Everybody’s talking about it: The latest medical breakthroughs and the direst health care concerns. Books, TV shows, films, newspaper headlines and social media remind us every day about remarkable options and hard choices.
But taking responsibility for our health care doesn’t start when we face serious illness, and it’s a responsibility that cannot be outsourced. Even those closest to you aren’t usually authorized to consent to your medical procedures. Long before critical decisions must be made, it’s a good idea to embrace a critically important truth: Your best medical advocate is you.
Many of us are still getting used to this idea, especially older people who came along at a time when doctors didn’t think they should tell their patients the truth about their condition, or even give them options. That was the way things were for most of the history of medicine. Ancient medical ethics has nothing to say about what’s called informed consent today.
Historically, doctors kept bad news to themselves, or maybe shared it with their fellow physicians or a few patients who needed to know, like people who were getting amputations. Even then the likely course of an illness wasn’t usually shared. Women were especially considered to be too sensitive for the truth. At the unethical extreme, all sorts of experiments were done — often on people of color and vulnerable populations — to gain medical knowledge, having nothing to do with the patient’s illness, in complete disregard for their dignity and risking serious suffering.
Starting in the 1960s, the movement called informed consent was part of a big change in medical ethics, one that led to the concept of personal responsibility for health today. Not that people never exercised personal agency in their health care — of course they did and in all sorts of ways — but the medical world’s obligation to cooperate with and inform patients who had their own goals wasn’t part of medical ethics.
Even with informed consent firmly established, patients still need to make sure they have enough clear information to work with. All those forms you are asked to fill out don’t substitute for the clear information you need and are entitled to have. The place for that is your conversation with your doctor. Most doctors mean well but not all have excellent communication skills, and the financing of medical care means they are usually very pressed for time with each patient.
To be your own best medical advocate, here are three simple steps to keep in mind when you visit your doctor.
1. Be prepared.
Come to your appointment with written questions and feel free to take notes of your conversation. Your doctor’s notes are mainly taken for the medical record, for writing prescriptions and for legal reasons, and not necessarily in language you will understand. Because you might be feeling stressed, you can even give a relative or friend permission to come into the room with you to help you remember the doctor’s comments. If you don’t understand any answers, ask follow-up questions.
2. Be open.
Speak freely and fully with your caregiver about any symptoms you may have, as well as what’s working well — or not so well — in your treatments. Doctors aren’t mind readers. They can’t always tell what’s going on even with the most sophisticated tests. So patients need to do their part by making plain their concerns. (And don’t be embarrassed to ask for help, especially common among male patients.) That includes openness about any alternative therapies you’re using in case they interact with the meds that your doctor is prescribing.
3. Be clear about your goals.
A diagnostic test or questionnaire hasn’t been invented yet that can discern your priorities and convey them to your doctor. Doctors can’t know what’s most important to you without you telling them. Before your appointment, jot down what you hope to learn from your conversation, as well as your short-term and long-term health care goals.
Doctors aren’t allowed to make decisions for you, but they can certainly empower you to better understand the risks and benefits of your options, and the effects of those options on your lifestyle and what’s important to you. You can help by fully embracing your role as your own best medical advocate. By having more control over your own care and knowing your decisions are now better informed, you even may be able to reduce your stress level about health issues. Just remember: Your doctor is an expert on medicine but not an expert on you.
By Dr. Amy Gutmann, president of the University of Pennsylvania, and Dr. Jonathan D. Moreno, David and Lyn Silfen University Professor at the University of Pennsylvania. Gutmann and Moreno are the co-authors of the new book, EVERYBODY WANTS TO GO TO HEAVEN BUT NOBODY WANTS TO DIE: Bioethics and the Transformation of Health Care in America (Liveright).