Major health care groups joined patient advocates and the general public last week to highlight the importance of patients’ ability to participate in decisions about health priorities. This was the main challenge at stake at this year’s Patient Rights Day. But this public conversation about patients’ rights has been taking place in Europe – not in the United States.
Europe drafted the Charter of Patients’ Rights 20 years ago. Each April, Public Conversation brings countries together to encourage patients’ participation in health decisions beyond the differences in their health care systems. However, the United States is lagging behind in having an open and wide-ranging conversation about patients’ rights. Patient care in the country can benefit from paying attention to how others include patients’ voices.
In the United States, patients’ voices are often left out of decisions about health priorities. When it comes time to decide how to allocate health care resources, decision makers tend to rely on groups of experts — medical providers who are familiar with the situation — and public opinion surveys. Asking patients is often not part of the process even though these decisions primarily affect patients.
Why are the voices that routinely dominate health care decisions in the United States the voices of third parties? How does it affect our experience as patients?
My research focuses on the medical humanities. The ethics of providing and receiving care is a topic I have studied through the lens of many patients, including those whose voices cannot be heard due to their inability to speak due to paralysis or aphasia. Others are muted because systemic agents are actively suppressing their voices.
Among the silent suffering, countless testimonies have emerged in the media from women whose pain was minimized in the emergency room, leading to delayed care and imminent deaths. Scientific studies have confirmed that female patients tend to receive less acute pain management when expressing the same level of pain as male patients. Likewise, older patients tend to receive less aggressive treatment than younger patients with the same condition. In the face of such prejudices, unhelpful voices are rarely heard until advocates amplify them or highlight them on Patient Rights Day.
It’s hard to change what we don’t think about. In the United States, 87 percent of cardiologists are men. When these experts were consulted by policy makers to raise public awareness about heart health, they listed known symptoms including chest pain and a tingling sensation in the left arm. However, most women who have a heart attack do not have these symptoms. Women who come to the emergency room and report symptoms of back pain or nausea are often asked about their stress level or how much they are carrying, and are sent home without ever seeing a cardiologist. They may die at home. Since their voice was not recognized, it was blocked.
Studies have found that media campaigns, such as those held in Europe during Patient Rights Day, can help inform social representations – what we think of when we hear “patient’s rights” or “heart attack”.
Recognizing and defending patients’ rights is also important for addressing systemic biases in health care, because when voices are systematically withheld, entire populations are not given attention. The perinatal mortality rate for black women in the United States is 243 percent higher than for white women. During the COVID-19 pandemic, minorities and poor and marginalized groups were disproportionately affected in all countries where epidemiological data was collected. To build a fair and inclusive healthcare system, we must ensure that the voices of disadvantaged patients are heard when seeking care.
Patient Rights Day gives us an opportunity to hear patients’ voices through the work of advocacy groups, and to change our perceptions. For nearly 15 years, I have worked with patients who are completely paralyzed and cannot verbally express their wishes due to shutdown syndrome. From the outside, it is easy to assume that these patients have a poor quality of life. Indeed, experts and able-bodied third parties systematically underestimate the quality of life of severely disabled patients – a phenomenon known as the disability paradox. Huge amounts of medical and research money are being determined based on these third-party votes. However, if you ask patients and the advocates who work with them, you will discover that most of them talk about a good quality of life.
Since the European Charter of Patient Rights was drafted two decades ago, events focused on patient rights have brought people together across healthcare differences to educate patients about their rights and encourage a participatory framework for healthcare: a framework in which patient voices shape practices, laws, and resource allocation decisions in healthcare. .
Will the United States benefit from the adoption of Patient Rights Day? The potential effect is compelling. As patients, we should all care about making patients’ voices heard, because we can all be on the receiving end of a policy or a caregiver that ignores and silences our personal experience. Once we hear the voices of patients, the only question remains: Do we listen?
Marie Kristen NezyPh.D. Research Associate and Lecturer in the Cognitive Science Program at Dartmouth College. Nisi is also an instructor in the Department of Psychiatry and Biobehavioral Sciences at the David Geffen School of Medicine at UCLA..