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Describing Death in America: What We Need to Know: Executive Summary (2003)

Chapter: Appendix B: Information on Selected Variables

« Previous: Appendix A: Administrative Information for Relevant Datasets
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

Appendix B
Information on Selected Variables

INFORMATION ON SELECTED VARIABLES

dataset:

LSOA

site of death:

cause of death:

demographics:

SES

household:

household composition (age, relationship)

social supports:

social history

illnesses:

list of 13 serious conditions

physical symptoms:

physical function:

6 ADLS, 6 IADLs, mobility, falling, dizziness, incontinence

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

family care:

helpers with key activities

out-of-pocket costs:

 

INFORMATION ON SELECTED VARIABLES

dataset:

NMFS

site of death:

cause of death:

demographics:

SES

household:

relationship of people living with

social supports:

 

illnesses:

hypertension, heart attack, angina, stroke, Alzheimer, dementia, mental health, diabetes, cancer, asthma, emphysema, bronchitis, cirrhosis, arthritis

physical symptoms:

 

physical function:

mobility, ADL, IADL

psychological symptoms:

 

quality of life:

 

cognition:

trouble understanding, remembering, recognizing, problem behaviors

health services utilization support services:

satisfaction with care:

family care:

did family members help/live with/help pay for care

out-of-pocket costs:

decedent funds and family expenses includes “help at home”

INFORMATION ON SELECTED VARIABLES

dataset:

NHANES

site of death:

cause of death:

demographics:

SES

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

household:

delineates all members of household

social supports:

 

illnesses:

extensive list of conditions

physical symptoms:

extensive pain questionnaire

physical function:

difficulty doing 19 activities

psychological symptoms:

quality of life:

cognition:

self reported memory problems or confusion

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

MEPS

site of death:

cause of death:

demographics:

SES

household:

social supports:

illnesses:

respondent lists conditions for each family member

physical symptoms:

pain

physical function:

ADL, IADL, mobility questions

psychological symptoms:

feeling anxious or blue

quality of life:

cognition:

memory loss, confusion, decision making, supervision for safety

health services utilization support services:

satisfaction with care:

general satisfaction, experience any difficulty, delay or lack of care

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

family care:

detail info about caregivers

out-of-pocket costs:

purchased medicines; alternative care (total expenditures only)

INFORMATION ON SELECTED VARIABLES

dataset:

MDS

site of death:

cause of death:

demographics:

SES

household:

marital status; lived alone prior to adm

social supports:

family involvement; contact with relatives and close friends

illnesses:

checklist plus open ICD coding

physical symptoms:

pain, shortness of breath

physical function:

ADLS specificially and pattern

psychological symptoms:

mood, psychological well-being

quality of life:

cognition:

memory, skills, delirium

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

PSID

site of death:

cause of death:

demographics:

SES

household:

relationships

social supports:

illnesses:

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

physical symptoms:

physical function:

basic needs like dressing, bathing , eating

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

incl paid paid nurse/aide coming to home

INFORMATION ON SELECTED VARIABLES

dataset:

OASIS

site of death:

cause of death:

demographics:

SES

household:

spouse, other family, friend, paid help

social supports:

illnesses:

diagnostic codes

physical symptoms:

pain, shortness of breath, nausea, bowel function

physical function:

ADLS, IADS

psychological symptoms:

“emotional” problems

quality of life:

cognition:

alter, requires prompting, requires assistance, confused

health services utilization support services:

satisfaction with care:

family care:

who is caring, what types of assistance

out-of-pocket costs:

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

INFORMATION ON SELECTED VARIABLES

dataset:

NDI

site of death:

cause of death:

demographics:

SES

household:

social supports:

illnesses:

physical symptoms:

physical function:

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

family car :

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

NHHCS

site of death:

cause of death:

demographics:

SES

household:

family, nonfamily

social supports:

illnesses:

primary or other diagnoses

physical symptoms:

physical function:

receives help from this agency regarding ADLs, IADLs

psychological symptoms:

quality of life:

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

cognition:

health services utilization support services:

satisfaction with care:

family care:

relationship to primary caregiver

out-of-pocket costs:

only as primary or secondary source of payment

INFORMATION ON SELECTED VARIABLES

dataset:

NNHS

site of death:

cause of death:

demographics:

SES

household:

before adm to facility

social supports:

illnesses:

primary and “other” diagnoses

physical symptoms:

physical function:

ADLs, limited IALDs

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

MCBS

site of death:

cause of death:

demographics:

SES

household:

persons staying in the household

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

social supports:

illnesses:

long list

physical symptoms:

physical function:

6 ADLs, 6 IADLs

psychological symptoms:

quality of life:

cognition:

memory, making decisions, concentrating

health services utilization support services:

satisfaction with care:

general satisfaction, availability, convenience, information received, costs, etc.

family care :

who helps with ADLs/IADLs

out-of-pocket costs:

equipment, prescriptions, alterations to house

INFORMATION ON SELECTED VARIABLES

dataset:

NHIS

site of death:

cause of death:

demographics:

SES

household:

relationships among all in household

social supports:

illnesses:

“have you ever been told” broad domains:

cardiovascular disease, respiratory conditions, etc.

physical symptoms:

fatigue, tiredness, pain

physical function:

single item about “major activity limitation”; ADLs, IADLs, Nagi

psychological symptoms:

depression, anxiety, emotional problem

quality of life:

cognition:

limited by difficulty remembering or confusions

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

how much spent for medical care (exc hlth insurance, over counter

INFORMATION ON SELECTED VARIABLES

dataset:

NHEFS

site of death:

cause of death:

demographics:

SES

household:

# in household

social supports:

illnesses:

ever had; doctor ever told arthritis, heart attack, stroke, diabetes, cancer, fx hip, osteoporosis, etc.

physical symptoms:

just arthritis (swelling, stiffness, pain)

physical function:

Katz ADL; Rosow-Breslau, and Fries Functional

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

Medicare

site of death:

cause of death:

demographics:

SES

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

household:

social supports:

illnesses:

only as inferred from diagnostic codes on visits and stays

physical symptoms:

physical function:

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:

family care:

out-of-pocket costs:

INFORMATION ON SELECTED VARIABLES

dataset:

NLTCS

site of death:

cause of death:

demographics:

SES

household:

identification of caregiver

social supports:

how many times did see/talk with friends

illnesses:

does … now have [30] conditions

physical symptoms:

physical function:

6 ADLs; 7 IADLs; Nagi items on range of motion and impairment; activity list

psychological symptoms:

confusion or emotional problem

quality of life:

cognition:

mini mental

health services utilization support services:

satisfaction with care:

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

family care:

many details about who helps with ADLs and IADLs

out-of-pocket costs:

who pays for help with ADLs/IADLs; payment for nursing home, homecare

INFORMATION ON SELECTED VARIABLES

dataset:

AHEAD

site of death:

cause of death:

demographics:

SES

household:

spouse, children, other

social supports:

asked in HRS 1994 module

illnesses:

major illnesses; severity reflected in type and intensity of care

physical symptoms:

pain, shortness of breath, fatigue

physical function:

difficulty with 12 physical tasks; if + then asked difficulty with 6 personal care activities

psychological symptoms:

CESD used in HRS 1994

quality of life:

14 questions on AHEAD Wave 1

cognition:

dementia screening instrument, memory, reasoning

health services utilization support services:

satisfaction with care:

family care :

living with, assisting ADLS

out-of-pocket costs:

nursing home, prescriptions, in-home medical care, assistance with ADLs and IADLS

Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 96
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 97
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 98
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 99
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 100
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 101
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 102
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 103
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 104
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 105
Suggested Citation:"Appendix B: Information on Selected Variables." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 106
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National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists “describing death” at a national level – though some of it is very informative – is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

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