Updated: Jan 3
She is accompanied by her adult children and their spouses. They have her wait outside the consultation room. They start, "She doesn't know she has cancer." "We have been discussing her treatment options amongst us and would like your advice before we make decisions"
Another requests,"Can you just tell her its a lump and that you will need to do surgery, but please don't tell her its cancer"
This request makes me want to pose a lot of questions:
1) Why do we let you "pick-up" the report without consultation?
I would expect that if I've performed the biopsy, the report should come to me first. I hand over the report to the patient and explain the findings, carrying on the discussion to the next steps of treatment planning.
Given the fragmented process of breast diagnostics in India, this doesn't always happen, It is common for the patient to undergo imaging in one place and a biopsy at another. All too often, the sample is sent off to yet a third place for pathology reporting. The onus is often on the patient to pick up their report and take it to the surgeon/oncologist they choose.
2) How does her social network have her reports before she knows?
The seemingly trivial task of "picking up" the report is done by family members, so the patient won't have to.
If the report is 'anything serious', the patient would then be protected from the initial shock. The person picking up this report of cancer is now burdened with a whole new responsibility that he or she may not be capable of taking on. How this case will unfold, will begin here with this person, and not in the doctors office.
He or she will read the report, browse the internet to figure out what it means. The report may be 'Whatsapped' to a distant cousin who duly emails it to an oncologist overseas. All this is a culturally acceptable process here. The assumption is that everyone jumping on the bandwagon, is acting in the interest of the patient. We don't have HIPAA or alternate laws to protect patient privacy (what's that for!)
3) Why think you can handle it, but she can't?
Its a cultural thing to protect women and children. In several families, this involves not "burdening" her with decisions beyond her home and kitchen. Unlike their younger counterparts, most of these moms handover their smartphones to their children tasks like navigating maps. Their medical information and come from a "what a friend said" or a circulating text. These moms are often very comfortable not being in the driver seat even when it comes to their own health decisions. The choice between a lumpectomy and mastectomy may be made by a consensus of family members, who may exclude her completely from the decision!
4) Is it possible you yourself are more afraid than you need to be?
Often they don't want to tell her because the family members themselves associate cancer with a death sentence. "What if she refuses to be treated ?" There's an exaggerated fear in their own minds which they don't want to pass on to the patient. In most cases of early cancer, once the treatment plan and prognosis is explained to the family, their fears are allayed and they arrive mentally to a much better place. What they don't realise is, the patient too has a right to get there. The feeling that they're hiding something is going to make her disproportionately fearful. Hiding her diagnosis is not being protective; its being unfair. Some conversations are difficult but they still need to be had.
5) Even if her days were numbered, shouldn't she know?
Every so often, the diagnosis is one of metastatic cancer. Although a lot of patients with advanced cancers are living a long life with modern treatments, there will be times to have end-of-life conversations. Decisions about treatment options must be made acknowledging the patients own wishes. She may want to spend time with her friends or travel with family if possible. She may not want to be hospitalised if the end were near, she may want to sign a DNR. She has a right to know about the possibility of death so she may choose how to live.
Mom is smarter and more capable than you give her credit for. Let's not be lazy about having tough conversations. Let her live with dignity of knowing. Her health information is not yours.. to share or to hide.