The results of this article are no surprise, and this is a real pet peeve of mine. The article says that many patients who were supposedly participating in “shared health decisions” with their physician either had no input and/or reported it as being a negative experience.
That’s no surprise to me. As an ER doc, if a patient comes in with no family members or paperwork, we are forced to do everything possible to keep them alive when we don’t know what their wishes are. Sometimes the family is with them and says, “just keep them comfortable.” Those cases are rare and refreshing. Sometimes there is a stack of paperwork with a list of check-boxes saying No CPR, No Intubation, Yes Antibiotics, etc. But when the family says, “Do everything”, you are forced to comply. Keep in mind, these decisions happen in minutes in the emergency department. There is no time to sit down with the family and discuss the finer points of what their loved one would want…by then it may be too late. Often these critical, but dying patients, get admitted to the ICU where the intensivest is forced to have a sit down meeting with the family to discuss these issues.
While the paperwork with check-boxes is sometimes helpful, I feel that it is really unfair for a doctor or lawyer to sit down with a patient and say, “Do you want CPR? Do you want a breathing tube? Do you want to be electrically shocked? Do you want antibiotics, a feeding tube, IV fluids?” Most people do not really have a good understanding of what these treatment options really mean, or what their implications are. There are an outstanding number of variables that go into what may or may not be appropriate such as prior health, religious beliefs, quality of life, etc. A youngish (say 60 year old) healthy patient who has filled out a living will stating that they do not want to be on life support SHOULD have everything possible done if they find themselves in a car accident for example, with bilateral pneumothoraces and fractured ribs. These things will heal, and the patient will go on to have a good quality of life afterwards. That’s just one example.
I had another patient with “DNR” orders who came in with severe heart failure & fluid overload. I did all the appropriate medical interventions with no relief. I finally told the patient and the family that the best hope for treatment was to be intubated, allow the fluid to be removed from the lungs with positive pressure ventilation along with the other medical treatment and then see how his breathing was. All agreed. This DNR invariable says that they do not want to be kept in a TERMINAL state of life support. This patient’s condition, albeit chronic, was treatable, and his quality of life was not so poor that he wanted it to be ended that particular day. He did fine after a few days of treatment. Yes, he’ll be back, but with better diet and medication control, he can have an even better quality of life.
So you see, many of these “shared health decisions” require a HUGE amount of input and responsibility of the treating physician to help decipher what is and isn’t appropriate for the patient. But it is all based on what the patient himself wants out of life. Without that input, whether it is discussed with the physician or with his family, all assumptions NEED to be for “full steam ahead.”
It’s no wonder patients are dissatisfied with this process when they have a sheet of paper shoved in front of them that says, “Check these boxes” when there is little context for when and how those treatments might be used.