RESEARCH

IN ACTION

Agency for Healthcare Research and Quality • www.ahrq.gov

Introduction

Patient preferences are often not known

Predicting what treatments patients will want at the end of

life is complicated by the patient’s age, the nature of the

illness, the ability of medicine to sustain life, and the

emotions families endure when their loved ones are sick

and possibly dying. When seriously ill patients are nearing

the end of life, they and their families sometimes find it

difficult to decide on whether to continue medical treatment

and, if so, how much treatment is wanted and for how long.

In these instances, patients rely on their physicians or other

trusted health professionals for guidance. 

In the best of circumstances, the patient, the family, and the

physician have held discussions about treatment options,

including the length and invasiveness of treatment, chance

of success, overall prognosis, and the patient’s quality of

life during and after the treatment. Ideally, these

discussions would continue as the patient’s condition

changed. Frequently, however, such discussions are not

held. If the patient becomes incapacitated due to illness,

the patient’s family and physician must make decisions

based on what they think the patient would want. 

Research can help guide decisionmaking

This report is intended to show how physicians and other

health care professionals can help their patients with

advance care planning and assess patient preferences for

care at the end of life. Section 1 discusses research

findings from studies funded by the Agency for Healthcare

Research and Quality (AHRQ), as well as those from other

research. For readers who want more detailed information,

Section 2 contains charts and tables showing the

quantitative results of the studies supported by AHRQ.

While no one can predict exactly what patients will want or

need when they are sick or dying, this research can help

providers offer end-of-life care based on preferences (both

real and hypothetical) held by the majority of patients under

similar circumstances.1

Advance Care Planning: Preferences for Care at the End of Life

Making a Difference

Patients need more effective advance care 

planning...Page 2

Patients value advance care planning discussions...

Page 3

Physicians can use a structured process for

discussions...Page 4

Patient preference patterns can predict other

choices...Page 5

Invasiveness and length of treatment affect

preferences...Page 6

Treatment patterns are based on prognoses...Page 11

Issue #12 March 2003

Authors: Barbara L. Kass-Bartelmes, M.P.H., C.H.E.S., and Ronda Hughes, Ph.D.

Managing Editor: Margaret K. Rutherford

Design and Production: Joel Boches

Suggested Citation: Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville (MD): Agency for

Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018.
Section 1. Discussion of research findings

AHRQ research indicates that most patients have not

participated in advance care planning, yet many are willing

to discuss end-of-life care. One way to determine patients’

preferences for end-of-life care is to discuss hypothetical

situations and find out their opinions on certain treatment

patterns. These opinions can help clarify and predict the

preferences they would be likely to have it if they should

become incapacitated and unable to make their own

decisions. 

Patients need more effective advance care planning 

Studies funded by AHRQ indicate that many patients have

not participated in effective advance care planning. The

Patient Self-Determination Act guarantees patients the right

to accept or refuse treatment and to complete advance

medical directives.2-12 However, despite patients’ rights to

determine their future care, AHRQ research reveals that:

• Less than 50 percent of the severely or terminally ill

patients studied had an advance directive in their

medical record.5,6,8,13

• Only 12 percent of patients with an advance directive

had received input from their physician in its

development.6

• Between 65 and 76 percent of physicians whose patients

had an advance directive were not aware that it

existed.6,13

• Having an advance directive did not increase

documentation in the medical chart regarding patient

preferences.6,11

• Advance directives helped make end-of-life decisions in

less than half of the cases where a directive existed.6

• Advance directives usually were not applicable until the

patient became incapacitated14 and “absolutely,

hopelessly ill.”2

• Providers and patient surrogates had difficulty knowing

when to stop treatment and often waited until the patient

had crossed a threshold over to actively dying before the

advance directive was invoked.2

• Language in advance directives was usually too

nonspecific and general to provide clear instruction.5

• Surrogates named in the advance directive often were

not present to make decisions or were too emotionally

overwrought to offer guidance.2

• Physicians were only about 65 percent accurate in

predicting patient preferences and tended to make errors

of undertreatment, even after reviewing the patient’s

advance directive.15

• Surrogates who were family members tended to make

prediction errors of overtreatment, even if they had

reviewed or discussed the advance directive with the

patient or assisted in its development.16,17

AHRQ research shows that care at the end of life

sometimes appears to be inconsistent with the patients’

preferences to forgo life-sustaining treatment and patients

may receive care they do not want.5 For example, one

study found that patient preferences to decline

cardiopulmonary resuscitation (CPR) were not translated

into do-not-resuscitate (DNR) orders.5,6,11 DNR orders are

requests from the patient or the patient’s surrogate to the

physician that certain forms of treatment or diagnostic

testing not be performed.18 CPR is a procedure frequently

addressed in DNR orders. Another study found that patients

received life-sustaining treatment at the same rate

regardless of their desire to limit treatment.18

Patients with chronic illness need advance planning

Because physicians are in the best position to know when to

bring up the subject of end-of-life care, they are the ones

who need to initiate and guide advance care planning

discussions.19 Such discussions are usually reserved for

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Terms patients should understand

Advance directives are also known as living wills. These

are formal legal documents specifically authorized by

State laws that allow patients to continue their personal

autonomy and that provide instructions for care in case

they become incapacitated and cannot make decisions.

An advance directive may also be a durable power of

attorney.

A durable power of attorney is also known as a health

care proxy. This document allows the patient to

designate a surrogate, a person who will make treatment

decisions for the patient if the patient becomes too

incapacitated to make such decisions 
people who are terminally ill or whose death is imminent,

yet research indicates that people suffering from chronic

illness also need advance care planning.

The majority of people who die in the United States (80 to

85 percent) are Medicare beneficiaries age 65 and over, and

most die from chronic conditions such as heart disease,

cerebrovascular disease, chronic obstructive pulmonary

disease (COPD), diabetes, Alzheimer’s disease, and renal

failure.20 Only about 22 percent of deaths in people age 65

and over are from cancer.20

People with terminal cancer generally follow an expected

course, or “trajectory,” of dying.21,22 Many maintain their

activities of daily living until about 2 months prior to death,

after which most functional disability occurs.21 In contrast,

people with chronic diseases such as heart disease or

COPD go through periods of slowly declining health

marked by sudden severe episodes of illness requiring

hospitalization, from which the patient recovers.21,22 This

pattern may repeat itself over and over, with the patient’s

overall health steadily declining, until the patient dies.21,22

For these individuals there is considerable uncertainty about

when death is likely to occur. Patients who suffer from

chronic conditions such as stroke, dementia, or the frailty of

old age go through a third trajectory of dying, marked by a

steady decline in mental and physical ability that finally

results in death.21 Patients are not often told that their

chronic disease is terminal, and estimating a time of death

for people suffering from chronic conditions is much more

difficult than it is for those dying of cancer.22

When patients are hospitalized for health crises resulting

from their chronic incurable disease, medical treatment

cannot cure the underlying illness, but it is still effective in

resolving the immediate emergency and thus possibly

extending the patient’s life.2 At any one of these crises the

patient may be close to death,21 yet there often is no clearly

recognizable threshold between being very ill and actually

dying.2 Patients may become too incapacitated to speak for

themselves,23-26 and decisions about which treatments to

provide or withhold are usually made jointly between the

patient’s physician and family or surrogate.27

Patients value advance care planning discussions 

According to patients who are dying and their families who

survive them, lack of communication with physicians and

other health care providers causes confusion about medical

treatments, conditions and prognoses, and the choices that

patients and their families need to make.2,22,24,28-31 One

AHRQ study indicated that about one-third of patients

would discuss advance care planning if the physician

brought up the subject and about one-fourth of patients had

been under the impression that advance care planning was

only for people who were very ill or very old.32 Only 5

percent of patients stated that they found discussions about

advance care planning too difficult.32

AHRQ-funded studies have shown that discussing advance

care planning and directives with their doctor increased

patient satisfaction among patients age 65 years and

over.33,34 Patients who talked with their families or

physicians about their preferences for end-of-life care had

less fear and anxiety, felt they had more ability to influence

and direct their medical care, believed that their physicians

had a better understanding of their wishes, and indicated a

greater understanding and comfort level than they had

before the discussion.16,33 Compared to surrogates of

patients who did not have an advance directive, surrogates

of patients with an advance directive who had discussed its

content with the patient reported greater understanding,

better confidence in their ability to predict the patient’s

preferences, and a stronger belief in the importance of

having an advance directive.16

Finally, patients who had advance planning discussions

with their physicians continued to discuss and talk about

these concerns with their families.33 Such discussions

enabled patients and families to reconcile their differences

about end-of-life care and could help the family and

physician come to agreement if they should need to make

decisions for the patient.15,33

Opportunities exist for advance planning discussions

AHRQ studies indicate that physicians can conduct advance

care planning discussions with some patients during routine

outpatient office visits.32 Hospitalization for a serious and

progressive illness offers another opportunity.35 The Patient

Self-Determination Act requires facilities such as hospitals

that accept Medicare and Medicaid money to provide

written information to all patients concerning their rights

under State law to refuse or accept treatment and to

complete advance directives.2,3,5-12 Patients often send cues

to their physicians that they are ready to discuss end-of-life

care by talking about wanting to die or asking about

hospice.35 Certain situations, such as approaching death or

discussions about prognoses or treatment options that have

poor outcomes, also lend themselves to advance care

planning discussions.35 Predicting when patients are near

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death is difficult, but providers can ask themselves the

question: are the patients “sick enough today that it would

not be surprising to find that they had died within the next

year (or few months, or 6 months)”?22

A structured process for discussions is helpful

Researchers sponsored by AHRQ have suggested a fivepart process that physicians can use to structure discussions

on end-of-life care: 

1. Initiate a guided discussion. During this discussion,

the physicians should share their medical knowledge of

hypothetical scenarios and treatments that are applicable to

a patient’s particular situation and find out the patient’s

preferences for providing or withholding treatments under

certain situations. The hypothetical scenarios should cover

a range of possible prognoses and any disability that could

result from treatment. By presenting various hypothetical

scenarios and probable treatments and noting when the

patient’s preferences change from “treat” to “do not treat,”

the physician can begin to identify the patient’s personal

preferences and values.19

The physician can also determine if the patient has an

adequate understanding of the scenario, the treatment, and

possible outcomes.19 One AHRQ-funded study indicated

that elderly patients have enough knowledge about advance

directives, CPR, and artificial nutrition/hydration on which

to base decisions for treatment at the end of life, but they

do not always understand their realistic chances for a

positive outcome.36 Other research indicates that patients

significantly overestimate their probability of survival after

receiving CPR and have little or no understanding of

mechanical ventilation.37 In one study, after patients were

told their probability of survival, over half changed their

treatment preference from wanting CPR to refusing CPR.38

Patients also may not know of the risks associated with the

use of mechanical ventilation that a physician is aware of,

such as neurological impairment or cardiac arrest.23

2. Introduce the subject of advance care planning and

offer information. Patients should be encouraged to

complete both an advance directive and durable power of

attorney.19 The patient should understand that when no

advance directive or durable power of attorney exists,

patients essentially leave treatment decisions to their

physicians and family members.13 Physicians can provide

this information themselves; refer the patient to other

educational sources, including brochures or videos; and

recommend that the patient talk with clergy or a social

worker to answer questions or address concerns.19

3. Prepare and complete advance care planning

documents. Advance care planning documents should

contain specific instructions. AHRQ studies indicate that

the standard language contained in advance directives often

is not specific enough to be effective in directing care.5

Many times, instructions do not state the cutoff point of the

patient’s illness that should be used to discontinue treatment

and allow the person to die.5,16 Terms such as “no advanced

life support” are too vague to offer guidance on specific

treatments.5 If a patient does not want to be on a ventilator,

the physician should ask the patient if this is true under all

circumstances or only specific circumstances.19 One

AHRQ-funded study found that because patient preferences

were not clear in advance directives, life-sustaining

treatment was discontinued only when it was clearly

medically futile.2

4. Review the patient’s preferences on a regular basis

and update documentation. Patients should be reminded

that advance directives can be revised at any time.19

Although AHRQ studies show that patients’ preferences

were stable over time when considering hypothetical

situations,39,40 other research indicates that patients often

changed their minds when confronted with the actual

situation or as their health status changed.1 Some patients

who stated that they would rather die than endure a certain

condition did not choose death once that condition

occurred.1

Other research shows that patients who had an advance

directive maintained stable treatment preferences 86

percent of the time over a 2-year period, while patients who

did not have an advance directive changed their preferences

59 percent of the time.41 Both patients with and patients

without a living will were more likely to change their

preferences and desire increased treatment once they

became hospitalized, suffered an accident, became

depressed, or lost functional ability or social activity.41

Another study linked changes in depression to changes in

preferences for CPR.42 Increased depression was associated

with patients’ changing their initial preference for CPR to

refusal of CPR, while less depression was associated with

patients’ changing their preference from refusal of CPR to

acceptance of CPR.42 It is difficult for people to fully

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imagine what a prospective health state might be like. Once

they experience that health state, they may find it more or

less tolerable than they imagined. 

During reviews of advance directives, physicians should

note which preferences stay the same and which change.

Preferences that change indicate that the physician needs to

investigate the basis for the change.19

5. Apply the patient’s desires to actual circumstances.

Conflicts sometimes arise during discussions about end-oflife decisionmaking. AHRQ-sponsored research indicates

that if patients desired nonbeneficial treatments or refused

beneficial treatments, most physicians stated that they

would negotiate with them, trying to educate and convince

them to either forgo a nonbeneficial treatment or to accept

a beneficial treatment. If the treatment was not harmful,

expensive, or complicated, about one-third of physicians

would allow the patient to receive a nonbeneficial

treatment. Physicians stated that they would also enlist the

family’s help or seek a second opinion from another

physician.43

Many patients do not lose their decisionmaking capacity at

the end of life. Physicians and family members can

continue discussing treatment preferences with these

patients as their condition changes.14 However, physicians

and families may encounter the difficulty of knowing when

an advance directive should become applicable for patients

who are extremely sick and have lost their decisionmaking

capacity but are not necessarily dying.2 There is no easy

answer to this dilemma. One AHRQ study found that

advance directives were invoked only once patients had

crossed a threshold to being “absolutely, hopelessly ill.”2

The patients’ physicians and surrogates determined that

boundary on an individual basis.2 AHRQ studies have

shown that patients’ treatment was generally consistent with

their preferences if those preferences were clearly stated in

an advance directive and the physician was aware that they

had an advance directive.2,14

Even if patients require a decision for a situation that was

not anticipated and addressed in their advance directive,

physicians and surrogates still can make an educated

determination based on the knowledge they have about the

patients’ values, goals, and thresholds for treatment.19

AHRQ research indicates that patients choose treatment

based on the quality of the prospective health state, the

invasiveness and length of treatment, and possible

outcomes.

Patients have preference patterns for hypothetical

situations

AHRQ-funded studies indicate that patients are more likely

to accept treatment for conditions they consider better than

death and to refuse treatment for conditions they consider

worse than death.39 Results from the study conducted on

health states considered worse than death are shown in

Figures 1 and 2 of Section 2 in this report. Patients also

were more likely to accept treatments that were less

invasive such as CPR than invasive treatments such as

mechanical ventilation (Figure 3).17,39,44 Patients were more

likely to accept short-term or simple treatments such as

antibiotics than long-term invasive treatments such as

permanent tube feeding (Figures 4-6 and Table 1). 

Patient preference patterns can predict other choices

Acceptance or refusal of invasive and noninvasive

treatments under certain circumstances can predict what

other choices the patient would make under the same or

different circumstances. According to AHRQ research,

patients’ refusal of noninvasive treatments was predictive of

their refusal of invasive treatments, and accepting invasive

treatments predicted their acceptance of noninvasive

treatments. Refusal of noninvasive treatments such as

antibiotics strongly predicted that invasive treatments such

as major surgery would also be refused. Decisions with the

strongest predictive ability were refusing antibiotics or

simple tests and accepting major surgery or dialysis (Table

2).45

AHRQ research also reveals that patients were more likely

to refuse treatment under hypothetical conditions as their

prognosis became worse.7,32 For example, more adults

would refuse both invasive and noninvasive treatments for a

scenario of dementia with a terminal illness than for

dementia only (Figure 7). Adults were also more likely to

refuse treatment for a scenario of a persistent vegetative

state than for a coma with a chance of recovery (Figure 8).

More patients preferred treatment if there was even a slight

chance for recovery from a coma or a stroke (Figure 9).32

Fewer patients would want complicated and invasive

treatments if they had a terminal illness (Figure 10).

Finally, patients were more likely to want treatment if they

would remain cognitively intact rather than impaired

(Figure 11).
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AHRQ funds studies to improve end-of-life care

AHRQ continues to fund research to improve the quality of

care at the end of life. Ongoing AHRQ research includes

the following studies.

• Impact of Ethics Consultation in the Intensive Care

Unit; University of California, San Diego, Grant No.

R01 HS10251. This project examines the benefits of

ethics consultations between families and hospital staff

and whether such consultations reduce resource use.

• Nursing Home Care at the End of Life: Cost and

Quality; Brown University, Grant No. R01 HS10549.

This research project is testing preliminary findings

indicating that hospice care in nursing homes positively

influences pain management, acute hospitalization rates,

and terminal care costs.

• Improving Physician Skill at Providing End-of-Life

Care; University of Washington, Grant No. R01

HS11425. This study will identify specific strengths

and weaknesses in the end-of-life care provided by

physicians. Researchers will then develop educational

and systemic interventions to improve the quality of

end-of-life care.

• Medical Care at End of Life: Rural vs. Urban

Minnesota; Duluth Clinic, Ltd., Grant No. R03

HS13022. This research project is investigating

similarities and differences in end-of-life care among

rural and urban nursing home residents with severe

cognitive impairment.

• Center for Patient Safety at the End of Life; Rand

Corporation, Grant No. P20 HS11558. The Center’s

focus is to improve the reliability of health care by

effecting change and educating providers about safe and

correct care of patients with chronic heart failure or

chronic obstructive pulmonary disease.

Advance planning helps physicians provide care that

patients want

Most people will eventually die from chronic conditions.

These patients require the same kind of advance care

planning as those suffering from predictably terminal

conditions such as cancer. Understanding preferences for

medical treatment in patients suffering from chronic illness

requires that physicians and other health care providers

consider patients’ concerns about the severity of prospective

health states, length and invasiveness of treatments, and

prognosis. While predicting what patients might want is

difficult, AHRQ research offers some insights into

treatment patterns and preferences under hypothetical

situations that can give providers more insight into their

patients’ desires under similar circumstances. By

discussing advance care planning during routine outpatient

visits, during hospitalization for exacerbation of illness, or

when the patient or physician believes death is near,

physicians can improve patient satisfaction with care and

provide care at the end of life that is in accordance with the

patient’s wishes. 

Section 2. Patient preferences for treatment

The results from AHRQ research presented in this section

were collected from studies conducted with patients, many

of whom were suffering from chronic disease, and

physicians. Given hypothetical situations, patients described

patterns of preferences for care based on health status,

invasiveness and length of treatment, and prognosis. 

Patients view some health states as worse than death

AHRQ research shows that adults of various ages whose

current health states ranged from well to terminally ill

differed in their perception of hypothetical health states as

being worse than death (Figure 1). For example, 66 percent

of younger well adults rated permanent coma as being

worse than death, compared to only 28 percent of nursing

home residents. However, the proportions of adults rating

dementia as being worse than death were similar among all

groups, ranging from 18 to 31 percent.39

Patients were more likely to accept life-sustaining treatment

for states they considered better than death than for states

they considered worse than death. For example, of all the

hypothetical health states posed, patients were least likely to

indicate that they would want CPR if they were in a

permanent coma (Figure 2).39

Invasiveness and length of treatment affect

preferences

Patients were likely to accept or refuse treatment based on

how invasive they perceive that treatment to be and how

long the treatment is expected to last.17,39,44,46 Presented with

hypothetical scenarios, patients from three AHRQ studies

were more likely to want CPR than long-term mechanical

ventilation if they were in their current state of health

(Figure 3). When given a hypothetical scenario of a stroke,

fewer patients would opt for either CPR or mechanical

ventilation.17,39,44
www.ahrq.gov 7

66

57 59

44

66

44

28

Younger well

adults

Older well

adults

Persons with

chronic illness

Persons with

terminal cancer

Persons

with AIDS

Stroke

survivors

Nursing home

residents

0

20

40

60

80

Percent

Permanent Coma

30

57

43

31

48

33

26

0

20

40

60

80

Severe pain

Younger well

adults

Older well

adults

Persons with

chronic illness

Persons with

terminal cancer

Persons

with AIDS

Stroke

survivors

Nursing home

residents

Percent

30

49

39

25

46

29 26

0

20

40

60

80

Severe stroke

Younger well

adults

Older well

adults

Persons with

chronic illness

Persons with

terminal cancer

Persons

with AIDS

Stroke

survivors

Nursing home

residents

Percent

24

31 31 29 30 27

18

0

20

40

60

80

Younger well

adults

Older well

adults

Persons with

chronic illness

Persons with

terminal cancer

Persons

with AIDS

Stroke

survivors

Nursing home

residents

Percent

Dementia

Figure 1. Percent of sampled adultsa who rate four hypothetical states as worse than dealth

a

Sample included 50 well adults ages 21-65 years, 49 well adults older than 65, 49 older adults with chronic illness, 48 adults with terminal cancer, 50 adults with AIDS, 45 stroke 

survivors, and 50 nursing home residents.

Source: Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127(7):509-17.
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77

15

40

35 37

Current health Permanent coma Dementia Severe stroke Severe pain

0

20

40

60

80

100

Percent

Figure 2. Percent of sampled adultsa who would want cardiopulmonary resuscitation if in hypothetical health states

a

Sample included 50 well adults ages 21-65 years, 49 well adults older than 65, 49 older adults with chronic illness, 48 adults with terminal cancer, 50 adults with AIDS, 45 stroke survivors,

and 50 nursing home residents.

Source: Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127(7):509-17.

84

36 38

25

86

28 29

14

77

42

35

23

CPR (current health) Ventilator (current health) CPR (stroke) Ventilator (stroke)

0

10

20

30

40

50

60

70

80

90

100

Percent

Elderly study B

Elderly study A

Adult samplea

b

c

Figure 3. Percent of adults who would want cardiopulmonary resuscitation (CPR) or long-term mechanical ventilation

if in current health or after hypothetical stroke

a

Sample included 50 well adults ages 21-65 years, 49 well adults older than 65, 49 older adults with chronic illness, 48 adults with terminal cancer, 50 adults with AIDS, 45 stroke survivors,

and 50 nursing home residents. Source: Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern

Med 1997;127(7):509-17.

b

Patients were 65 years or over with at least 1 chronic disease, at least 1 visit to the physician in the past 6 months and 2 visits in the past year, no dementia, and not terminally ill. 

Source: Uhlmann RF, Pearlman RA, Cain KC. Understanding of elderly patients’ resuscitation preferences by physicians and nurses. West J Med 1989;150(6):705-7.

c

Patients were 65 years or over with at least 1 chronic disease, at least 2 visits to the physician in the last 12 months, no dementia, and not terminally ill. Source: Uhlmann RF, Pearlman RA,

Cain KC. Physicians’ and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol 1988;43(5):M115-21.
In the AHRQ study examining health states worse than

death, patients were more likely to accept short-term

mechanical ventilation than long-term mechanical

ventilation for all health states (Figure 4).39

When asked to consider a hypothetical scenario of chronic

lung disease, the majority of elderly patients wanted

resuscitation but not the use of a long-term ventilator.44

These results are comparable to the preferences of patients

actually suffering from lung cancer or COPD, who were

also less likely to want the use of a ventilator than to want

resuscitation only (Figure 5).47

For all health states, patients were more likely to accept

treatment on a trial basis if the treatments were simple, such

as receiving antibiotics (Figure 6).39 In another AHRQfunded study, patients age 64 and over were more inclined

to choose simple treatments such as antibiotics and blood

transfusion for their current state of health as well as future

hypothetical states of being mentally confused or

unconscious (Table 1).46 Patients also preferred temporary

respiration and tube feeding to permanent respiration and

tube feeding.46

Patterns regarding invasiveness can predict patient

preferences

AHRQ studies show that declining antibiotics, noninvasive

diagnostics, and intravenous fluids strongly predicted that

more invasive treatments such as major surgery would also

be refused (Table 2). Conversely, accepting more invasive

treatments such as a major operation or dialysis was the

strongest predictor that the patient would accept less

invasive treatments, although it was not as strongly

predictive as refusing a noninvasive treatment. Although

refusing CPR or mechanical ventilation has some ability to

predict a patient’s refusal or acceptance of other treatments,

a patient’s refusal of resuscitation does not necessarily

predict that the patient would decline other less invasive

treatments.45

Treatments that the patient considered comparable were

predictive of each other. For example, refusing

resuscitation was predictive of refusing major surgery, and

refusing mechanical ventilation was predictive of refusing

dialysis. Accepting a procedure such as endoscopy was

predictive of accepting minor surgery, and accepting

intravenous hydration or artificial nutrition were predictive

of each other.45

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42

14

23 23

18

88

29

56 59

44

Current health Permanent coma Dementia Severe stroke Severe pain

0

10

20

30

40

50

60

70

80

90

100

Percent

Long term

Short term

Figure 4. Percent of sampled adults who would want short-term or long-term mechanical ventilation if in hypothetical

health statesa

a

Sample included 50 well adults ages 21-65 years, 49 well adults older than 65, 49 older adults with chronic illness, 48 adults with terminal cancer, 50 adults with AIDS, 45 stroke survivors,

and 50 nursing home residents.

Source: Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127(7):509-17.
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Chronic obstructive pulmonary

disease

Lung cancer

Age 65 and older

63

22

63

19

73

24

Resuscitation Long-term ventilator

0

20

40

60

80

Percent

a

b

b

Figure 5. Percent of adults who would want resuscitation or use of a ventilator for a hypothetical scenario of chronic

lung disease

a

Patients were 65 years or over with at least 1 chronic disease, at least 1 visit to the physician in the past 6 months and 2 visits in the past year, no dementia, and not terminally ill. 

Source: Uhlmann RF, Pearlman RA, Cain KC. Understanding of elderly patients’ resuscitation preferences by physicians and nurses. West J Med 1989;150(6):705-7.

b

Patients were 18 and over and had acute exacerbation of chronic obstructive pulmonary disease and non-small-cell lung cancer, Stage III or IV. Source: Claessens MT, Lynn J, Zhong Z, et al.

Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. J Am Geriatr Soc 2000;48(5):S146-S153.

59

14

36 33 33

75

14

44

37

42

95

38

80

72

61

Current health Permanent coma Dementia Severe stroke Severe pain

0

10

20

30

40

50

60

70

80

90

100

Artificial nutrition/hydration

Hemodialysis

Antibiotics

Percent

Figure 6. Percent of sampled adults who would want selected treatments if in hypothetical health statesa

a

Sample included 50 well adults ages 21-65 years, 49 well adults older than 65, 49 older adults with chronic illness, 48 adults with terminal cancer, 50 adults with AIDS, 45 stroke survivors,

and 50 nursing home residents.

Source: Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127(7):509-17.
Treatment preference patterns are based on

prognoses

According to AHRQ research, patients were consistently

more likely to refuse treatment for a scenario with a worse

prognosis. For example, more adult patients would refuse

treatment if they had dementia with a terminal illness than if

they only had dementia (Figure 7).32 Similarly, more

patients would refuse treatment for a persistent vegetative

state than they would if they were in a coma with a chance

of recovery (Figure 8).32 Prognosis was a significant factor

for patients age 65 and over in determining whether or not

to accept life-sustaining treatment. Patients were more

likely to choose antibiotics, cardiopulmonary resuscitation,

surgery, and artificial nutrition/hydration when there was

even a slight chance of recovery from a stroke or a coma

than when there was no hope of recovery (Figure 9).

Patients also were more likely to want treatment if terminal

cancer had no associated pain than if pain medication was

required constantly.7

An AHRQ-funded study of patients age 75 and over and

patients with chronic disease indicates that as treatments

become more complicated and invasive, fewer patients

would want them if they had a terminal illness (Figure 10).48

The results of other research on preferences for care in the

case of terminal illness conducted among the elderly, the

majority of whom had chronic illnesses, are also shown in

Figure 10.49

Patients prefer treatment if they will retain cognitive

awareness

AHRQ-funded research showed that about two-thirds (66

percent) of patients age 64 and over who were admitted to a

hospital’s internal medicine department but were not acutely

ill had a cognitive-dependent treatment pattern: they desired

less treatment if they were to become more cognitively

impaired.46 Another AHRQ-funded study showed that

elderly patients are far less likely to accept treatment if

presented a hypothetical scenario for a cognitive impairment

such as Alzheimer’s disease than for a physical impairment

such as emphysema (Figure 11).7

For more information

For further information on care at the end of life, please

contact Ronda Hughes, Ph.D., at rhughes@ahrq.gov or by

telephone at 301-594-0198.

www.ahrq.gov 11

Table 1. Rank order of treatment preferences among

patients age 64 and over,a from most to least preferred

Antibiotics

Blood transfusion

Temporary tube feeding

Temporary respirator

Radiation

Amputation

Dialysis

Chemotherapy

Resuscitation

Permanent respirator

Permanent tube feeding

a

Patients admitted to a unit within the hospital’s internal medicine 

department who were not acutely ill.

Source: Cohen-Mansfield J, Droge JA, Billig N. Factors influencing hospital patients’ preferences in the utilization of life-sustaining treatments. Gerontologist 1992;32(1):89-95.

Table 2. Rank order of treatment preferences as

predictors of preferences for other treatments from

strongest to weakest predictive ability among adult

hospital outpatients

Decline predictors Acceptance predictors

Antibiotics

Noninvasive diagnostics

Intravenous fluids

Minor operations

Tube feeding

Dialysis

Invasive diagnostics

Blood transfusions

Mechanical ventilation

Cardiopulmonary resuscitation

Major operations

Source: Emanuel LL, Barry MJ, Emanuel EJ, et al. Advance directives: can patients’ stated

treatment choices be used to infer unstated choices? Med Care 1994;32(2):95-105.

Major operations

Dialysis

Mechanical ventilation

Tube feeding

Blood transfusions

Cardiopulmonary 

resuscitation

Intravenous fluids

Minor operations

Invasive diagnostics

Antibiotics

Noninvasive diagnostics
12 www.ahrq.gov

Cardiopulmonary

resuscitation

Mechanical

respiration

Intravenous fluids

Artificial nutrition

Blood transfusion

Antibiotics

Renal dialysis

Major surgery

Minor surgery

Simple diagnostic

procedures

Complex diagnostic

procedures

0 10 20 30 40 50 60 70 80 90

Percent

Dementia and terminal illness

Dementia

83

73

75

64

81

71

85

77

83

75

79

69

82

74

76

82

73

82

75

84

72

84

Figure 7. Percent of adults refusing selected treatments for hypothetical health scenarios of dementia or dementia

with a terminal illnessa

a

Sample included adult outpatients of primary care physicians and members of the general public. 

Source: Emanuel LL, Barry MJ, Stoeckle JD, et al. Advance directives for medical care–a case for greater use. N Engl J Med 1991;324(13):889-95.
www.ahrq.gov 13

Cardiopulmonary

resuscitation

Mechanical

respiration

Intravenous fluids

Artificial nutrition

Blood transfusion

Antibiotics

Renal dialysis

Major surgery

Minor surgery

Simple diagnostic

procedures

Complex diagnostic

procedures

0 10 20 30 40 50 60 70 80 90

Percent

Persistent vegetative state

Coma with chance of recovery

78

55

70

48

80

56

83

61

80

57

76

49

81

53

60

80

51

77

55

80

55

83

Figure 8. Percent of adults refusing selected treatments in hypothetical health scenarios of coma with a chance of

recovery or a persistent vegetative statea

a

Sample included adult outpatients of primary care physicians and members of the general public. 

Source: Emanuel LL, Barry MJ, Stoeckle JD, et al. Advance directives for medical care–a case for greater use. N Engl J Med 1991;324(13):889-95.
14 www.ahrq.gov

2

20

4

24

12

20

6

26

14

38

16

26

6

32

14

40

18

44

6

40

29

58

22

52

Coma

(no chance)

Coma

(slight chance)

Stroke

(no chance)

Stroke

(slight chance)

Terminal cancer

(with pain)

Terminal cancer

(without pain)

0

10

20

30

40

50

60

70

Percent

Artificial nutrition/hydration

Gallbladder surgery

Cardiopulmonary resuscitation

Antibiotics

Figure 9. Percent of elderly adults choosing selected treatments in hypothetical scenarios based on chance of

recovery or presence of pain

Source: Coppola KM, Bookwala J, Ditto PH, et al. Elderly adults’ preferences for life-sustaining treatments: the role of impairment, prognosis, and pain. Death Studies 1999;23:617-34.

47

34

27

18 19

24

58

49

44

37

27

15

Hospitalization Intensive care Cardiopulmonary

resuscitation

Artificial nutrition/

hydration

Ventilation Surgery

0

10

20

30

40

50

60

70

Percent

Ages 65-99b

Age 75 and over or ages 50-74a

Figure 10. Percent of patients choosing selected treatments in hypothetical scenarios of terminal illness

a

Patients were age 75 and over or ages 50-74 with congestive heart failure, ischemic heart disease, cancer, chronic lung disease, stroke or transient ischemic attacks, chronic renal insufficiency or chronic liver disease. Source: Gramelspacher GP, Zhou X, Hanna MP, et al. Preferences of physicians and their patients for end-of-life care. J Gen Intern Med 1997;12:346-51.

b

Patients were ages 65-99: 14 percent with no major illness, 19 percent with minor chronic illness, 50 percent with major chronic illness, and 15 percent with severe chronic illness or

advanced cancer. Source: Garrett JM, Harris RP, Norburn JK, et al. Life-sustaining treatments during terminal illness. Who wants what? J Gen Intern Med 1993;8(7):361-68.
www.ahrq.gov 15

70

52

62

16

40

24

46

4

Antibiotics Cardiopulmonary resuscitation Gall bladder surgery Artificial nutrition/hydration

0

10

20

30

40

50

60

70

80

Percent

Emphysema

Alzheimer’s disease

Figure 11. Percent of elderly adults choosing selected treatments in hypothetical scenarios of Alzheimer’s disease or

emphysema

Source: Coppola KM, Bookwala J, Ditto PH, et al. Elderly adults’ preferences for life-sustaining treatments: the role of impairment, prognosis, and pain. Death Studies 1999;23:617-34.
16 www.ahrq.gov

Quality-of-Life Factors in Geriatric Medicine Decisions,

1984-86, Grant No. HS05303, University of Washington:

Compared similarities and differences among elderly

patients, spouses, and physicians regarding their quality-oflife values.

Effects of Advance Directives on Medical Care, 1987-91,

Grant No. HS05617, University of California, San Diego:

Examined the effect of advance directives on the costs of

health care, satisfaction with health care, and well-being

among patients with life-threatening illnesses.

Living Wills: For Primary Care, AIDS, and Cancer Patients,

1989-91, Grant No. HS06120, Massachusetts General

Hospital: Studied use of living wills, stability of preferences,

and discussions between physicians and ambulatory

patients.

Long-Term Stability of Treatment Preferences, 1989-95,

Grant No. HS06343, University of Washington: Determined

the long-term stability and predictive validity of preferences

for life-sustaining treatment and health states that patients

consider worse than death.

Making Choices and Allocating Resources Near Life’s End,

1990-95, Grant No. HS06655, University of North Carolina:

Explored treatment preferences and congruency among

elderly patients with severe heart disease, lung disease,

and cancer.

Advance Directives—Effectiveness of Mandatory Notice,

1991-94, Grant No. HS07075, Dartmouth College:

Investigated the impact of the Patient Self-Determination

Act, use of advance directives, and treatment preferences of

severely ill patients.

Advance Directives and Communication in Medical Care,

1991-96, Grant No. HS06912, University of California, San

Diego: Studied the effects of advance directives on personal

autonomy, cost of health care, well-being, and patientphysician communication among patients with lifethreatening illness.

Nursing Home Residents’ Treatment Preferences, 1992-95,

Grant No. HS06815, University of Pennsylvania: Examined

the use of advance directives in nursing homes to ascertain

whether there were institutional and/or individual factors

associated with treatment preferences.

Advance Directive Discussions With Elderly Outpatients,

1993-95, Grant No. HS07660, Kent State University:

Analyzed the impact of physician-initiated discussions

regarding advance directives and physicians’ ability to

predict treatment preferences of their elderly outpatients.

Ethnicity and Attitudes Toward Advance Care Directives,

1993-96, Grant No. HS07001, University of Southern

California: Explored attitudes toward medical technology,

withholding and withdrawing treatment, and advance care

documents among different ethnic groups.

Advance Directives, Proxies, and Electronic Medical

Records, 1993-97, Grant No. HS07632, Indiana University:

Studied the ability to encourage discussions about advance

directives and documentation of patient treatment

preferences through a computer system.

Systematic Application of a Health Care Directive, 1994-98,

Grant No. HS07878, McMaster University: Examined the

effects of the systematic application of the Let Me Decide

directive on patient and family satisfaction with health care,

health care use, and health care costs among nursing home

residents.

Resource Use in Seriously Ill Medicare Patients, 1995-98,

Grant Nos. HS08158/HS09129, Dartmouth College:

Investigated Medicare beneficiaries’ utilization of services,

the Study to Understand Prognoses and Preference for

Outcomes and Risks of Treatment (SUPPORT) intervention to

improve decisionmaking, and implementation of the Patient

Self-Determination Act.

Testing the Effectiveness of Advance Medical Directives,

1995-2001, Grant No. HS08180, Kent State University:

Compared different methods of collecting advance directive

information to improve surrogates’ ability to predict patient

preferences for life-sustaining treatment and measured

stability of patient treatment preferences over time.

Medical Decisions and Advance Care Planning in the

Nursing Home, 1998-2000, Grant. No. HS09833, Hebrew

Home of Greater Washington: Studied factors influencing

end-of-life medical decisions and use of advance directives

among nursing home residents.

A Detailed Profile of End-of-Life Care in Medicare, 1999-

2001, Grant No. HS10561, RAND Corporation: Investigated

health care use among Medicare beneficiaries at the end of

life.

AHRQ-Sponsored/Funded Research Projects on End-of-Life Care
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*AHRQ-funded/sponsored research

www.ahrq.gov 17
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of preferences for life-sustaining treatment: implications

for advance care planning. Ann Intern Med

1997;127:509-17.

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directives. Stability of patients’ treatment choices. Arch

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elderly patients’ resuscitation preferences by physicians

and nurses. West J Med 1989;150(6):705-7.

*45. Emanuel LL, Barry MJ, Emanuel EJ, et al. Advance

directives: can patients’ stated treatment choices be used

to infer unstated choices? Med Care 1994;32(2):95-105.

*46. Cohen-Mansfield J, Droge JA, Billig N. Factors

influencing hospital patients’ preferences in the

utilization of life-sustaining treatments. Gerontologist

1992;32(1):89-95.

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cancer or chronic obstructive pulmonary disease:

insights from SUPPORT. J Am Geriatr Soc

2000;48(5):S146-53.

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wants what? J Gen Intern Med 1993;8(7):361-68.

*AHRQ-funded/sponsored research

18 www.ahrq.gov
www.ahrq.gov 19

Previous issues of Research in Action are available for free from the AHRQ Publications Clearinghouse: 1-800-358-9295.

Please specify the AHRQ publication number when you call.

Issue Title Publication Number

11 AHRQ Tools for Managed Care AHRQ 03-0016

10 AHRQ Tools and Resources for Better Health Care AHRQ 03-0008

9 Reducing Costs in the Health Care System: Learning From AHRQ 02-0046

What Has Been Done

8 Prescription Drug Therapies: Reducing Costs and Improving AHRQ 02-0045

Outcomes

7 Improving Treatment Decisions for Patients with Community- AHRQ 02-0033

Acquired Pneumonia

6 Medical Informatics for Better and Safer Health Care AHRQ 02-0031

5 Expanding Patient-Centered Care to Empower Patients and AHRQ 02-0024

Assist Providers

4 Managing Osteoarthritis: Helping the Elderly Maintain Function AHRQ 02-0023

and Mobility

3 Preventing Disability in the Elderly With Chronic Disease AHRQ 02-0018

2 Improving Care for Diabetes Patients Through Intensive AHRQ 02-0005

Therapy and a Team Approach

1 Reducing and Preventing Adverse Drug Events To Decrease AHRQ 01-0020

Hospital Costs
U.S. Department of

Health and Human Services

Public Health Service

Agency for Healthcare Research and Quality

2101 East Jefferson Street, Suite 501

Rockville, Maryland 20852

www.ahrq.gov

AHRQ Pub. No. 03-0018

March 2003