NCHS Data Brief ■ No. 54 ■ January 2011

u.s. department of health and human services

Centers for Disease Control and Prevention

National Center for Health Statistics

Use of Advance Directives in Long-term Care Populations

Adrienne L. Jones, Abigail J. Moss, and Lauren D. Harris-Kojetin, Ph.D.

Division of Health Care Statistics

Key findings

Data from the 2004 National 

Nursing Home Survey and 

the 2007 National Home and 

Hospice Care Survey

•	 Overall, 28% of home 

health care patients, 65% of 

nursing home residents, and 

88% of discharged hospice 

care patients had at least one 

advance directive (AD) 

on record.

•	 The most common types 

of ADs among home health 

care patients, nursing home 

residents, and discharged 

hospice care patients were 

living wills and do not 

resuscitate orders.

•	 Care recipients under age 65 

years were less likely to have 

any AD than those aged 85 

and over; black care recipients 

were less likely than white 

care recipients to have any AD 

in all three populations. These 

age and racial differences were 

larger in the home health care 

and nursing home populations 

than in the hospice care 

population.

An advance directive (AD) allows a patient to communicate health care 

preferences in the event that he or she is no longer able to make these 

decisions (1). Many view advance care planning (ACP)—a process that 

includes discussing values and goals of care among the patient, family, and 

physician, and determining or executing treatment directives—as a way to 

help ensure that wishes about end-of-life care are honored (2). Ideally, ADs 

are part of the ACP process. Twenty years ago, Congress passed the Patient 

Self-Determination Act (PSDA) requiring most health care facilities to inform 

adult patients about their rights to execute an AD (2). Research indicates that 

the preference for having an AD can be influenced by individual attitudes,

cultural beliefs, health conditions, and trust in health care professionals (2–9). 

This report presents the latest national data on ADs in three long-term care 

populations—those receiving home health care or hospice care and those 

residing in nursing homes. 

Keywords: patient self-determination act • advance care planning • aging • 

end of life

Use of ADs varies across long-term care populations.

SOURCES: CDC/NCHS, National Nursing Home Survey, 2004, and National Home and Hospice Care Survey, 2007.

Figure 1. Percentage of home health care patients, nursing home residents, and discharged 

hospice care patients with any advance directive: United States, 2004 and 2007

88

65

28

Discharged hospice

care patients 

Nursing home

residents

Home health

care patients

Percent

0

20

40

60

80

100

95% confidence interval
NCHS Data Brief ■ No. 54 ■ January 2011

■  2  ■

•	 Among the three long-term care populations, having at least one AD in the medical record 

was highest among discharged hospice care patients (88%) and lowest among home health 

care patients (28%), with 65% of nursing home residents having at least one AD (Figure 1).

Use of ADs varies by age, and age relationships differ by population.

•	 Among home health care and nursing home populations, those aged 85 years and over

were more than twice as likely as those under age 65 to have an AD—41% compared

with 17% for home health care patients and 77% compared with 36% for nursing home

residents (Figure 2). 

•	 Age differences existed among discharged hospice care patients, but they were less 

pronounced than in other settings—93% of those aged 85 and over compared with

81% of those under age 65. 

1

Age at interview.

2

Age at discharge.

SOURCES: CDC/NCHS, National Nursing Home Survey, 2004, and National Home and Hospice Care Survey, 2007.

Figure 2. Percentage of home health care patients, nursing home residents, and discharged hospice care patients with 

any advance directive, by age: United States, 2004 and 2007

20

40

60

80

100

0

Nursing home

residents1

Home health 

care patients1

Discharged hospice 

care patients2

Percent

95% confidence interval Under age 65 65–74 75–84 Aged 85 and over

36

51

65

77

17

24

33

41

81 84

89

93

Black care recipients were less likely than white care recipients to use

any AD.

•	 Black care recipients were half as likely to have an AD when compared with white care 

recipients in the home health care (13% compared with 32%) and nursing home (35% 

compared with 70%) populations (Figure 3).

•	 In the hospice care setting, black care recipients (80%) were also less likely than white

care recipients (89%) to have an AD; however, the differences were smaller.
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Living wills and do not resuscitate orders were the two most common 

types of ADs.

•	 Do not resuscitate (DNR) orders were more common than living wills among nursing home 

residents (56% compared with 18%) and discharged hospice care patients (82% compared 

with 26%) (Figures 4 and 5). In contrast, DNR orders (7%) were less common than living 

wills (17%) among home health care patients.
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•	 Living wills and DNR orders were more prevalent among discharged hospice care patients 

than among home health care patients and nursing home residents. These differences were 

similar to those found for having any advance directive (Figure 1). 

•	 Those aged 65 and over were more likely than their younger counterparts to have living 

wills in the nursing home (20% compared with 7%) and home health care populations 

(21% compared with 10%), and to have DNR orders among nursing home residents (60% 

compared with 28%) (Figures 4 and 5). Within the hospice care population, those aged 65 

and over were also more likely than their younger counterparts to have living wills (27% 

compared with 19%) and DNR orders (84% compared with 72%), but the contrast was not 

as large as in the nursing home and home health care populations. 

•	 White nursing home residents (20%) were three times as likely as black residents (6%) 

to have living wills and two times as likely (61%) as black residents (28%) to have DNR 

orders (not shown). Among the hospice care population, white patients (83%) were more 

likely than black patients (71%) to have DNR orders (not shown). The prevalence of living 

wills or DNRs among black home health care patients and the prevalence of living wills 

among black discharged hospice care patients are not reported because they did not meet 

standards of reliability.
NCHS Data Brief ■ No. 54 ■ January 2011

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Summary 

Previous studies have found that 20 years after the PSDA was passed, population-based 

prevalence estimates of completed advance directives among adults in the United States range 

from 5% to 15% (10,12). However, this study found a higher prevalence of advance directives 

among adults in all three long-term care populations compared with the overall U.S. adult 

population. The extent to which the PSDA has influenced this higher prevalence among longterm care populations is an important area for formal evaluation. The data about nursing home 

residents are from 2004 and, therefore, may not reflect the current situation.

This analysis also found that having an AD is associated with the type of long-term care received. 

Nursing home residents and discharged hospice care patients were more than twice as likely 

as home health care patients to have an AD on record. This seems logical given that the vast 

majority of discharged hospice care patients in 2007 had the Medicare hospice benefit that

requires a physician to certify the patient has a life expectancy of 6 months or less. Further, both 

nursing home residents and hospice care patients on average are more likely to die sooner than 

people receiving home health care. Given that nearly 90% of discharged hospice care patients had 

ADs, most hospice care patients appear aware of their rights to execute an AD. 

Among the home health care and nursing home populations, those aged 65 and over were more 

likely than their younger counterparts to have an AD. This finding mirrors the age difference

in advance directive completion found in the broader population. One study found that 37% of 

community-dwelling older adults had completed an advance directive; this compares with 5% to 

15% of all community-dwelling adults (12). This finding may reflect higher rates of disability and

chronic conditions among persons aged 65 and over, which may potentially make people more 

likely to consider their end-of-life care preferences. 

Black care recipients were less likely than white care recipients to have any AD across all three 

long-term care populations. Previous, smaller-scale studies have identified differences between

white adults and black adults in the use of ADs and explored potential reasons for them. These 

reasons include lower levels of awareness about ADs among African-American adults compared 

with white adults; different attitudes toward ADs among providers serving different populations; 

and beliefs and values among African-American persons that may contribute to these differences, 

including greater preferences for life-sustaining therapies, less comfort discussing death, and 

greater distrust of the health care system (1,4,6,8,9,11). Because religious beliefs may affect 

perceptions of ADs, a potentially important area for future research is the role of religion in AD 

use and how that may vary among populations. By presenting the first national look at racial

differences in use of ADs across long-term care populations, this report highlights the importance 

of research to give long-term care providers the information needed to implement the PSDA in 

culturally sensitive ways.

Definitions

Home health care patient: A patient on the home health care agency’s roster as of midnight the 

night before the interview.

Nursing home resident: A resident on the nursing home’s roster as of the night before the 

interview. Included were all residents for whom beds were maintained, even though they might 

have been away on overnight leave or in a hospital.
NCHS Data Brief ■ No. 54 ■ January 2011

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Discharged hospice care patient: A patient formally discharged from care by the hospice agency 

during a designated 3-month reference period prior to the month of the interview. Both live and 

dead discharges were included. A patient might be represented more than once in the data if the 

patient was discharged more than once in the prior 12 months; therefore, discharges represent 

episodes of care rather than patients.

Age at time of interview: Variable used to calculate age for home health care patients and nursing 

home residents.

Age at time of discharge: Variable used to calculate age for discharged hospice care patients. 

Race: The patient’s or resident’s race as reported by agency or facility staff. The race categories in 

this report are white and black. 

Home health care: A range of medical and therapeutic services as well as other services delivered 

at a patient’s home or in a residential setting for the purpose of promoting, maintaining, or 

restoring health, or maximizing the level of independence, while minimizing the effects of 

disability and illness, including terminal illness.

Hospice care: Focused on relieving pain and uncomfortable symptoms of persons with terminal 

illness and providing emotional and spiritual support to both the terminally ill and their families.

Living will: A written document that allows a person to state in advance his or her wishes 

regarding the use or removal of life-sustaining procedures in the event of illness or injury.

Do not resuscitate (DNR) order: A written order from a doctor that resuscitation should not be 

attempted if a person suffers cardiac or respiratory arrest. A DNR order may be instituted on the 

basis of an AD from a patient or from someone entitled to make decisions on the patient’s behalf, 

such as a health care proxy. 

Data sources, methods, and limitations 

Data for these analyses come from the 2004 National Nursing Home Survey (NNHS) resident 

file and the 2007 National Home and Hospice Care Survey (NHHCS) current patient and

discharge file. The 2004 NNHS and 2007 NHHCS are periodic cross-sectional surveys of

nationally representative samples of U.S. nursing homes, home health agencies, and hospice 

care organizations. For more information on these surveys, visit http://www.cdc.gov/nchs/nnhs/

about_nnhs.htm for NNHS and http://www.cdc.gov/nchs/nhhcs/about_nhhcs.htm for NHHCS.

To measure “any advance directive,” the analyses for Figures 1–3 included all AD types 

collected—all six common to NNHS and NHHCS as well as ones unique to each survey. ADs 

common to both NNHS and NHHCS are living will, DNR order, do not hospitalize, feeding 

restrictions, medical restrictions, and organ donation. In addition to the six common types of ADs, 

NNHS collected one other type of AD—autopsy; less than 1% requested an autopsy. NHHCS 

collected three other types of ADs—durable power of attorney, health care proxy/surrogate, and 

comfort measures. For home health care patients, 14% requested power of attorney, 5% requested 

health care proxy/surrogate, and less than 1% requested comfort measures. For discharged 

hospice care patients, 36% requested power of attorney, 16% requested health care proxy, and 

12% requested comfort measures.
NCHS Data Brief ■ No. 54 ■ January 2011

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Differences between subgroups were evaluated with two-tailed t tests using p <0.05 as the level 

of significance. All comparisons reported in the text are statistically significant unless otherwise

indicated. Data analyses were performed using SAS version 9.1 (SAS Institute, Cary, N.C.) and 

SUDAAN version 9.0 (RTI, Research Triangle Park, N.C.). 

About the authors

Adrienne L. Jones, Abigail J. Moss, and Lauren D. Harris-Kojetin are with the Centers for 

Disease Control and Prevention’s National Center for Health Statistics, Division of Health

Care Statistics.

References

1. Smith AK, McCarthy EP, Paulk E, Balboni TA, Maciejewski PK, Block SD, Prigerson HG. 

Racial and ethnic differences in advance care planning among patients with cancer: Impact of 

terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol 26 

(25):4131–7. 2008.

2. U.S. Department of Health and Human Services; Office of the Assistant Secretary for

Planning and Evaluation; Office of Disability, Aging and Long-Term Care Policy. Advance

directives and advance care planning: Report to Congress. 2008. Available from: http://aspe.hhs.

gov/daltcp/reports/2008/ADCongRpt.pdf. Accessed August 9, 2010.

3. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives 

and quality of end-of-life care: A national study. J Am Geriatr Soc 55(2):189–94. 2007.

4. Troyer JL, McAuley WJ. Environmental contexts of ultimate decisions: Why white nursing 

home residents are twice as likely as African American residents to have an advance directive. J 

Gerontol B Psychol Sci Soc Sci 61(4):S194–S202. 2006.

5. Resnick HE, Schuur JD, Heineman J, Stone R, Weissman JS. Advance directives in nursing 

home residents aged ≥ 65 years: United States 2004. Am J Hosp Palliat Care. Sage Publications

DOI 10.1177/1049909108322295:1–7 (online). 2008.

6. Bergman-Evans B, Kuhnel L, McNitt D, Myers S. Uncovering beliefs and barriers: Staff 

attitudes related to advance directives. Am J Hosp Palliat Care 25(5):347–53. 2008.

7. Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care 

setting: What do we need for success? J Am Geriatr Soc 55(2):277–83. 2007.

8. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of 

advance directives and attitudes toward hospice care? J Am Geriatr Soc 56(10):1953–8. 2008.

9. Ott BB. Views of African American nursing home residents and living wills. Geriatr Nurs 

29(2):117–24. 2008.

10. Sabatino C. Advance directives and advance care planning: Legal and policy issues. Report 

prepared for the U.S. Department of Health and Human Services; Assistant Secretary for Planning 

and Evaluation; Office of Disability, Aging and Long-Term Care Policy: Washington, DC. 2007.
NCHS Data Brief ■ No. 54 ■ January 2011

11. Wilkinson A, Wenger N, Shugarman LR. Literature review on advance 

directives. Report prepared for the U.S. Department of Health and Human 

Services; Assistant Secretary for Planning and Evaluation; Office of

Disability, Aging and Long-Term Care Policy: Washington, DC. 2007.

12. Kirschner KL. When written advance directives are not enough. Clin 

Geriatr Med 21(1):193–209. 2005.

Suggested citation

Jones AL, Moss AJ, Harris-Kojetin LD. 

Use of advance directives in long-term 

care populations. NCHS data brief, no 54. 

Hyattsville, MD: National Center for Health 

Statistics. 2011.

Copyright information

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the public domain and may be reproduced 

or copied without permission; citation as to 

source, however, is appreciated.

National Center for Health 

Statistics

Edward J. Sondik, Ph.D., Director

Jennifer H. Madans, Ph.D., Associate 

 Director for Science

Division of Health Care Statistics

Jane E. Sisk, Ph.D., Director

U.S. Department of

Health & Human Services

Centers for Disease Control and Prevention

National Center for Health Statistics

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