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