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Life­-Sustaining Treatment Preferences: Matches And Mismatches Between Patients’ Preferences And Clinicians’ Perceptions

Authors: Lois Downey, David Au, J. Randall Curtis and Ruth A. Engelberg

Journal of Pain and Symptom Management, July 2013

Clinicians erred about patients’ wishes when patients did not want treatment

End of life discussions have the potential for reducing unwanted treatment, decreasing health care costs and improving quality of end of life care. Although many patients prefer end of life care focused on comfort rather than prolongation of life, a substantial minority prefer life-sustaining therapy regardless of the outcome. It is important that clinicians understand each patient’s preferences for end of life care.

A paired group of 196 patients with chronic obstructive pulmonary disease (COPD) and their 68 primary care physicians at two Veterans Affairs facilities in Washington state were evaluated. Each patient was asked to complete a survey including the following question regarding mechanical ventilation:

‘‘If you were in your current health and unable to breathe on your own, would you want to be on a breathing machine for a few days? There would be no guarantee that you would be able to come off the breathing machine and be able to breathe on your own.’’

The parallel clinician item question was:

‘‘In his current health, do you think [this patient] would want hospitalization in an ICU with short­term mechanical ventilation with an uncertain chance of being extubated alive?’ ’

Regarding cardiopulmonary resuscitation (CPR), the patient question was:

‘‘CPR would consist of electric shocks to the heart, pumping on the chest, help with breathing and heart medications given through the veins. Possible side effects of CPR include broken ribs and memory loss. In your current health, would you want CPR if your heart were to stop beating?’’

The clinician question was:

‘‘In his current health, do you think [this patient] would want CPR if he were to have a cardiac arrest?’’

Almost 85 percent of patients reported never having had a discussion about end of life treatment issues with their clinician, while more that 70 percent of the clinicians believed that they probably/definitely knew the patients’ general life­sustaining treatment preferences.

Paired patient­clinician responses revealed many clinician errors in perception, with 39 percent in error about patients’ preferences regarding mechanical ventilation. Regarding preferences for CPR, 25 percent were in error. When errors were made, clinicians were more likely to believe their patients wanted life­sustaining treatment, while the patient reported that they did not.

Patients in this study were significantly more accepting of CPR than of mechanical ventilation. Other studies have shown that the chances of surviving CPR is considerably lower than survival after mechanical ventilation for an acute exacerbation of COPD. Furthermore, patients’ own estimates of their chances of surviving CPR are considerably higher than their clinicians’ estimates.

These results demonstrate that end of life discussions need to occur more frequently, recur over the course of the clinician­patient relationship, include a focus on goals and consider preferences for specific treatments.