If Did the deceased own [his/her] home or apartment - either in total or a share of it? view item details » = A1 Yes 5 No  »             XT031 After any outstanding mortgages, what was the value of the home or apartment or the share of it owned by the deceased? view item details » AFTER ANY OUTSTANDING MORTGAGES, WHAT WAS THE VALUE OF THE HOME OR APARTMENT OR THE SHARE OF IT OWNED BY THE DECEASED? -50000000..50000000           XT032 Who inherited the deceased's home or apartment, including yourself?IWER:Code relationship to deceased. view item details » WHO INHERITED THE DECEASED'S HOME OR APARTMENT, INCLUDING YOURSELF?IWER:CODE RELATIONSHIP TO DECEASED. 1 Yourself (proxy respondent) 2 Husband or wife or partner 3 Sons or daughters (ASK FOR FIRST NAMES) 4 Grandchildren 5 Siblings 6 Other relatives (specify) 7 Other non-relatives (specify)           If A3 includes XT032 »                 XT053 IWER:First names of children who inherited home view item details » IWER:FIRST NAMES OF CHILDREN WHO INHERITED HOME           XT033 Did the deceased own any life insurance policies? view item details » DID THE DECEASED OWN ANY LIFE INSURANCE POLICIES? 1 Yes 5 No       If Did the deceased own any life insurance policies? view item details » = A1 Yes 5 No  »             XT034 Approximately what was the total value of all life insurance policies owned by [ {Name of the deceased}]? view item details » VALUE OF ALL LIFE INSURANCE POLICIES 0..100000000000000000           XT035 Who were the beneficiaries of the life insurance polices, including yourself. view item details » WHO WERE THE BENEFICIARIES OF THE LIFE INSURANCE POLICES, INCLUDING YOURSELF. 1 Yourself (proxy respondent) 2 Husband or wife or partner 3 Sons or daughters (ASK FOR FIRST NAMES) 4 Grandchildren 5 Siblings 6 Other relatives (specify) 7 Other non-relatives (specify)           If A6 includes XT035 »                 XT054 IWER:Specify other relative view item details » IWER:SPECIFY OTHER RELATIVE             If A7 includes XT035                 XT055 IWER:Specify other non-relative view item details » IWER:SPECIFY OTHER NON-RELATIVE             If A3 includes XT035 »                 XT056 IWER:First names of children who were beneficiaries view item details » IWER:FIRST NAMES OF CHILDREN WHO WERE BENEFICIARIES           XT036 I will now read out a few types of assets people may have. For each item, please tell me whether the deceased owned them at the time of [his/her] death and, if so, pleasegive your best estimate of their value after any outstanding debts. view item details » INTRODUCTION TYPES OF ASSETS 1 Continue       XT637 Did [he/she] own any [businesses, including land or premises/other real estate/cars/financial assets, e.g. cash, bonds or stock s/jewelry or antiquities]? view item details » DID [HE/SHE] OWN ANY [BUSINESSES, INCLUDING LAND OR PREMISES/OTHER REAL ESTATE/CARS/FINANCIAL ASSETS, E.G. CASH, BONDS OR STOCK S/JEWELRY OR ANTIQUITIES]? 1 Yes 5 No       If Did [he/she] own any [businesses, including land or premises/other real estate/cars/financial assets, e.g. cash, bonds or stock s/jewelry or antiquities]? view item details » = A1 Yes 5 No  »             XT638 About what was the value of the [businesses, including land or premises/other real estate/cars/financial assets, e.g. cash, bonds or stock s/jewelry or antiquities] owned by [{Name of the deceased}] at the time of [his/her] death? view item details » ABOUT WHAT WAS THE VALUE OF THE [BUSINESSES, INCLUDING LAND OR PREMISES/OTHER REAL ESTATE/CARS/FINANCIAL ASSETS, E.G. CASH, BONDS OR STOCK S/JEWELRY OR ANTIQUITIES] OWNED BY [{NAME OF THE DECEASED}] AT THE TIME OF [HIS/HER] DEATH? -50000000..50000000         If How many children did [ {Name of the deceased}] have that were still alive at the time of [ his/ her] death?Please count all natural children, fostered, adopted and stepchildren view item details » > 1 »             XT040A How would you say that the total estate was divided among the children of [ {Name of the deceased}]?IWER: {ReadOut} TOTAL ESTATE DIVIDED AMONG THE CHILDREN view item details » TOTAL ESTATE DIVIDED AMONG THE CHILDREN 1. Some children received more than others 2. The estate was divided about equally among all children 3. The estate was distributed exactly among the children 4. The children have not received anything 5. Estate not divided yet (SPONTANEOUS ONLY)         If How would you say that the total estate was divided among the children of [ {Name of the deceased}]?IWER: {ReadOut} TOTAL ESTATE DIVIDED AMONG THE CHILDREN view item details » = A1. Some children received more than others »             XT040B Would you say that some children received more than others to make up for previous gifts? view item details » WOULD YOU SAY THAT SOME CHILDREN RECEIVED MORE THAN OTHERS TO MAKE UP FOR PREVIOUS GIFTS? 1 Yes 5 No           XT040C Would you say that some children received more than others to give them financial support? view item details » WOULD YOU SAY THAT SOME CHILDREN RECEIVED MORE THAN OTHERS TO GIVE THEM FINANCIAL SUPPORT? 1 Yes 5 No           XT040D Would you say that some children received more than others because they helped or cared for the deceased towards the end of [his/her] life? view item details » WOULD YOU SAY THAT SOME CHILDREN RECEIVED MORE THAN OTHERS BECAUSE THEY HELPED OR CARED FOR THE DECEASED TOWARDS THE END OF [HIS/HER] LIFE? 1 Yes 5 No           XT040E Would you say that some children received more than others because of other reasons? view item details » WOULD YOU SAY THAT SOME CHILDREN RECEIVED MORE THAN OTHERS BECAUSE OF OTHER REASONS? 1 Yes 5 No         XT041 Finally, we would lik e to k now about the deceased's funeral. Was the funeral accompanied by a religious ceremony? view item details » FINALLY, WE WOULD LIK E TO K NOW ABOUT THE DECEASED'S FUNERAL. WAS THE FUNERAL ACCOMPANIED BY A RELIGIOUS CEREMONY? 1 Yes 5 No       XT108 We have ask ed you many questions about numerous aspects of [{Name of the deceased}]'s health and finances, and we want to thank you very much for your assistancewith them. Is there anything else you would lik e to add about the life circumstances of [{Name of the deceased}] in [his/her] last year of life? view item details » ANYTHING ELSE TO SAY ABOUT THE DECEASED       XT042 This is the end of the interview. Thank you once again for all the information you have given us. It will prove extremely useful in helping us to understand how people fare atthe end of their lives view item details » THIS IS THE END OF THE INTERVIEW. THANK YOU ONCE AGAIN FOR ALL THE INFORMATION YOU HAVE GIVEN US. IT WILL PROVE EXTREMELY USEFUL IN HELPING US TO UNDERSTAND HOW PEOPLE FARE ATTHE END OF THEIR LIVES 1 Continue       XT043 IWER:Please state mode of interviewFace-to-face view item details » INTERVIEW MODE 1 Face-to-face 2 Telephone       XT044 IWER: Your interviewer id. view item details » INTERVIEWER ID     End of XT. End-of-Life Interview

Start of XT. End-of-Life Interview