Like many aspects of medicine, prognostication in palliative care is both a science and an art. Dr Noreen Chan, 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.
More than ten years ago, my grand-aunt (maternal grandfather’s 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 “she worries about everything; one day before a doctor’s appointment she cannot sleep, why make her worry more?”. And that settled it. She passed away six months later, and I heard that the night she died, she told her family “I know I have cancer even though you all never told me”.
I was reminded of this personal story when I read about a recently released film, “The Farewell” which stars Awkwafina, who shot to prominence after her breakout role in “Crazy Rich Asians”. 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
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’s “Western” 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.
Fifty years ago, it was considered an acceptable professional practice—even a kind and moral act—for 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.
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.
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 “cannot take it”. The important thing to realise is that this all comes out of a place of love; perhaps misguided or misinterpreted, but love nonetheless.
Prognostication, from the Greek which is literally “to know beforehand”, 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.
The art and science of prognostication
In his book “Death Foretold: Prophecy and Prognosis in Medical Care”, 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’s 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 “twice removed from the truth”.
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: “The physician’s 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.”
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.
What does the scientific literature tell us about what patients want to know?
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:
- Patients/caregivers wanted information regarding the illness itself, likely future symptoms and their management, and life expectancy and information about clinical treatment options;
- They preferred a trusted health professional who showed empathy and honesty, encouraged questions, and clarified each individual’s information needs and level of understanding;
- In general, most patients/caregivers wanted at least some discussion of these topics at the time of diagnosis of an advanced, progressive, life-limiting illness, or shortly after. However, they wanted to negotiate the content and extent of this information.
In other words, they do want to know, but it’s up to the healthcare professional to find out what they want to know, and when and how they want to know it.
What should doctors be discussing with patients and families about prognosis?
Dr Joanna Paladino (of Ariadne Labs’ Serious Illness Care Program) and co-authors recently published useful advice on how to have such as conversation.2 As the title “Communication Strategies for Sharing Prognostic Information With Patients Beyond Survival Statistics” suggests, it is not just about “how long”.
The authors suggest three core topics, and what and how of each is shared, depends on the patient’s own preferences. “Communication about prognosis should explicitly balance medical realities with patients’ expressed hopes in the context of uncertainty”—not an easy balance to strike at the best of times.
These 3 points are:
- Time – knowing how long one might have to live, allows for priorities and decisions to be made regarding important life events; there have been many occasions where marriage, birthday and other celebrations (even a Lunar New Year Reunion Dinner) have been brought forward for this reason;
- Function – not only how much time is left, but what that time might be like, what adaptations will be needed to achieve certain goals, how much care will be needed;
- Unpredictability – a crisis can occur anytime, but it is possible to prepare by thinking ahead about what is important and making an advance care plan.
So, do you really, really want to know?
BJ Miller and Shoshana Berger, writing in the NY Times “Don’t Tell Me When I’m Going to Die” argue for a more nuanced approach to prognostic disclosure.
The article mentions a “Prognostic Declaration” form developed by Steve Scheier, through the experience of caring for his wife. This tool gives patients a few options to indicate their personal information needs to their doctors:
- Tell me everything;
- I’ve not decided what I want to know about my prognosis, so ask me over the course of my treatment;
- I want to participate in my treatment, but I don’t want to receive any information on my prognosis;
- I don’t wish to know any information about my prognosis but I authorise you to speak with [blank] about my case and for you to answer any questions that this person may have about my likely prognosis and treatment.
The pendulum of disclosure has swung from “don’t tell” to “must tell” and back towards “let’s ask the patient what he/she wants to know”. I think that is right. Some people really do not want to know that much, and we may not be doing the patient a favour by, as I sometimes like to say, “beating them about the head with the truth stick”.
As Miller and Berger say, “It’s simply an acknowledgment that knowing more sometimes serves us less.” The truth does hurt, and while it can be bitter medicine which the patient must swallow, we can learn how to “dose” and “administer” this crucial medicine with skill, kindness and sensitivity.
What the Doctor Said
by Raymond Carver (1938-1988), from “A New Path to the Waterfall”
He said it doesn’t look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them
I said I’m glad I wouldn’t want to know
about any more being there than that
he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today
he said I’m real sorry he said
I wish I had some other kind of news to give you
I said Amen and he said something else
I didn’t catch and not knowing what else to do
and not wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who’d just given me something no one else on earth had ever given me
I may even have thanked him habit being so strong