Cultural Perspectives
When I was growing up in Mumbai, India, one of my neighbor’s mother would make regular visits to the Tata Memorial Hospital, one of the largest Comprehensive Cancer Centers in Asia. By then I was a medical student at the Medical School in this Hospital Complex. I offered my help, but her children declined it saying that their mother did not actually know her diagnosis. I asked them why she thought she was going to the Cancer Center, and why she was feeling worse.
“Oh, we have told her that she is anemic, and she is getting shots to help her”. It turned out that she had acute leukemia, declined rapidly, and died within a few months. Apparently, she was never told why she was so sick. It was not unusual to think that the elderly parents would not be able to handle the grave diagnosis, and would get severely depressed and die faster.
Since I have been practicing in the United States, I have encountered this same request from families of recent immigrants. It is hard to navigate the balance between our culture of full disclosure and the culture of withholding of potentially depressing truth. In addition, often there is a language barrier, and often the caretaking children refuse a professional interpreter. They prefer to do the translating themselves, clearly filtering out what they do not want to translate.
It puts treating physicians in a difficult spot. Our primary responsibility is to the patient, especially if they are competent to make their own decisions. On the other hand, we do not want to upset the family dynamics. The children are going to be the main caregivers. It there is a conflict for medical decision making, the patient is at the mercy of the children.
I try to counsel the children that their old parent is aware that something is seriously wrong, which is why they are in my office, or in the hospital. Withholding information can increase anxiety. If we can acknowledge their diagnosis, we can assure them that their pain will be adequately managed, that they will not suffer. I assure the family that I will be gentle in the discussion, that we will address the diagnosis and symptoms and potential treatment. I will answer the question “how long do I have to live” only if asked.
I often break through the family barrier with this approach. If I still meet resistance, I insist that I have to satisfy my professional obligation to the patient. I need to ask the patient if he/ she wants to be part of the conversation, or wants to defer it to the children. After that, we move forward according to the patient's preference.
Reconciling old world practices with modern medical practices requires some give and take on all parts. Families need to understand that the dying person knows that they are dying. If we acknowledge it, there is opportunity for trust building and reassurance that their physical and medical needs will be addressed. Also, there is time to fulfill religious needs and resolve family issues.
On our part, if we get a broad sense of what the patient wants, we can respect the family dynamics.