As Americans we talk a lot about our right to control our destiny- but do we really? The right to control our own health care has been the linchpin of our medical system for at least the last seven* decades.
Yet as a public when we are told we have a health issue many of us take medications, have expensive procedures and tests, and even undergo surgery without fully understanding why we are doing so.
Of all patient rights, none is more fundamental than the right of informed consent. Every patient (with loved ones as appropriate) has the right to say “Yes” to medical care- or “No”– even if that refusal means they might die.
No treatment plan is complete without informed consent. The physician [or APRN or PA] is responsible for making the diagnosis and determining what the best treatment is for the patient- but it is the patient’s role to agree with that plan. If there are more than one possible treatment option it is the patient’s right to be part of determining which path to pursue.
All of this presumes patients understand enough about their situation and the treatment choices to be part of the discussion- that is where the “Informed” of informed consent comes in. The physician must explain all of the following if the patient is going to be able to participate in his/her own treatment planning:
- the patient’s diagnosis (with explanation);
- The treatment preferred by the physician, and why (what result/improvement is expected);
- The risks of that treatment plan (given everything in medicine has inherent risk);
- Alternatives to that treatment option, including doing nothing;
- The potential benefits and risks of that (those) alternative(s).
Even after all that, the informed consent process is not complete. Cost must also be discussed. In this age when more patients are paying out-of-pocket due to their high deductible insurance policies they need to understand not only the best treatment- but the best treatment at the best cost. Is the generic antibiotic as effective at a fraction of the price? What difference is there between surgery now and waiting to see if surgery is necessary later? Is there something the patient can do that would help both help increase his/her chances and decrease cost- such as avoiding medication through dietary control?
After all that information has been explained the most important part of the process occurs– when the patient (and loved ones) are asked “Do you have any questions?” Only after those questions are heard and answered has informed consent been obtained- and then the necessary form can be signed. Consent is a conversation, the Consent Form only documents that the conversation occurred.
I am not arguing against following doctors’ recommendations, as the vast majority of patients do. People go to their doctor’s office or local hospital for exactly that professional decision process- diagnosing and treatment planning. What I am saying is far too many patients do not understand enough to say “yes” or “no”– to truly participate in their own care.
As you read through these elements of informed consent, it is very likely it does not match your experience when either you or a loved one has been a patient. If so- was that entirely your doctor and health team’s fault? Doctors may not appreciate that what they told you did not make sense. Recognizing you as an intelligent person they may have thought their explanation was adequate- and you told them that it was! Did you let them know what you understood- and what you needed to discuss further? Did you ask questions? Or did you sign a form saying you understood- when you did not?
The evolving health care system is based more on a team approach than ever before. The medical team is being expanded to include coaches, coordinators, advocates, and people who can assist with both understanding the treatment plan as well as following through. But the most important team member is ultimately YOU- the patient. Your physician exercises medical decision making for your benefit- but at the same time you need to exercise your right to proceed- or not- as an informed participant in your own care. It is in that balance that true patient-centered care will occur.
What Does This Mean?
* Seven Decades: Were you surprised “Informed Consent” isn’t older? Various authorities place the development from the 1950s into the 1970s- I think Wikipedia does a nice summary. What did everyone do before then?
The Traditional Approach to Health Care Information: prior to informed consent medicine largely followed the traditional model that went all the way back to Hippocrates– Doctors were to do as they thought was best for a patient- but sharing all of the pertinent information with them was discouraged in most cases. It was thought to unnecessarily concern the patient and prove to be non-therapeutic!