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CANCER patients often want more information about their life expectancy than they receive, according to new research, with experts saying doctors need to take a more proactive approach and use clearer language with patients.
A study published today in the MJA, which included 1431 cancer patients at 11 medical oncology treatment centres across Australia, found that while the majority of patients received their desired level of information about life expectancy, 28% were not satisfied. (1)
Almost one quarter of patients felt they received too little information, while 4% said they received too much.
The study, based on a cross-sectional survey, found patients had different preferences in how much life expectancy information they wanted. For example, 22% neither wanted nor received such information.
The authors, from the University of Newcastle’s Priority Research Centre for Health Behaviour, recommended an “individualised approach” to communicating life expectancy, including regularly asking patients how much prognostic information they preferred.
The study found patients not in remission and with higher anxiety and depression scores were less likely to receive their desired level of information.
“Clinicians may withhold information from patients whom they perceive to be anxious or depressed, particularly if the prognosis is poor”, the authors wrote. “On the other hand, receiving less information than desired may itself increase anxiety and depression.”
They said that some patients’ dissatisfaction may relate to their difficulties understanding complex prognostic information.
Professor Phyllis Butow, a clinical psychologist and academic at the University of Sydney’s Centre for Medical Psychology and Evidence-based Decision-making, said the 72% satisfaction rate in the study was “not very high” compared with other studies in oncology, suggesting this was an area where patients strongly wanted change.
“A very common mistake from doctors is to wait for the patient to raise prognosis”, Professor Butow said. “Since the patient is often waiting for the doctor to take the initiative, nothing happens.
“Another common approach is to mention prognosis only in the context of decision making (eg, your life expectancy will be x if we do nothing and y if you have chemotherapy), and quickly move onto practical treatment-related issues”, she said.
“It is important to allow the patient space to take in their life expectancy, talk about their feelings and offer support if desired, such as a meeting with a social worker or pastoral worker.”
Professor Butow coauthored guidelines for communicating prognosis and end-of-life issues, which recommend offering prognostic information to everyone and clarifying the patients’ preferred level of detail. (2)
Professor Martin Tattersall, professor of cancer medicine at the University of Sydney, said a good way for doctors to begin a discussion about prognosis was to ask the patient about their understanding of the situation.
“Until you’ve learned that, you don’t know whether the information you’re giving them is good or bad — they may think they’re going to die in the next 5 minutes, or in the next 5 years”, he told MJA InSight.
Professor Tattersall said doctors should avoid words like “good” or “bad” when discussing prognosis. “What a patient wants to know is, ‘how long have I got?’ ”.
He said that meant providing accurate numbers, including the “typical” time frame in which two-thirds of patients died, as well as the survival time of the 10% of patients who experienced the worst case scenario and the 10% who experienced the best.
However, he acknowledged that advances in cancer therapy meant prognostic information needed to be updated regularly.
Giving patients question prompts could help them to ask for the information they needed, without the doctor providing too much detail, Professor Tattersall said. (3)
He also favoured encouraging patients to audio record their consults to listen to later, saying patients often found it hard to comprehend prognostic news on first hearing. (4)
Hayley Andersen, chief executive of Melanoma Patients Australia, told MJA InSight that “different patients want different levels of information about their life expectancy, at different times in their journey with the disease”.
Although her organisation provided detailed prognostic information for different stages of melanoma on its website, Ms Anderson said the information required updating due to significant treatment advances in recent years. (5)
(Photo: Alexander Raths / shutterstock)
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In my experience the patients that want to know will always ask about prognosis / life expectancy. Those that don’t want to know don’t ask. The information should not be forced on them. We should also remember that life expectancy estimations are notoriously innaccurate.