How much time have I got, doc? The problems with predicting survival at end of life
Sarah Winch, The University of Queensland; Bill Lukin, The University of Queensland, and John Devereux, The University of Queensland
Predicting how long a patient will survive is critically important for them and their families to guide future planning, yet notoriously difficult for doctors to predict accurately. While many patients request this information, others do not wish to know, or are incapable of knowing due to disease progression.
Fuelling this complexity are families who prefer the patient not to be told for fear of torpedoing hope and reducing the quality of time remaining. Conversely, patients may want to know themselves, but do not want to distress their loved ones with this knowledge.
We can’t ever be sure
Central to these scenarios is whether accurate prognostication at end of life is actually possible. Providing a meaningful survival time to patients is often genuinely challenging for doctors. Accuracy declines further the longer the patient is expected to live.
A number of studies indicate clinicians tend to be over-optimistic in predicting survival times. Research from 2011 indicated surgeons’ prognosis for survival time for patients with abdominal malignancies was accurate in 27% of cases, too optimistic in 42% and too pessimistic in 31% of cases.
This is one of the reasons some doctors are reluctant to attempt to predict survival time at end of life. This has traditionally been seen as part of the doctor’s special domain of knowledge to be communicated at the doctor’s discretion (if and when it is the right time to tell the patient, so it is not going to cause harm).
This archaic and paternalistic view melds conveniently with popular positive thinking, replete with militaristic vocabulary such as “fighting to the end”, which some doctors share.
This mindset views meaningful discussions of prognosis as harmful, as it may cause the patient to lose hope and give up the fight. It underpins those not uncommon cases when a family requests the clinician not to disclose a prognosis or a diagnosis to their dying relative. Unfortunately, it may also shut down meaningful end-of-life discussion and planning and result in harm, including to the grieving who remain.
When patients do not want to know their prognosis, this should be respected. For others who ask and the outlook is poor, a relationship built on trust is important.
Author Bill, an emergency and palliative care physician, is asked to give a prognosis every day. A discussion about prognosis includes the caveat that the accuracy the patient usually seeks is elusive, if not impossible to nail down.
Much can be said, however, including an explanation of why there is no firm prognosis. If it is possible to estimate survival time (derived from a mixture of medical details about the clinical history, prior response to treatment, imaging results, pathology results, functional status of the patient and experience), this is best communicated in terms of a short number of months, (long months is very difficult), long weeks or short weeks, a week or a few days or a few hours.
The accuracy of survival time can become more obvious as time progresses, just as the doctor-patient relationship develops, enabling more explicit discussions about survival time. In emergency medicine, when there is no time for these relationships to develop and time is short, patients frequently seek honesty and are extremely good at telling if the doctor is hiding something. This may then lead to them imagining something worse than the reality.
If the doctor does get the prognosis wrong, there is surprisingly little Australian authority as to whether a doctor will be liable. Considering the general principles of medical negligence is useful here. It suggests that if a doctor provides a prognosis that is widely accepted as competent professional practice, shared by other respected clinical peers, then that prognosis is not negligent.
Even if the doctor provided a prognosis that was not widely accepted as competent professional practice, provided the incorrect prognosis did not cause additional damage to the patient, then no liability will follow.
How long have I got, doc?
Most of us are going to have to ask this one day – presuming we have not confronted it personally or through close relationships already. Despite the understandable imperative for those who want to know, the answer is rarely as crisp or accurate as the original diagnosis.
Breaking bad news to a patient is much more a process than an event, unfolding as symptoms develop and viable treatments recede. Best medical practice aims consistently for open, honest communication that is delivered sensitively.
Most doctors try to provide accurate information if able, despite clinical uncertainty. The aim is to maximise the good and minimise harm. When a prognosis appears wildly inaccurate, is not supported by a group of peer doctors and causes significant harm, Australians may be able to pursue the matter through legal action.
Sarah Winch, Health Care Ethicist and Sociologist, The University of Queensland; Bill Lukin, Consultant Emergency Physician and Palliative Medicine Trainee Physician, School of Medicine, The University of Queensland, and John Devereux, Professor of Law, The University of Queensland
This article was originally published on The Conversation. Read the original article.
palliverse.com 
At a meeting yesterday to plan a full hospital move to another site…. there were management plans for when people were going to die in the morning, and those in the afternoon. Even though its’ easier to predict the closer you get, I was forced to tell the boss that predicting whether a person would die in the morning as opposed to the afternoon is quite hard!
I think dealign with uncertainty in prognostication is one of the most difficult issues we face in oncology and palliative care. And non malignant palliative care can be even more challenging.
sonia
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from my perspective – i’ve found that with my cancer, and my situation, my doctors prefer not to give me timelines, because as they tell me — they just don’t know. it is hard to know what way my illness will progress, and what that will mean for my life span. This is something that works for me – i’m aware how difficult and fallible statistics are, especially in ‘outlier’ cases.
i think everyone in this situation probably approaches it from a very different angle – what the patient needs, verses what certainty the doctor can give. and i think by the same token, different doctors will have different approaches. I feel very lucky that i’ve been able to discuss my needs, wants and preferences clearly with my team, so i receive news in a way that is clear to me, and factually accurate.
like most things in the doctor-patient relationship for chronic & life-limiting illnesses – i feel like the key is communicating. i think it would be amazing if there was a way of setting up a system for doctors and patients to discuss how they need and want to communicate with each other, and how to best understand each other. doctor-language can be hard to understand, and patient-listening can often be a difficult and conflicting thing. i mean, it took me about a year to start getting the information about my disease correct on a more regular basis when i got home. for me, i’ve had a lot of therapy, so i know how to build a therapeutic communication method that helps me better understand what my oncologist needs to tell me, verses what i want to hear, as well as learning how my oncologist communicates with me!
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