When a Conversation Can Save a Life
Too often, we approach health care decisions like children. Understandably so: We’re scared, we are negotiating foreign terrain, and so we latch onto a parent figure, follow blindly whatever they say, and then learn, too late, that there were a lot of questions we should have asked.
So this issue of our newsletter focuses on the conversation we need to have with our doctors and nurses before they lay hands on us — to make sure our needs, values and goals are aligned with theirs.
This conversation can truly save a life: yours or a loved one’s.
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A quick introduction to “informed consent”
Knowing that doctors are just as flawed and imperfect as everyone else, but that they know a lot more medical facts than most lay people, the law and medical ethics place a simple duty on every doctor:
Give the patient the important facts so the patient can make an intelligent decision about what treatment to have.
That’s why the word “informed” comes before the word “consent.” Information comes first. Consent is meaningless without the facts.
Another common misconception about informed consent is that the doctor has a duty to scare the patient to death, run down every horrible thing that could happen, and then put pen and paper in front of the now quivering patient. Wrong.
Informed consent is about building a bond between the doctor and the patient, through a candid dialog that doesn’t leave out anything important.
You need to understand as a patient that you will get better medical care and have a better chance of recovery if you engage in a candid dialog with the doctor.
Thoughtful doctors talk about forging a partnership with the patient. They talk about “a leap to trust” that the patient is asked to make — but a leap that’s only justified after a good conversation. No thoughtful doctor asks for blind faith.
Informed trust is what it’s about.
The moving story of Michael Skolnik, who died because his parents didn’t ask enough questions about the surgery a doctor wanted to do. This is from a group his parents founded called “Transparent Health,” and it answers the question about how a conversation can save a life.
Talking to Your Surgeon: What You Need to Ask
Here are some suggested questions for a dialog with your surgeon:
What’s the best possible outcome? (Sometimes it’s not so hot, and it makes you rightly question if the treatment is worth the pain and trouble and risk.)
What’s the worst realistic outcome that you’ve seen? (I put in “realistic” because many doctors will tell you, as a conversation stopper, that the worst outcome is death. That may be true — and if death is a realistic possibility, you sure want to know that. BUT focus on realistic possibilities and coax out what the surgeon has seen or knows about.)
And then ask: What do you do to minimize the odds of the bad stuff happening?
Do I really need this treatment/procedure? (A busy surgeon – and busy means a lot of doctors have confidence in this surgeon — will be more candid than a surgeon with time on his hands to tell you that waiting might be the most prudent thing to do.)
How will having this done affect my future care? (This applies especially to diagnostic imaging tests. If it’s just to take pretty pictures, do you really need it?)
What are my options? Is there another way to get the job done that would be safer for me?
(Along the same lines:) If you or one of your family members had my condition, what would you recommend?
“Is there anyone at your institution (in your partnership, in my town, etc.) who does these procedures more than you do? If so, would you mind if I speak to him or her?” (A defensive response to this question is a red flag.)
(Another question that gets at the experience issue) “Who would you ask to do the operation on a close family member of yours if you couldn’t?”
More detailed questions are appropriate if what’s suggested amounts to experimental, non-standard care. Here are questions suggested by the Alliance for Human Research Protection.
Myth versus Reality in Medical Decision-Making
Here’s an excellent quick myth-busting guide from the National Cancer Institute. This was addressed to patients enrolling in experimental treatment studies for cancer, but it really applies to all kinds of medical decisions when serious health matters are at stake.
Myth: Informed consent is designed primarily to protect the legal interests of the research team [or the hospital/doctors where you’re getting treatment].
Reality: The purpose of the process is to protect you and other participants by providing access to information that can help you make an informed choice. It also is designed to make you aware of your rights as a participant.
Myth: The most important part of this process is signing the informed consent document.
Reality: Actually, the heart of this process is your ongoing interaction and discussions with the research team and other medical personnel-before, during, and after the trial. The document is designed to get this conversation started.
Myth: My doctor knows best; he or she can tell me whether or not I should consent to participate.
Reality: Your doctor is likely to be a valuable source of advice and information, but only you can make this decision. No one-not even medical experts-can predict whether a treatment, screening, prevention, or supportive care method under evaluation in a trial will prove successful. The informed consent process is designed to help you weigh all of the information and make the right choice for you or your child.
Myth: Once I sign the consent form, I have to enroll and stay enrolled in the trial.
Reality: That’s not true. Even after you sign the form, you are free to change your mind and decide not to participate. You also have the right to leave a clinical trial at any time for any reason, without forfeiting access to other treatment.
Myth: Medical personnel are busy, so I can’t really expect them to keep me informed as the trial progresses or listen to my questions.
Reality: The research team has a duty to keep you informed, make sure that you understand the information they provide, and answer your questions. If you ever feel that you are not getting what you need, do not hesitate to speak up. You will be given the name and phone number of a key contact person who can answer your questions throughout the course of the trial. Keep in mind that people like you are making this research possible through their willingness to participate.
See the whole guide to informed consent from the NCI by clicking here.
To your continued health!
Patrick Malone & Associates