Reform Proposals Encourage Patients to Participate in Treatment Decisions

As part of health reform under consideration by Congress, supporters of patients' playing a larger role in directing their health care have succeeded in adding measures to spur shared decision making by patients.

Advocates of shared decision making said the initiative belongs in health reform legislation because it improves patient satisfaction with outcomes. Moreover, a growing body of research has shown that patients who are educated about treatment choices and share in the decision-making process with their physicians are likely to get treatments that are less expensive than they would have otherwise received.

“The current standard of medical care in the United States fails to adequately ensure that patients are informed about all their treatment options and the risks and benefits of those options,” said Sen. Ron Wyden (D-Wash.) in a Senate speech. “This leads to patients' getting medical treatments they may not have wanted had they been fully informed of their treatment options and integrated into the decision-making process.”

Wyden introduced a bill (S 1133) in May to create a pilot program under Medicare on shared decision making. A similar approach was incorporated into the health reform bill approved by the Senate Health, Education, Labor, and Pensions (HELP) Committee in July. That bill would fund educational tools to help patients and caregivers understand treatment options and guide patients in choosing a treatment course with their clinician. The bill also would educate physicians on the use of decision-sharing tools, as well as tools to measure the satisfaction of patients and caregivers in the decision-making process.

A number of tools have emerged in recent years to help patients become more involved in the decision-making process, including informational videos and other materials that describe treatment options.

The proposed federal initiative builds on the efforts of several states to increase the role of patients in directing their care. A 2007 Washington state law set up a demonstration project to evaluate the cost-effectiveness of using decision aids. Similarly, legislation under consideration in Connecticut would require the state health department to develop a demonstration program on shared decision making. A bill in Vermont aims to contain health care costs through a shared decision-making demonstration program, which would include an analysis of potential barriers to clinicians' participating in shared decision making.

The increased push for patient involvement in making medical decisions follows a similar push in recent years aimed at patients with mental illness.

Mental health leaders who shaped the 2003 report by the President's New Freedom Commission on Mental Health and the authors of “Improving the 2006 Quality of Health Care for Mental and Substance-Use Conditions: Quality Chasm Series” stressed the importance of care that is guided by patients' preferences and by shared knowledge that stems from the free flow of information.

The push for greater patient involvement in mental health care was driven in part by earlier studies indicating that many people with mental disorders have no decision-making impairment. Mental health advocates have noted that because most patients ultimately decide for themselves what they will or will not do in regard to treatment, clinicians should embrace a more formalized role for patients in deciding a treatment course.

Recent research found that even for patients with serious and persistent mental illness, shared decision making offers benefits. A study published in the August Psychiatric Services found that a decision-sharing approach between psychiatrists and schizophrenia patients was useful for well-informed and compliant patients and for those who disliked their current antipsychotic medication. It was not useful for patients who may have a reduced ability to make decisions.

Similarly, a September 2007 report in Psychiatric Services found that many patients with severe mental illness preferred “active and collaborative roles, similar to those [patients] with other medical conditions.” The study found that patients preferred greater participation in mental health treatment decisions than they were generally allowed and that they were particularly interested in having an active role in decisions involving the use of psychotropic medications.

Helping patients to play a larger role in their medical decision making has been limited by the need for more detailed research on effective approaches and its limitations. In recent years research in this area has become a priority for the National Institute of Mental Health (NIMH) because patient involvement in treatment decisions is seen as critical to an individual's quality of life and autonomy and can help improve health outcomes.

To date NIMH-supported research has focused on understanding how patients with psychiatric disorders make decisions, testing interventions to support effective decision making, and measuring the outcomes of patients sharing in decision making.

As the research is completed, policymakers need to ensure that the findings are made available to patients and caregivers so individuals can educate themselves about their conditions or the conditions of their loved ones, said Tony Coelho. Coelho, chair of the Partnership to Improve Patient Care, spoke in June at a briefing sponsored by the Alliance for Health Reform.

“There is no way that providers and patients get the information today that they need,” he said. “Somebody in the ivory tower knows and people write books and do all kinds of things based on this information, but it doesn't get to patients and to providers.”

The Empowering Medicare Patient Choices Act is posted at<http://thomas.loc.gov> by searching on the bill number, S 1133. ▪