A Multidimensional Assessment of Surrogate Decision Quality in Neurocritical Care for Patients with Stroke

When a severe stroke strikes, it can silence the part of the brain that allows a person to speak, think, or make choices. In these moments, the weight of life-and-death medical choices falls not on the patient, but on a family member standing by their bedside. This person, often a spouse or child, must act as a voice for someone who cannot speak, navigating a maze of treatments while trying to guess what the patient would have wanted. This role is known as surrogate decision-making. It is a profound human experience, yet for doctors and researchers, it has been difficult to measure how well these family members are doing their job. For years, the medical world has often looked at just one thing to judge the quality of these decisions: whether the family felt satisfied with the process. But satisfaction is a single note in a complex chord. A family might feel satisfied with how a decision was made, yet still feel a deep sense of regret later, or they might feel the care did not truly match the patient's own wishes. Understanding the full picture requires looking at how these different feelings interact, and whether relying on a single feeling gives us a complete view of the situation.

A team of researchers in China set out to explore this complexity by listening to the stories of 315 family members who had recently made decisions for patients with severe strokes in a major hospital. They wanted to see if the standard way of measuring decision quality was enough, or if they needed to look at the situation through three different lenses. The first lens was decision satisfaction, which asks if the family felt the process of choosing a treatment was handled well. The second was decision regret, a feeling of sorrow or doubt that a different choice might have been better. The third was whether the family felt the care the patient received actually matched the goals and values the patient held before they became ill. By gathering these three perspectives from the same group of people, the researchers could see how they overlapped and where they diverged.

The study revealed that these three feelings are related, but they are not the same thing. Most families reported high levels of satisfaction with how decisions were made, suggesting that the process itself was generally handled with care. However, when the researchers asked about regret, the picture changed. More than 60 percent of the family members said they felt some level of regret about the choices they had made. This regret was not random; it was more common when the patient had a hemorrhagic stroke, which involves bleeding in the brain, or when the patient required a tube for feeding or a ventilator to breathe. It also appeared more often when the family had to shift from aggressive life-saving treatments to more restrictive care. Interestingly, the feeling that the care matched the patient's goals was present in about 78 percent of cases, yet this feeling did not strongly predict whether the family felt satisfied or regretful. A family could feel the care was true to the patient's wishes and still feel deep regret, or feel satisfied with the process but uncertain if the goals were met.

The researchers found that specific details of the illness and the family's background shaped these feelings in different ways. For instance, families dealing with a hemorrhagic stroke were more likely to report lower satisfaction and higher regret. Those with higher household incomes also reported lower satisfaction, while families who had cared for someone in an intensive care unit before were more likely to feel that the care aligned with the patient's goals. The study showed that decision satisfaction and regret were moderately linked, meaning they often moved in opposite directions, but the sense of goal-concordant care stood apart, showing only a weak connection to the other two. This suggests that a family's emotional reaction to the process, their lingering doubts, and their sense of whether the patient's wishes were honored are distinct experiences.

The conclusion from this work is that we cannot judge the quality of a surrogate's decision by asking just one question. If a doctor only checks if a family is satisfied, they might miss the heavy burden of regret or the uncertainty about whether the patient's true wishes were followed. These three measures capture different parts of the human experience during a medical crisis. By looking at all of them together, medical teams can better understand the unique needs of each family. Some may need more information to feel confident, others may need emotional support to process regret, and some may need help clarifying what their loved one would have wanted. The study suggests that a multidimensional view is necessary to truly support those who must speak for the silent.