A recent series of studies appearing in JAMA Internal Medicine examined patients' roles in medical decision-making. Perhaps unsurprisingly, some patients want more or less of a role, but an important finding relevant to end-of-life issues was this:
In their study, Wachterman's team interviewed 60 of the sickest dialysis patients and their doctors about expectations for the patients' survival and to what degree they had been discussed.
The researchers found only two patients whose doctors may have discussed their prognosis with them, and that more than half of the doctors said they would refuse to discuss prognoses - even if patients asked.
On the one hand, the results of this study show that doctors are just like the rest of us. It's not easy for them to talk about death.
On the other, it shows that we cannot be content to think, "my doctor would have told me if…" Such as, "if I only had a year to live." It shows that we may need to be persistent in communicating with our doctors, or may even need to seek out a different doctor that will communicate more readily.
Reluctance to communicate honestly about death is troubling because we know that advance directives and POLST can help patients be in control of their own lives and decisions at the end of life. The Leaving Well website promotes the idea that everyone should communicate their wishes regardless of age or health status, but those with a terminal condition particularly need the opportunity to complete an advance directive or POLST form.
Even more importantly, as study author Wachterman described, "I think we do a disservice to patients if we don't give them a sense that time could be short, because they have a lot that they want to do with the time they have left."