By Guest Columnist Amita Sudhir, MD
The sad case of Charlie Gard has been in the news recently—a baby with a fatal and incurable disease, a hospital at odds with the parents’ desire to leave no stone unturned in finding a cure for the child, an American president who got involved in a medical case across the ocean, a controversial experimental therapy, and a case that ultimately ended in the death of the child after a media maelstrom.
The conflict in this case arose because the hospital and the child’s physicians believed that there was no hope for any kind of significant recovery for Charlie, while the parents, hoping against hope, wanted to bring him to America for an experimental treatment that had never been used for his condition before. That is perhaps an over-simplification of an incredibly complex situation, and as a physician who has never treated either this child or the condition he suffered from, I will refrain from making any pronouncements on the ethics of this case, or what should or should not have been done.
This case does highlight one of the overlooked but important parts of our profession—when physicians have to communicate with families that there is no more hope. We spend years in training to save lives. Most of us went to medical school to help people get better. We are taught to diagnose, treat, reassess. We are taught that our minds are our most important tool, that we can achieve miraculous things with the resources of modern medicine. We can restart a human heart, monitor the pressure in a brain, breathe for a patient when their own lungs can’t, maintain their blood pressure with medications when otherwise they would die from shock, surgically repair a failing organ, and bring people back from the brink of death. We are taught how to do all of these things in medical school and residency, but what we are never explicitly told is there are times when we have to abdicate all those skills, and use our hearts, not our minds, to tell a patient’s family that there is no more hope, and despite all the wondrous options modern medicine has to offer, there is not a single one that will help their loved one be well again. We learn to do this on the job, and doing it well is a difficult task.
This is all the more true when the patient is a child. As a parent, I can empathize completely with another parent who wants to try anything, no matter how far-fetched, if they think there is even the faintest of chances they will bring their child home again, healthy. The parents of some terminally ill children find it difficult to accept that their child will never be well again, and their position is completely understandable. It is up to us as physicians to compassionately but clearly lay out what the expectations are and what the limitations of treatment are, but to wait for the parents to reach a state of acceptance that can’t be rushed. Watching a parent who believes that their dying child will be well is gut-wrenchingly hard, but not everyone is ready to process that kind of devastating news as soon as it is handed to them. The worst thing a physician can do in this situation is to offer a hope that does not exist. It is so tempting when faced with a parent clutching at straws to offer words of comfort that involve even the shadow of a chance. But while it may make them feel better in that moment, our own inability to accept the limits of our profession can cause immeasurable hurt to that parent in the long term. To communicate the inevitability of death we have to be willing to accept that many outcomes are out of our highly trained hands.
With dying adults, the job can be easier, but is sometimes complicated by family members who want different things. No sooner have we discussed imminent death with one daughter, who agrees that her father would not want to be on life support and would like to have the ventilator turned off, than another daughter arrives who does not want to accept that outcome. While we can’t make a decision for that family, it is important for us to be clear about the inevitability of a death when we know it is going to happen. As physicians who are trained to save lives, it can often be hard for us to accept this ourselves, but we owe it to the patient’s family to be realistic and not hold out false hope.
Equally often, families look to us for answers that will guide their decision. Several years ago, a woman came in with her uncle who had dementia and a terrible case of pneumonia with sepsis, a bloodstream infection that had spread throughout his body. Most of his organs were failing and we had to decide whether to put him on a ventilator or make him comfortable and allow him to die peacefully. I outlined what the options were—put in a breathing tube, allow the ventilator to breathe for him, give him antibiotics and other medications, and hope for the best knowing that his chance of survival was minimal but that he might linger for days on life support, or let the disease take its natural course knowing there was not much to do to reverse the damage already done.
The patient had no other family, and I could tell that the decision was a terrible burden for the niece to bear. She asked me for some time to think about it, but I told her that if we were going to intubate we would need to do it soon; she had only a few minutes to decide. She put her head down for a moment, and then looked at me and asked, “What would you do if it was your uncle?” Intellectually, I wanted to tell her that I couldn’t make that decision for her, that every patient and family were different, that she had to decide for herself. But emotionally, I knew she wasn’t able to do that, so I told her that if he were my own family member I would do no more than allow him to die peacefully. She looked relieved and said that would be her decision as well.
When he passed away a couple of hours later, she cried and told me she knew he wouldn’t want to be on prolonged life support but that she was just afraid to make the decision to let him die. Sometimes families need a lot of discussion between themselves about the options; sometimes they just need our help with choosing a path they already know they want to take.
These interactions take a toll on physicans. We are supposed to be highly trained life-saving machines, so when we find ourselves in the situation of having to admit to a family that we have failed at our task, the sobering reality that we are not omnipotent can be overwhelming, even in cases where we know that the abysmally low odds of survival were predetermined before the patient even set foot in the hospital.
This is one part of the job that gets harder, not easier, the more times you do it. But we also take comfort in knowing that if we can help those families through the worst moments of their lives with compassion, with a kind hand, and a steady heart, that is worth as much in emotional terms as all the tricks in our medical arsenal.
Despite all the advances being made in medicine every day, there are still so many diseases we are unable to effectively fight with science. Accepting that reality is the first step to being able to offer a compassionate alternative to treatment, and to offer that alternative in such a way that families can make their peace with it, if not now, then at some point in the future.
Regardless of one’s opinion on the ethics of the Charlie Gard case, that his parents never had that opportunity is heartbreaking.