XT. End-of-Life Interview

XT. End-of-Life Interview Module of SHARE 2017

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