Abstract
Young Jiafu had been vomiting nonstop for the past five minutes. It seemed like an eternity to the nurse who could hear those painful retching efforts from her station. Frustrated, she marched to Jiafu's room, and carefully choosing her words, reemphasized to the boy's father that it was time to stop with that nonsensical Chinese drug.
Jiafu was an 11-year-old boy who was diagnosed with brain cancer 3 years before and treated with all available therapies (surgery, radiotherapy, and chemotherapy). Eventually, the tumor proved resistant to all treatments, and doctors recommended that only palliative care should be continued. At that time, the child's life expectancy was down to a few weeks. However, Wenhao, the boy's father—an immigrant from China who still couldn't speak Italian 20 years after entering the country—decided to contact a “cancer specialist” from his motherland. The “specialist” suggested a drug that apparently was part of traditional Chinese medicine, and recommended its use four times a day. In addition, he prescribed to stop all other treatments, including steroids and antiepileptic drugs, with the only exception of mannitol. After a major seizure episode, the child was admitted to a pediatric intensive care unit (PICU), restarted on antiepileptic drugs, and as his symptoms were receding the doctors recommended transferring him to our inpatient hospice.
Wenhao accepted this suggestion with grace, as managing the sick child at home had become basically impossible. Both parents had to work full time to pay their rent and bills, and there was another six-year-old child to take care of in the household. Of note, the already difficult financial situation of the family was seriously strained by the high costs of the “antitumor” drug that was shipped directly from China.
At the time of hospice admission, Jiafu was bedridden with hemiplegia; however, he was able to communicate and was not experiencing pain or other noncentral nervous system symptoms. Moreover, the antiepilepsy drug cocktail prescribed in the PICU seemed to work, and no further seizures had occurred. Jiafu let us know that he felt more comfortable with male doctors, and appeared to enjoy the friendly informal hospice environment. The first few days after his admission he often joked with the health care personnel—once he even asked to replace an “oldish” physical therapy specialist with a “cuter, younger one.”
At the time of admission, his father informed us—through a “cultural mediator and translator” who was always present every time we talked—that he wanted to continue the administration of the Chinese drug, which for him represented some kind of a miracle treatment. After determining that the drug contained only some laxative herbal extracts we accepted his request, provided that we continued to administer palliative therapy regardless of the Chinese “specialist” suggestions. Unfortunately, each administration of the “miracle drug” was followed by serious episodes of vomit and diarrhea. We thus called for a family meeting and tried to explain to Wenhao that the used herbal extracts were just making Jiafu feel uncomfortable with no chances whatsoever to exert any meaningful antitumor activity.
But Wenhao didn't change his mind. “My son is still alive because of this treatment. Vomiting and diarrhea are good signs. They mean that bad toxins are leaving his body. If it were for Western medicine he would already be dead.” We tried to explain that our estimates of Jiafu's life expectancy were not meant to be 100% exact, and that the side effects of the “miracle drug” had nothing to do with any antitumor effect. Yet Wenhao was absolutely positive that Jiafu was still alive because of the Chinese drug, the purchase of which—we suspected—was having a massive negative impact on the family finances.
In the next few days, all the hospice team involved in Jiafu's care felt that they could no longer observe silently those painful vomiting episodes. A second family meeting followed, in which the administration of the “miracle drug” was formally prohibited. Wenhao appeared to accept this order, perhaps fearing that, if not compliant, he would have to bring his boy back home. Sadly, we rapidly found out that he was continuing his treatment without letting us know.
At the beginning Jiafu had accepted to take the “miracle drug” trusting, as his father had told him, that it was something necessary for his survival. In the following days, however, Jiafu became more drowsy and it became progressively more difficult for his father to give him the drug four times a day. Wenhao tried to keep him awake with television and smartphones, but Jiafu started resisting the treatment. We also noticed that he was excited and thankful when the hospice providers entered the room as that meant that his dad was going out at least for a while. Interestingly, his mom never openly questioned her husband's strategy, although she seemed to have a more skeptical attitude toward the “miracle drug.”
The situation was rapidly reaching a critical point. Collectively, our team of health care providers felt that the only solution was to alert social services and to report Wenhao's behavior to the judiciary system. The emergence of dysphagia eventually ended this conflict before us taking any further action, as the father finally realized that his son was unable to swallow and that any further attempt to feed him the “miracle drug” would have caused serious respiratory problems. Jiafu became progressively more drowsy and passed away peacefully a few days after.
This rather unusual clinical case presented us with a difficult ethical dilemma. We asked ourselves if we should have been more aggressive in protecting Jiafu from a useless and painful “therapy,” even though the intervention of social service most likely would have resulted in the boy spending the last few days of his life without his father.
Our awareness of how painful the experience of Jiafu's disease was for his entire family had somewhat mitigated our hostility toward his father. In contrast, the presence of significant cultural and linguistic barriers had made it quite hard to maintain a positive relation with Wenhao and to avoid overt conflicts. As per our standard protocols, a month after Jiafu's death we phoned Wenhao to get his feedback about his overall hospice experience (and, of course, to find out how things were going for the family). He was kind and thanked us for our help with Jiafu's disease. But his last words were “Maybe the Chinese “specialist” just took advantage of us… or maybe, if I had started the treatment earlier… who knows?”