You’re about to sign the informed consent document for treatment with chemotherapy, radiation or surgery. How well-informed you actually are is another matter. That could range anywhere from “Here’s the clipboard — sign on the dotted line” as you’re transported to the operating room to having had a series of thoughtful, two-way conversations with your treatment team well in advance. Read on about challenges to true informed consent, how priorities may differ between physicians and patients, and why and how to speak up.
[See: 10 Lessons From Empowered Patients.]
Informed consent is a process, not a form. Truly being informed means patients understand treatment options, benefits, risks and supporting evidence or lack thereof. “The chance to ask questions and get them answered to your satisfaction” is a necessary step, according to the American Cancer Society. It also means taking time to talk to family members or others as needed, and making a decision you feel is in your best interest.
Alternatives, including no treatment, belong in the discussion. It can be hard to push back against medical momentum. That option to just say no may get overlooked in the treatment discussion, says Floyd Fowler, senior scientific advisor to the Informed Medical Decisions Foundation, a division of Healthwise. “Sometimes the issue is to understand why a reasonable person might make a particular choice,” he says. “And that is particularly more complicated for not doing something — for why you might not want another round of chemotherapy.” For example, he says, if the next round of chemo only offers a slight reduction in the risk of cancer recurrence, patients should be made aware of that when making choices. Or if a man with prostate cancer will likely do just as well with observation alone, that option should be explored.
Doctors don’t always have enough time to talk. “It’s very rare in my experience that you have a truly informed patient who understands all the options, all the potential benefits, all the studies, all the risks, the limits of what’s been published,” says Dr. Elaine Schattner, a physician and women’s health advocate. “Also alternative treatments, including no treatment. Often patients will be told of different treatments but not the option of observation, or just not treating it , [which] goes unmentioned.” Informed consent is a “terrific goal,” she says. “The problem is, in reality, it’s hard to achieve. And that’s in part because doctors lack time to adequately explain things to patients.”
[See: 7 Reasons to Call Off a Surgery.]
Complex decisions aren’t easily simplified. Did you learn about RNA and DNA, the immune system, cell signaling and molecular pathways in your high-school biology class? Or statistical analysis along with math? That kind of knowledge could help, Schattner says. “People might, when confronted with a serious illness and having to make the decision in a hurry, have the terms under their belt, so to speak, to understand more of what the doctor is saying,” she says. While the average person may be perfectly capable of understanding antibodies, germs and cancer, she’s concerned that most would be not be equipped to enter a doctor’s office with a serious illness, weighed down with anxiety about their new diagnosis, and yet be prepared to make decisions about certain treatment strategies.
Talking “at” patients squelches give and take. You’ve had that doctor — we all have — who explains your condition and treatment options with detail, depth and eloquence, but all without pausing for breath. It’s hard to ask questions or absorb information when you can’t get a word in edgewise. Preparing helps level the playing field, Fowler says. He praises approaches like that of Patient Support Corps in the UCSF Breast Care Center. Before patients meet with doctors to plan treatment, trained staff members support and work with them to identify and articulate key questions and concerns. Staff members also can attend and record the medical consultation and create a summary for both the patient and doctor.
Educating yourself is essential. As treatment choices become increasingly advanced, that’s more reason than ever for patients and caregivers to go online and get informed, Schattner says. “I don’t think, unfortunately, you can count on most doctors to outline those options, especially when it comes to patients who are facing complex illness for which there are competing drugs and new drugs,” she says. “It’s hard for doctors to keep up with all the literature.” Many patients with ongoing conditions — not only cancer but other chronic diseases like lupus — become incredibly savvy when it comes to research findings, treatment decisions, medication side effects and serious long-term complications.
Second opinions are valuable. “If patients are educated and capable of doing so, I advise them to go online and also get a second opinion, if possible, if their insurance will cover that or they can otherwise afford to do so,” Schattner says. Getting a second opinion gives you access to more information and a different perspective, and another chance to ask questions and seek clarity.
[See: 10 Ways to Prepare for Surgery.]
‘Shared decision-making’ aren’t just buzzwords. Initially, Fowler says, the foundation’s approach to better medical decision-making was, “We’ll just train up the doctors so they make the right decisions.” However, he says, “It became clear to us that if you didn’t get the patients’ input, you could never get it right. Because they just cared about different things. The thing that would serve me best might not be the thing that serves you best.” Now, he says, it’s gratifying that organizations from the American Medical Association to the Centers for Medicare and Medicaid Services recognize the importance of shared decision-making to high-quality health care.
Finding the right doctor is important. As a patient, Schattner says, she is fortunate to have the same, trusted internist she began with 30 years ago, although she admits that’s very rare. “One of the best things that a patient can do to have her preferences respected is to find a doctor who will get to know her — over time, ideally,” she says. “And that will help assure that your preferences, your values, are reflected in the decisions that are made and the choices that are offered.” That includes consultations and referrals made on your behalf, she adds.
Perspectives differ. A 2010 study in the Annals of Plastic Surgery examined whether patients and health care providers agreed on the most important facts and goals for decisions around breast reconstruction. Patients placed a higher priority than physicians on avoiding the use of a breast prosthesis. Patients also placed more importance on facts on immediate versus delayed reconstruction, while physicians focused more on statistics on women who were satisfied without breast reconstruction.
Your preferences matter. Patients’ quality-of-life concerns — such as avoiding certain side effects — may override what physicians believe is the best course of treatment. “Let’s say you have patient who would benefit from chemotherapy that would cause loss of hair, temporarily,” Schattner says. “Ultimately, the doctor has to respect the patient’s choice whether or not to take the treatment. But a good doctor would take the time to nicely explain why he thinks it’s worth trying , and to avoid condescension.”
Schattner recalls an example from her own practice. “When I worked taking care of women with breast cancer, there were some who felt strongly that they didn’t want to take anti-estrogen [drugs],” she says. “I had trouble with their decisions, because anti-estrogens were perhaps the most basic of their treatment components. But I believe that you have to respect patients’ wishes and not dismiss those,” she adds. “I don’t think being a doctor is about dictating treatment. It’s about advising and then giving carefully what treatments patients accept.”
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Speaking Up for Patient Preferences in Cancer Treatment Decisions originally appeared on usnews.com
