Advance Care Planning: Preferences for Care at the End of Life (continued)

Research in Action, Issue 12

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 PredictorsAcceptance 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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References 

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*20. Hogan C, Lynn J, Gabel J, et al. Medicare beneficiaries' costs and use of care in the last year of life. Final Report to MedPAC. Washington (DC); 2000. 

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*33. Smucker WD, Ditto PH, Moore KA, et al. Elderly outpatients respond favorably to a physician-initiated advance directive discussion. J Am Board Fam Pract 1993;6(5):473-82. 

*34. Tierney WM, Dexter PR, Gramelspacher GP, et al. The effect of discussions about advance directives on patients' satisfaction with primary care. J Gen Intern Med 2001;16:32-40. 

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37. Fischer GS, Tulsky JA, Rose MR, et al. Patient knowledge and physician predictions of treatment preferences after discussion of advance directives. J Gen Intern Med 1998;13:447-54. 

38. Murphy DJ, Burrows D, Santilli S, et al. The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation. N Engl J Med 1994;330(8):545-9. 

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

*40. Emanuel LL, Emanuel EJ, Stoeckle JD, et al. Advance directives. Stability of patients' treatment choices. Arch Intern Med 1994;154(2):209-17. 

41. Danis M, Garrett J, Harris R, et al. Stability of choices about life-sustaining treatments. Ann Intern Med 1994;120(7):567-73. 

42. Rosenfeld KE, Wenger NS, Phillips RS, et al. Factors associated with change in resuscitation preference of seriously ill patients. Arch Intern Med 1996;156(14):1558-64. 

43. Fetters MD, Churchill L, Danis M. Conflict resolution at the end of life. Crit Care Med 2001;29(5):921-5. 

*44. Uhlmann RF, Pearlman RA, Cain KC. Understanding of 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. 

47. 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):S146-53. 

*48. 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. 

49. 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. 

*AHRQ-funded/sponsored research

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Page last reviewed March 2003
Internet Citation: Advance Care Planning: Preferences for Care at the End of Life (continued): Research in Action, Issue 12. March 2003. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/findings/factsheets/aging/endliferia/endria2.html