Peter Kirk, Ingrid Kirk, and Linda J Kristjanson, “What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study,” BMJ 328, no. 7452 (June 5, 2004): 1343.
Connie Ulrich and Christine Grady, “Beneficent Deception: Whose Best Interests Are We Serving?,” The American Journal of Bioethics 4, no. 4 (2004): 76.
Since I have been writing and discussing the topic of transparency lately (specifically with regard to patient medical records), these two articles came to my attention following a discussion that occurred after my presentation at Johns Hopkins Medicine. We talked about when and how we inform patients about aspects of their care, and what the conditions might be for “beneficient deception.”
The first article, which deals with communication between care teams and patients with terminal diagnoses, talks about the importance of good communication not just at prognosis, but throughout the course of treatment. This quote caught my eye:
Many participants reported dissatisfaction with the communication process, especially at disclosure of the initial diagnosis. Six attributes were identified to be important in communicating information: playing it straight, staying the course, giving time, showing you care, making it clear, and pacing information.
We put a high price on the accuracy and compassion that should come with an initial diagnosis, clearly. In the work I am doing, it becomes more and more likely that this information may come in an asynchronous fashion, i.e. the patient may see the result at the same time, or even before their doctor does. In discussions to date, it has seemed that the focus has been on this custom – “doctor gets the information before the patient.” I think the focus instead should be on the factors cited above and our ability to “enhance decision making and keep control.” It’s not clear that the current custom absolutely supports that.
The second article is about the concept of “beneficient deception.” The context, though, is not exactly what I was thinking of, but I am citing it here anyway. It refers to the idea that a physician may adjust or misrepresent a diagnosis to ensure coverage for treatment. In the patient-physician communication world, my assumption is that it might be used to provide hope and a sense of control. I am tempted to agree with the authors of this article, that I find this hard to justify in the long term. Instead, I think about the physician leadership role in making this activity unnecessary. Our patients can guide us on the best way to be accurate and direct, and I think we will all benefit from these conversations.
Of course, your comments are welcome.