I often say to my students that debates involving end of life care are so deeply contentious because they raise very fundamental questions about what defines a life worth living and who gets to decide. This is further complicated when the life in question is that of a child. Muddying the waters still more is the tendency of politicians unconnected to the case to use the heartbreak and suffering of others as a mechanism for ideological grandstanding. Add to all of this the very distant promise of experimental treatment and you have the incredibly sad case of Charlie Gard. Nearly every bioethicist I follow on social media has weighed in on this case over the past few months. Now the case has come to a close; Charlie Gard died a few days ago after entering hospice. I really had not planned on writing about Charlie’s case even though I have been involved in similar conflicts between providers and patient families as a member of ethics panels. However, I had a somewhat contentious discussion with a hospital social worker regarding this case; she argued that had she been assigned this case she would have advocated for Charlie to receive whatever treatment her parents saw fit. I disagreed. As painful as it may be, I believe the medical staff made the correct decision to resist further medical interventions in Charlie’s case. Doing otherwise would have simply prolonged his suffering.
We all face at some point the grief of losing parents or grandparents. We may find solace in thinking about the long life they have lived, the legacy they have left behind, and the many years of happiness we have had with them. The parents of Charlie Gard have no such solace. Charlie was born in August of 2016 with a very rare genetic disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). In short, Charlie experienced a significant depletion of his mitochondria (the “energy supply” for cells) that lead to cellular injury and death. This disease is almost always fatal, and even when it is not, it results in significant brain damage. In Charlie’s case, he had been maintained on life support at London’s great Ormond Street Hospital, one of the best children’s hospitals in the world, since last October. Charlie had severe brain damage, was blind, could not breathe or move on his own, was deaf, and had epilepsy. The muscles in his face were so week that he could not hold his eyelids open, and his eyes were disconjugate. According to the hospital staff, he had also suffered damage to his liver, heart, and kidneys.
The medical staff at Great Ormond Street argued that there was nothing further they could do to save Charlie and that further medical intervention served only to prolong his suffering. For this reason, they advised Charlie’s parents that hospice and palliative care was the most humane thing that can be done for him. While the hospital argued it could do no more, Dr. Michio Hirano, a neurologist at Columbia University Medical Center weighed in and argued that Charlie would benefit from an experimental nucleoside treatment. Charlie’s parents fought to get him access to this treatment. The Pope, the President, and several politicians weighed in, arguing that “the state” was denying Charlie a potentially life saving treatment. In response, questions were raised regarding Dr Michio Hirano’s financial link to the company that produced the experimental treatment he was advocating. As legal appeals were being pursued Dr. Hirano acknowledged that recent MRIs indicated that it was highly unlikely Charlie would benefit from the experimental therapy. Charlie’s parents decided to drop further appeals and moved him to hospice where he died. Every parent can sympathize with his parent’s efforts to exhaust every possibility and admire their determination in fighting for their desperately ill son. Before their decision, this case divided the bioethics community with some arguing that his parents should be able to pursue all options and that the state and medical community had no standing to decide otherwise. Some have argued otherwise.
The Challenge for Social Workers
One of the many roles that social workers may assume in hospital settings is that of patient advocate and liaison between the medical team and the patient and patient’s family. One of the more complex situations that social workers can find themselves in is when they are caught between patient and family and the medical staff when there is a disagreement about whether treatment should continue. In the case at hand, we have a child who cannot make decisions, therefore his parents are empowered to make choices they believe will be in his best interest. Charlie’s medical team also made a decision they believed to be in his best interest. Both parties fundamentally disagreed. I have served on ethics panels before and have heard similar cases. So let us assume we are social workers assigned this case: what should we do? Which “side” do we take?
I discussed the Charlie Gard case with a hospital social worker who was adamant that her job is to be an advocate for the family, and that she would have done everything she could to help the family obtain the experimental treatment they had sought. I strenuously disagreed with this position. It is true that social workers are advocates and that there is a special duty to one’s clients to advocate for their right to make decisions they believe are in the best interest of themselves and their families. However, this duty is not absolute. If we believe a client’s choices may be harmful or detrimental to others then we are not obligated to support their choices. In this case, the decision to pursue extraordinary medical intervention would have prolonged Charlie’s suffering while not (according to the opinion of several top physicians) providing benefit. Advocating for the parent’s right to pursue additional treatment would violate our duty to act in the best interest of those who cannot make decision for themselves.
When measures to extend life only cause further suffering, adults have the right to stop such interventions for themselves. When the case involves a child, it must be those who have the best interest of the child at heart who make the choice to stop futile efforts. I have no doubt whatsoever that Charlie’s parents every decision was based in their desire to save and protect him. However, as social workers in this situation we would need to consider whether Charlie’s parents’ grief or fear or difficulty in acknowledging the reality of his condition has in some way clouded their judgement. Sadly, there have been several high profile cases in which parent’s have struggled to accept medical reality. In this particular case, it would be incumbent upon the social worker to support the medical decision of his or her treatment team colleagues and to provide Charlie’s family with the support and education they need to come to terms with his profound illness. I believe the wrong choice would be to exacerbate a difficult situation by further dividing the medical team from Charlie’s parents by advocating that they be permitted to pursue treatments that only prolong his suffering.
While Charlie’s parents eventually made the decision to drop further legal appeal I suspect it is a decision they wills struggle with for a long time. When a decision is made to withdraw life support from a child there will often be painfully nagging questions: did we act with too much haste? Was there some intervention we did not consider? Was there something that could have been done that wasn’t? I think these questions will be particularly haunting to Charlie Gard’s parents as the decision to not seek other treatments or interventions may not have been entirely theirs. I do not know how much of their decision to end further treatment was an acceptance of Charlie’s condition and how much was due to the medical, legal, and political pressures in this case.
We must also recognize that there may have been some solace for them in knowing they pursued every option, including experimental ones that were a long shot. As Charlie’s parent’s said in an earlier interview (prior to the MRI that revealed the experimental treatment was unlikely to work) “Even if it doesn’t work, which I think it will, we know that we’ve done everything.” They were not given this opportunity. But “doing everything” may not always be appropriate or ethical, especially when it is likely to cause more harm or suffering. That said, the decision to oppose a parent’s medical choice should weigh heavily on the minds of the doctors, nurses, and social workers who are part of the decision. However, the burden of that choice should not prevent a social worker for making a choice that is ultimately in the best interest patients who cannot speak for themselves.