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"It can be scary to be in a health crisis and have things pushed on you, to have to make decisions quickly," says Michelle Acciavatti, a patient advocacy educator and end-of-life specialist based in Vermont who works with people locally as well as remotely. "A lot of us have been brought up to implicitly trust everything a doctor says. We have the right to speak up and ask questions." Finding a patient advocate isn't always easy (a Google search in my area turned up surprisingly little). That's why Acciavatti puts the focus on educating and empowering people to act as their own advocate. It starts with patient literacy—being able to understand your medical situation so you can ask the right questions. "Then we can come up with strategies for how to make sure you're exercising your rights and feel safe and comfortable doing so. That translates into being engaged in your health-care decisions so you can make them from a place of understanding and confidence."
Most people never read their patient's bill of rights, the pamphlet presented by hospital staff to the sick upon arrival. Although I can't say I read mine, I did know enough to exercise my rights—such as declining multiple finger pricks to check my blood sugar when I've never had a history of diabetes. "It's okay to contradict your doctors and nurses, even though it might not always be met with friendliness or compassion," says Acciavatti, who recommends tapping friends or family as stand-in advocates. "You can have somebody come into the hospital and read your bill of rights with you, so that when you do speak up there is someone by your side." Nor do we have to stick with a caregiver who doesn't jibe with us. When I met my third infectious disease doctor, he told me anecdotes about two young women with listeria meningitis: one who died suddenly of a brain abscess, and another who is still in speech therapy five years after treatment. The stories unsettled me so deeply that I had to pick another MD to follow my case to completion and my body back to health.
True health care reform—personalized to the patient, high-tech yet human—can't come fast enough. When we speak up for what we need, the system will have no choice but to deliver. Never mind investigative journalism: What we really need is a manifesto. The revolution starts with us.