{"id":25743,"date":"2020-03-30T00:42:17","date_gmt":"2020-03-29T16:42:17","guid":{"rendered":"https:\/\/medicine.nus.edu.sg\/?post_type=newsletters&p=11450"},"modified":"2022-04-28T19:25:52","modified_gmt":"2022-04-28T19:25:52","slug":"how-long-have-i-got","status":"publish","type":"newsletters","link":"https:\/\/medicine.nus.edu.sg\/newsletters\/issue33\/insights\/how-long-have-i-got\/","title":{"rendered":"How Long Have I Got?"},"content":{"rendered":"

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Like many aspects of medicine, prognostication in palliative care is both a science and an art. Dr Noreen Chan<\/b><\/i>, Head & Senior Consultant in the Division of Palliative Care at the National University Cancer Institute, Singapore and Assistant Professor at the Department of Medicine, says that it is crucial to work out what and how to tell patients in their prognoses sensitively.<\/p>\n

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More than ten years ago, my grand-aunt (maternal grandfather\u2019s cousin) developed pancreatic cancer, and the news travelled swiftly through the extended family network from Kuala Lumpur to Singapore and beyond. She, however, was not informed of the diagnosis, which my mother felt was very sensible because \u201cshe worries about everything; one day before a doctor\u2019s appointment she cannot sleep, why make her worry more?\u201d. And that settled it. She passed away six months later, and I heard that the night she died, she told her family \u201cI know I have cancer even though you all never told me\u201d.<\/p>\n

I was reminded of this personal story when I read about a recently released film, \u201cThe Farewell\u201d which stars Awkwafina, who shot to prominence after her breakout role in \u201cCrazy Rich Asians\u201d. This comedy-drama made its debut at the Sundance festival in early 2019 and is written and directed by Lulu Wang, based on her own experience and “actual lie”.1<\/a><\/sup><\/p>\n

Awkwafina plays Billi, the American granddaughter of a beloved matriarch living in China, who is diagnosed with terminal cancer. As the devastating news spreads, the extended family cooks up an elaborate scheme to organise a wedding dinner for a grandson, so that everyone has an excuse to return home to see the old lady for one last time. Billi\u2019s \u201cWestern\u201d sensibilities are outraged by this deception, and the rest of the film follows her evolving struggles and understanding as the plot unfolds, and the inevitable clashes around culture, filial piety and values.<\/p>\n

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Fifty years ago, it was considered an acceptable professional practice\u2014even a kind and moral act\u2014for doctors to withhold diagnoses from patients. Nowadays, with changing social norms and expectations, more and more patients are aware of their diagnoses. In fact, it would be unethical for doctors to attempt to obtain consent for treatments and procedures without patients being adequately informed about their diagnosis, the various options for treatment, and the pros and cons of each option.<\/p>\n

It is still common, however, that patients do not know the full truth about their condition. Common enough for us to have our own term in Singapore, called collusion. Collusion is conventionally used in the commercial sense, when parties secretly work together to deceive others, for example to fix prices. In healthcare, collusion refers to the situation where the healthcare team colludes with family members to withhold information from the patient.<\/p>\n

This act of non-disclosure typically occurs when there is bad and sad news to be shared, and the family asks not to inform the patient for fear of upsetting them, destroying hope, or, as we might say in Singapore, the patient \u201ccannot take it\u201d. The important thing to realise is that this all comes out of a place of love; perhaps misguided or misinterpreted, but love nonetheless.<\/p>\n

Prognostication, from the Greek which is literally \u201cto know beforehand\u201d, is predicting what is likely to happen in the future i.e. to foretell. In healthcare, this relates to making a judgement of the expected course of a disease over time. For example, the prospect of recovery, or in a palliative care setting, about how long a person might be expected to live, and what that time might be like.<\/p>\n

The art and science of prognostication<\/b><\/p>\n

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In his book \u201cDeath Foretold: Prophecy and Prognosis in Medical Care\u201d, American sociologist Nicholas Christakis wrote that doctors are not actually very good at prognostication. Although the predictions get more accurate the closer a patient is to death, the tendency is to over-estimate a person\u2019s survival and in some cases, by as much as four times. Meaning to say, if the doctor says you have one year, the actual time may be closer to three months. Not only that, he found that when doctors conveyed prognosis, they sometimes over- estimated again, so patients ended up \u201ctwice removed from the truth\u201d.<\/p>\n

Is it possible to prognosticate with greater accuracy? I certainly like to think so. There are a large number of tools, guidelines and approaches for different patient populations, and while there is inevitably some uncertainty, I believe that with study, practice and discipline, one can develop the skill. As a former supervisor of mine, Dr Paul Glare, wrote: \u201cThe physician\u2019s goal is to formulate an individualised prognosis for the patient starting with a generalised prognosis and modifying it using clinical observations, performance status, symptoms, co- morbidities, will-to-live and knowledge of illness trajectories.\u201d<\/p>\n

Like many things in medicine, it is both a science and an art. And not only do doctors have to come up with a prognosis, they need to work out what to tell the patient.<\/p>\n

What does the scientific literature tell us about what patients want to know?<\/b><\/p>\n

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Dr Josephine Clayton is one of many researchers who has studied and written about prognostication and how to communicate about this. In a paper published in 2007, she and her co-authors found that:<\/p>\n

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