QUESTION: I had a major operation at an Ontario hospital. At an appointment before the operation, the doctor told me about what to expect from the surgery and the possible risks. Then he asked me to sign a consent form. I didn't really understand everything he said, but felt pressured into signing the form. As it turned out, the operation was successful. However, the whole signing process still really bothers me. What should I have done?
ANSWER: I can understand how you might not have grasped everything the doctor said. And it's certainly not good that you felt pressured into signing the consent form.
In these circumstances, it's important to know that you are entitled to a full explanation -- it's the law. The doctor is legally obliged to provide you with the relevant information so you can make an informed decision.
In Ontario, your rights are spelled out in the Health Care Consent Act, says Sally Bean, a medical ethicist and policy advisor at Sunnybrook Health Sciences Centre.
To meet the requirements of "informed" consent, your talk with the doctor should include:
- A discussion about your illness and the proposed treatment;
- The expected benefits;
- The potential risks such as surgical complications;
- Possible side effects;
- Alternative treatments; and
- The likely consequences of not having the treatment.
"The expectation is pretty high for physicians to provide this information and it has to be tailored to the individual patients in a form that they can understand," says Ms. Bean.
If you have been seeing just one doctor for your condition, some of these details may have been conveyed to you over a series of appointments.
Of course, some physicians are better communicators than others. And with the time pressures of modern medicine, some patients may not be getting as much information as they might need.
In fact, "research suggests that physicians rarely meet even minimal standards of disclosure for the purposes of obtaining informed consent," according to a review article published in March of 2012 in the Canadian Medical Association Journal.
"Just because the patient signed the form, that doesn't necessarily guarantee it was a thorough discussion," says Dr. Aaron Fink, a co-author of the article and Professor Emeritus of Surgery at Emory University School of Medicine in Atlanta.
Dr. Fink says signing the consent document should come at the end of an informative process -- and not be an end in itself. So, if there is something you don't understand, by all means say so. Ask the doctor if there are materials you can read about the treatment -- or if there's a reliable website detailing the procedure.
Any discussion about treatments must include the potential risks. What you need is information that pertains to your own circumstances. For instance, the average risk of suffering complications from a particular procedure may be only a few percentage points for the general population. But that risk may be significantly higher for an elderly patient suffering from several chronic conditions, compared to a relatively healthy younger individual. If the doctor quotes risk statistics, those figures should be based on patients who are somewhat similar to you in terms of their risk profile, which takes into consideration age and health status. "This is an important qualification," says Ms. Bean. You may also want to ask the doctor how often he or she has done the procedure. A surgeon's success rate tends to improve with more experience.
Considering other treatment options can be also challenging. Doctors have a tendency to recommend the therapy they personally perform -- and that's what you might expect. "As physicians, we all have our biases," says Dr. Fink. "But mature care providers are hopefully able to recognize their biases...and, at a minimum, should let patients know what other options are available."
If you are still unclear about your options, it may be worthwhile seeking a second opinion -- assuming you have sufficient time to consider the pros and cons of the various therapies.
Ideally, these discussions should take place well before the day of surgery if you are considering an elective operation. "Everything becomes more complicated, obviously, in an emergency situation where one does not have the luxury of time," says Dr. Fink who is also Chief Medical Officer of Dialog Medical, a U.S. firm that developed a computer-based informed consent application.
Still, even in hurried situations, the patient -- or the patient's substitute decision maker -- can pose a few basic questions that can help clarify what to expect from the treatment, say Ms. Bean.
Based on the "best interests" of the patient standard that's contained in the Health Care Consent Act, she suggests asking whether the treatment is likely to:
- Improve your condition or well-being;
- Prevent the condition from deteriorating; or
- Reduce the extent or rate of decline.
In many ways, these three questions help focus attention on a much bigger issue: What are you hoping to gain from the treatment? Are you looking for a cure -- or just a reduction in your symptoms?
It's very important to tell your doctor your goals. The physician should be able to let you know if it's likely, or even possible, to meet your expectations.
Having a realistic understanding of the treatment can affect how you feel afterwards. In other words, will you be satisfied or disappointed with the results?
So, getting back to your original question, if there is something you don't understand, ask the doctor to clarify it. Then repeat, in your own words, what you have been told. Summarizing, in this way, is a good test of your comprehension. The doctor should then know if you need more information -- and will be obliged to provide it. After all, you can't give your consent to a treatment without first being properly informed.
"The patient should never be made to feel inhibited or prevented from asking questions," says Dr. Fink. "The obligation of the physician is to ensure that the patient really has the adequate knowledge to make a decision."
Co-authored by Paul Taylor, Personal Health Navigator at Sunnybrook.
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