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XT104
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IWER:note sex of decedent (ask if unsure) |
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XT001
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[{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. |
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XT006
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IWER:Code proxy respondent's sex. |
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XT002
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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? |
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XT003
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IWER:Specify other relative |
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XT004
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IWER:Specify other non-relative |
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XT005
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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? |
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XT007
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Can you tell me your year of birth? |
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XT101
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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}]? |
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XT102
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In which month and year was [{Name of the deceased}] born?MONTH:YEAR: |
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XT103
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In which month and year were [{Name of the deceased}] born?MONTH: ^XT102_DecMonthBirthYEAR: |
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XT008
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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: |
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XT009
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In what month and YEAR did [he/she] pass away?MONTH: ^XT008_MonthDiedYEAR: |
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XT010
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How old was [{Name of the deceased}] when [he/she] passed away? |
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XT109
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Was [{Name of the deceased}] married at the time of [his/her] death? |
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XT039
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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 |
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XT011
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What was the main cause of [his/her] death? |
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XT012
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IWER:Specify other cause of death |
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XT013
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How long had [{Name of the deceased}] been ill before [he/she] died? |
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XT014
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Did [he/she] die ... IWER: {ReadOut} PLACE OF DYING |
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XT750
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Was that in the Intensive Care Unit? IN INTENSIVE CARE UNIT |
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XT751
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Was that in a palliative care or inpatient hospice unit? |
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XT767
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Was there at least one (certified) nurse in the assistance or supervision staff? At LEAST A NURSE |
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XT752
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Was that an inpatient hospice unit? INPATIENT HOSPICE |
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XT753
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Was the residential housing provided by hospice? RESIDENTIAL PROVIDED BY HOSPICE |
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XT615
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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? |
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XT016
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During the last year of [his/her] life, for how long altogether did [{Name of the deceased}] stay at hospitals, hospices or nursing homes? |
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XT756
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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 |
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XT757
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In the last four weeks of [his/her] life, did [{Name of the deceased}] have any hospice or palliative care? |
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XT754
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What was the reason that [he/she] did not have hospice or palliative care? |
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XT758
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In [his/her] last month of life, did [{Name of the deceased}] have pain or take medicine for pain? MEDICINE FOR PAIN |
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XT759
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Did the deceased receive too much, too little, or just the right amount of medication for [his/her] pain? MEDICATION AMOUNT |
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XT760
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In [his/her] last month of life, did [{Name of the deceased}] have trouble breathing? TROUBLE BREATHING |
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XT761
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How much help in dealing with [his/her] breathing did the deceased receive - too little, or just the right amount? HOW MUCH HELP BREATHING |
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XT762
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In [his/her] last month of life, did [{Name of the deceased}] have any feelings of anxiety or sadness? ANXIETY SADNESS |
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XT763
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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 |
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XT764
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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? |
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XT765
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During [his/her] last month of life, how often overall was the staff who took care of [him/her] kind, caring, and respectful? |
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XT766
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Overall, how would you rate the care the deceased received in [his/her] last month of life? IWER: |
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XT017
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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. |
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XT018
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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)? |
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XT119
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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.] |
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XT105
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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? |
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XT106
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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?) |
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XT107
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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?) |
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XT020
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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 |
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XT022
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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? |
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XT023
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Who, including yourself, has helped mainly with these activities? Please name at most three persons. |
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XT024
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Overall, during the last twelve months of [his/her] life, for how long did the deceased receive help? |
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XT025
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And about how many hours of help were necessary during a typical day? |
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XT620
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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 |
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XT622
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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 |
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XT623
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Who, including yourself, has mainly helped with these activities? Please name up to three persons.WHO HAS HELPED WITH ADLII |
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XT624
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Overall, during the last twelve months of [ his/ her] life, for how long did [ {Name of the deceased}] receivehelp? |
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XT625
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And about how many hours of help did [ {Name of the deceased}] receive during a typical day?HOURS OF HELP NECESSARY DURING TYPICAL DAY |
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XT026a
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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. |
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XT026b
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Some people mak e a will to determine who receives what parts of the estate.Did [{Name of the deceased}] have a will? |
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XT027
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Who were the beneficiaries of the estate, including yourself? |
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XT030
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Did the deceased own [his/her] home or apartment - either in total or a share of it? |
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XT031
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After any outstanding mortgages, what was the value of the home or apartment or the share of it owned by the deceased? |
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XT032
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Who inherited the deceased's home or apartment, including yourself?IWER:Code relationship to deceased. |
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XT053
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IWER:First names of children who inherited home |
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XT033
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Did the deceased own any life insurance policies? |
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XT034
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Approximately what was the total value of all life insurance policies owned by [ {Name of the deceased}]? |
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XT035
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Who were the beneficiaries of the life insurance polices, including yourself. |
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XT054
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IWER:Specify other relative |
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XT055
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IWER:Specify other non-relative |
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XT056
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IWER:First names of children who were beneficiaries |
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XT036
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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. |
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XT637
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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]? |
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XT638
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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? |
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XT040a
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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 |
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XT040b
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Would you say that some children received more than others to make up for previous gifts? |
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XT040c
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Would you say that some children received more than others to give them financial support? |
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XT040d
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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? |
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XT040e
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Would you say that some children received more than others because of other reasons? |
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XT041
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Finally, we would lik e to k now about the deceased's funeral. Was the funeral accompanied by a religious ceremony? |
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XT108
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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? |
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XT042
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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 |
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XT043
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IWER:Please state mode of interviewFace-to-face |
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XT044
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IWER:
Your interviewer id. |