We have virtually all been there, are there now or will be there someday: A loved one is critically ill, and his or her physician is talking to us about the patient's prognosis.
She wants to know how we would like to proceed. She's asking what we think our loved one, hovering in a twilight world, would want. She keeps on talking, though her voice is coming through distant and garbled. The doctor's words are scaring us.
For a majority of people gathered at the bedside of a critically ill patient, new research finds that confusion and miscommunication rein, jostling for space alongside hope and fear. In more than half the cases plumbed by researchers at four major academic medical centers, the people responsible for directing the care of a critically ill patient neither agreed with nor fully understood the prognosis offered by the physician overseeing the patient's care.
At a moment when the costs and quality of "end of life" care have animated national conversation, researchers set out to explore the dynamics of communication between intensive-care physicians and the friends and families who step in to speak for their critically ill patients. The researchers used surveys and structured interviewing techniques to gauge how often and how fully these surrogates understood or agreed with the intensive-care physician who supervised their loved one's care on the patient's prognosis.
Their findings, published Tuesday in JAMA, will feel familiar to many.
In 53% of the cases researchers dissected, a patient's surrogates and his or her physicians were not on the same page about the prospects the patient would ever leave the hospital, given the treatments available. In 103 of 229 cases reviewed, surrogates substantially misunderstood what the physician believed. And in 65 of those 103 cases, surrogates disagreed with the doctor's belief as well.
In a few of those cases of disagreement -- 20% -- surrogates held a grimmer view of the patient's prognosis than did the patient's physician. Far more commonly -- in close to 46% of cases -- surrogates were simply far more optimistic than was the patient's supervising physician about the patient's prospects of leaving the hospital alive.
When asked to explain their optimism, these surrogates often acknowledged they were clinging more to hope than reason. They placed their faith in a patient's will to live and touted his or her fighting spirit. Many insisted that "staying positive" would improve their loved one's chances.
Those findings underscore that, when it comes to caring for patients who are at high risk of imminent death, families and friends frequently hold beliefs that would prompt them to demand aggressive and often futile treatments for their loved one.
Sometimes these treatments save the patient, but sometimes they make his or her final hours of life a stressful -- and painful -- whirlwind of tests and procedures. And often, had hope and confusion not clouded their judgments, a loved one's death would have been more peaceful, less harrowing for loved ones and less costly.
In a recent study, 100% of patients surveyed on what constitutes a "good death" said they would want as much say as possible in where, when and in whose company they died, and 85% cited the importance of being pain-free. On both counts, surrogates' confusion may make it less likely that such conditions are in place.
"Families are internally conflicted about prognostic information, both seeking and avoiding the information, struggling to integrate realism and hope," wrote three editorialists in an invited commentary published by JAMA. "Coping strategies that are either conscious or unconscious, such as substituting their own beliefs or engaging in magical thinking, may not only impair families’ ability to comprehend information," they said. They may also "impair the quality of end-of-life decision making for patients and compromise their own capacity to recover from loss of a loved one or shoulder caregiving responsibilities for disabled survivors."
In this study, when surrogates were asked to estimate a patient's prognosis, they fared just a bit better than a random guess. The physicians who were asked were significantly more accurate in their estimates.
That, wrote the trio of editorialists led by Dr. Elie Azoulay of Hopital Saint-Louis in Paris, underscores the importance of physicians learning to better communicate their assessments to patients' surrogates and to "optimize the ability of surrogates to hear, absorb, integrate and use information" they provide.
"Ideally," they wrote, "the discussion begins with the question to the family, 'What is your understanding of what the clinical team expects to happen?' or 'What has the team told you about what they expect?'"