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XT104
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 |
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 have some 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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Code proxy respondent's sex. |
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XT002
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Before we start asking questions about the last year of life of[{Name of the deceased}], would you please tell me what was your relationship to the deceased?
If unclear, specify: 'So you were [his/ her]...' |
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XT003
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Specify other relative |
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XT004
|
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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 in person, by phone, mail, email, or any other electronic means? |
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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 make 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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XT802
|
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In which month and year was[{Name of the deceased}] born? |
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XT102
|
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Month: |
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XT103
|
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Year: |
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XT008
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We would like to know more about the circumstances of[{Name of the deceased}] 's death. In what month and year did[he/ she] pass away?
MONTH: YEAR: Month |
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XT009
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In what month and YEAR did[he/ she] pass away?
MONTH: ^XT008_MonthDied; YEAR:
Year |
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XT010
|
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How old was[{Name of the deceased}] when[he/ she] passed away? Age in years |
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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? Read out if necessary |
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XT012
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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? Read out.; |
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XT014
|
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Did[he/ she] die ...
Read out.; |
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XT750
|
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Was that in the 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? |
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XT752
|
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Was that an inpatient hospice unit? |
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XT753
|
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Was the residential housing 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?
Do not read out |
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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. |
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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?
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 |
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XT754
|
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What was the reason that [he/ she] did not have hospice or palliative care? Read out.; |
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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? |
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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? |
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XT760
|
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In [his/ her] last month of life, did [{Name of the deceased}] have 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? |
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XT762
|
|
In [his/ her] last month of life, did [{Name of the deceased}] have any feelings of anxiety or 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? |
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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?
Read out.;. |
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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? By staff, we mean all professional staff who are paid (by someone) for their services. This includes doctors, nurses, social workers, chaplains, nursing assistants, therapists, and other personnel.
Read out.;. |
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XT766
|
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Overall, how would you rate the care the deceased received by the staff in [his/ her] last month of life? Read out.;. |
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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.
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. |
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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 such as wheelchairs, rollators, walking sticks and crutches, orthoses, or protheses/ 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 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)? [By out of pocket we mean that the costs were not covered or reimbursed by the health insurance/national health system/third party.] ^FL_XT119_5;
Fill in '0' if all the expenses were covered or reimbursed. Otherwise fill in the amount in ^FLCurr; |
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XT105
|
|
We would like to know more about the difficulties people have in their last year of life because of 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 months.
Read out.;.
Code all that apply.; |
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XT620
|
|
Here is another list of activities. 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.
Read out.;.
Code all that apply.; |
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XT022
|
|
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? |
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XT023
|
|
Who, including yourself, has mainly helped with these activities? Please name up to three persons. do not read out
at most three answers!
code relationship to deceased! |
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XT024
|
|
Overall, during the last twelve months of[his/ her] life, for how long did[{Name of the deceased}] receive help? Read out.; |
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XT025
|
|
And about how many hours of help did[{Name of the deceased}] receive during a typical day? |
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XT026a
|
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The next questions are about the assets and life insurance policies[{Name of the deceased}] may have owned and what happened to those assets after[he/ she] died. We would find it very helpful to have some information about the financial issues surrounding the time when people die. Before I continue, though, I'd like to assure you again that everything you have already told me and anything else you tell me will be kept completely confidential. |
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XT026b
|
|
Some people make a will to determine who receives what parts of the estate. Did[{Name of the deceased}] have a will? |
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XT027
|
|
Who were the beneficiaries of the estate, including yourself? Read out.;
Code all that apply.; |
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XT030
|
|
Did[{Name of the deceased}] own[his/ her] home or apartment - either in total or a share of it? |
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XT031
|
|
After any outstanding mortgages, what was the value of the home or apartment or the share of it owned by[{Name of the deceased}]?
Enter an amount in ^FLCurr;
If deceased left debt, code negative amount. |
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XT032
|
|
Who inherited the home or apartment of[{Name of the deceased}], including yourself? Code relationship to deceased.
Code all that apply.;
If the home or apartment is already sold, code all persons who got a share of the money. |
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XT053
|
|
First names of children who inherited home |
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XT033
|
|
Did[{Name of the deceased}] own any life insurance policies? |
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XT034
|
|
Approximately what was the total value of all life insurance policies owned by[{Name of the deceased}]? Enter an amount in ^FLCurr; |
|
XT035
|
|
Who were the beneficiaries of the life insurance polices, including yourself. Code relationship to deceased
Code all that apply.; |
|
XT054
|
|
Specify other relative |
|
XT055
|
|
Specify other non-relative |
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XT056
|
|
First names of children who were beneficiaries |
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XT036
|
|
I will now read out a few types of assets people may have. For each item, please tell me whether[{Name of the deceased}] owned them at the time of[his/ her] death and, if so, please give your best estimate of their value after any outstanding debts. |
|
XT637
|
|
Did[he/ she] own any [businesses, including land or premises/ other real estate/ cars, except leased cars/ financial assets, e.g. cash, bonds or stocks/ jewelry or antiquities]? |
|
XT638
|
|
About what was the value of the [businesses, including land or premises/ other real estate/ cars, except leased cars/ financial assets, e.g. cash, bonds or stocks/ jewelry or antiquities] owned by[{Name of the deceased}] at the time of[his/ her] death?
Enter an amount in ^FLCurr;
If deceased left debt, code negative amount. |
|
XT040a
|
|
How would you say that the total estate was divided among the children of[{Name of the deceased}]? Read out.; |
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XT040b
|
|
Would you say that some children received more than others to make up for previous gifts? |
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XT040c
|
|
Would you say that some children received more than others to give them financial support? |
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XT040d
|
|
Would you say that some children received more than others because they helped or cared for[{Name of the deceased}] towards the end of[his/ her] life? |
|
XT040e
|
|
Would you say that some children received more than others because of other reasons? |
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XT041
|
|
Finally, we would like to know about the funeral of[{Name of the deceased}]. Was the funeral accompanied by a religious ceremony? |
|
XT108
|
|
We have asked 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 assistance with them. Is there anything else you would like to add about the life circumstances of[{Name of the deceased}] in[his/ her] last year of life?
If nothing to say, type none and press enter |
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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 at the end of their lives |
|
XT043
|
|
Please state mode of interview |
|
XT044
|
|
Your interviewer id. |