Much is made these days of hearing and including the "voice of the patient" in the conduct of health care. To be clear, on the whole I think this is a great move and long overdue. It has been long missing from health care in some very basic ways. For a long time, we thought that the doctor's determination of what degree of physical pain the patient was in should be the driver of decisions about medication as opposed to what the patient reported to be their pain level. Then we found out that the medical professional's perception was wildly inaccurate most of the time and the patient's self-report was generally spot on.
So, these days, it is almost scandalous to suggest that patients and their family caregivers should not be consulted and included in deciding on their care. Many of us are advocating models in which the patient actually sits in on the team's care planning rather than the team having discussions without the patient and then bringing the patient into the conversation to "discuss" the plan the team has already decided on.
However, as with most conditions in life, this one comes with some consequences that many didn't anticipate and some providers don't necessarily like. For example, many providers who have supported patient involvement and starting the planning with patient and family values generally are in favor of less aggressive care when the medical judgment is that the treatment is most likely to not extend life and/or to lower quality of life. However, what about the patient or family who wants "everything done" even in the face of the unanimous medical judgment that aggressive care is futile? If we are true to the idea of listening to the voice of the patient, we are obliged to provide aggressive care at least within the bounds of normal professional ethics. This is uncomfortable for many providers who are then tempted to resist the patient's expressed wishes.
And what about the patient and family who is not "like us"? The vast majority of health care providers are educated, highly health literate, and have some degree of financial and social resources. While I'm fully supportive of any and all attempts to promote health literacy, I wince when I hear otherwise compassionate providers discount a particular patient's input because "they don't understand" which is code for lack of health literacy. And what about the patient whose beliefs conflict with recommended treatment? I have never heard of a chaplain being called to intervene with a patient whose beliefs supported the treatment decision the team was recommending but we are often called to "help" a patient or family whose religious beliefs are in conflict with what the treatment the team is recommending.
Now granted, there are limits to the treatment patients and especially surrogates ought to be allowed to demand or refuse. Dr. Harvey Chochinov has recently written about what he argues to be the lack of protection for children and the mentally ill in the currently debated Canadian physician assisted death law. I am clear that patients should not be allowed to make decisions that put others at risk- from infectious diseases for instance.
However, those conditions need to be viewed as carefully considered exceptions to the general rule. Otherwise, the idea that the voice of the patient is always included needs to be followed by "except when the providers find it inconvenient or offensive or against their own beliefs". No right is absolute but they are called "rights" because they are granted except in very well defined circumstance.
I think it can be argued that listening to our patients and understanding how they want their care conducted is the most important thing we as health care providers do. We need to be extremely vigilance to recognize and call out any discounting of that voice.