When her father Ding was ill, Wendy Wang acted as the translator between Ding and his doctor. The doctor told Wendy her father had pancreatic cancer and only had three months to live. But Wendy chose to withhold that information from Ding, who didn’t speak a word of English.
“For our culture it's a very blunt discussion. If my dad heard that conversation, I think he will collapse straight away,” she tells SBS’s Insight.
She says that in Chinese culture, a terminal prognosis takes away the patient’s hope.
“I didn't mention the word cancer,” she says. “When people mention cancer… it's sort of like a death sentence. So we just tried to avoid the word cancer to give him more hope and let him hold the faith.”
Wendy reassured her father that he had “pre-cancer” and needed to go through chemotherapy to treat it. Despite his prognosis, he lived for another 15 months.
Throughout this time, Wendy also hid her father’s condition from her mother (“she's a very vulnerable person”). Wendy says her decision confounded many doctors, who pressured her to be upfront with her parents.
“I think this gave me a great pressure. I don't think I did something wrong because I did everything for beneficial my dad,” she says.
“For some patients they don't want to be told, they still want to maintain faith, their hope – so why the doctor should force the patient to accept it? So I think that's the conflict between my culture and western culture.”
In some migrant communities, such as Chinese, Vietnamese, Arabic or Greek, it can be taboo to openly discuss death and terminal illness. Some research also suggests a sense of fatalism, stigma and shame associated with cancer and illness.
Associate Professor Richard Chye is the Palliative Care Director of the South Eastern Sydney and Illawarra Area Health Service. He believes the health system needs to consider the cultural needs of migrant communities, especially when it comes to patients and carers dealing with terminal illnesses.
“I think perhaps we failed Wendy and her family. Our health system wasn't able to support Wendy when I think we should be," he tells Insight.
“Denial sometimes is not a bad thing. It allows patients to keep doing what they want and strive for what they want. But my role as a doctor is to try and gauge how much does the patient know, and also how much does the patient want to know?”
But oncologist Professor Allan Spigelman from Sydney’s St Vincent’s Hospital says that while doctors need to be culturally sensitive, withholding information denies the patient his or her autonomy.
Commenting on Wendy’s situation, he says: “Number one: we would have an interpreter, that goes without saying, that's hospital policy and it's state policy, and the reason for that is patient autonomy.
“The patient needs to be able to make his or her own decision if they're mentally capable of doing so.”
Professor Spigelman says it’s also important to foster an environment whereby illnesses like cancer can be openly discussed because it helps to advance medical research.
“We need people to provide samples, so that research can continue,”
“We see patients who come for breast cancer gene testing and other cancer gene testing. The point of that testing is to help the next generation as well as those patients to prevent cancer and detect it early.
“With an attitude that tries to hide cancer and a family history of cancer, if that attitude was prevalent, those advances in gene testing that allow the next generation opportunity for prevention and early detection would not exist today.”
What would you if you only had months to live? Would you want to know your prognosis? Patients, oncologists and palliative care specialists discuss the tricky art of determining a prognosis. Join the Insight discussion tonight at 8.30PM on SBS ONE and live stream http://www.sbs.com.au/insight/live
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Penny Kelly's oncologist has told her she most likely has two to eight months to live. She's recently found out that her breast cancer has moved to her brain and she's decided to stop treatment. Penny thinks it's important to know her prognosis so that she and her family can prepare for her death.
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