WLS Codebooks

Note: Codebooks contain frequency data from the private data release. For some variables, these differ from the frequencies in the public release. Variables that differ between the public and private versions include "(not available on public release)" as part of the variable description, or a note indicating the difference between the public and private versions.

In Person: End of Life Preparations

JEOLPREP  End of Life Preparations Module

OVERVIEW

The End of Life Preparations Module was first introduced as part of the 2004
telephone interview. During the 2004 collection wave, survey questions about
preparations the participant had made for the end of life were administered to
a randomly selected 70% sub-sample, as well as to all study participants known
to reside in the city of "Wiscville", Wisconsin or surrounding areas, whether
they did so at that time or in preceding years. Participants were included in
the so-called "Wiscville sample" if any of the following conditions were met:
(1) if they lived in the Wiscville area at the time of the 1993 survey; (2) if
they lived in the Wiscville area when they were tracked for the 2004 survey;
and/or (3) if they lived in the Wiscville area at the time of the 2004
interview. Participants such as these were targeted to receive questions about
their end of life preparations in 2004 because, during the 1990s, the Wiscville
area had been the site of a large-scale intervention study that encouraged
residents to make end of life preparations such as living wills. 

For the 2011 collection wave, we've expanded the End of Life Preparations
Module's coverage to include our entire sample of graduate and selected sibling
participants. Its subject matter, however, remains generally unchanged from the
2004 edition. A survey item about where the participant hopes to spend the last
few days or weeks of their life has been removed and items about which specific
spouses/partners, siblings, and/or children have been notified of and/or
delegated authority over executing the participant's end of life wishes have
been added to the interviewing framework used in 2004. Beyond these changes,
the module progresses much as it did during the 2004 collection wave.
Participants are first asked about their end of life healthcare plans and
preferences and who, if anyone, has knowledge of them. Then, the participant is
asked about legal arrangements they have made for someone else to make
decisions about their medical care in the event of incapacity, followed by
questions regarding their utilization of a living will or advance directive.
Subsequently, the participant is asked about arrangements they've made for the
distribution of their property and assets after death. Here, emphasis is given
to wills, revocable trusts, joint ownerships or beneficiary designations, and
the designation of an executor for the participant's estate. For participants
who were interviewed about end of life preparations during the 2004 collection
wave, we - for each type of preparation - simply determine whether our existing
information continues to hold true and whether any changes have been made. If a
participant has modified their end of life arrangements since 2004, we
follow-up by asking about their reasons for doing so. The module concludes with
a series of questions about preferences for receiving life prolonging medical
treatment in the face of debility, how strictly wishes for end of life medical
care should be followed by others, and a newly introduced item about how much
control the participant hopes to exercise over when and how they die. 

For more information on the End of Life Preparations Module, see Appendix U -
cor854. Note that beneficiaries of life insurance are addressed in the Assets
Module, not here.


BRIEF VARIABLE DESCRIPTIONS
    _____________________________________________________________________

    HELPSTAT-HELPREL:        Module-Level Status Variables

    HY003RE:                 Has the Participant Made *Any* Preparations
                             for the End of Life?
    
    HY004RE:                 Has the Participant Made Plans About Medical
                             Care in Case of Future Serious Illness?
  
    HY010RE-HY021RE:         Participant's Discussion of Health Care 
                             Plans and Preferences (With Anyone?  Whom?
                             How Well Does Person Understand?) 
   
    HY022RE-HY304RE:         Legal Arrangements for Someone to Make 
                             Decisions About Participant's Medical Care
                             (Anyone?  Who Has or Would Have That 
                             Authority?  Changed from 2004 Interview?)
  
    HY030RE-HY313RE:         Participant's Living Will or Advance 
                             Directive (Exists?  Given to Anyone?  Given
                             to Whom?)
  
    HY040RE-HY503REC:        Inheritance Plans if Participant or 
                             Spouse/Partner Were to Die (Who Would Get
                             Assets?  Wills, Trusts, Executor of Estate,
                             Etc.)
                    
    HY061RE-HY601REC:        Preferences for Stopping/Continuing End of
                             Life Medical Treatment - Both Participant's
                             and Their Spouse's/Partner's
        
    HY065RE, HY066SP:        How Strictly Does the Participant and Their
                             Spouse/Partner Want Their Respective End of
                             Life Wishes Followed? 
    
    HY080RE:                 How Strongly Does the Participant Agree or
                             Disagree That They Want to Control How and
                             When They Die?