I think we need to be very careful about blaming patients. I do it... but I'm getting better at seeing the bigger picture. Yes, sometimes they are in the stage of denial and struggling to cope with their diagnosis. They may ask for completely inappropriate tests or treatments. Sometimes their expectations are absolutely ridiculous but most of the time this is not the case. The patient is not crazy or 'demanding.' A lot of the time it is we clinicians who put some of the more unrealistic expectations on people's radar.
Educating patients wouldn't change this, except if we can encourage them à la Choosing Wisely to initiate discussions with their physicians about unnecessary tests and treatments. Educating the clinician, particularly encouraging transparency and openness in communication is really important. However, the biggest thing we can do is to change the overall culture of the health 'system' and our society to make it "okay" to talk about these issues frankly.
I work quite frequently with oncology patients, often in a supportive or palliative role. I find it shocking that many of them have never discussed dying, have not made advanced care plans, and do not understand the goals of their treatment. Often a patient is receiving palliative therapy and yet they believe it is a curative therapy. They may demand aggressive medical treatment, not realizing that they are very close to dying.
Sometimes, when I liaise with the oncologist, he or she explains that they had frank discussions about these things, and I can see it in the notes. It's just been hard to accept and people don't really hear what has been said. Other times, "it just never came up." I find that that hard to believe. It should come up. Shouldn't it?
Not talking about the end of life is doing a patient a disservice. How can they make decisions about their care without knowing what is going on? It also suggests - as made clear by this study - that inappropriate interventions might be coming from the clinician, not necessarily initiated at the behest of the patient.
What do you think?