Michael Rubin, M.D. Answers Questions On: Shared Decision-Making

Family members of patients often have a difficult time putting together their experiences and conversations with their loved one so that the care team can get a sense of how to act on their behalf. Our bioethics committee is dedicated to making sure that families have the understanding and support they need when making these very complex and stressful decisions.

Sometimes people just need clarification of the medical issues and options. In some cases, there may be disagreement about what the best course of action would be, whether between family members or between families and physicians. Often, however, everyone involved essentially agrees on what should be done for the patient, but they are so caught up in the emotion of the moment that they don’t realize it.

In these situations, what we do is provide an objective third-party sounding board, rather like a mediation. We get people together around a table, listen to their points of view, and help them see that there is actually more consensus than they think.

Neurocritical care is a moving target. As the technology changes, so do the outcomes, and today’s outcomes may well be different than they were five or even three years ago. In order to do traumatic brain injury and neurocritical care well, you have to have enough volume that you’ve seen even those cases that initially looked very unpromising turn around and go well. So you know there is a chance that a patient may do a lot better than first expected.

When family members see a patient unconscious, on a ventilator, they can be so upset by the patient’s appearance that they lose hope. They are also often influenced by their own ideas about this type of medical crisis. For example, they may have heard that stroke or traumatic brain injury is nearly always impossible to recover from.

But even when patients look terribly ill, they may actually have a reversible condition and a good chance for recovery. So a large part of our work in neurocritical care has been the quest to develop more accurate prognoses regarding whether or not a patient is likely to recover, and then help family members understand the situation well enough that they can make an informed decision.

It’s very common for patients not to have a living will. Even when they do, the documents that have been drawn up often do not answer all the questions that can come up in a particular clinical scenario.

For example, a living will may say something like, "I would not want life-supporting therapy if my physician thinks I have a low likelihood of recovery." So then, it comes down to the physician’s judgment, and how strongly that physician feels about his or her opinion of the situation. Even if a health care surrogate has been appointed, the person may not understand, for example, that every stroke is not the same, or that even patients who look extremely sick may have a chance of recovering.

If you had an advance directive that could cover every specific scenario in detail, it would be 300 pages long. So health-care decision-making when a patient has a life-threatening neurological condition will always be something of a fluid situation. That’s why it’s so important to provide bioethical resources to help families work through these questions and concerns as they emerge.