Advance Care Planning

Preferences for Care at the End of Life

Research in Action, Issue 12

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Section 2. Patient Preferences for Treatment

The results from AHRQ research 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

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 AHRQ-funded 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

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.

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

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	Major operations Dialysis Mechanical ventilation Tube feeding Blood transfusions Cardiopulmonary resuscitation Intravenous fluids Minor operations Invasive diagnostics Antibiotics Noninvasive diagnostics
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.

Treatment Preferences 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

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For More Information

For further information on care at the end of life, please contact Ronda Hughes, Ph.D., at Ronda.Hughes@ahrq.hhs.gov or by telephone at (301) 427-1578.

Select for Research Projects funded/sponsored by AHRQ on end-of-life care.

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*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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*AHRQ-funded/sponsored research

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AHRQ Publication Number 03-0018
Current as of March 2003

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Internet Citation:

Advance Care Planning: Preferences for Care at the End of Life. Research in Action, Issue 12. AHRQ Publication Number 03-0018, March 2003. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/endliferia/endria.htm

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