a real life experience
We often come across younger patients especially children who are diagnosed to have illnesses/diseases with poor outcomes. These may include a child diagnosed to have cancer of blood (leukemia) or cancerous tumor of brain (glioma), etc. In our normal medical practice, we discuss in detail about the disease with the patients and immediate family members. Areas of discussion involve the nature and likely progression of disease, the likely causes of the disease, the different modes of treatment (including expensive medicines, operations, etc) and the expected outcomes of disease & treatment.
In case of children, parents often tell us not to share any medical details with the child, fearing the child would get depressed, won't be able to handle the "bad news" and many other excuses. Sometimes, we are asked to tell a lie to the child- for example, in stage IV glioma of brain, the expected survival could be 6 months to 12 months. In this case, parents may ask us to tell the child that "he does not have tumor" and that "there is no risk to his life because of the illness".
Are we justified in not sharing medical details (bad news) or distorting the facts to child patients?
I want to share an experience that I recently had.
An 8-year-old child Arjun was referred to me by the radiation oncologist for control of convulsions (fits). Arjun was diagnosed to have grade IV (late stage cancer) glioma of brain and was receiving chemotherapy after having undergone a brain operation. In my OPD, Arjun's parents met me first and urged me not to disclose anything to him about the illness including the diagnosis and likely outcome, and to tell him that "he will be well soon". They told me that Arjun does not know anything about his illness and outcome. I told them I would do what they expected of me.
When parents brought the child in, he looked very calm and composed. He was on a wheel-chair as he could not walk due to weakness of legs (due to brain tumor). He had a beautiful smile on his face. While interacting with him, I found him to be very intelligent and smart. I asked his parents if I could privately talk to Arjun and they agreed. As soon as his parents left the room, Arjun told me he knows everything about the illness. He had read the doctors' medical notes and then surfed the internet. He told me that he has grade IV glioma and that at best he would survive for less than six months. He told me not to disclose to his parents that he already knows all about his illness; otherwise they would feel "hurt".
Next I sent Arjun out and told his parents about my discussion with the child. They stood speechless and expressionless. They were shocked! Here, we had a family living in denial....that the other party does not know anything!.
Today, information is easy to get and at one click, one can find all about the disease. So, hiding information from a child may not be easy. On the other hand, I feel sharing all details over 2-3 meetings is more appropriate. In my medical practice, I like to tell all about the illness to my patients- old or young, men or women....unless, of course, they dont want to know (which is very rare).
(Arjun is the changed name to hide the identity)
Dr Sudhir Kumar MD (Medicine) DM (Neurology)
Apollo Hospitals, Hyderabad, India