Mode of death of patient/subject | Clinical Variables | 1 | | Mode of death: Brain death; cardiorespiratory death; withdrawal of life sustaining treatments | Core |
Family history relative age value of family member | Clinical Variables | 1 | C14944 | Value for participant's/subject's family member's current age | Basic |
Birth sex assigned type of family member | Clinical Variables | 1 | C58676 | Self-reported phenotypic sex of participant/subject, assigned at birth. | Basic |
Gender identity type of family member | Clinical Variables | 1 | C58677 | Gender identity self-identified by the subject/participant | Basic |
Ethnicity category of family member | Clinical Variables | 1 | C00020 | Category of ethnicity the participant/subject most closely identifies with | Basic |
Race category of family member | Clinical Variables | 1 | C00030 | The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories. | Basic |
Language spoken fluent ISO code by family member | Clinical Variables | 1 | C00028 | Code (ISO 639-2)for each language that the participant/subject speaks fluently | Supplemental |
Religion type of family member | Clinical Variables | 1 | C11115 | Religion the family member practices or with which he/she identifies. | Supplemental |
Participation Assessment with Recombined Tools-Objective (PART-O) - Religious spiritual service number score for family member | Clinical Variables | 1 | C07369 | Score for the number of times the family member attends religious or spiritual services in a typical month. | Supplemental |
Religiosity scale for family member | Clinical Variables | 5 | | Duke University Religion index-5 item instrument to assess organizational and non-organizational religious activity, and intrinsic religiosity | Supplemental |
Single-item religiosity scale for family member | Clinical Variables | 1 | | Score for rating strength of influence religion has in family member's life | Supplemental |
Subjective numeracy scale for family member7 | Clinical Variables | 7 | | Self-report measure of perceived ability to perform various mathematical tasks and preferences for the use of numerical versus prose information; found to predict comprehension of risk communications and ability to complete utility elicitations. | Supplemental |
Short Assessment of Health Literacy – Spanish and English (SAHL-S&E)8 | Clinical Variables | 18 | | Test of comprehension of health literacy | Supplemental |
Rapid Estimate of Adult Literacy in Medicine (REALM) for family member9 | Clinical Variables | 66 | | Word-recognition of 66 medical terms | Supplemental |
Family income range of family member | Clinical Variables | 1 | C00205 | Range, in U.S. dollars, of the annual pre-tax, pre-deduction total income, of the household of which the participant/subject is a member | Supplemental |
Family income supported persons count of family member | Clinical Variables | 1 | C00206 | Count of all people, including the participant/subject, who are supported by the household gross annual income reported | Supplemental |
Marital or partner status of family member | Clinical Variables | 1 | C00207 | Status of participant/subject's current domestic relationship, whether marital or partnered | Supplemental |
Employment fulltime status of family member | Clinical Variables | 1 | C10678 | Status of participant/subject's current full-time employment | Supplemental |
Education level type of family member | Clinical Variables | 1 | C00012 | Highest grade or level of school participant/subject has completed or the highest degree received | Supplemental |
ZIP partial code of family member | Clinical Variables | 1 | C10677 | First three digits of the zip code where the participant/subject currently lives. | Supplemental |
Family support for family member | Clinical Variables | 1 | | Person count who are involved in supporting the family member in decision-making | Supplemental |
Comfort care indicator | Clinical Variables | 1 | C14279 | Indicates if patient's care restricted to comfort measures only | Supplemental |
Comfort care earliest documentation timepoint | Clinical Variables | 1 | | Timepoint of earliest documentation of transition to comfort directed measures (CMO) during hospitalization | Supplemental |
Documented treatment preferences | Clinical Variables | 1 | | Indicates if patient had previously documented treatement preferences | Supplemental |
DNR/DNI indicator of patient | Clinical Variables | 1 | C14282 | Indicates if patient was made DNR/DNI (Do not resuscitate or Do not intubate) during hospitalization | Supplemental |
DNR/DNI earliest documentation timepoint type of patient/subject | Clinical Variables | 1 | C14283 | Timepoint of earliest documentation of DNR/DNI (Do not resuscitate or Do not intubate) during hospitalization | Supplemental |
Modified Rankin scale score-premorbid of patient/subject | Clinical Variables | 1 | C13230 | The overall pre-morbid modified Rankin Scale (mRS) score assigned to the participant/ subject | Supplemental |
Single item pre-morbid cognitive status | Clinical Variables | 1 | | Rating of subject's memory at the present time by family member on a 5-point scale (1–5) with a higher score indicating worse perceived memory | Supplemental |
Pre-morbid developmental and academic history type of pediatric patient | Clinical Variables | 10 | C11084 | Specific aspects of the pediatric patient's pre-morbid developmental status and academic function | Supplemental |
Pre-morbid school placement type of pediatric patient | Clinical Variables | 1 | C11086 | The description of the type of education the pediatric patient receives with details of being with or without assistance. | Supplemental |
Death location type of patient/subject | Clinical Variables | 1 | C12610 | Type of location where the participant/subject died | Exploratory |
Palliative care consulted | Clinical Variables | 1 | | Was palliative care consulted | Exploratory |
Hospice services indicator | Clinical Variables | 1 | | Did the patient receive formal hospice services. | Exploratory |
Family history medical condition indicator | Clinical Variables | 1 | C00721 | Indicator of whether a family member or first and second degree blood relatives of the patient has had a history of the particular medical condition or health related event ie. coma | Exploratory |
Family meetings count | Clinical Variables | 1 | | number of family meetings the family member took part in | Exploratory |
Family meetings duration | Clinical Variables | 1 | | Were the family meetings with the provider team in person or over phone /video | Exploratory |
Single-item maximizer-minimizer elicitation question (the MM1) of family member | Clinical Variables | 1 | | valid, brief elicitation of maximizing-minimizing preferences | Exploratory |