The Patient's Perspective

Presenters:

Trudy Lieberman, Director, Center for Consumer Health Choices, Consumers Union, Yonkers, NY

Raymond T. McEachern, Founder and President, Association for Responsible Medicine, Tampa, FL

After the demise of the Clinton health plan, some emphasis shifted from access and coverage to quality of the clinical experience. With that shift came a desire to quantify "quality" in some way.

Quality is a nebulous term. The quality of service delivery, which measures issues such as waiting time and politeness of staff, is often confused with the quality of clinical care in public discussion. Quality in managed care is often conceived as underuse and rarely as overuse. The public is beginning to understand the concept of misuse and this may become a platform to deal with other quality issues.

What we have learned about consumer use of quality information:

• Contrary to market theory, performance measures have not moved the marketplace. Consumers have not flocked to better performing health plans, hospitals, or physicians.
• Performance measures may have stimulated improvements in healthcare practices, but they have not heavily influenced consumer choice.
• The relationship between improved outcomes and public disclosure remains speculative. A growing body of literature suggests that neither purchasers nor consumers make use of publicly disclosed information about quality.

Report cards have shortcomings. Consumer Reports examined 30 report cards in 1999 and found:

• All failed to tell people how to use the data or make trade-offs.
• They overwhelmed consumers with too much information and gave explanations that were confusing or misleading.
• They failed to make judgments, leaving it up to consumers.

There is lack of relevant of data. Current data do not measure appropriateness of care. Mammogram rates do not tell whether someone gets the right treatment for breast cancer and measures do not reveal whether a physician performing a back surgery has done the operation enough times to qualify as competent.

The quantitative data is relatively weak compared to personal past experiences and recommendations from professionals, family, and friends. In the absence of salience, quality indicators do not outweigh these and other factors, such as price.

Evidence shows that even when the information is highly salient, it may not reach consumers. A Consumer Report survey found that only six percent of readers with Long-Term care experience had used HCFA, now CMS, information to make decisions. Most relied on doctors or family members. In Pennsylvania, less than 20 percent of patients were aware of publicly available hospital- and surgeon-specific mortality rate information; less than 12 percent reported they had information before having an operation; and less than 1 percent reported that the information had influenced their choice of hospital or surgeon.

According to Ms. Lieberman, providers thwart the dissemination of good information by finding ways to undermine information that could be harmful. Doctors have tried to persuade patients that hospitals with low mortality rates were not better but simply had doctors who avoided operating on sicker patients who were more likely to die. A study for Consumer Reports found that providers were making reports unavailable or unreadable.

Ms. Lieberman said, that we cannot expect consumers to move the market in patient safety, just as we do not rely on consumers to improve safety in other industries. However, some patient safety measures may be highly salient to consumers, such as adverse anesthesiology incident rates. We do not have a free market in health care. Managed care restricts our choice of facilities. The question remains about whether patients will pay out of pocket to go to a hospital that has fewer adverse events. Consumers may also prefer nearby hospitals that might be of lesser quality than one further away.

Despite shortfalls, the very existence of patient safety information can help managers improve systems. Information will provide a necessary check on an industry that is largely profit-driven.

According to Ray McEachern, the medical community views patients as trouble-makers (if they ask too many questions) or enemies (if they file a complaint). Since, by definition, mistakes are unintentional, many practitioners believe they should not be held accountable for them. To prevail in a malpractice lawsuit, patients must prove that the bad outcome was the direct result of a negligent mistake. Proving that an outcome would not have occurred but for a preceding error creates a problem in logic that is impossible to solve.

Mr. McEachern presented several illustrations that demonstrate his belief that many medical injuries are the result of disregard for established patient safety procedures, condescending attitudes toward patients, and low professional esteem afforded to nurses. The illustrations suggest that system changes will not make a major difference in reducing medical injury unless there is a concurrent change in attitudes about patient safety. Until there are systems that reward, rather than punish, those who speak out and that encourage the exchange of views about the best treatment option or differential diagnosis, mistakes will continue to kill and injure people by the thousands.

An additional problem that consumers have noted is that unlike good Samaritan laws for accident victims, there is nothing in law or ethics that requires doctors to help patients who have suffered injury because of another doctor's mistake. Doctors may be reluctant to help such patients fearing liability.

The most important change in attitude that will lead to a reduction in medical injuries, would be a requirement to have informed consent agreements that are both written and binding. A Louisiana law ensures that patients are informed of the possible complications of most medical and surgical procedures as identified by the Louisiana Medical Disclosure Panel, a group that continually updates the list of complications required to be disclosed to patients. The list of complications for various medical and surgical procedures could form the basis for a hospital reporting system supported by patients and medical personnel without blame. According to Mr. McEachern, hospitals should have informed consent agreements for each procedure and treatment plan they offer, and they should collect and report to the public the complication rates for each of these procedures, assuming a minimum number of procedures were performed during a reporting period. A consumer-friendly report of actual complications for some common procedures was prepared by the Dunn & Bradstreet Company for every Florida hospital in 1992.

A final illustration listed ten randomly selected doctors in Florida with extensive medical malpractice records. Seven of the ten doctors still have privileges at two or more hospitals. This sends the message that hospitals do not set high standards for their medical staff. Patients have a right to expect that hospitals screen out doctors with extensive malpractice records.

Additional Resources:

Before the State Board of Medical Examiners, State of Colorado. Case no. ME 93-06 Initial decision: in the matter of disciplinary proceedings regarding the license to practice medicine in the State of Colorado of Joseph J. Verbrugge, Jr., M.D., License no.18269, respondent. CO: Colorado Medical Board; 1994 May.

Dun and Bradstreet Healthcare Information. 1994 Consumer hospital guide: Tampa/St. Petersburg Area Hospitals. Plano (TX): EDS; 1994.

Kraman SS, Hamm G. Risk management: extreme honesty may be the best policy. Ann Intern Med 1999 Dec 21;131(12):963-67.

Louisiana Revised Statutes. Part XXII: Uniform consent law, section 1299.40. LA: Louisiana State Law Institute.

Siegel B. Medicine's fatal code of silence: the death of Richard Leonard during routine ear surgery. Los Angeles: Los Angeles Times, Times Mirror Company. 1995 Aug.

Wilson D, Heath D. The prospects for change: the Hutch zealously guards its secrets. Seattle (WA): The Seattle Times Company [online at seattletimes.com]. 2001.

Wu AW. Handling hospital errors: is disclosure the best defense? Ann Intern Med 1999 Dec 21;131(12):970-72.

Source Gov Site : http://www.ahrq.gov/news/ulpix.htm