Friday, November 28, 2008
Journal of Clinical Oncology has a paper looking at what oncologists tell their terminally ill patients about their expected deaths. The study looks at oncologists' self-described practices, and is based on a survey sent to oncologists (members of the American Society of Clinical Oncology) practicing in the US (sent to ~1200 docs, ~700 responses, 64% response rate which is about as good as it gets for research of this type). They collected demographic data, training information, as well as quantitative and qualitative responses to questions regarding the oncologists' habitual practices for their patients expected to die 'within 6 - 12 months.'
Basically, oncologists rated themselves as good communicators (90% feeling patients always/usually satisfied with their communication), and 98% describe telling their terminally ill patients that they will die from their disease. They were more split about time disclosures: nearly half say that they give a time disclosure (prognosis) as a rule, the other half only do it if the patient says they want to know when the oncologist asks them (33%) or only if the patient initiates a request for the information (16%). 3 respondents said they don't talk time with patients no matter what (I'd like to meet these people, as well as the couple percent who don't tell their patients if their cancer is incurable - one wonders what they tell them about their intentions for giving chemotherapy and how they can give truly informed consent for such treatment if the patients don't even understand its expected outcome). My curiosity about these outliers aside, this represents a pretty dramatic generational shift in the last few decades in the US towards disclosure of prognosis aside.
What was most interesting to me was the results of a multivariate analysis looking at predictors of physician self-reported willingness to disclose prognosis. Both advancing age and being Jewish were associated with a lower likelihood of disclosing prognosis to patients. Seeing lots of patients and reporting that you'd want to know your own prognosis were both associated with being more likely to disclose prognosis. While one can argue whether or not these individual 'risk factors' are relevant, the major point here is that as a cancer patient, what you are told about what to expect may in fact hinge not on what you want to know, or what you 'need to know' (we can debate what that actually is), but on simply who your oncologist is, and, for instance, what they would want to know if they were in your shoes. This is not good news.
The authors also point out the elephant in the corner here: given the relatively 'strong' showing for physician disclosure of prognosis, how is it that numerous studies have shown a substantial minority of cancer patients don't seem to understand the most basic/essential information about their illnesses (e.g. whether the chemotherapy is being given with the intention/hope of cure or for non-curative so-called-palliative reasons).
Limited data suggest that most advanced cancer patients desire at least some information about their prognoses, and our data describe oncologists as disclosing to the majority of their terminally ill patients that they will die. This would seem to contradict the wealth of data that describe many advanced cancer patients as not understanding their prognoses. This apparent contradiction may be better understood by recognizing the potential differences between what physicians believeIndeed. I've been contemplating this for a while in my own work, particularly with 'young oncologists' (fellows, etc.) struggling with difficult communication. Most of them are very comfortable with the idea that patients have a right to know their prognosis, should know it, etc., but I constantly see situations in which patients for whatever reason have not understood what the oncologist thought s/he was communicating. This 'skill,' - of gauging/checking your patients' understanding of things (particularly over time, after that initial first difficult disclosure, when all you've been talking about the last few months is the next scan or next treatment), seems like an important one, and one that is not talked about too often.
they are disclosing and how patients actually understand this information.
C. K. Daugherty, F. J. Hlubocky (2008). What Are Terminally Ill Cancer Patients Told About Their Expected Deaths? A Study of Cancer Physicians' Self-Reports of Prognosis Disclosure Journal of Clinical Oncology DOI: 10.1200/JCO.2008.17.2221