“Do you want everything done?” How language impacts advance care planning
When Randi Oster‘s 79-year-old father was diagnosed with glioblastoma, a rare and fatal brain cancer, her father was clear: He wanted no invasive procedures, no chemo, and no radiation. However, the doctors urged Oster’s family to give him surgery to prolong his life. “Don’t you want to do everything to save your dad?” one doctor told Oster.
Despite her father’s wishes, he was being scheduled for surgery. It wasn’t until their family realized that the surgery would only prolong his life by six months, and he have to endure chemo, radiation, and other side effects, that they realized that surgery was the wrong choice. “[My father] preferred eight weeks of being with his family over eight months of disability and unpleasant treatments,” said Oster.
Oster’s story illustrates how powerful the phrase “Do you want everything done?” can be when patients and families are making end-of-life treatment decisions. A recent study by Dr. Guilio DiDiodato, at the Department of Critical Care Medicine, the Royal Victoria Regional Health Centre, shows that the “Do you want everything done” effect is more than anecdotal–it has a remarkable impact on family members’ treatment decisions.
DiDiodato created a survey that gave respondents a hypothetical scenario in which they were a surrogate decision maker for a loved one who is critically ill. Respondents were asked to decide whether or not to withdraw life-sustaining treatment, based on their loved one’s hypothetical age; prognosis for survival, physical function, and communication; length of stay in the hospital; and stated preferences, all of which were given in the scenario (see table for examples).
Unsurprisingly, the survey respondents subjects were more likely to consider withdrawing life-sustaining therapy in older patients, those with a worse prognosis, those who had been in an ICU for a longer period of time, and those who had expressed their wishes to not be kept on life-sustaining therapy. The most influential factors affecting the decision were age and stated patient preferences.
Knowing that the patient “wanted everything done” had a significant impact on survey respondents’ decisions. Even in the worst case scenarios, when the hypothetical patient was older and had poor prognoses, when patients said they “wanted everything done,” survey respondents said they would withdraw life-sustaining therapy 18.8% of the time on average, compared to nearly 60% of the time for patients with similar characteristics but different stated preferences.
“Regardless of a patient’s age, time spent in ICU, poor prognosis for survival, or recovery, once a surrogate decision maker has heard a patient given an affirmative response to “Do you want everything done?” the likelihood of WLSTs is markedly diminished by a factor of 2–3 times compared with another phrase that may have been used to elicit a patient’s goals of care and values,” DiDiodato writes.
This is problematic because usually when patients agree to have “everything” done, there is little or no discussion about what “everything” entails. It could mean surgery, harsh therapies, or indefinite life support. It could mean that the patient is kept alive but with no ability to communicate or move at all. This presents serious ethical problems for both patients and clinicians.
For example, as Dr. J. Lane Wilson recalled in a heartbreaking story earlier this year, the family of a woman who was dying of sarcoidosis refused palliative treatment, insisting that the clinicians do “everything they could” to keep her alive. What the family did not know was that “doing everything” meant that the patient “spent the last months of her life in the hospital, barely aware of her surroundings other than her struggle to breathe” and that the last thing she saw before she died was “a stranger pounding away at her chest.”
DiDiodato concludes that clinicians “should never use the phrase ‘Do you want everything done?’ as part of soliciting a patient’s goals of care and advance directives. By using this phrase, not only are they asking for informed consent to provide an intervention that does not exist, but they are also potentially exposing both the patient and their surrogate decision maker to a future of needless suffering.”
At the same time, we should make patients and families more aware of the harms and benefits of treatments, and stop equating palliative care with “giving up,” to encourage patients and surrogate decision makers to engage in conversations about what they really want at the end of life, rather than defaulting to “everything.”