In March of 2010 President Barack Obama signed into law H. R. 3590, the Patient Protection and Affordable Care Act (P.L. 111-148) and a short time later H. R. 4872, the Health Care and Education Reconciliation Act (P. L. 1101-152). The intention of this healthcare reform is to build a healthcare system that will provide coverage for all Americans.
There are many goals of this healthcare reform. One goal is to ensure that all Americans will have access to healthcare choices, implying the need to be knowledgeable about and understand these choices and engage in a shared decision-making process with healthcare providers.
The Health and Human Services web site explains the Affordable Care Act like this: “The Affordable Care Act puts consumers back in charge of their health care. Under the law, a new ‘Patient’s Bill of Rights’ gives the American people the stability and flexibility they need to make informed choices about their health.”
One of the goals of the reform is to ensure a variety of healthcare choices are available for all, with a focus on the need for individuals to understand these choices, and engage in a shared decision-making process with healthcare providers. Care for individuals is important but care for families, communities, and populations is also essential. After all you cannot have a healthy America without healthy Americans who are able to share in decisions about that care.
I have completed two studies on shared decision-making, one on home care nurses and one on patients. I have also completed a qualitative systematic review with colleagues from Pace’s Lienhard School of Nursing that considers internal and external influences on shared decision-making. The results overwhelmingly indicate that patients want to be actively engaged in the sharing of decisions regarding their health.
The two studies revealed certain themes. These themes included the patient’s reliance on their care providers and their need for those providers to listen to them and take the time to engage with them. Patients were scared when their provider would not listen because in some cases they were the only individuals available who provided their care. When the health care provider holds information and does not share, it creates mistrust and fear.
Furthermore, patients have often told me that they feel their healthcare providers not only do not listen to them but they do not look at them. Instead providers hide behind their prescription pads, their desks, and their computers. Patients feel powerless, especially if they perceive that their healthcare provider is withholding information about their health, the variety of care choices, and information that they need so that they can be informed and share in decisions. Many of the patients interviewed indicated that when healthcare providers did not listen to them they would either not participate fully in conversations, not follow through on the recommendations of the provider or they would not go back to the provider.
For the patient to actively share in the decisions pertaining to their care there needs to be a shift in the way in which healthcare providers carry out their practice. Practice takes a different approach where there is a ‘working together’ which results in a real empowerment for both the care provider and the patient. It is a way of practicing where the patient is the center of care. Each individual’s ideas, values, and beliefs are discussed leading to shared decisions and ultimately better health outcomes.
In recent years, healthcare has become patient-centered. For patients to change their behaviors, they must be active participants in their care. This leads to better outcomes, and the healthcare system as a whole improves.
Truglio-Londrigan is a professor at Pace University’s College of Health Professions, Lienhard School of Nursing, and a fellow of the New York Academy of Medicine.