There are no secrets between us

“Don’t tell her.”

The old widow with incurable cancer had been hustled out of the room by her other children, leaving her eldest daughter, whose eyes were hard and flat. The next few minutes are usually quite easy to anticipate: ‘The patient is a very pessimistic person’; ‘I want her to keep her fighting spirit’; ‘I don’t want her to know, she will think of suicide’; ‘Her third brother’s son, a nephew now working as a doctor in the USA, doesn’t want her to be told till he is back in three months time’.

The above patient is composite and fictional, in the interests of the sanctity of medical confidentiality. Nonetheless, the actual scenario does play itself out quite regularly in the hospitals of Singapore. How does a physician manage a request from a family member not to disclose a diagnosis to the patient involved?

In many Asian cultures including Singapore, illness of the individual is a matter for the family. Family members feel entitled to some priority in knowing the diagnosis and prognosis of a patient. A family is however a heterogenous entity with varying values, insight and influence between members, and often, different members react very differently. In most situations, we are able to reach some sort of consensus that is satisfactory to all sides concerned. At the same time, our own purportedly universal code of medical ethics derived from an Anglo-Saxon heritage emphasizes the rights of the individual patient, particularly in terms of autonomy. How is it possible to obtain truly informed consent from a patient, if he or she does not know the full background?

There are many uncomfortable questions that arise from incomplete disclosure. Is it right to subject a person to the risks of surgery and chemotherapy, if he or she does not know why the procedure is being performed? Would we want to realize that our own children have withheld a diagnosis that was available six months ago?

Nonetheless, it is commonly accepted that there are reasons to defer disclosure. There are times when the patient may not be in a fit state of mind, particularly there is a reason for the physician to believe that disclosure may precipitate suicidal depression. It is also not unusual for some elderly patients of ours to tacitly give up the responsibility of decision making to his family.

Now suppose the oncologist agrees to a request for withholding of information, for one reason or another. Incomplete disclosure can make for surreal consults. I remember visits when the patient stared straight ahead while accompanying family members winked, gesticulated and nodded their approval while standing behind the patient. I often wonder what the patients are thinking about their own illness as they chat with fellow patients sitting next to them, with complete hair loss from chemotherapy. It may seem somewhat surprising to some, but in my experience, these patients often know much more about their own illness than they let on. It then becomes a wayang, when everyone merely skirts and dances around the gorilla in the room.

Do you think ignorance is bliss?