Sorting Fact From Fiction

Providing unlimited care presents major ethical challenges, and the financial costs are substantial. Of course, physicians should be allowed to explain comprehensively to families why care is futile. I think many of us would agree that providing futile care could actually harm a patient because no treatment is without risks. Doing everything can be wrong in certain circumstances, and it’s important to have a conversation about that delicate topic. I’d be remiss if I didn’t say that not all family conferences go well. The dynamics between physicians and family members vary, and strong opinions, especially those expressed or held before a conference even begins, can lead to unsatisfactory outcomes. Strong opinions from family members, and sometimes physicians, may be factors. These physicians remain hopeful despite all odds and always see a silver lining in bad news. Sometimes, though not often, physicians believe that the sanctity of life trumps everything, and they don’t want to be involved in any action that leads to early withdrawal of support. When a family has strong conflicts with the attending physician, it may be time to hand over the care of the patient to someone else who’s willing to consider all options. They often focus on details of daily care and not on prognosis. Physicians also may ask colleagues for advice, which can render differing opinions.

There's Nothing Like A Social Disease

Discussions about a patient may go in many different directions, and decisions may come quickly or not at all, or the patient may receive care without any reflection on whether it’s actually helping. Neurology and neurocritical care are learned by examining patients, talking to their families, and being at the bedside, as often and as long as needed. Among themselves, they often discuss options, best goals of care, how interactions went, and how to resolve differences of opinion. The goal is to create an environment of trust and care. Patients should always have a physician’s best attention and nothing less. Many physicians recognize their own limitations. We’re never rewarded for what we could avoid and are more often challenged for what we missed. That includes training in effective communication and carefully explaining to families what we know, and what we don’t know. We meet with families as soon as possible after their loved one is admitted and confer with them regularly thereafter. Our best efforts, however, may not always reduce the stress on family members or increase their satisfaction with the care their loved one is receiving. We have a long way to go in that regard. What about experimental and unproven therapies? I understand that you’d like my opinion on new treatments you’ve read about.

A Voice In The Wilderness

I’d be happy to share my views. We read on the internet that some centers are saying that they can cure coma. They’re saying patients they’ve treated have woken up after months or even years. But our insurance won’t cover that type of care, and we don’t know if it’s worth the effort and money. It’s important to put the information you’ve read into perspective. We’re committed to helping your daughter, but I’m sure you wouldn’t want her to be harmed or to receive unnecessary treatments. You’re right, but we’ve heard some good things about stimulation and music therapies. And what about stem cell therapy? Families of comatose patients want to know that their loved one’s physicians are doing all they can. Sometimes, though, that doesn’t seem like enough, and family members may look to experimental and unproven treatments for solace. The sheer volume of medical information about coma treatments is confusing, to say the least. It’s hard to keep up with all the competing claims for different therapies, many of which are unknown to neurologists and neurosurgeons. These claims of remarkable recoveries have mushroomed all over the internet and on social media sites.

The Last Time

This creates uneasiness among family members who are facing what, to them, seems to be the same set of circumstances. The physicians they talk to in the hospital seem to paint a much gloomier picture than what they’re seeing online. In other words, these treatments are presented without a meaningful explanation of how they could be helpful. And let’s not forget vitamins, minerals, and even fish oil. Such questions are understandable if a loved one’s progress has stalled, the improvement is minimal, or there seems to be one complication after another. Family conferences to discuss goals of care often are the best setting in which to discuss both medically sound and unproven options for treatment. Allow me to frame the current status of known treatment options. I’ll try to explain what works and what doesn’t, based on research. Let’s start by reviewing some data. First, most individuals who are comatose awaken. They have no recollection of how the days passed, whom they met, who took care of them, which tests they underwent, how many times they were poked with needles, or how often they were in surgery. It doesn’t exclude the possibility that patients who are starting to awaken from coma may be in a twilight zone where they retain select memories of events. Most of these individuals recover rapidly. Unfortunately, we have no way to test them to identify which specific treatments led to the good outcomes. Second, in the acute phase of coma after necessary interventions, we have few treatment options. The best therapy is to have the brain heal itself and to act quickly when complications arise. Physicians withhold judgment on this point because we can’t be absolutely certain that a patient wouldn’t have awakened even without treatment. I can honestly state that we can’t reverse coma if we don’t understand exactly how the interventions work. If we don’t have solid scientific proof of a treatment’s efficacy, we shouldn’t be using it. In clinical science, it’s not unusual that treatments accomplish a goal but also result in complications that negate all their positive effects. Moreover, experimentation can be dangerous for a patient and costly for families who believe the hype and are lured into expensive programs.