Getting the Best Medical Care: a Newsletter from Patrick Malone

In This Issue

Why "Informed Consent" Is Good for Your Health

Myth vs. Reality in Medical Decision-Making

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When a Conversation Can Save a Life

Dear Patrick,

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.

As before: Feel free to "unsubscribe" on the button at the bottom of this email. But if you find it helpful, pass it along to people you care about.

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.

Bonus video:

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.

Past issues of this newsletter:

We're now in our second year of this newsletter. This is issue No. 15.

No. 13 and 14 focused on doing your own health care research on the Internet. No. 13 opened the discussion of "separating fact from hype" in health care advice with a piece on HealthNewsReview, plus articles on the five most overrated prescription medicines and the Miranda warning you see on a lot of so-called natural health products. Read No. 13 here.

No. 14 featured a short list of reliable web sites for health care information. We also did a short expose of a very popular website that one writer memorably called "a hypochondriac time suck." As a bonus, one more click will give you an excellent food pyramid for a healthy diet. Read No. 14 here.

Here's a rundown of our newsletters in 2010:

Our first newsletter focused on the problem of conflicts of interest in medicine -- what you need to know in general, and how to find out if your doctor has a conflict that might affect the quality of your care. Click here to see that newsletter again.

Newsletter No. 2 expanded the discussion into the related topic of why experience counts -- especially when choosing a surgeon. We focused on the story of minimally invasive prostate surgery with the device called the da Vinci robot. We explained how the lessons apply to any kind of surgery or medical procedure. To see newsletter No. 2 again, click here.

Newsletter No. 3 talked about why "more is not always better" in modern medicine. We focused on cancer screening, especially for breast and prostate cancer, and why you can feel not so guilty if you're a little less aggressive about getting the test. (But if you have any symptoms, you shouldn't wait!) Click here to read it again.

Newsletter No. 4 talked about choosing a hospital, and why the best known rating systems such as U.S. News & World Report may not be all they're cracked up to be. I give some tips about other ways to make sure your hospital is up to par. Click here to read it again.

Newsletter No. 5 talked numbers -- how it's important for all consumers of health care who want to make informed choices to learn a little bit about how statistics are used -- and misused -- in health care. I introduced readers how to read medical statistics in a straightforward way. To read it again, click here.

Newsletter No. 6: Back pain and heart disease: how less can be more. The simpler approaches can work just as well as or better than more complex kinds of surgery. Here's the link to see it again.

Newsletter No. 7: Preventive care: what every adult American needs. Here's the link.

Newsletter No. 8: Colonoscopy: two questions you must ask to make sure you get a competent screening exam. These questions can be a real life-saver when you know how often colonoscopies miss life-threatening lesions. Read more here.

No. 9: Why getting and reading your own medical records can save your life -- and how to do it. The link is here.

No. 10: The joys of being a health care skeptic -- or, Why statisticians are our friends. And more on why most published research eventually turns out to be wrong. The link is here.

No. 11: Part one of preventing injury in the hospital, discussing why 24/7 bedside coverage is essential, and focusing specifically on bedsores and falls. Read it here.

No. 12: Part two of preventing injury in the hospital: infections, blood clots and wrong medicine/wrong dose problems. Here is the link.

To your continued health!

Sincerely,

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Patrick Malone
Patrick Malone & Associates