Remembering Charlie Gard: 3 Powerful Lessons Learned 1 Year After His Birth

For months, the uncertain fate of a British-born infant raised a difficult question for parents and doctors around the world: What would you have done if you were responsible for the complex medical and ethical decisions surrounding the life of Charlie Gard?

Legal scholars, medical leaders, the U.S. president and even the Pope have held forth on how best to treat the child while respecting the rights of the parents.

Charlie would have turned a year old on Friday, Aug. 4. This is a sad milestone and an important moment to reflect upon his life and legacy.

Where Some Saw Hope

Diagnosed in September with mitochondrial DNA depletion syndrome (MDDS), Charlie’s rare genetic disease weakened his muscles and caused irreversible brain damage. Because of this condition, he could not breath or eat on his own, or even see his parents.

In the United States, an experimental therapy offered the potential for slight improvement in muscle function, but with no hope for reversing his severe brain problem. U.S. researchers had tested the treatment on mice and on 18 patients with a similar, but not as severe, genetic disorder.

In January 2017, a crowd-funding campaign in Charlie’s honor raised nearly $2 million, enough to finance his care in the United States. In June, London’s Supreme Court ruled that Charlie could not be sent overseas, reasoning that any additional treatment would only prolong the child’s suffering.

As a physician who has cared for patients with little hope, and as a parent who knows the overwhelming love we feel for our children, I remain uncertain how best to resolve these painful questions. For doctors and patients, however, there are three lessons to be learned from this tragic situation.

1. Rational Decisions Are Impossible In Moments Like These

I remember too well the final weeks of my mother’s life. On a Sunday in late December, she called me from Florida, beaming. She had just won a golf tournament. A couple of days later, my father called to tell me her chronic leukemia underwent a “blast crisis,” overwhelming her body’s defense mechanism. Consequently, she experienced severe pneumonia, followed by a stroke that paralyzed the left side of her body.

My father knew her time was limited. She was the love of his life. In the hospital my dad told me, time and again, that he would empty his savings to spend a few more days with her. I know he would have, but I don’t think it would have been the right decision. When facing the death of a loved one, a few extra days seem priceless. Looking back in the context of one’s life, they are a rounding error, unlikely to ease our suffering or provide the resolution families seek.

The challenge becomes far greater for a parent deliberating over the life of a terminally ill child. Few of us could accept the inevitability of death in such an instance, let alone make a clear-cut decision about when or if to let go. And yet, that is what Charlie’s hopeless situation required. And if it was so painful when the chances of full recovery were zero, imagine if the odds were one in a thousand or a million. And what if the treatment involved severe pain?

In such cases, the U.S. legal system typically defaults to the parents. In Charlie’s case, the British system did not. It is worth considering, regardless of where difficult decisions are made, whether we as parents are too pained in these moments to decide on behalf of our child.

2. False Hope Is Worse Than No Hope

One of the hardest moments a physician must face is admitting when nothing more can be done by way of treatment. In training, we are taught to give hope, to tell people there is always a chance. Time and experience prove otherwise.

Physicians may not always know whether death will come in days or weeks but, in cases like Charlie’s, time is invariably short. With his muscles too weak to support breathing, Charlie died soon after being taken off mechanical respiration.

When it comes to their patients, physicians aren’t very good at addressing difficult truths. Often, medications that will extend the life of some patients by a few months will shorten the lives of most other patients. Doctors tend to emphasize the former fact and play down the latter.

If a doctor says, for example, “This treatment might make your baby's muscles slightly stronger,” would most parents be able to understand if the outlook on the child's overall health remained bleak? Or would they hear only words of hope and cling to the possibility of a miracle cure?

As physicians, we are more comfortable offering ambiguity than absolute clarity. But based on the scientific literature, this approach is not what’s best for patients or their families. The truth may be painful to disclose and even harder to hear. But when doctors deliver it with compassion, people are better prepared to make the best choices for themselves and their children. This is the essence of “informed consent.”

3. Money Complicates Difficult Decisions

Whether we like it or not, money is a powerful motivator. In situations like Charlie’s, the government or the insurance companies would prefer not to absorb the high cost of complex and complicated treatments. Conversely, the doctors and institutions that provide such experimental treatments would doubtless expect to see major revenue and recognition by moving forward.

Under these circumstances, it is difficult to imagine anyone being wholly unbiased—able to separate fact from fiction or mission from money. That’s why it is so difficult to figure out who should make these choices.

As physicians, how we frame the alternatives greatly influences the choices our patients make. Depending on our words, we tilt their decisions in one direction or another, regardless of our intent. The influence of money on these discussions and decisions is not conscious or logical, mind you. It is simply the reality of modern healthcare and its intrinsic economics.

Charlie's Contributions To Our Understanding

The more I thought about the decision-making process in Charlie’s case, the more I realized how futile it is to believe a rational, unbiased choice is possible. We are no closer to knowing what to do the next time a similar circumstance arises, but we can acknowledge the impossibility of the task.

In his 11 months of life, Charlie Gard and his family gave us powerful lessons about parental love and the challenging ethics of healthcare in the face of medical advancement. For parents, there is no grief greater than losing a child. And for both doctors and insurers, separating their needs and desires from those of patients can prove difficult.

Depending on your vantage point, you can see the decisions made in the Charlie Gard case as ethical or despicable. You can perceive those involved as either victims or villains. Regardless of our personal views about what should have been done, we owe Charlie a debt of gratitude for what his life has taught us. His legacy will extend far into the future as generations of medical, legal and religious students analyze, debate and discuss his life and death. May he rest in peace.

This article originally appeared on Forbes.com. The views expressed in this article are my own and do not necessarily represent the views of Kaiser Permanente.