Series 13, Number 154

Augus

t 2003

Characteristics of Hospice

Care Discharges and Their

Length of Service:

United States, 2000
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Suggested citation

Haupt BJ. Characteristics of hospice care discharges and their length of

service: United States, 2000. National Center for Health Statistics. Vital Health

Stat 13(154). 2003.

Library of Congress Cataloging-in-Publication Data

Hospice discharges and their length of service, United States, 2000.

p. cm. — (Vital and health statistics. Series 13, Data from the National

Health Survey; no. 154)

‘‘This report presents data on hospice care discharges and an analysis of how

these characteristics differ by length of service; selected trend data are also

show.’’

‘‘July 2003.’’

‘‘DHHS Publication No.(PHS) 2003-1725.’’

ISBN 0-8406-0592-7

1. Hospice care—United States—Statistics. 2. Hospices (Terminal

care)—United States. 3. Hospice care—Utilization—United States—Statistics. 4.

Health surveys—United States—Statistics. I. Centers for Disease Control and

Prevention (U.S.) II. National Center for Health Statistics (U.S.) III. Series.

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Series 13, Number 154

Characteristics of Hospice Care

Discharges and Their Length of

Service: United States, 2000

Data From the National

Health Care Survey

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for Health Statistics

Hyattsville, Maryland

August 2003

DHHS Publication No. (PHS) 2003-1725
National Center for Health Statistics

Edward J. Sondik, Ph.D., Director

Jack R. Anderson, Deputy Director

Jack R. Anderson, Acting Associate Director for

International Statistics

Jennifer H. Madans, Ph.D., Associate Director for Science

Lawrence H. Cox, Ph.D., Associate Director for Research

and Methodology

Diane M. Makuc, Dr.P.H., Acting Associate Director for

Analysis, Epidemiology, and Health Promotion

P. Douglas Williams, Acting Associate Director for Data

Standards, Program Development, and Extramural Programs

Edward L. Hunter, Associate Director for Planning, Budget,

and Legislation

Gina M. Martin, Acting Associate Director for

Management and Operations

Charles J. Rothwell, Associate Director for Information

Technology and Services

Division of Health Care Statistics

Thomas McLemore, Acting Director

Irma Arispe, Ph.D., Associate Director for Science

Robin E. Remsburg, Ph.D., A.P.R.N., Chief, Long-Term Care

Statistics Branch

Charles A. Adams, Chief, Technical Services Branch

Cooperation of the U.S. Census Bureau

Under the legislation establishing the National Health Survey, the Public

Health Service is authorized to use, insofar as possible, the services or

facilities of other Federal, State, or private agencies.

In accordance with specifications established by the National Center for

Health Statistics, the U.S. Census Bureau, under a contractual arrangement,

participated in planning the surveys and collecting the data for the National

Home and Hospice Care Survey.
Contents

Abstract .................................................................................................. 1

Highlights................................................................................................. 1

Introduction ............................................................................................... 1

Methods .................................................................................................. 2

Results ................................................................................................... 4

Patient Characteristics ..................................................................................... 4

Services and Service Providers.............................................................................. 4

Functional Status ......................................................................................... 4

Diagnoses............................................................................................... 5

Length-of-Service Measures ................................................................................ 5

Summary and Discussion .................................................................................... 7

References ................................................................................................ 8

Appendix I............................................................................................... 17

Technical Notes ......................................................................................... 17

Scope of the Survey ................................................................................... 17

Sample Design........................................................................................ 17

Data Collection and Processing .......................................................................... 17

Estimation Procedure................................................................................... 18

Reliability of Estimates................................................................................. 18

Presentation of Estimates ............................................................................... 18

Definitions of Selected Terms............................................................................ 18

Appendix II .............................................................................................. 27

Discharged Patient Questionnaire ........................................................................... 27

Text Figures

1. Average and median length of service for hospice care discharges: United States, selected years 1992–2000 .......... 2

2. Percent distribution of incontinent hospice care discharges by type of incontinence: United States, 2000.............. 4

3. Percent of hospice care discharges by primary admission diagnosis: United States, selected years 1992–2000.......... 5

4. Percent of hospice care discharges by primary noncancer admission diagnosis: United States, selected years

1992–2000.......................................................................................... 5

5. Average length of service by number of ADLs for hospice care discharges: United States, 2000 .................... 6

6. Percent distribution of hospice care discharges by mobility limitation, according to length of service: United States,

2000............................................................................................... 6

7. Average and median length of service for selected primary admission diagnoses for hospice care discharges:

United States, 2000................................................................................... 7

Detailed Tables

1. Number and percent distribution of hospice care discharges by length of service, according to selected patient

characteristics: United States, 2000 ..................................................................... 10

2. Number and percent distribution of hospice care discharges by length of service, according to residence and living

arrangements: United States, 2000...................................................................... 11

iii
3. Number and percent distribution of hospice care discharges by type of residence, according to caregiver status:

United States, 2000.................................................................................. 11

4. Number and percent of hospice care discharges and percent distribution by length of service, according to services

received during the 30 days prior to discharge: United States, 2000 .......................................... 12

5. Number and percent of hospice care discharges and percent distribution by length of service, according to service

providers seen during the 30 days prior to discharge: United States, 2000 ..................................... 13

6. Number and percent of hospice care discharges and percent distribution by length of service, according to selected

types of functional status: United States, 2000 ............................................................ 14

7. Number and percent distribution of diagnoses for hospice care discharges by primary or secondary diagnosis,

according to diagnostic category: United States, 2000 ...................................................... 15

8. Number and percent distribution of hospice care discharges by primary admission diagnosis: United States, selected

years 1992–2000.................................................................................... 15

9. Number and percent distribution of hospice care discharges not living in a health facility by length of service,

according to caregiver status: United States, 2000 ......................................................... 16

10. Number and percent distribution of hospice care discharges by length of service, according to primary admission

diagnosis: United States, 2000 ......................................................................... 16

Appendix Tables

I. Standard errors for number and percent distribution of hospice care discharges by length of service, according to

selected patient characteristics: United States, 2000........................................................ 20

II. Standard errors for number and percent distribution of hospice care discharges by length of service, according to

residence and living arrangements: United States, 2000 .................................................... 21

III. Standard errors for number and percent distribution of hospice care discharges by type of residence, according to

caregiver status: United States, 2000.................................................................... 21

IV. Standard errors for number and percent of hospice care discharges and percent distribution by length of service,

according to services received during the 30 days prior to discharge: United States, 2000......................... 22

V. Standard errors for number and percent of hospice care discharges and percent distribution by length of service,

according to service providers seen during the 30 days prior to discharge: United States, 2000 .................... 23

VI. Standard errors for number and percent of hospice care discharges and percent distribution by length of service,

according to selected types of functional status: United States, 2000 .......................................... 24

VII. Standard errors for number and percent distribution of diagnoses for hospice care discharges by primary or secondary

diagnosis, according to diagnostic category: United States, 2000 ............................................. 25

VIII. Standard errors for number and percent distribution of hospice care discharges by primary admission diagnosis:

United States, selected years 1992–2000................................................................. 25

IX. Standard errors for number and percent distribution of hospice care discharges not living in a health facility by

length of service, according to caregiver status: United States, 2000 .......................................... 26

X. Standard errors for number and percent distribution of hospice care discharges by length of service, according to

primary admission diagnosis: United States, 2000 ......................................................... 26

iv
Objective

To obtain the maximum benefit from Characteristics of Hospice Care 

hospice, a person should receive

hospice services for at least 30 days. Discharges and Their Length of

For many Americans, this goal is not

being met. This report presents data on

hospice care discharges for 2000. Service: United States, 2000

Selected trend data are also presented.

by Barbara J. Haupt, D.V.M., Division of Health Care Statistics

Methods

Data are from the National Home + Shorter lengths of service occurred 

and Hospice Care Survey. The data Highlights for discharges who were living in 

presented are numbers and percents by institutions, did not receive help selected discharge characteristics. + There were 621,100 discharges from from the agency with ADLs, had a Length of service measures include hospice care in 2000. Most were lower level of mobility limitation, average and median length of service elderly, white, and lived in a private and had a primary admission and length of service intervals.

or semiprivate residence. There was diagnosis of cerebrovascular disease. 

no significant difference among Results and Conclusions discharges by sex, and they were 

There were 621,100 discharges from equally likely to be married or Introduction hospice care in 2000. The typical unmarried. Most of them had a 

discharge was elderly, white, lived in a primary caregiver who was a private or semiprivate residence with a relative and with whom they lived. End-of-life or hospice care has caregiver to whom they were related, + The majority of hospice care been available in the United and died while in hospice care. The

primary source of payment was discharges in 2000 did not receive States since the early 1970s. At 

Medicare. Most received three or more timely care. Sixty-three percent of that time, hospice care relied heavily on 

services, were seen by three or more discharges received hospice care for professional and lay volunteers. 

service providers, received help from less than 30 days. The average Although volunteers are still an 

the hospice with at least one activity of length of service was 46.9 days important component of hospice, the 

daily living (ADL), were incontinent, and (down from 84.0 days in 1994), and movement has grown into a more 

had mobility limitation. Cancer is the the median length of service was formalized, regulated industry. The use 

most common primary admission 15.6 days (down from 27.4 days in of hospice care services in the United 

diagnosis, but the proportion decreased 1994). States also increased during the latter from

in 2000.

Most of the discharges did not

receive timely care. Sixty-three percent

of discharges received hospice care for

primary admission diagnosis for 

hospice discharges, but the 

proportion decreased from 

result of the availability of the Medicare 

Hospice Benefit, which began in 1983. 

Medicaid reimbursement for hospice 

less than 30 days. The average length 75 percent in 1992 to 58 percent in care became available in 1986 as an 

of service was 46.9 days, and the 2000. Other primary admission optional service; this coverage is 

median length of service was 15.6 diagnoses included heart disease, currently available in 43 States and the 

days. Shorter lengths of service dementia, cerebrovascular disease, District of Columbia. Many private 

occurred for those who were living in

institutions, did not receive help from

the agency with ADLs, had a lower

and chronic obstructive pulmonary 

disease and allied conditions. 

health insurance companies also include 

hospice care as one of their covered 

75 percent in 1992 to 58 percent + Cancer remains the most common part of the 20th century, primarily as a 

level of mobility limitation, and had a

+ Eighty-five percent of the discharges services (1–4).

primary admission diagnosis of received three or more services, and Hospice care services are provided

cerebrovascular disease. Of the 75 percent were seen by three or by home health care agencies as well as

noninstitutionalized discharges, those more service providers during the 30 by hospices. These agencies are usually

whose primary caregiver was a spouse days prior to discharge. defined by the focus of care they

had shorter lengths of service than + Seventy-one percent received help provide. Home health care is provided

those who were cared for by a child. from the hospice with at least one to individuals and families in their home

activity of daily living (ADL), or place of residence for promoting, 

Keywords: National Home and 71 percent were incontinent, maintaining, or restoring health, or for 

Hospice Care Survey c long-term 82 percent had mobility limitation, maximizing the level of independence 

care c hospice discharges c length of 70 percent used a hospital bed, and while minimizing the effects of 

service 51 percent used oxygen. disability and illness, including terminal 

Page 1
Page 2 [ Series 13, No. 154

illness. Hospice care is defined as a 

program of palliative and supportive 

care services that provides physical, 

psychological, social, and spiritual care 

for dying persons, their families, and 

other loved ones. Home health agencies 

often provide hospice care as well as 

home health care, but hospices generally 

provide only hospice care services. 

Although hospice services are available 

in inpatient settings, most of these 

services are provided in the patient’s 

home or usual residence. 

The eligibility requirements for 

hospice care vary depending on who is 

providing the service. The requirements 

for most programs are based on those of 

the Medicare Hospice Benefit (MHB), 

but many hospices have broader 

eligibility criteria so persons not eligible 

for the MHB can be admitted for care. 

The MHB can be used by persons who 

are certified by a physician as having a 

terminal illness (that is, a life 

expectancy of 6 months or less). 

Because predicting life expectancy is an 

inexact science, a person may be 

re-certified for the MHB indefinitely as 

long as he/she meets the Medicare 

eligibility criteria (2,4–7). 

The goals of hospice care are to 

provide a good quality of life for the 

dying patient and to help the patient and 

his/her family to cope with the 

approaching death. Emphasis is on 

palliative care of the patient rather than 

on curing the disease or extending life. 

Control of pain—physical, mental, 

social, and spiritual—is stressed. Studies 

demonstrate that those who receive 

hospice care are very satisfied with the 

care received and indicate that this care 

meets the needs of both the patients and 

their families (3,7). To obtain the 

maximum benefit from hospice, a 

person should receive services in a 

timely manner. However, a widely 

accepted definition of ‘‘timely’’ is 

lacking. Some experts suggest that 

hospice care services should be received 

for at least 30 days before death (8); 

others recommend 60 days as the 

minimum (9). The MHB originally 

assumed that the average length of 

service in hospice care would be 70 

days, and that the services provided and 

their cost would be spread over that 

time period (3). 

Figure 1. Average and median length of service for hospice care discharges: United States,

selected years 1992–2000

Regardless of the definition used, 

the goal of timely hospice care is not 

being met for many Americans. Various 

studies indicate that both the average 

and median lengths of service in hospice 

declined during the 1990s (3,7,10–11). 

Data from the National Home and 

Hospice Care Survey support this 

observation (figure 1). Both the average 

and median lengths of service declined 

steadily from 1994 to 2000—the 

average from 84.0 to 46.9 days and the 

median from 27.4 to 15.6 days. Reasons 

offered for this failure to provide timely 

care include a lack of knowledge (in 

both the medical community and the 

general American public) of the 

availability and benefits of hospice care. 

Restrictive eligibility requirements of 

funding sources—either perceived or 

actual—have also been suggested as a 

reason for late referrals to hospice. In 

addition, many eligible persons do not 

receive hospice care until they are very 

close to death because of an 

unwillingness on their part, their 

caregiver’s part, and/or their physician’s 

part, to accept and discuss end-of-life 

care (3,5–12). 

This report examines hospice care 

discharges by length of service. The 

results include a description of discharge 

characteristics, followed by an analysis 

of how these characteristics differ by 

length of service. 

Methods 

Data analyzed in this report are 

from the 2000 National Home 

and Hospice Care Survey 

(NHHCS), a nationwide sample survey 

that was first conducted by the National 

Center for Health Statistics in 1992 (13). 

The NHHCS, a segment of the 

long-term care component of the 

National Health Care Survey (14), 

collects information about agencies that 

provide home health and hospice care 

services, their current patients, and their 

discharges. 

A brief overview of the survey 

methodology is presented here. More 

detailed information about the data 

collection methods and estimation and 

testing procedures for the NHHCS, as 

well as definitions of selected terms 

used in this report, are in Appendix I. 

The sampling frame for the 2000 

NHHCS consisted of 15,451 agencies 

classified as agencies providing home 

health and hospice care. The universe of 

home health agencies and hospices was 

obtained from various national 

organizations and other sources. The 

sample consisted of 1,800 agencies 

selected from this universe. 

Data collection for the 2000 

NHHCS occurred from August through 

December 2000. The survey was 

conducted using a combination of 

personal interview with hospice staff 
Series 13, No. 154 [ Page 3

and review of patients’ medical records. 

Data on agency characteristics were 

obtained by personal interview with the 

administrator. Patient and discharge data 

were obtained by interviewing a staff 

person most familiar with the medical 

records. 

Statistics presented in this report are 

estimated numbers and percents of 

hospice care discharges and length of 

service by various items of interest. 

Discharge data are used because these 

data represent a complete episode of 

care. Discharges refer to patients who 

were removed from the agency rolls 

(including those who died) during a 

designated month (October 1999– 

September 2000) that was randomly 

selected for each agency. The data are 

weighted to represent the number of 

discharges that occurred during the 

12-month period, October 1999– 

September 2000. The estimates are 

based on a sample of 2,327 discharges. 

The data collection instrument used, the 

Discharged Patient Questionnaire, is 

shown in ‘‘Appendix II.’’ 

Characteristics examined include 

demographics (sex, age, race, and 

marital status), primary source of 

payment, discharge status (alive and 

deceased), living arrangements, 

caregiver status, services received, 

service providers seen, functional status, 

and diagnoses at admission. Age and 

marital status refer to the status at the 

time of discharge. Primary source of 

payment is the source that paid the 

greatest amount of charges for care. For 

those discharged alive, discharge status 

is further subdivided into those who no 

longer needed hospice care, those who 

were transferred to inpatient care, and 

those who were discharged for some 

other reason. Living arrangements refer 

to where and with whom the discharge 

lived during the episode of care. 

Caregiver status refers to whether the 

discharge had a primary caregiver and, 

for those with a caregiver, whether the 

discharge lived with the caregiver and 

the relationship of the discharge to the 

caregiver. Services received and service 

providers seen refer to what occurred 

during the 30 days prior to discharge. 

Measures of functional status 

include activities of daily living (ADLs), 

continence status, mobility status, and 

use of selected aids or devices. Five 

ADLs are examined (bathing, dressing, 

eating, transferring in or out of beds or 

chairs, and using the toilet room) and 

refer to whether the discharge received 

personal help from the agency in 

performing any ADLs. Incontinence is 

defined as the discharge having an 

indwelling urinary catheter or urostomy, 

a colostomy or ileostomy, or difficulty 

controlling the bladder or bowels. 

Mobility status is broadly defined to 

refer to both upper and lower body 

facility of movement. Mobility 

limitation is defined as receiving 

personal help from the agency with 

selected ADLs (bathing, dressing, 

transferring in or out of beds or chairs, 

and using the toilet room), walking, or 

regularly using selected aids or devices. 

Three levels of mobility limitation are 

examined. Severe mobility limitation 

refers to discharges who received 

personal help from the agency with at 

least one of the following: transferring 

in or out of beds or chairs, walking, or 

using the toilet room. Moderate 

limitation refers to discharges not 

included above, but who used at least 

one of the following aids: cane or 

crutches; geri-chairs, lift chairs, or other 

specialized chairs; transfer equipment; 

walker; or wheelchair (manual or 

motorized). Mild limitation refers to 

discharges not included in the previous 

levels, but who received personal help 

from the agency in bathing or dressing 

or used at least one of the following 

aids: bedside commode, elevated or 

raised toilet seat, grab bars, or shower 

chair or bath bench. For both ADLs and 

mobility status, an unknown number of 

discharges who were bedbound or 

received help only from nonagency 

persons are excluded from these 

measures because this information was 

not collected. Finally, the use of the 

following four special aids or devices is 

examined: hospital bed, oxygen, IV 

therapy equipment, and enteral feeding 

equipment. 

One primary and up to five 

secondary admission diagnoses are 

recorded for each discharge. The 

primary diagnosis is the diagnosis most 

responsible for the discharge’s 

admission to hospice care. All diagnoses 

are coded according to the International

Classification of Diseases, 9th Revision,

Clinical Modification (15). 

The following three measures of 

length of service are used: average and 

median length of service and length of 

service intervals (less than 30 days and 

30 days or more). For this report, 

discharges received services in a timely 

manner if they received hospice care for 

30 days or more. 

Average length of service is 

computed by summing the number of 

days of service and dividing the result 

by the number of discharges within the 

particular category of interest. This 

statistic is very sensitive to extremes 

(very low or very high values) and is, 

therefore, best used with data that are 

symmetrically distributed. 

Median length of service is 

determined by identifying the midpoint 

of the distribution (the point at which 

50 percent of the cases are below it and 

50 percent are above it). As such, it is 

insensitive to extremes and is therefore 

often used with skewed or asymmetrical 

distributions. 

Average length of service has 

traditionally been analyzed in the past 

and is presented in this report to 

maintain continuity. Median length of 

service, however, gives a more accurate 

picture of hospice use since the length 

of service of hospice patients is skewed 

toward the shorter lengths of service. 

Two types of tests of significance 

are used in this report. The Bonferroni 

multiple comparisons test is used for 

testing comparisons—for example, 

differences between average lengths of 

service for discharges by diagnosis. 

Tests of trends—such as changes of 

length of service over time—are done 

using a weighted least squares 

regression method (16). Both types of 

tests are based on the two-sided z-test 

with an overall 0.05 level of 

significance. A critical value of 1.96 was 

used for the trend tests. Critical values 

for the Bonferroni test vary depending 

on the possible number of comparisons 

that can be made (16). The standard 

errors were approximated using 

SUDAAN software, which takes into 

account the complex sample design of 

the survey. A description of the software 

and the approach it uses is published 
Page 4 [ Series 13, No. 154

elsewhere (17). Standard errors of the 

estimates are included in ‘‘Appendix I.’’ 

Results 

Patient Characteristics

During 2000, there were 621,100 

discharges from hospice care (table 1). 

There was no significant difference by 

sex. The majority (80 percent) were 

elderly (65 years of age and over). 

Eighty-four percent of the discharges 

were white and 10 percent were black or 

African American or other races. About 

one-half (47 percent) were married at 

the time of discharge. Of those who 

were not married, the majority was 

widowed. 

Medicare was the primary source of 

payment for most (79 percent) of the 

discharges. Private sources of payment, 

such as private insurance, own income, 

or family support, accounted for an 

additional 13 percent, and Medicaid was 

the primary payer for 5 percent. 

The most common reason for 

discharge was death (86 percent). Eight 

percent were discharged because they no 

longer needed services—for example, 

their condition stabilized or they were 

no longer eligible for hospice care. Only 

2 percent of the discharges occurred 

because the patient was transferred to 

inpatient care, including care provided 

in a hospital or nursing home. 

Most of the discharges (61 percent) 

lived in a private or semiprivate 

residence during their episode of care, 

and about 35 percent were already 

residents of an inpatient health facility 

(table 2). Of the noninstitutionalized 

discharges (those not living in a health 

facility), 81 percent lived with family 

members, 8 percent lived with only 

nonfamily members, and 9 percent lived 

alone. 

Information about the caregiver 

status of hospice discharges is shown in 

table 3. Ninety-two percent of the 

discharges had a primary caregiver, that 

is, an individual who was responsible 

for providing personal care assistance, 

companionship, and/or supervision to 

the patient. This caregiver was not a 

staff member of the agency providing 

Figure 2. Percent distribution of incontinent hospice care discharges by type of

incontinence: United States, 2000

hospice care. For 61 percent of the 

institutionalized discharges (those living 

in a health facility) the primary 

caregiver was a relative, and for 

39 percent, the primary caregiver was 

someone hired by the discharged person 

or a member of the staff of the facility 

where the person resided. Ninety percent 

of the noninstitutionalized discharges 

were related to their primary caregiver; 

for most of these, the caregiver was 

their spouse. 

Services and Service

Providers

Information on services received 

and type of service provider seen is 

shown in tables 4 and 5. Most 

discharges (92 percent) received skilled 

nursing services. Other frequently 

received services were referral or social 

services (72 percent), homemakerhousehold or personal care services 

(62 percent), prescription medications 

(59 percent), and pastoral or spiritual 

care (59 percent). The type of service 

provider usually mirrors the services 

provided. Most discharges were seen by 

a nurse (96 percent). A social worker or 

mental health specialist (76 percent), a 

home health or nursing aide 

(69 percent), or a chaplain (53 percent) 

was also frequently seen. Although 

62 percent of the discharges received 

homemaker-household or personal care 

services, only 7 percent were seen by a 

homemaker or personal caretaker. Other 

types of staff such as home health aides 

or nursing aides and attendants provide 

much of this type of care. The majority 

of hospice discharges received multiple 

services provided by several types of 

providers. Eighty-five percent received 

three or more different types of services 

and 75 percent were seen by three or 

more types of providers. 

Functional Status

Table 6 provides information on the 

following measures of functional status 

for hospice care discharges: help with 

ADLs, continence, mobility, and use of 

selected aids or devices. 

Seventy-one percent of the 

discharges received personal help from 

the agency with at least one ADL. Most 

of the discharges received help with 

bathing or showering (70 percent) or 

with dressing (59 percent), and almost 

half (48 percent) received help with 

transferring in or out of beds or chairs. 

The majority (71 percent) of the 

discharges had a problem with 

continence, defined as having an 

indwelling urinary catheter or urostomy, 

a colostomy or ileostomy, or difficulty 

controlling their bladder or bowels. Of 

the incontinent discharges, 62 percent 

had both bladder and bowel 

incontinence and 29 percent had only 

bladder incontinence (figure 2). 
Series 13, No. 154 [ Page 5

Eighty-two percent of the 

discharges had limited mobility. 

Seventeen percent had a mild limitation, 

that is, they received personal help from 

the agency only with bathing, 

showering, dressing, or used aids such 

as an elevated toilet seat or a shower 

chair to help with nonambulatory types 

of mobility limitation. An additional 

15 percent did not receive personal help 

from the agency with getting around, 

but used an aid or device such as a 

cane, transfer equipment, or a 

wheelchair, for transferring, walking, or 

otherwise ambulating (moderate 

limitation). One-half had severe mobility 

limitation and received help from 

agency personnel with transferring in or 

out of beds or chairs, walking, or using 

the toilet room. Of the remaining 

18 percent, some may have had mobility 

limitations, but are not included above 

because they were bedbound, infants, or 

received help only from persons not 

associated with the hospice. This 

information is not collected in the 

NHHCS. 

The use of a hospital bed, oxygen 

(including oxygen concentrator), 

intravenous (IV) therapy equipment, and 

enteral feeding equipment was also 

examined. Eighty-two percent of the 

discharges used one or more of these 

aids or devices. Most (70 percent) had a 

hospital bed, and 51 percent used 

oxygen. 

Diagnoses

One primary and up to five 

secondary admission diagnoses were 

recorded for each discharge. The 

primary admission diagnosis for 

58 percent of the hospice care 

discharges, as shown in table 7, was a 

malignant neoplasm. Common 

noncancer primary diagnoses included 

heart disease (7 percent), dementia 

(6 percent), cerebrovascular disease 

(5 percent), and chronic obstructive 

pulmonary disease (COPD) and allied 

conditions (4 percent). 

Sixty-two percent of the hospice 

discharges had multiple diagnoses. Of 

the secondary diagnoses, 29 percent 

were malignant neoplasms, 8 percent 

were heart disease, 7 percent were 

cerebrovascular disease, and 6 percent 

Figure 3. Percent of hospice care discharges by primary admission diagnosis:

United States, selected years 1992–2000

Figure 4. Percent of hospice care discharges by primary noncancer admission diagnosis:

United States, selected years 1992–2000

were diabetes mellitus. Malignant 

neoplasms were more likely to be 

primary diagnoses, and diabetes mellitus 

was almost always a secondary 

diagnosis. The other diagnoses listed 

were equally likely to be primary or 

secondary. 

Hospice patients are predominantly 

cancer patients. Prognosis is relatively 

easy to determine for many cancer 

diagnoses—much easier than for other, 

more chronic but equally fatal diseases 

such as heart disease or COPD. In 

recent years, hospice care has become 

more available to persons with diseases 

other than cancer. Data from the 

NHHCS reflect this trend (table 8, 

figure 3). The percent of hospice 

discharges with a primary diagnosis of 

malignant neoplasm has been steadily 

declining since 1992, from 75 percent in 

1992 to 58 percent in 2000. As shown in 

figure 4, the proportion of heart disease 

diagnoses has remained steady over this 

time at 7–8 percent. Noncancer 

diagnoses that are being reported in 

recent years include dementias, 

cerebrovascular disease, and COPD. 

Length-of-Service

Measures

Hospice care should be provided for 

30 days or more to receive maximum 

benefit from the care (8). During 2000, 

only 37 percent of the discharges fell 

into this category. The average length of 

service for hospice discharges was 46.9 
Page 6 [ Series 13, No. 154

days, and the median length of service 

was 15.6 days (table 1). 

Length-of-service measures did not 

differ significantly for the demographic 

characteristics studied. The average 

length of service, however, was longer 

for Medicare than for Medicaid 

discharges (48.1 days compared with 

24.3 days). 

Differences were seen for length-ofservice measures by reason for 

discharge. The average length of service 

was longer for those discharged alive 

(73.1 days) than for discharges who died 

(42.4 days), and a larger proportion of 

those who were discharged alive 

(61 percent) than deceased (33 percent) 

received services for 30 days or more. 

As shown in table 2, median length 

of service was shorter for discharges 

living in a health facility during their 

episode of care (6.4 days) compared 

with those who did not live in a health 

facility (20.6 days) or who lived in a 

private or semiprivate residence (19.9 

days). 

Table 9 shows length-of-service 

measures by caregiver characteristics for 

noninstitutionalized discharges. For 

these discharges, the median length of 

service was shorter for those whose 

primary caregiver was a spouse (14.9 

days) than for those whose caregiver 

was a child or child-in-law (35.4 days). 

Consistent with this, discharges whose 

primary caregiver was a spouse were 

less likely to receive services for 30 

days or more (33 percent) than those 

whose primary caregiver was a child or 

child-in-law (56 percent). 

Some differences occurred for 

length-of-service measures by various 

types of functional status (table 6). 

Discharges who received help with more 

ADLs had a longer average length of 

service, as illustrated in figure 5. This 

trend is significant at the 0.05 level. 

Discharges receiving help from the 

agency with one or more ADLs were 

more likely to receive hospice care for 

30 days or more than those who 

received no help from the agency in 

ADLs (42 percent compared with 

27 percent). 

As mentioned previously, discharges 

with mobility limitation are those 

receiving personal help from the agency 

with selected ADLs, walking, or 

Figure 5. Average length of service by number of ADLs for hospice care discharges:

United States, 2000

Figure 6. Percent distribution of hospice discharges by mobility limitation, according to

length of service: United States, 2000

regularly using mobility aids or devices. 

Those with a mild limitation had a 

shorter average length of service than 

those with severe limitation, 29.4 days 

compared with 56.7 days. Figure 6 

shows the percent distribution of 

discharges by mobility limitation 

according to length-of-service interval. 

A higher percent of discharges who 

received hospice care for 30 days or 

more (90 percent) than those who 

received care for less than 30 days 

(77 percent) had a mobility limitation. 

Moreover, those who received care for 

30 days or more were more likely to be 

severely limited than those who received 

care for less than 30 days (61 percent 

compared with 45 percent). 

Finally, discharges using one or 

more of the following aids—hospital 

bed, oxygen, IV therapy equipment, and 

enteral feeding equipment—had a 

shorter median length of service (13.3 

days) than those who used none of these 

aids (27.0 days). 

Data on length of service by 

primary diagnosis are shown in table 10. 

Both the average and median lengths of 

service for discharges with 

cerebrovascular disease (16.2 days and 

3.8 days, respectively) were shorter than 

those for discharges with malignant 
Series 13, No. 154 [ Page 7

Figure 7. Average and median length of service for selected primary admission diagnoses

for hospice care discharges: United States, 2000

neoplasms (43.3 days and 17.2 days) or 

heart disease (61.2 days and 20.8 days). 

This is illustrated in figure 7. Almost 

90 percent of the discharges with a 

primary diagnosis of cerebrovascular 

disease received hospice care for less 

than 30 days. This is greater than the 

proportion of discharges with a primary 

diagnosis of cancer (62 percent) or heart 

disease (56 percent). 

Summary and 

Discussion 

n 2000, there were 621,100 

discharges from hospice care in the 

United States. The typical discharge 

was elderly, white, lived in a private or 

semiprivate residence with family 

members, lived with and was related to 

their primary caregiver, and was 

discharged because of death. The 

primary source of payment for hospice 

care was Medicare. There was no 

significant difference among hospice 

discharges by sex, and they were 

equally likely to be married or 

unmarried. 

Most hospice discharges received 

three or more services from three or 

more service providers. Most often the 

services provided were skilled nursing 

services, referral or social services, 

homemaker-household or personal care 

services, and pastoral or spiritual care. 

Nurses, social workers or mental health 

specialists, home health or nursing 

aides, and chaplains most frequently 

provided the services. 

The majority of discharges had one 

or more of the following types of 

functional limitation: received help from 

the agency with at least one ADL; were 

incontinent (bladder and/or bowels); had 

mobility limitation; and used a hospital 

bed, oxygen, IV therapy equipment, or 

enteral feeding equipment. 

Cancer remains the primary 

admission diagnosis, although the 

proportion decreased from 75 percent in 

1992 to 58 percent in 2000. Other 

admission diagnoses included heart 

disease, dementia, cerebrovascular 

disease, and chronic obstructive 

pulmonary disease. A major reason for 

the decline in malignant neoplasms as a 

primary diagnosis involves the easing of 

the regulations for the Medicare Hospice 

Benefit in the Balanced Budget Act of 

1997. As a result, persons may now be 

re-certified as eligible for hospice care 

an indefinite number of times as long as 

their life expectancy is 6 months or less. 

The hospice industry has actively 

worked to make hospice available to 

persons with diseases other than cancer 

by educating both the public and the 

medical community about the 

availability of hospice care, the 

applicability of this care for diseases 

other than cancer, and the importance of 

enrolling in hospice earlier in the 

disease process than has occurred in the 

past (2,4–7,9). 

Three length-of-service measures 

were examined—average, median, and 

length-of-service intervals (less than 30 

days and 30 days or more). Average 

length of service has traditionally been 

analyzed in the past and is presented in 

this report to maintain continuity. 

Median length of service, however, 

gives a more accurate picture of hospice 

use since the length of service of 

hospice patients is skewed toward the 

shorter end of the spectrum. The 

average length of service for hospice 

discharges was 46.9 days in 2000, a 

steady decline from 84.0 days in 1994. 

A similar decline occurred for median 

length of service, from 27.4 days in 

1994 to 15.6 days in 2000. This pattern 

has also been reported elsewhere and is 

believed to be an indication of a 

decreasing ability of the U.S. health care 

system to provide timely hospice care to 

those who need and desire it (3,7,10– 

11). In 2000, only 37 percent of the 

discharges received hospice care for at 

least 30 days. 

Some differences in discharge 

characteristics by the various length of 

service measures occurred. Medicaid 

discharges had a shorter average length 

of service than Medicare discharges. 

Institutionalized discharges (those living 

in a health facility during their hospice 

care) had a shorter median length of 

service than those who lived elsewhere. 

Institutionalized discharges may be at a 

more critical stage in their illness than 

those living in private homes or their 

caregivers may be less able to care for 

them at home as their illness progresses. 

Discharges living in nursing homes may 

have a shorter length of service in 

hospice care because the nursing home 

may use hospice services only as a 

late-stage resource. Noninstitutionalized 

discharges whose primary caregiver was 

their spouse had shorter lengths of 

service (as measured by median length 

of service and length of service 

intervals) than those whose primary 

caregiver was a child or child-in-law. 

Perhaps it is easier to accept the 

presence of a terminal illness in a parent 

I
Page 8 [ Series 13, No. 154

than in a spouse. Children may also be 

less able (because of other obligations) 

to bear the entire burden of caregiving 

for a terminal patient and seek formal 

hospice care earlier in the disease 

process. Discharges with a primary 

admission diagnosis of cerebrovascular 

disease (stroke) had a shorter length of 

service for all three length of service 

measures than did those whose 

diagnosis was cancer or heart disease. 

Those with stroke may have been 

referred to hospice care at a more acute 

or advanced stage in their illness and 

died sooner than discharges with cancer 

or heart disease. The time from onset of 

a diagnosis of stroke to death may also 

be shorter for some cases. 

Some significant differences 

occurred for length of service measures 

by discharge status. A greater proportion 

of those discharged alive compared with 

those who were discharged because of 

death received services for 30 days or 

more. Those who were discharged alive 

also had a longer average length of 

service than those who were deceased. 

The use of selected aids or devices 

(hospital bed, oxygen, IV therapy 

equipment, and enteral feeding 

equipment) was negatively associated 

with median length of service, while 

help with ADLs and mobility limitation 

was positively associated with average 

length of service and length of service 

intervals. Discharges using the aids 

listed may be admitted in a more critical 

state of health resulting in a more rapid 

death than those not using these types of 

aids or those receiving agency help with 

ADLs. 

Several strengths and weaknesses of 

the data presented here should be kept 

in mind. Data collected through the 

NHHCS are representative of hospice 

care provided throughout the United 

States regardless of the funding status of 

the agency providing the care, so 

agencies not certified by Medicare or 

Medicaid are included in the sample. 

However, because the data are based on 

a sample, there may not be a sufficient 

number of cases to provide reliable 

estimates for relatively rare events. 

The data were collected from the 

medical records of the discharges. 

Although this results in better accuracy 

and more completeness of medical data, 

some information, such as functional 

status or help with ADLs by nonagency 

persons, is not always available in 

medical records (19). Mobility 

limitation, for example, may be 

underestimated in this report because 

this variable is based on the discharge 

receiving personal help from the agency 

with ADLs or walking rather than a 

direct assessment of functional level. 

ADLs are often provided to persons 

with chronic conditions (19) and are 

frequently provided by informal 

caregivers (18,20). Some discharges 

may have received help with ADLs 

from their primary caregiver and not 

agency personnel; others did not receive 

help with ADLs (especially those related 

to mobility) because they were 

bedbound (and bedbound status is not 

known). For these reasons mobility 

limitation for some discharges may not 

be known. 

The use of discharge data, rather 

than data on current patients, allows the 

analysis of a complete episode of care. 

Discharge data, however, may tend to 

underestimate those patients who receive 

care for long periods of time because 

the likelihood of being included in a 

sample of discharges is greater for those 

whose lengths of service is relatively 

short. This report, therefore, may 

overestimate the proportion of 

discharges who received hospice care 

for less than 30 days. The average and 

median lengths of service reported here 

may also be shorter than the true 

estimates. A sample of current patients 

is more likely to provide information on 

long-term users of care because these 

patients are more likely to be enrolled 

with the agency on the day that the data 

were collected. However, data on 

current patients does not provide 

information about a complete episode of 

care. A cohort of hospice patients, 

followed from admission to discharge, 

would provide the most appropriate 

information on length of service. 

In summary, there were 621,100 

discharges from hospice care in 2000. 

Most discharges were elderly, white, 

noninstitutionalized, and had a primary 

caregiver with whom they lived and to 

whom they were related. Most required 

help with ADLs, were incontinent, and 

had a mobility limitation. The majority 

of hospice care discharges did not 

receive timely care in 2000. Sixty-three 

percent received hospice care for less 

than 30 days. The average length of 

service was 46.9 days (down from 84.0 

days in 1994), and the median length of 

service was 15.6 days (down from 27.4 

days in 1994). Shorter lengths of service 

occurred for discharges who were 

institutionalized, did not receive help 

from the agency with ADLs, had mild 

mobility limitation, and had a primary 

admission diagnosis of cerebrovascular 

disease. Of the noninstitutionalized 

discharges, those whose primary 

caregiver was a spouse had shorter 

lengths of service than those who were 

cared for by a child. 

References 

1.Center for Medicaid and State 

Operations, Health Care Financing 

Administration (now Centers for 

Medicare and Medicaid Services), 

DHHS. Hospice: Mavis Connolly: 

Health Care Financing Administration. 

Teleconference presentation. Accessed 

through www.cms.hhs.gov/medicaid/ 

teleconf/051501.pdf on December 20, 

2002. 

2.Hospice Association of America. 

Hospice: A historical perspective. 

Accessed through the National 

Association for Home Care Web site at 

www.nahc.org/HAA/history.html on 

December 31, 2002. 

3.Miller GW, Williams JR Jr., English 

DJ, Keyserling J. Delivering quality 

and cost-effectiveness at the end of life: 

Building on the 20-year success of the 

Medicare Hospice Benefit. February 

2002. Accessed through National 

Hospice and Palliative Care 

Organization Web site at 

www.nhpco.org on September 20, 

2002. 

4.National Association for Home Care. 

Basic statistics about hospice. July 

2001. Accessed through the National 

Association for Home Care Web site at 

www.nahc.org/Consumer/hpcstats.html 

on January 3, 2003. 

5.Centers for Medicare and Medicaid 

Services, DHHS. Paid advertisement: 

End-of-life care enhances dignity and 

peace as life nears its end. The 

Physician Executive. March-April 2002, 

pp. 34–5. Accessed through National 

Hospice and Palliative Care 

Organization Web site at 
Series 13, No. 154 [ Page 9

www.nhpco.org on September 20, 

2002. 

6. National Hospice and Palliative Care 

Organization and the Center to 

Advance Palliative Care. Hospitalhospice partnerships in palliative care: 

Creating a continuum of service. 

December 2001. Accessed through the 

National Hospice and Palliative Care 

Organization Web site at 

www.nhpco.org on January 2, 2003. 

7.Swiger H. Hospice care and the 

institutional barriers to its success: An 

issues paper developed for NHPCO’s 

Public Policy Committee. March 2002. 

Accessed through National Hospice and 

Palliative Care Organization Web site at 

www.nhpco.org on October 18, 2002. 

8.Travis SS, Bernard M, Dixon S, et al. 

Obstacles to palliation and end-of-life 

care in a long-term care facility. The 

Gerontologist 42(3):342–9. June 2002. 

9.Last Acts. Means to a better end: A 

report on dying in America today. 

November 2002. Accessed through Last 

Acts Web site at www.lastacts.org on 

January 9, 2003. 

10.Emanuel LL, von Gunten CF, Ferris 

FD. Gaps in end-of-life care. Arch Fam 

Med 9:1176–80. November/December 

2000. 

11. Lynn J. Serving patients who may die 

soon and their families. JAMA 

285(7):925–32. February 21, 2001. 

12.Von Gunten CF. Secondary and tertiary 

palliative care. JAMA 287(7):875–81. 

February 20, 2002. 

13.Haupt BJ. Development of the National 

Home and Hospice Care Survey. 

National Center for Health Statistics. 

Vital Health Stat 1(33). 1994. 

14.Kovar MG. Data systems of the 

National Center for Health Statistics. 

National Center for Health Statistics. 

Vital Health Stat 1(23). 1989. 

15.Public Health Service and Health Care 

Financing Administration. International 

Classification of Diseases, 9th 

Revision, Clinical Modification. 

Washington: Public Health Service. 

1991. 

16.Sirken MG, Shimizu BI, French DK, 

Brock DB. Manual on standards and 

procedures for reviewing statistical 

reports. Rockville, Maryland: National 

Center for Health Statistics. 1974. 

(Reprinted 1987). 

17.Shah BV, Barnwell BG, Bieler GS. 

SUDAAN users’ manual, Release 7.0. 

Research Triangle Institute: Research 

Triangle Park, North Carolina. 1996. 

18.Navaie-Waliser M, Spriggs A, Feldman 

PH. Informal caregivers: Differential 

experiences by gender. Medical Care 

40(12):1249–59. December 2002. 

19. Burns RB, Moskowitz MA, Ash A, et 

al. Self-report versus medical record 

functional status. Medical Care 

30S(5):MS85-MS95. May 1992. 

20.General Accounting Office. Long-term 

care current issues and future 

directions: Report to the Chairman, 

Special Committee on Aging, U.S. 

Senate. General Accounting Office. 

Pub. No. GAO/HEHS–95–109. 

Washington. April 1995. 

21.Sirrocco A. Nursing homes and board 

and care homes: Data from the 1991 

National Health Provider Inventory. 

Advance data from vital and health 

statistics; no 244, Hyattsville, 

Maryland: National Center for Health 

Statistics. 1993. 

22.Delfosse R. Hospice and home health 

agency characteristics: United States, 

1991. National Center for Health 

Statistics. Vital Health Stat 13(120). 

1995. 

23.National Center for Health Statistics. 

Development and maintenance of a 

national inventory of hospitals and 

institutions. National Center for Health 

Statistics. Vital Health Stat 1(3). 1965. 

24.National Center for Health Statistics. 

The Agency Reporting System for 

maintaining the national inventory of 

hospitals and institutions. National 

Center for Health Statistics. Vital 

Health Stat 1(6). 1968. 

25.SMG Marketing Group, Inc. Home 

Healthcare Market Database. Chicago: 

Healthcare Market Data Network®. 

December 1999. 

26.National Hospice and Palliative Care 

Organization. Unpublished mailing list 

of members for 2000. 

27.Hoffman K. Specifications for selecting 

the agencies for the 1996 National 

Home and Hospice Care Survey. 

Unpublished memo. 1996. 

28.Hoffman K. Specification of estimators 

for NHHCS. Unpublished memo. 2001. 
Page 10 [ Series 13, No. 154

Table 1. Number and percent distribution of hospice care discharges by length of service, according to selected patient characteristics:

United States, 2000

Length of service in days

Discharges Percent distribution

Average

length

of service

Median

length

of service

Percent

distribution Total

Less than

30 days

30 days

Discharge characteristic Number or more

Total ....................................... 621,100 100.0 100.0 62.8 37.2 46.9 15.6

Sex

Male ....................................... 309,300 49.8 100.0 66.7 33.3 42.8 14.5

Female ..................................... 311,800 50.2 100.0 58.9 41.1 50.9 18.1

Age at discharge

Under 65 years ................................ 126,900 20.4 100.0 64.1 35.9 43.9 15.0

65 years and over ............................... 494,300 79.6 100.0 62.4 37.6 47.7 16.3

65–74 years ................................. 153,100 24.7 100.0 65.0 35.0 41.2 16.4

75–84 years ................................. 176,400 28.4 100.0 62.3 37.7 50.6 16.5

85 years and over ............................. 164,800 26.5 100.0 60.2 39.8 50.5 *15.9

Race1

White ...................................... 522,500 84.1 100.0 62.6 37.4 46.7 14.8

Black or African American and other races ................ 64,300 10.3 100.0 68.5 31.5 *53.6 15.8

Black or African American ........................ 50,100 8.1 100.0 66.8 33.2 *61.1 *14.9

Unknown .................................... 34,400 5.5 100.0 55.5 *44.5 36.7 *26.8

Marital status at discharge

Married ..................................... 293,400 47.2 100.0 67.5 32.5 40.0 11.7

Not married ................................... 289,500 46.6 100.0 58.8 41.2 54.1 18.5

Widowed ................................... 206,400 33.2 100.0 58.7 41.3 53.5 *18.4

Divorced or separated ........................... 35,200 5.7 100.0 63.1 36.9 *74.8 *14.3

Single or never married .......................... 47,900 7.7 100.0 56.3 43.7 41.5 *19.5

Unknown .................................... 38,300 6.2 100.0 *56.4 *43.6 45.3 *24.2

Primary source of payment

Medicare .................................... 488,000 78.6 100.0 61.5 38.5 48.1 16.7

All other sources ............................... 133,200 21.4 100.0 67.6 32.4 42.4 *10.3

Medicaid ................................... 31,400 5.1 100.0 73.7 *26.3 24.3 *5.4

Private2 .................................... 80,600 13.0 100.0 64.4 35.6 *49.4 *11.0

Other3 ..................................... 21,100 3.4 100.0 70.9 *29.1 42.5 *7.0

Reason for discharge

Died ....................................... 531,000 85.5 100.0 66.7 33.3 42.4 13.6

Did not die ................................... 90,200 14.5 100.0 39.5 60.5 73.1 *43.6

Services no longer needed from agency4 ............... 49,000 7.9 100.0 *29.2 70.8 86.2 64.7

Transferred to inpatient care5 ...................... 14,500 2.3 100.0 * *63.9 81.7 71.0

Other and unknown ............................ 26,700 4.3 100.0 *60.2 *39.8 44.4 *10.0

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Prior to 1998, only one race was recorded. Since 1998, more than one race may be recorded. The categories ‘‘White’’ and ‘‘Black or African American’’ include only those discharges for whom that

one race was reported. Discharges for whom more than one race was reported are included in ‘‘Black or African American and other races.’’

2Includes private insurance, own income, family support, Social Security benefits, retirement funds, and welfare.

3Includes unknown source and no charge for care.

4Includes recovered, stabilized, treatment plan completed, no longer eligible for hospice care, and insurance coverage no longer available.

5Includes transferred to hospital, nursing home, or other inpatient or residental care.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.
Series 13, No. 154 [ Page 11

Table 2. Number and percent distribution of hospice care discharges by length of service, according to residence and living arrangements:

United States, 2000

Length of service in days

Discharges Percent distribution

Average

length

of service

Median

length

of service

Percent

distribution Total

Less than

30 days

30 days

Discharge characteristic Number or more

Total ................................... 621,100 100.0 100.0 62.8 37.2 46.9 15.6

Residence during care

Private or semiprivate residence1 ................. 379,900 61.2 100.0 59.7 40.3 49.7 19.9

Board and care, assisted living, or residential care facility . . 21,600 3.5 100.0 *45.7 *54.3 71.6 *38.9

Health facility (including mental health facility) ......... 217,000 34.9 100.0 69.9 30.1 39.7 6.4

Unknown ................................ * * * * * * *

Living arrangements of discharges not in a health facility2

Total ................................... 404,200 100.0 100.0 58.9 41.1 50.7 20.6

Lived alone ............................... 36,000 8.9 100.0 *47.2 52.8 67.0 *38.8

Lived with someone .......................... 358,900 88.8 100.0 59.4 40.6 49.9 20.4

Lived with family members .................... 326,900 80.9 100.0 59.4 40.6 49.8 18.9

Lived only with nonfamily members ............... 32,000 7.9 100.0 59.1 *40.9 50.3 *24.4

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Includes private residence, rented room, boarding house, and retirement home.

2Excludes those for whom living arrangements are unknown.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.

Table 3. Number and percent distribution of hospice care discharges by type of residence, according to caregiver status:

United States, 2000

Type of residence Type of residence

Discharge characteristic Total

Health

facility

All other and

unknown type Total

Health

faciity

All other and

unknown type

Number Percent distribution

All discharges ............................... 621,100 217,000 404,200 100.0 100.0 100.0

Primary caregiver status

Primary caregiver ............................. 569,000 189,300 379,700 91.6 87.2 94.0

No primary caregiver or unknown ................... 52,100 27,700 24,400 8.4 *12.8 6.0

Discharges with primary caregiver ................... 569,000 189,300 379,700 100.0 100.0 100.0

Lived with primary caregiver

Yes ...................................... 434,300 96,400 337,900 76.3 50.9 89.0

No or unknown .............................. 134,700 92,900 41,800 23.7 49.1 11.0

Relationship of primary caregiver to discharge

Relative ................................... 458,700 116,100 342,600 80.6 61.3 90.2

Spouse .................................. 238,200 52,200 186,000 41.9 27.6 49.0

Child/child-in-law ............................ 167,600 53,100 114,500 29.5 28.0 30.2

Other relative .............................. 52,900 *10,900 42,000 9.3 *5.7 11.1

Nonrelative ................................. 110,300 73,200 37,100 19.4 38.7 9.8

Hired by discharge/staff of residential facility ........... 81,300 66,800 *14,500 14.3 35.3 *3.8

Other nonrelative or unknown .................... 29,000 * 22,700 5.1 * 6.0

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

NOTES: Numbers may not add to totals because of rounding. Percents are based on the unrounded figures.
Page 12 [ Series 13, No. 154

Table 4. Number and percent of hospice care discharges and percent distribution by length of service, according to services received

during the 30 days prior to discharge: United States, 2000

Length of service in days

Discharges Percent distribution

Average

length

of service

Median

length

of service

Less than

30 days

30 days

Service received or more 1 Number Percent Total

All discharges ............................... 621,100 . . . 100.0 62.8 37.2 46.9 15.6

Medical and skilled nursing

Skilled nursing ............................... 570,400 91.8 100.0 62.7 37.3 46.7 16.0

Physician .................................. 186,900 30.1 100.0 64.2 35.8 42.5 14.9

Equipment and medication

Medications ................................. 367,100 59.1 100.0 61.8 38.2 51.0 15.4

Durable medical equipment and supplies .............. 279,600 45.0 100.0 59.7 40.3 49.0 18.5

Personal care

Homemaker-household or personal care2 .............. 387,100 62.3 100.0 58.2 41.8 51.1 20.9

Companion or volunteer2 ........................ 195,300 31.5 100.0 51.5 48.5 63.6 26.9

Continuous home care .......................... 23,800 3.8 100.0 47.5 52.5 68.3 42.1

Psychosocial

Referral or social2 ............................. 446,300 71.9 100.0 61.6 38.4 47.4 16.9

Pastoral or spiritual care2 ........................ 366,200 59.0 100.0 62.8 37.2 46.3 15.7

Counseling or psychological2 ...................... 194,400 31.3 100.0 57.9 42.1 49.5 20.7

Respite care ................................ 43,400 7.0 100.0 *54.2 45.8 62.6 *23.6

Other

High-tech care2,3 ............................. 127,500 20.5 100.0 58.8 41.2 64.5 *15.1

Other2,4 ................................... 164,100 26.4 100.0 55.5 44.5 35.8 *15.6

Number of services received

0–25 ..................................... 96,100 15.5 100.0 77.0 23.0 29.1 *3.1

3–5 ...................................... 237,900 38.3 100.0 59.2 40.8 51.0 17.2

6–8 ...................................... 185,500 29.9 100.0 61.8 38.2 51.4 19.3

9 or more .................................. 101,500 16.4 100.0 59.5 40.5 46.0 *16.7

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2A discharge is counted only once even though it may have received more than one type of service in this category.

3Includes enterostomal therapy, IV therapy, respiratory therapy, and other high-tech care such as enteral nutrition or dialysis.

4Includes dental treatment services, dietary and/or nutritional services, Meals on Wheels, occupational therapy, physical therapy, speech therapy and/or audiology, transportation, vocational therapy,

and other services.

5Includes a small number of discharges for whom no services were reported.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.
Series 13, No. 154 [ Page 13

Table 5. Number and percent of hospice care discharges and percent distribution by length of service, according to service providers seen

during the 30 days prior to discharge: United States, 2000

Length of service in days

Discharges Percent distribution

Average

length

of service

Median

length

of service

Less than

30 days

30 days

Provider seen Number Percent Total or more

All discharges ............................... 621,100 . . . 100.0 62.8 37.2 46.9 15.6

Type of provider1

Nurses2,3 .................................. 598,700 96.4 100.0 63.5 36.5 45.8 15.2

Social workers/mental health specialists2 .............. 470,700 75.8 100.0 61.0 39.0 45.6 18.1

Home health aides/nursing aides/attendants2 ............ 427,500 68.8 100.0 58.5 41.5 49.7 20.4

Chaplains .................................. 328,400 52.9 100.0 64.5 35.5 43.2 14.9

Volunteers ................................. 192,900 31.1 100.0 50.4 49.6 64.2 28.2

Physicians ................................. 153,000 24.6 100.0 69.0 31.0 37.3 *10.2

Homemakers/personal caretakers ................... 40,900 6.6 100.0 58.3 41.7 77.4 *18.8

Other2,4 ................................... 116,700 18.8 100.0 60.7 39.3 40.8 *20.9

Number of providers seen

0–15 ..................................... 65,500 10.6 100.0 76.0 *24.0 *47.4 *2.0

2 ....................................... 91,900 14.8 100.0 67.5 32.5 33.1 *6.0

3 ....................................... 120,300 19.4 100.0 60.3 39.7 50.5 19.0

4 ....................................... 118,600 19.1 100.0 54.7 45.3 55.9 26.1

5 or more .................................. 224,800 36.2 100.0 62.6 37.4 45.7 16.1

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2A discharge is counted only once even though it may have been seen by more than one type of provider in this category.

3Includes registered, licensed practical, and vocational nurses.

4Includes dietitians or nutritionists, occupational therapists, physical therapists, respiratory therapists, speech pathologists or audiologists, and other providers.

5Includes a small number of discharges for whom no providers were reported.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.
Table 6. Number and percent of hospice care discharges and percent distribution by length of service, according to selected types of

functional status: United States, 2000

Functional status

Discharges

Length of service in days

Percent distribution

Number Percent Total

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

All discharges ............................... 621,100 . . . 100.0 62.8 37.2 46.9 15.6

Received help from agency with ADLs1,2

Bathing or showering ........................... 431,800 69.5 100.0 58.0 42.0 50.4 20.0

Dressing ................................... 364,700 58.7 100.0 57.8 42.2 53.1 20.7

Eating . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 218,300 35.1 100.0 61.9 38.1 52.7 15.7

Transferring in or out of beds or chairs ................ 294,900 47.5 100.0 55.8 44.2 56.9 24.1

Using the toilet room . . . . . . . . . . . . . . . . . . . . . . . . . . . 236,400 38.1 100.0 54.0 46.0 58.6 23.9

Functional status in ADLs2

Received no help from agency with ADLs3 ............. 179,800 29.0 100.0 73.5 26.5 39.4 *5.2

Received help from agency with 1 or more ADLs ......... 441,300 71.1 100.0 58.4 41.6 49.9 19.5

Received help with:

1 ADL . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31,800 5.1 100.0 57.7 42.3 33.0 *16.8

2 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87,200 14.0 100.0 67.3 32.7 32.8 *10.4

3 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 86,300 13.9 100.0 55.5 44.5 51.8 *24.9

4 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99,400 16.0 100.0 55.0 45.0 52.7 23.8

5 ADLs ................................. 136,700 22.0 100.0 57.2 42.8 61.6 *19.8

Continence status

Continent .................................. 181,300 29.2 100.0 58.9 41.1 50.2 18.9

Incontinent4 ................................. 439,800 70.8 100.0 64.4 35.6 45.5 14.6

Only bladder incontinence or device5 ............... 126,700 20.4 100.0 57.3 42.7 51.9 *16.6

Only bowel incontinence or device6 . . . . . . . . . . . . . . . . 40,700 6.6 100.0 *59.4 *40.6 37.9 26.1

Both bladder and bowel incontinence or device 5,6 ....... 272,500 43.9 100.0 68.4 31.6 43.7 12.0

Mobility status

No mobility limitation3 . . . . . . . . . . . . . . . . . . . . . . . . . . 110,700 17.8 100.0 79.8 20.2 *34.0 *2.0

Mobility limitation ............................. 510,400 82.2 100.0 59.1 40.9 49.7 18.7

Limitation level:

Mild . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106,800 17.2 100.0 72.7 27.3 29.4 *5.9

Moderate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89,900 14.5 100.0 55.9 44.1 49.3 20.9

Severe ................................. 313,700 50.5 100.0 55.4 44.6 56.7 24.5

Use of selected aids or devices

No aids or devices . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114,700 18.5 100.0 52.0 48.0 54.8 27.0

Aids or devices1 .............................. 506,400 81.5 100.0 65.2 34.8 45.1 13.3

Hospital bed ............................... 435,000 70.0 100.0 65.9 34.1 44.2 11.8

Oxygen .................................. 313,500 50.5 100.0 68.7 31.3 39.3 11.7

IV therapy equipment . . . . . . . . . . . . . . . . . . . . . . . . . 46,700 7.5 100.0 63.6 *36.4 *66.1 *9.8

Enteral feeding equipment . . . . . . . . . . . . . . . . . . . . . . 19,200 3.1 100.0 *21.0 *79.0 69.2 *53.9

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2ADL is activity of daily living.

3Includes an unknown number of discharges who were bedbound or received help only from nonagency persons.

4Includes an indwelling urinary catheter or urostomy, a colostomy or ileostomy, or difficulty controlling the bladder or bowels.

5Bladder incontinence or device includes an indwelling urinary catheter or urostomy or difficulty controlling the bladder.

6Bowel incontinence or device includes a colostomy, ileostomy, or difficulty controlling the bowels.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.

Page 14 [ Series 13, No. 154
Series 13, No. 154 [ Page 15

Table 7. Number and percent distribution of diagnoses for hospice care discharges by primary or secondary diagnosis, according to

diagnostic category: United States, 2000

Type of diagnosis2 Type of diagnosis2

All All

Diagnostic category and ICD–9–CM code1 diagnoses Primary Secondary diagnoses Primary Secondary

Number Percent distribution

All diagnoses3 ....................................... 1,437,500 621,100 820,500 100.0 100.0 100.0

Malignant neoplasms ........................ 140–208,230–234 592,100 357,000 235,100 41.2 57.5 28.7

Malignant neoplasm of large intestine and rectum ....... 153–154,197.5 60,000 51,500 * 4.2 8.3 *

Malignant neoplasm of trachea, bronchus, and lung .... 162,197.0,197.3 146,100 120,500 25,600 10.2 19.4 *3.1

All other diagnoses .................................... 845,500 264,200 585,200 58.8 42.5 71.3

Diabetes mellitus .................................. 250 47,100 * 46,300 3.3 * 5.6

Dementias ............................... 290,294,331.0 72,000 39,400 32,600 5.0 6.3 4.0

Heart disease ......... 391–392.0,393–398,402,404,410–416,420–429 109,200 42,500 66,700 7.6 6.8 8.1

Congestive heart failure .......................... 428.0 49,700 23,500 26,200 3.5 3.8 3.2

Cerebrovascular disease ......................... 430–438 83,900 29,600 54,400 5.8 4.8 6.6

Chronic obstructive pulmonary disease and allied conditions . . . 490–496 65,800 27,600 38,200 4.6 4.4 4.7

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).

2The primary diagnosis is the diagnosis most responsible for the discharge’s admission to hospice care. All other diagnoses are secondary diagnoses.

3Includes a small number of discharges for which the primary diagnosis is unknown.

NOTES: Numbers may not add to totals because of rounding. Percents are based on the unrounded figures.

Table 8. Number and percent distribution of hospice care discharges by primary admission diagnosis: United States, selected years

1992–2000

Diagnostic category and ICD–9–CM code1 1992 1994 1996 1998 2000

Number

All discharges ........................................... 219,300 328,000 393,200 496,000 621,100

Percent distribution

All discharges ........................................... 100.0 100.0 100.0 100.0 100.0

Malignant neoplasms ........................... 140–208,230–234 74.7 69.0 69.7 64.8 57.5

Malignant neoplasm of large intestine and rectum .......... 153–154,197.5 6.3 11.4 8.7 7.9 8.3

Malignant neoplasm of trachea, bronchus, and lung ....... 162,197.0,197.3 19.1 13.9 21.9 15.2 19.4

All other diagnoses ........................................ 25.3 31.0 30.3 35.2 42.5

Dementias .................................. 290,294,331.0 * * *2.9 3.0 6.3

Heart disease ............ 391–392.0,393–398,402,404,410–416,420–429 8.1 7.9 6.8 8.6 6.8

Congestive heart failure .............................. 428.0 *3.2 *3.3 3.0 4.4 3.8

Cerebrovascular disease ............................. 430–438 * *2.3 *2.2 2.6 4.8

Chronic obstructive pulmonary disease and allied conditions ....... 490–496 *2.3 *1.8 3.2 3.5 4.4

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).

NOTES: Numbers may not add to totals because of rounding. Percents are based on the unrounded figures.
Page 16 [ Series 13, No. 154

Table 9. Number and percent distribution of hospice care discharges not living in a health facility by length of service, according to

caregiver status: United States, 2000

Length of service in days

Percent distribution

Average Median

Number of Less than 30 days length length

Discharge characteristic discharges Total 30 days or more of service of service

All discharges ................................. 404,200 100.0 58.9 41.1 50.7 20.6

Primary caregiver status

Had primary caregiver ............................ 379,700 100.0 57.9 42.1 51.0 21.8

Had no primary caregiver or unknown .................. 24,400 100.0 *74.3 * *47.0 *7.0

Lived with primary caregiver1

Lived with caregiver .............................. 337,900 100.0 58.8 41.2 50.5 20.3

Did not live with caregiver or unknown .................. 41,800 100.0 51.2 48.8 54.5 *28.1

Relationship of primary caregiver to discharge1

Relative ..................................... 342,600 100.0 57.6 42.4 51.3 20.5

Spouse .................................... 186,000 100.0 66.7 33.3 41.7 14.9

Child/child-in-law .............................. 114,500 100.0 43.9 56.1 70.2 35.4

Other relative ................................ 42,000 100.0 54.3 45.7 42.1 *18.7

Nonrelative ................................... 37,100 100.0 61.5 38.5 48.1 23.8

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Includes only discharges with a primary caregiver.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.

Table 10. Number and percent distribution of hospice care discharges by length of service, according to primary admission diagnosis:

United States, 2000

Length of service in days

Percent distribution

Diagnostic category and ICD–9–CM code1

Number of

discharges Total

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

Total2 .............................................. 621,100 100.0 62.8 37.2 46.9 15.6

Malignant neoplasms ......................... 140–208,230–234 357,000 100.0 62.2 37.8 43.3 17.2

Malignant neoplasm of large intestine and rectum ........ 153–154,197.5 51,500 100.0 64.0 *36.0 32.9 *16.2

Malignant neoplasm of trachea, bronchus, and lung ..... 162,197.0,197.3 120,500 100.0 59.3 40.7 39.4 *18.6

All other diagnoses ...................................... 264,200 100.0 63.6 36.4 51.8 *12.2

Dementias ................................ 290,294,331.0 39,400 100.0 70.8 *29.2 44.9 *6.8

Heart disease ......... 391–392.0,393–398,402,404,410–416,420–429 42,500 100.0 55.7 44.3 61.2 20.8

Congestive heart failure ............................ 428.0 23,500 100.0 64.4 35.6 57.8 *14.6

Cerebrovascular disease ........................... 430–438 29,600 100.0 89.0 *11.0 16.1 3.8

Chronic obstructive pulmonary disease and allied conditions ..... 490–496 27,600 100.0 72.4 *27.6 *68.7 *14.4

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).

2Includes unknown diagnosis.

NOTES: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures.
Series 13, No. 154 [ Page 17

Appendix I 

Technical Notes

Data in this report are from the 

2000 National Home and Hospice Care 

Survey (NHHCS), the sixth in a series 

of surveys that was first conducted by 

the National Center for Health Statistics 

(NCHS) in 1992 (13). Other surveys 

were done in 1993, 1994, 1996, and 

1998. The NHHCS, a segment of the 

long-term care component of the 

National Health Care Survey (14), 

collects information about agencies that 

provide home health and hospice care 

services, their current patients, and their 

discharges. 

Scope of the Survey

The sampling frame for the NHHCS 

consists of agencies classified as 

providing home health or hospice care. 

These agencies were originally 

identified through the 1991 National 

Health Provider Inventory (NHPI). The 

NHPI is a comprehensive census of 

nursing and related care homes, 

residential care homes, home health 

agencies, and hospices and has been 

conducted periodically by NCHS 

(21,22). For the 1992, 1994, and 1996 

surveys, the NHPI was updated using 

the Agency Reporting System. This 

system consisted primarily of lists or 

directories of facilities from State 

agencies, Federal agencies, and national 

voluntary organizations (22–24). 

Starting with the 1998 NHHCS, the 

universe of home health agencies and 

hospices was obtained from various 

national organizations and other sources. 

The sampling frame for the 2000 

NHHCS consisted of 15,451 agencies 

and was obtained from two sources, the 

SMG Home Healthcare Market 

Database and the mailing list of 

members of the National Hospice and 

Palliative Care Organization (25,26). 

The methodology used to create the 

SMG file was similar to that used for 

the NHPI (obtaining lists of agencies 

directly from States). The SMG file may 

include agencies that provide both home 

health and hospice care, but does not 

include agencies that provide only 

hospice care. The agencies within these 

two sources were unduplicated prior to 

sample selection. The sample consisted 

of 1,800 agencies selected from this 

frame. 

Only agencies providing home 

health or hospice care services to 

patients at the time of the survey are 

eligible to participate in the NHHCS. Of 

the 1,800 agencies in the 2000 sample, 

1,478 (82 percent) were considered in 

scope for the survey. Of the 322 

out-of-scope agencies, 286 were not 

providing home health or hospice care 

services to patients at the time of the 

survey and 36 were duplicates of, or had 

merged with, other sampled agencies. 

Of the in-scope agencies, 1,425 

(96 percent) agreed to participate and 53 

(4 percent) refused. 

Sample Design

The sample design for the 2000 

NHHCS was a stratified two-stage 

probability design (27). The first stage 

consisted of the selection of a stratified 

sample of agencies. Each agency was 

placed into 1 of 24 strata based on type 

of agency (home health agencies, 

hospices, and mixed agencies), 

metropolitan statistical area (MSA) 

status (has an MSA code versus no 

code), and region (Northeast, Midwest, 

South, and West). MSA is defined by 

the U.S. Office of Management and 

Budget on the basis of the 1980 census. 

Within these sampling strata, agencies 

were arrayed by four types of ownership 

(for profit, nonprofit, government, and 

unknown), three types of certification 

status (certified by Medicare and/or 

Medicaid, not certified, and unknown), 

State, MSA code, county, ZIP code, and 

size (number of current patients). 

The second stage of sample 

selection, sampling of six current 

patients and six discharges within each 

agency, was done using a sample 

selection table to obtain systematic 

probability samples of current patients 

and of discharges. The patients and 

discharges were selected from lists 

constructed for each agency at the time 

of interview. Current patients were 

defined as those patients who were on 

the rolls of the agency as of midnight 

on the day immediately before the date 

of the survey. Discharges referred to 

those patients who were discharged 

from care by the home health agency or 

hospice during a designated month 

between October 1999 and September 

2000. Discharges that occurred because 

of the patient’s death were included. 

Data Collection and Processing

Data collection for the 2000 

NHHCS began with a letter sent to all 

sampled agencies informing the 

administrator of the authorizing 

legislation, purpose, and content of the 

survey. Each agency was then contacted 

by an interviewer to discuss the survey 

and to arrange an appointment with the 

administrator. Three questionnaires and 

two sampling lists were used to collect 

the data. The Agency Questionnaire was 

completed with the administrator or a 

person designated by the administrator. 

The interviewer then constructed the 

Current Patient Sampling List and the 

Discharged Patient Sampling List. These 

lists were used to select the sample 

patients and discharges. Sampling was 

accomplished by using tables showing 

sets of sample line numbers for each 

possible count of current patients and 

discharges in the agency. Up to six 

current patients and up to six discharges 

were selected. 

After the samples had been 

selected, the Current Patient 

Questionnaires and the Discharged 

Patient Questionnaires were completed 

for each sampled person by interviewing 

the staff member most familiar with the 

care provided to the patient. The 

respondent referred to patient medical 

and other records as necessary. No 

patient was interviewed directly. After 

the data had been collected, they were 

converted into machine-readable form. 

Extensive editing was then conducted by 

computer to ensure that all responses 

were accurate, consistent, logical, and 

complete. The medical information 

recorded on the patient questionnaires 

was coded according to the 

International Classification of Diseases,

9th Revision, Clinical Modification (15). 

Up to 12 diagnostic codes (a maximum 

of 6 at admission, and 6 at the time of 

survey or discharge) and up to 2 
Page 18 [ Series 13, No. 154

procedure codes were assigned for each 

sample patient or discharge. 

Estimation Procedure

Statistics presented in this report 

were derived by a multistage estimation 

procedure (28) that produces essentially 

unbiased national estimates and has the 

following three principal components: 

(a) inflation by the reciprocals of the 

probabilities of sample selection, (b) 

adjustment for nonresponse, and (c) 

ratio adjustment to fixed totals. 

Inflation by the reciprocals of the

probabilities of sample selection—There 

is a probability for each stage of 

sampling: (a) the probability of selecting 

the agency, and (b) the probability of 

selecting the patient or discharge within 

each agency. For example, the 

probability of selecting a discharge 

within an agency is the number of 

discharges selected divided by the total 

number of discharges from the agency 

within the designated month. The 

overall probability of selection is the 

product of the probabilities at each 

stage. This component is the inverse of 

the overall selection probability and is 

the basic inflation weight. 

Adjustment for nonresponse— 

NHHCS data were adjusted for three 

types of nonresponse. The first type 

occurred when an in-scope (NHHCS 

eligible) sample agency did not respond. 

The second type occurred when an 

agency did not complete the sampling 

lists used to select the patient or 

discharge samples. The third type 

occurred when the agency did not 

complete the questionnaire for a sample 

patient or discharge. The nonresponse 

adjustment brings estimates based only 

on the responding cases up to the level 

that would have been achieved if all 

eligible cases had responded. 

Ratio adjustment to fixed totals— 

Adjustments were made within each of 

four groups defined by region to adjust 

for over- or undersampling of agencies 

reported in the sampling frame. This 

adjustment is a multiplicative factor 

whose numerator was the number of 

agencies in the sampling frame within 

each region and whose denominator was 

the estimated number of agencies for 

that same group. 

Reliability of Estimates

Because the statistics presented here 

are based on a sample, they will differ 

somewhat from values that would have 

been obtained if a complete census had 

been taken using the same schedules, 

instructions, and procedures. As in any 

sample survey, the results are subject to 

both sampling and nonsampling errors. 

To the extent possible, the latter types of 

errors are kept to a minimum by 

methods built into survey procedures. 

Because survey results are subject to 

both sampling and nonsampling errors, 

the total error is larger than errors from 

sampling variability alone. 

The standard error (SE) is primarily 

a measure of the variability that occurs 

by chance because a sample, rather than 

the entire universe, is surveyed. The SE 

also reflects part of the measurement 

error, but it does not measure any 

systematic biases in the data. The 

chances are about 95 in 100 that an 

estimate from the sample differs from 

the value that would be obtained from a 

complete census by less than twice the 

SE. However, SEs typically 

underestimate the true errors of the 

statistics because they reflect only errors 

resulting from sampling. 

Standard errors in this report were 

approximated using SUDAAN software 

and are shown in tables I–X. SUDAAN 

computes SEs by using a first-order 

Taylor approximation of the deviation of 

estimates from their expected values. A 

description of the software and the 

approach it uses has been published 

(17). 

Presentation of Estimates

NCHS bases publication of 

estimates for the NHHCS on the relative 

standard error (RSE) of the estimate and 

the number of sample records on which 

the estimate is based (referred to as the 

sample size). The RSE is another 

measure of variability and is calculated 

by dividing the SE of an estimate by the 

estimate itself. The result is then 

converted into a percent by multiplying 

it by 100. Estimates are not presented in 

NCHS reports unless a reasonable 

assumption regarding the probability 

distribution of the sampling error is 

possible. Because of the complex 

sample design of the NHHCS, the 

following guidelines are used: 

+ If the sample size is less than 30, 

the value of the estimate is not 

reported. This is indicated with an 

asterisk (*). 

+ If the sample size is 30–59 or if the 

sample is 60 or more and the RSE 

is 30 percent or more, the estimate 

is reported, but should not be 

assumed reliable. This is indicated 

with an asterisk (*) preceding the 

figure in the tables. 

+ If the sample size is 60 or more and 

the RSE is less than 30 percent, the 

estimate is reported and is 

considered reliable. 

Definitions of Selected Terms

Activities of daily living (ADLs)— 

refers to a set of basic activities that a 

person must be able to perform to care 

for him/herself. The five ADLs used in 

this report are bathing, dressing, getting 

to and from and using the toilet room, 

transferring in and out of beds or chairs, 

and eating. 

Age—is the discharge’s age at the 

time of discharge and is calculated as 

the difference in years between the date 

of birth and the date of discharge. 

Continence status—refers to the 

ability to control one’s bladder or 

bowels. 

Incontinence—refers to discharges 

who are unable to control their 

bladder or bowels, and, for this 

report, had an indwelling urinary 

catheter or urostomy or a colostomy 

or ileostomy. 

Length of service —is the period of 

time from the date of the most recent 

admission to the date of discharge. 

Marital status—is the marital status 

at the time of discharge. 

Single—includes discharges who 

were not married, but it is unknown 

if the discharge was widowed, 

divorced, separated, or never 

married. 

Mobility status—is broadly defined 

to refer to both upper and lower body 
Series 13, No. 154

[ Page 19

facility of movement. Discharges with 

mobility limitation may also receive 

help with one or more ADLs and are 

categorized into one of three levels. 

Severe limitation—refers to 

discharges who received personal 

help from the agency with at least 

one of the following: transferring in 

or out of beds or chairs, walking, or 

using the toilet room. 

Moderate limitation—refers to 

discharges not included above, but 

who used at least one of the 

following aids: cane or crutches; 

geri-chairs, lift chairs, or other 

specialized chairs; transfer 

equipment; walker; or wheelchair 

(manual or motorized). 

Mild limitation—refers to 

discharges not included in the 

previous two levels, but who 

received personal help from the 

agency with bathing, showering, or 

dressing. It also includes discharges 

who used at least one of the 

following aids: bedside commode, 

elevated or raised toilet seat, grab 

bars, or shower chair or bath bench. 

Primary caregiver—is an individual 

who was responsible for providing 

personal care assistance, companionship, 

and/or supervision to the discharge. 

Primary source of payment—is the 

one payment source that paid the 

greatest amount of the discharge’s 

charge. 

Race—refers to the discharge’s 

racial background as reported by agency 

staff. Prior to 1998, only one race was 

recorded. Since 1998, more than one 

race may be recorded. In the tables in 

this report, the categories ‘‘White’’ and 

‘‘Black or African American’’ include 

only those discharges for whom that one 

race was reported. Discharges for whom 

more than one race was reported are 

included in the ‘‘all other races’’ 

category and are included in the 

category ‘‘Black or African American 

and all other races’’in the tables. 

Reason for discharge—is the reason 

the patient was discharged from hospice 

care. 

Services no longer needed from

agency—includes recovered, 

stabilized, treatment plan completed, 

no longer eligible for hospice care, 

and insurance no longer available. Transferred to inpatient care— 

includes transferred to hospital, 

nursing home, or other inpatient or 

residential care. 

Other—includes family or friends 

resumed care, transferred to another 

form of outpatient care, and moved 

out of area. 

Residence—is where the discharge 

was living during the episode of care 

before discharge. 

Private or semiprivateresidence— 

includes private residence (house or 

apartment, rented or owned), rented 

room or boarding house (open to 

anyone as defined by the landlord 

for rental payment), and retirement 

home (a facility that provides room 

and board to elderly or impaired 

persons). 

Board and care, assisted living, or residential care facility— includes a 

facility that has three beds or more 

and that provides personal care or 

supervision to its residents, not just 

room and board. Includes group 

home, foster home, rest home, 

congregate living, and adult foster 

care. 

Health facility—includes nursing 

home, hospital, mental health 

facility, or other facility or 

institution that provides lodging, 

board, and social and physical care 

including the recording of health 

information, dietary supervision, 

and supervised hygienic services for 

three or more patients not related to 

the operator. 
Page 20 [ Series 13, No. 154

Table I. Standard errors for number and percent distribution of hospice care discharges by length of service, according to selected patient

characteristics: United States, 2000

Length of service in days

Discharges Percent distribution

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

Percent

Discharge characteristic Number distribution

Total ..................................... 45,700 – 2.6 2.6 4.3 2.3

Sex

Male ..................................... 28,700 2.5 3.4 3.4 4.7 3.0

Female ................................... 25,800 2.5 3.6 3.6 6.3 3.9

Age at discharge

Under 65 years .............................. 16,500 2.1 6.0 6.0 12.1 4.3

65 years and over ............................. 37,000 2.1 2.8 2.8 4.4 3.0

65–74 years ............................... 15,500 2.1 4.6 4.6 6.3 4.5

75–84 years ............................... 17,700 2.3 4.9 4.9 7.2 4.2

85 years and over ........................... 19,400 2.4 5.6 5.6 6.6 *6.1

Race1

White .................................... 39,700 2.0 2.8 2.8 4.2 2.6

Black or African American and other races .............. 11,300 1.7 7.8 7.8 *22.3 3.7

Black or African American ...................... 9,900 1.5 9.3 9.3 *28.0 *5.8

Unknown .................................. 7,200 1.2 10.2 *10.2 5.8 *9.4

Marital status at discharge

Married ................................... 26,900 2.8 3.3 3.3 4.4 2.7

Not married ................................. 26,700 2.7 4.3 4.3 7.6 4.3

Widowed ................................. 21,800 2.5 5.1 5.1 7.8 *6.0

Divorced or separated ......................... 7,200 1.2 10.5 10.5 *37.9 *11.9

Single or never married ........................ 7,900 1.3 8.6 8.6 6.6 *5.9

Unknown .................................. 9,200 1.5 *9.2 *9.2 9.2 *14.9

Primary source of payment

Medicare .................................. 37,100 2.3 2.9 2.9 4.4 3.0

All other sources ............................. 17,100 2.3 5.8 5.8 11.9 *3.9

Medicaid ................................. 7,200 1.1 8.1 *8.1 4.7 *4.3

Private2 .................................. 13,200 1.9 8.2 8.2 *18.7 *6.5

Other3 ................................... 4,500 0.8 7.9 *7.9 10.9 *4.6

Reason for discharge

Died ..................................... 41,900 2.1 2.5 2.5 4.5 1.9

Did not die ................................. 13,500 2.1 8.1 8.1 10.3 *17.9

Services no longer needed from agency4 ............. 11,000 1.8 *12.5 12.5 16.3 16.9

Transferred to inpatient care5 .................... 3,800 0.6 * *12.6 20.1 20.2

Other and unknown .......................... 6,500 1.1 *11.7 *11.7 12.5 *9.5

– Quantity zero.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Prior to 1998 only one race was recorded. Since 1998, more than one race may be recorded. The categories ‘‘White’’ and ‘‘Black or African American’’ include only those discharges for whom that one

race was reported. Discharges for whom more than one race was reported are included in ‘‘Black or African American and other races.’’

2Includes private insurance, own income, family support, Social Security benefits, retirement funds, and welfare.

3Includes unknown source and no charge for care.

4Includes recovered, stabilized, treatment plan completed, no longer eligible for hospice care, or insurance coverage no longer available.

5Includes transferred to hospital, nursing home, or other inpatient or residental care.

NOTE: The standard error of 100.0 percent is zero.
Series 13, No. 154 [ Page 21

Table II. Standard errors for number and percent distribution of hospice care discharges by length of service, according to residence and

living arrangements: United States, 2000

Length of service in days

Discharges Percent distribution

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

Percent

Discharge characteristic Number distribution

Total .......................................... 45,700 – 2.6 2.6 4.3 2.3

Residence during care

Private or semiprivate residence1 ........................ 27,200 3.9 3.2 3.2 5.7 2.6

Board and care, assisted living, or residential care facility ......... 5,500 0.9 *13.2 *13.2 15.8 *21.8

Health facility (including mental health facility) ................ 34,100 4.1 4.4 4.4 6.0 1.6

Unknown ....................................... * * * * * *

Living arrangements of discharges not in a health facility2

Total .......................................... 28,500 – 3.0 3.0 5.5 2.6

Lived alone ...................................... 7,300 1.8 *10.9 10.9 13.6 *14.1

Lived with someone ................................. 26,600 2.0 3.2 3.2 6.1 2.6

Lived with family members ........................... 25,600 2.5 3.4 3.4 6.5 3.1

Lived only with nonfamily members ...................... 6,000 1.5 10.1 *10.1 9.1 *9.1

– Quantity zero.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Includes private residence, rented room, boarding house, and retirement home.

2Excludes those for whom living arrangements are unknown.

NOTE: The standard error of 100.0 percent is zero.

Table III. Standard errors for number and percent distribution of hospice care discharges by type of residence, according to caregiver

status: United States, 2000

Type of residence Type of residence

Discharge characteristic Total

Health

facility

All other and

unknown type Total

Health

faciity

All other and

unknown type

Number Percent distribution

All discharges .................................... 45,700 34,100 28,500 – – –

Primary caregiver status

Primary caregiver .................................. 44,100 33,200 27,600 1.8 4.1 1.7

No primary caregiver or unknown ........................ 10,800 8,100 6,700 1.8 *4.1 1.7

Discharges with primary caregiver ........................ 44,100 33,200 27,600 – – –

Lived with primary caregiver

Yes ........................................... 31,600 18,100 26,200 3.5 7.4 2.0

No or unknown ................................... 24,600 23,700 7,300 3.5 7.4 2.0

Relationship of primary caregiver to discharge

Relative ........................................ 41,100 29,400 26,700 2.6 7.3 1.9

Spouse ....................................... 24,000 14,600 18,100 2.7 4.6 3.3

Child/child-in-law ................................. 20,100 14,800 13,600 2.4 4.6 3.0

Other relative ................................... 9,600 *3,900 8,800 1.6 *1.9 2.3

Nonrelative ...................................... 14,200 12,400 6,900 2.6 7.3 1.9

Hired by discharge/staff of residential facility ................ 12,600 11,900 *4,300 2.3 7.7 *1.2

Other nonrelative or unknown ......................... 6,600 * 5,500 1.2 * 1.6

– Quantity zero.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.
Page 22 [ Series 13, No. 154

Table IV. Standard errors for number and percent of hospice care discharges and percent distribution by length of service, according to

services received during the 30 days prior to discharge: United States, 2000

Length of service in days

Discharges Percent distribution

Less than

30 days

30 days

or more

Average

length

of service

Median

length

Service received of service 1 Number Percent

All discharges .................................... 45,700 . . . 2.6 2.6 4.3 2.3

Medical and skilled nursing

Skilled nursing .................................... 43,500 1.5 2.8 2.8 4.6 2.7

Physician ....................................... 30,700 4.0 5.3 5.3 5.3 4.0

Equipment and medication

Medications ...................................... 36,400 3.5 3.2 3.2 6.3 2.8

Durable medical equipment and supplies ................... 26,000 3.0 3.3 3.3 4.2 3.3

Personal care

Homemaker-household or personal care2 ................... 35,300 3.1 3.3 3.3 4.8 2.8

Companion or volunteer2 ............................. 22,100 2.9 4.9 4.9 7.9 7.7

Continuous home care ............................... 4,800 0.9 9.6 9.6 9.4 12.2

Psychosocial

Referral or social2 .................................. 40,900 2.9 3.3 3.3 4.3 3.1

Pastoral or spiritual care2 ............................. 38,300 3.5 3.7 3.7 4.6 3.5

Counseling or psychological2 ........................... 19,400 3.3 4.0 4.0 5.3 4.0

Respite care ..................................... 9,900 1.7 *9.8 9.8 17.6 *11.2

Other

High-tech care 2,3 .................................. 19,000 2.6 6.8 6.8 14.5 *7.3

Other2,4 ........................................ 25,000 3.1 6.0 6.0 7.2 *10.1

Number of services received

0–25 .......................................... 14,400 2.2 5.8 5.8 6.1 *1.6

3–5 ........................................... 24,600 3.2 4.4 4.4 8.9 4.2

6–8 ........................................... 18,500 2.5 4.4 4.4 5.6 2.9

9 or more ....................................... 19,200 2.7 7.3 7.3 6.6 *8.7

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2A discharge is counted only once even though it may have received more than one type of service in this category.

3Includes enterostomal therapy, IV therapy, respiratory therapy, and other high-tech care such as enteral nutrition or dialysis.

4Includes dental treatment services, dietary and/or nutritional services, Meals on Wheels, occupational therapy, physical therapy, speech therapy and/or audiology, transportation, vocational therapy, and other

services.

5Includes a small number of discharges for whom no services were reported.

NOTE: The standard error of 100.0 percent is zero.
Series 13, No. 154 [ Page 23

Table V. Standard errors for number and percent of hospice care discharges and percent distribution by length of service, according to

service providers seen during the 30 days prior to discharge: United States, 2000

Length of service in days

Discharges Percent distribution

Less than

30 days

30 days

or more

Average

length

of service

Median

length

Provider seen Number Percent of service

All discharges .................................... 45,700 . . . 2.6 2.6 4.3 2.3

Type of provider1

Nurses2,3 ....................................... 45,700 0.9 2.6 2.6 4.4 2.6

Social workers/mental health specialists2 ................... 40,900 2.8 2.9 2.9 3.6 2.8

Home health aides/nursing aides/attendants2 ................. 38,900 3.0 3.4 3.4 4.7 3.1

Chaplains ....................................... 37,000 3.6 3.8 3.8 4.5 3.6

Volunteers ...................................... 23,000 3.0 5.3 5.3 8.2 7.9

Physicians ...................................... 32,600 4.5 5.4 5.4 5.5 *3.5

Homemakers/personal caretakers ........................ 6,800 1.2 5.8 5.8 17.0 *6.0

Other2,4 ........................................ 22,300 3.0 7.6 7.6 6.5 *7.0

Number of providers seen

0–15 .......................................... 11,900 2.0 7.2 *7.2 *22.5 *4.0

2 ............................................ 12,900 2.1 6.8 6.8 6.4 *3.6

3 ............................................ 16,300 2.5 6.0 6.0 11.3 5.3

4 ............................................ 13,100 2.1 5.8 5.8 6.9 7.1

5 or more ....................................... 33,100 4.0 5.0 5.0 5.8 4.4

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2A discharge is counted only once even though it may have been seen by more than one type of provider in this category.

3 Includes registered, licensed practical, and vocational nurses.

4Includes dietitians or nutritionists, occupational therapists, physical therapists, respiratory therapists, speech pathologists or audiologists, and other providers.

5Includes a small number of discharges for whom no providers were reported.

NOTE: The standard error of 100.0 percent is zero.
Table VI. Standard errors for number and percent of hospice care discharges and percent distribution by length of service, according to

selected types of functional status: United States, 2000

Functional status

Discharges

Length of service in days

Percent distribution

Number Percent

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

All discharges . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45,700 . . . 2.6 2.6 4.3 2.3

Received help from agency with ADLs1,2

Bathing or showering . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35,700 2.6 3.3 3.3 4.5 3.1

Dressing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32,500 3.0 3.4 3.4 5.2 3.0

Eating . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26,600 3.5 5.2 5.2 7.8 4.2

Transferring in or out of beds or chairs . . . . . . . . . . . . . . . . . . . . . 27,800 2.8 3.4 3.4 5.9 3.6

Using the toilet room . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23,300 2.9 4.3 4.3 7.3 4.5

Functional status in ADLs2

Received no help from agency with ADLs3 . . . . . . . . . . . . . . . . . . 20,100 2.7 4.4 4.4 9.6 *2.2

Received help from agency with 1 or more ADLs . . . . . . . . . . . . . . 36,500 2.7 3.2 3.2 4.4 3.0

Received help with: .................................

1 ADL . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6,900 1.2 11.4 11.4 6.8 *12.3

2 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15,900 2.5 8.9 8.9 7.0 *6.8

3 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13,800 1.8 6.8 6.8 6.8 *7.7

4 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13,400 2.0 5.4 5.4 9.0 3.8

5 ADLs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18,300 2.7 5.8 5.8 10.8 *7.3

Continence status

Continent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21,600 2.7 4.1 4.1 6.2 4.8

Incontinent4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34,400 2.7 2.9 2.9 5.0 2.5

Only bladder incontinence or device5 . . . . . . . . . . . . . . . . . . . . 18,700 2.8 6.2 6.2 8.5 *6.1

Only bowel incontinence or device6 . . . . . . . . . . . . . . . . . . . . . 9,600 1.5 *10.3 *10.3 5.9 7.3

Both bladder and bowel incontinence or device 5,6 . . . . . . . . . . . . 24,700 3.1 3.6 3.6 6.8 2.8

Mobility status

No mobility limitation3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17,900 2.6 5.5 5.5 *14.1 *1.7

Mobility limitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39,100 2.6 3.0 3.0 4.2 3.2

Limitation level:

Mild . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17,700 2.5 7.7 7.7 6.2 *2.3

Moderate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9,800 1.8 6.0 6.0 7.5 5.4

Severe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28,300 2.8 3.3 3.3 5.6 3.4

Use of selected aids or devices

No aids or devices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12,900 2.1 5.8 5.8 7.8 5.8

Aids or devices1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42,200 2.1 2.8 2.8 4.7 2.3

Hospital bed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39,200 2.6 3.2 3.2 5.1 2.4

Oxygen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29,100 2.9 3.2 3.2 3.9 3.0

IV therapy equipment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11,500 1.7 12.3 *12.3 *31.6 *14.7

Enteral feeding equipment . . . . . . . . . . . . . . . . . . . . . . . . . . . 4,500 0.8 *6.2 *6.2 10.7 *22.9

. . . Category not applicable.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1A discharge may be included in more than one category.

2ADL is activity of daily living.

3Includes an unknown number of discharges who were bedbound or received help only from nonagency persons.

4Includes an indwelling urinary catheter or urostomy, a colostomy or ileostomy, or difficulty controlling the bladder or bowels.

5Bladder incontinence or device includes an indwelling urinary catheter or urostomy or difficulty controlling the bladder.

6Bowel incontinence or device includes a colostomy or ileostomy or difficulty controlling the bowels.

NOTE: The standard error of 100.0 percent is zero.

Page 24 [ Series 13, No. 154
Series 13, No. 154 [ Page 25

Table VII. Standard errors for number and percent distribution of diagnoses for hospice care discharges by primary or secondary

diagnosis, according to diagnostic category: United States, 2000

Type of diagnosis2 Type of diagnosis2

All All

Diagnostic category and ICD–9CM code1 diagnoses Primary Secondary diagnoses Primary Secondary

Number Percent distribution

All diagnoses3 ........................................... 145,100 45,700 104,900 – – –

Malignant neoplasms ........................... 140–208,230–234 58,500 29,600 33,400 2.6 2.5 2.9

Malignant neoplasm of large intestine and rectum .......... 153–154,197.5 14,300 11,200 * 0.9 1.7 *

Malignant neoplasm of trachea, bronchus, and lung ....... 162,197.0,197.3 19,200 13,700 11,000 0.9 1.8 *1.2

All other diagnoses ........................................ 104,400 25,000 84,200 2.6 2.5 2.9

Diabetes mellitus ..................................... 250 11,800 * 11,800 0.7 * 1.2

Dementias ................................... 290,294,331.0 13,500 9,100 9,600 0.8 1.5 1.1

Heart disease ............ 391–392.0,393–398,402,404,410–416,420–429 14,900 6,200 13,200 0.9 1.1 1.5

Congestive heart failure .............................. 428.0 8,200 4,200 6,800 0.5 0.7 0.8

Cerebrovascular disease ............................. 430–438 21,500 8,500 18,900 1.2 1.4 1.9

Chronic obstructive pulmonary disease and allied conditions ....... 490–496 12,400 6,500 10,400 0.7 1.0 1.1

– Quantity zero.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).

2The primary diagnosis is the diagnosis most responsible for the discharge’s admission to hospice care. All other diagnoses are secondary diagnoses.

3Includes a small number of discharges for which the primary diagnosis is unknown.

Table VIII. Standard errors for number and percent distribution of hospice care discharges by primary admission diagnosis: United States,

selected years 1992–2000

Diagnostic category and ICD–9–CM code1 1992 1994 1996 1998 2000

Number

All discharges ............................................. 15,100 22,300 31,700 43,400 45,700

Percent distribution

All discharges ............................................. – – – – –

Malignant neoplasms .............................. 140–208,230–234 2.1 2.4 2.4 2.5 2.5

Malignant neoplasm of large intestine and rectum ............. 153–154,197.5 0.9 2.3 1.7 1.5 1.7

Malignant neoplasm of trachea, bronchus, and lung .......... 162,197.0,197.3 2.3 1.4 2.1 1.5 1.8

All other diagnoses .......................................... 2.1 2.4 2.4 2.5 2.5

Dementias ..................................... 290,294,331.0 * * *1.2 0.6 1.5

Heart disease .............. 391–392.0,393–398,402,404,410–416,420–429 1.6 1.8 1.3 1.6 1.1

Congestive heart failure ................................ 428.0 *0.9 *0.9 0.8 1.3 0.7

Cerebrovascular disease ............................... 430–438 * *0.8 *0.6 0.6 1.4

Chronic obstructive pulmonary disease and allied conditions ......... 490–496 *0.7 *0.4 0.9 0.9 1.0

– Quantity zero.

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).
Page 26 [ Series 13, No. 154

Table IX. Standard errors for number and percent distribution of hospice care discharges not living in a health facility by length of service,

according to caregiver status: United States, 2000

Length of service in days

Percent distribution

Average Median

Number of Less than 30 days length length

Discharge characteristic discharges 30 days or more of service of service

All discharges ................................. 28,500 3.0 3.0 5.5 2.6

Primary caregiver status

Had primary caregiver ............................ 27,600 3.1 3.1 5.7 2.7

Had no primary caregiver or unknown .................. 6,700 *8.8 * *16.9 *5.9

Lived with primary caregiver1

Lived with caregiver .............................. 26,200 3.4 3.4 6.4 2.9

Did not live with caregiver or unknown .................. 7,300 9.5 9.5 8.6 *11.3

Relationship of primary caregiver to discharge1

Relative ..................................... 26,700 3.3 3.3 6.2 3.3

Spouse .................................... 18,100 4.2 4.2 5.6 2.9

Child/child-in-law .............................. 13,600 5.9 5.9 15.0 6.4

Other relative ................................ 8,800 9.6 9.6 8.1 *13.8

Nonrelative ................................... 6,900 9.6 9.6 8.8 5.5

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1 Includes only discharges with a primary caregiver.

NOTE: The standard error of 100.0 percent is zero.

Table X. Standard errors for number and percent distribution of hospice care discharges by length of service, according to primary

admission diagnosis: United States, 2000

Length of service in days

Percent distribution

Diagnostic category and ICD–9–CM1

Number of

discharges

Less than

30 days

30 days

or more

Average

length

of service

Median

length

of service

Total2 .............................................. 45,700 2.6 2.6 4.3 2.3

Malignant neoplasms ......................... 140–208,230–234 29,600 3.2 3.2 4.1 2.5

Malignant neoplasm of large intestine and rectum ........ 153–154,197.5 11,200 10.9 *10.9 6.3 *9.4

Malignant neoplasm of trachea, bronchus, and lung ..... 162,197.0,197.3 13,700 5.9 5.9 4.7 *6.6

All other diagnoses ...................................... 25,000 4.3 4.3 7.5 *4.5

Dementias ................................ 290,294,331.0 9,100 8.8 *8.8 12.9 *5.9

Heart disease ......... 391–392.0,393–398,402,404,410–416,420–429 6,200 7.7 7.7 10.7 5.9

Congestive heart failure ............................ 428.0 4,200 7.9 7.9 13.6 *6.8

Cerebrovascular disease ........................... 430–438 8,500 4.4 *4.4 4.7 1.0

Chronic obstructive pulmonary disease and allied conditions ..... 490–496 6,500 9.1 *9.1 *22.4 *7.2

* Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample

size is 30–59 or is greater than 59, but has a relative standard error of 30 percent or more.

1Based on the International Classification of Diseases, 9th Revision, Clinical Modification (15).

2Includes unknown diagnosis.

NOTE: The standard error of 100.0 percent is zero.
Series 13, No. 154

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Appendix II 

Discharged Patient

Questionnaire
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Vital and Health Statistics

series descriptions

SERIES 1. Programs and Collection Procedures—These reports

describe the data collection programs of the National Center

for Health Statistics. They include descriptions of the methods

used to collect and process the data, definitions, and other

material necessary for understanding the data.

SERIES 2. Data Evaluation and Methods Research—These reports

are studies of new statistical methods and include analytical

techniques, objective evaluations of reliability of collected

data, and contributions to statistical theory. These studies also

include experimental tests of new survey methods and

comparisons of U.S. methodology with those of other

countries.

SERIES 3. Analytical and Epidemiological Studies—These reports

present analytical or interpretive studies based on vital and

health statistics. These reports carry the analyses further than

the expository types of reports in the other series.

SERIES 4. Documents and Committee Reports—These are final

reports of major committees concerned with vital and health

statistics and documents such as recommended model vital

registration laws and revised birth and death certificates.

SERIES 5. International Vital and Health Statistics Reports—These

reports are analytical or descriptive reports that compare U.S.

vital and health statistics with those of other countries or

present other international data of relevance to the health

statistics system of the United States.

SERIES 6. Cognition and Survey Measurement—These reports are

from the National Laboratory for Collaborative Research in

Cognition and Survey Measurement. They use methods of

cognitive science to design, evaluate, and test survey

instruments.

SERIES 10. Data From the National Health Interview Survey—These

reports contain statistics on illness; unintentional injuries;

disability; use of hospital, medical, and other health services;

and a wide range of special current health topics covering

many aspects of health behaviors, health status, and health

care utilization. They are based on data collected in a

continuing national household interview survey.

SERIES 11. Data From the National Health Examination Survey, the

National Health and Nutrition Examination Surveys, and

the Hispanic Health and Nutrition Examination Survey—

Data from direct examination, testing, and measurement on

representative samples of the civilian noninstitutionalized

population provide the basis for (1) medically defined total

prevalence of specific diseases or conditions in the United

States and the distributions of the population with respect to

physical, physiological, and psychological characteristics, and

(2) analyses of trends and relationships among various

measurements and between survey periods.

SERIES 12. Data From the Institutionalized Population Surveys—

Discontinued in 1975. Reports from these surveys are

included in Series 13.

SERIES 13. Data From the National Health Care Survey—These

reports contain statistics on health resources and the public’s

use of health care resources including ambulatory, hospital,

and long-term care services based on data collected directly

from health care providers and provider records.

SERIES 14. Data on Health Resources: Manpower and Facilities—

Discontinued in 1990. Reports on the numbers, geographic

distribution, and characteristics of health resources are now

included in Series 13.

SERIES 15. Data From Special Surveys—These reports contain

statistics on health and health-related topics collected in

special surveys that are not part of the continuing data

systems of the National Center for Health Statistics.

SERIES 16. Compilations of Advance Data From Vital and Health

Statistics—Advance Data Reports provide early release of

information from the National Center for Health Statistics’

health and demographic surveys. They are compiled in the

order in which they are published. Some of these releases

may be followed by detailed reports in Series 10–13.

SERIES 20. Data on Mortality—These reports contain statistics on

mortality that are not included in regular, annual, or monthly

reports. Special analyses by cause of death, age, other

demographic variables, and geographic and trend analyses

are included.

SERIES 21. Data on Natality, Marriage, and Divorce—These reports

contain statistics on natality, marriage, and divorce that are

not included in regular, annual, or monthly reports. Special

analyses by health and demographic variables and

geographic and trend analyses are included.

SERIES 22. Data From the National Mortality and Natality Surveys—

Discontinued in 1975. Reports from these sample surveys,

based on vital records, are now published in Series 20 or 21.

SERIES 23. Data From the National Survey of Family Growth—These

reports contain statistics on factors that affect birth rates,

including contraception, infertility, cohabitation, marriage,

divorce, and remarriage; adoption; use of medical care for

family planning and infertility; and related maternal and infant

health topics. These statistics are based on national surveys

of women of childbearing age.

SERIES 24. Compilations of Data on Natality, Mortality, Marriage,

Divorce, and Induced Terminations of Pregnancy—

These include advance reports of births, deaths, marriages,

and divorces based on final data from the National Vital

Statistics System that were published as supplements to the

National Vital Statistics Report (NVSR). These reports provide

highlights and summaries of detailed data subsequently

published in Vital Statistics of the United States. Other

supplements to the NVSR published here provide selected

findings based on final data from the National Vital Statistics

System and may be followed by detailed reports in Series 20

or 21.

For answers to questions about this report or for a list of reports published

in these series, contact:

Data Dissemination Branch

National Center for Health Statistics

Centers for Disease Control and Prevention

3311 Toledo Road, Room 5412

Hyattsville, MD 20782

(301) 458–4636

E-mail: nchsquery@cdc.gov

Internet: www.cdc.gov/nchs
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DHHS Publication No. (PHS) 2003-1725, Series 13, No. 154

03-0313 (08/03)