Doctors need to do better when talking to families about critically ill patients

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The values and preferences of critically ill patients are often not addressed when doctors are discussing their care with family members, according to a study that suggests there's plenty of room for improvements in communication.

These conversations are an essential component of shared decision making, which depends on clinicians taking the time to explain the benefits and harms of treatment options and also listening to patients and families explain what they hope to gain from any interventions. When it's done right, shared decision making improves patient satisfaction and helps ensure that care plans are designed to achieve outcomes most important to patients and families.

For the study, “Clinician-Family Communication About Patients' Values and Preferences in Intensive Care Units”, published in JAMA Internal Medicine, researchers assessed what transpired in 244 conferences between clinicians and families of patients in acute respiratory distress and at least a 50% chance of dying in the hospital.

Patients were 58 years old on average and hospitalised in intensive care units. They were unable to advocate for themselves; families had to decide what treatment to provide, and when to focus on comfort care rather than aggressive interventions.

Only 68% of these conferences included discussions of patients values and preferences for end of life care. And these conferences specifically applied patients' values to treatment decisions just 44% of the time.

Good communication "can provide people time to say goodbye, to participate in religious or spiritual rituals, to complete items on a 'bucket list,' and sometimes even to die at home," said lead study author Dr. Leslie Scheunemann of the University of Pittsburgh Medical Centre.

"It can improve symptom management, reduce suffering, and provide emotional support to families," Dr. Scheunemann said. "Conversely, worse communication can contribute to patients receiving potentially burdensome treatments they would not have wanted, distract people from saying good-bye, and increase how stressful and burdensome decision-making is for families."

In only 36% of the conferences did clinicians and families discuss important considerations for end-of-life care like how much patients would want to retain cognitive, physical or social functioning or the role of spirituality in their lives.

Clinicians made treatment recommendations based on patients' preferences in just 8% of the conferences.

The study wasn't a controlled experiment designed to prove whether or how these conferences might improve shared decision making or how giving patients and families more say in their care might impact quality or patient satisfaction.

"Physicians tend to focus on making a decision about the processes of care (should we intubate? should we resuscitate?) whereas patients and families think about the outcomes of that care," the researchers said Dr. Terri Fried of the Yale School of Medicine, and author an invited JAMA editorial about the study. 

"If this is not fully discussed at the time a treatment decision needs to be made in the ICU, then patients won't receive the care that is either most likely to achieve the outcomes they want or avoid the outcomes they don't want," said Fried, who wrote. 

Patients and families may need to speak up and ask very direct questions to ensure they get the care that feels like the best choice for their specific circumstances and values, Fried advised.

"Patients (if they are able) and families (if they are making decisions on behalf of a patient) need to ask doctors to be clear on what all the reasonable choices are in any situation, and what is most likely to happen if they pursue one choice or another," Fried said. "One strategy that is gaining in popularity is to ask physicians about the best case and worst case that could result from each choice."