Patients’ rights: In health care, who speaks for you?

Major health care groups joined patients’ advocates and the general public last week to highlight the importance of patients being able to take part in decisions on health priorities. This was the central challenge at stake in this year’s Patients’ Rights Day. But this public conversation on patients’ rights was taking place in Europe — not in the United States.

Europe drafted a patients’ rights charter 20 years ago. Every year in April, a public conversation brings nations together to encourage patient participation in health decisions beyond differences in their health care systems. The United States, however, lags behind in conducting an open, broad-based conversation about patients’ rights. Patient care in the country could benefit from paying attention to how others are including patients’ voices.

In the U.S., patients’ voices are often excluded from decisions on health priorities. When it comes time to decide how to allocate health care resources, decision-makers tend to rely on panels of experts — medical providers familiar with the condition — and public opinion surveys. Asking the patients is often not a part of the process even though these decisions primarily affect the patients.

Why is it that the voices routinely dominating health care decisions in the U.S. are those of third parties? And how does it impact our experience as patients?

My research focuses on medical humanities. The ethics of giving and receiving care is a topic I have studied through the lens of many patients, including those whose voices cannot be heard because they are unable to speak due to paralysis or aphasia. Others are muted because systemic factors actively suppress their voices.

Among the silent suffering, countless testimonies have emerged in the media from women whose pain was downplayed in the emergency room, resulting in delayed care and traumatic near misses. Scientific studies have confirmed that female patients tend to receive less aggressive pain management when voicing the same level of pain as male patients. Similarly, older patients tend to receive less aggressive treatmentthan younger patients with the same condition. Against such biases, unaided voices are seldom heard until advocates amplify them or a Patients’ Rights Day give them the spotlight.

It is hard to change what we don’t think about. In the U.S., 87 percent of cardiologists are men. When these experts were consulted by policymakers to increase public awareness around cardiac health, they listed known symptoms including chest pain and tingling sensation in the left arm. Yet, most women who suffer a heart attack never experience these symptoms. Women who come to the emergency room reporting symptoms of back pain or nausea are often asked about their stress level or how much carrying they do, and are sent home without ever seeing a cardiologist. They may die at home. Because their voice was not recognized, it was screened out.

Studies find that information campaigns, such as those organized in Europe during Patients’ Rights Day, can help inform social representations — what we think about when we hear “patients’ rights” or “heart attack.”

Recognizing and advocating for patients’ rights is also important to address systemic biases in health care, because when voices are systematically screened out, entire populations go uncared for. The perinatal maternal death rate for Black women in the United States in 243 percent higher than for white women. During the COVID-19 pandemic, minorities, poor and marginalized groups have been disproportionately affected in all countries where epidemiological data was collected. To build a just and inclusive health care system, we must ensure that the voices of underserved patients are heard when they seek care.

Patients’ Rights Day gives us an opportunity to hear patients’ voices through the work of advocacy groups, and to change our perceptions. For almost 15 years, I have worked with patients who are completely paralyzed and cannot express their wishes verbally because of locked-in syndrome. From the outside, it is easy to assume these patients must have a terrible quality of life. In fact, experts and able-bodied third parties systematically underestimate the quality of life of patients with severe disability — a phenomenon known as the disability paradox. Enormous amounts of medical and research funds are decided based on these third-party voices. Yet, if you ask the patients and the advocates who work with them, you will discover that most of them report a good quality of life.

Ever since the European Charter of Patients’ Rights was drafted two decades ago, events focused on patients’ rights have brought people together across health care differences to educate patients about their rights and encourage a participative framework for healthcare: one where the voices of patients shape the practices, laws and resource allocation decisions in healthcare.

Could the United States benefit from adopting a Patients’ Rights Day? The potential impact is compelling. As patients, we should all care about having patients’ voices heard, because we can all be on the receiving end of a policy or provider who dismisses our subjective experience and suppresses our voice. And once we hear the patients’ voices, the only remaining question is: Will we listen?

Marie-Christine Nizzi, Ph.D., is a research associate and lecturer in the Cognitive Science Program at Dartmouth College. Nizzi is also an instructor in the Department of Psychiatry and Biobehavioral Sciences at the David Geffen School of Medicine at UCLA.