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President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry

Consumer Bill of Rights and Responsibilities
Chapter Four
Participation in Treatment Decisions
Statement of the Right

Consumers have the right and responsibility to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators.

In order to ensure consumers' right and ability to participate in treatment decisions, health care professionals should:

  • Provide patients with easily understood information and opportunity to decide among treatment options consistent with the informed consent process. Specifically,
    • Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
    • Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
    • Discuss all current treatments a consumer may be undergoing, including those alternative treatments that are self-administered.
  • Discuss all risks, benefits, and consequences to treatment or nontreatment.
  • Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
  • Discuss the use of advance directives -- both living wills and durable powers of attorney for health care -- with patients and their designated family members.
  • Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

To facilitate greater communication between patients and providers, health care providers, facilities, and plans should:

  • Disclose to consumers factors -- such as methods of compensation, ownership of or interest in health care facilities, or matters of conscience -- that could influence advice or treatment decisions.
  • Ensure that provider contracts do not contain any so-called "gag clauses" or other contractual mechanisms that restrict health care providers' ability to communicate with and advise patients about medically necessary treatment options.
  • Be prohibited from penalizing or seeking retribution against health care professionals or other health workers for advocating on behalf of their patients.


Consumers depend on health care professionals to provide them with expert consultation and advice on how to stay healthy or how to cure or palliate their health and medical problems. Unlike many other consumer transactions, the asymmetry of information between consumer and health care provider often is great. Decisionmaking also often occurs at a time of illness, which can undermine the patient's ability to act most effectively in his or her own interest.

Patient and Provider Communication

Relationships between consumers and health care professionals are most rewarding and likely to result in positive outcomes when they are characterized by open communication and active participation of patients in the treatment process. Patient participation in treatment is an essential part of compliance, and compliance improves the effectiveness of care and treatment.

The benefits of patient participation go beyond just the anticipated therapeutic effect of the intervention (Czajkowski and Chesney, 1990). For example, the Coronary Drug Project Research Group (1980), which studied the efficacy and safety of several lipid-lowering drugs, found that even among patients who only took placebos, good adherers had a much lower 5-year mortality rate (15 percent) than did poor adherers (24.6 percent).

Patient participation in treatment decision making also leads to improved satisfaction with care and better quality of life. For example, in a study of patients with early breast cancer, it was found that those who believed they were more responsible for treatment decisions and had more choice of treatment reported higher quality of life than those who perceived themselves as less in control of the treatment decisions (Street and Voigt, 1997).

To participate in decisionmaking about their care, consumers must have complete information about treatment options -- including the alternative of no intervention -- as well as the risks, benefits, and consequences of such options. Yet evidence suggests that clinical practice often falls short of these expectations. A 1988 study of hospitalized patients found that physicians discussed test or treatment rationale in only 43 percent of cases and alternatives in 12 percent of cases (Wu and Pearlman, 1988). Physicians shared with patients information about benefits in 34 percent of cases and risks in 14 percent of cases.

The continued development of communications technologies to help consumers more fully understand their treatment options and to evaluate the potential risks and benefits of treatments should be encouraged, for example, the use of videos to help men with prostate cancer evaluate the risks and benefits of surgery versus a "watchful waiting" strategy (Wennberg, 1995) and to help men with benign prostatic hypertrophy sort out options for treatment (Wagner et al., 1995).

Increasingly, effective communication between providers and patients demands some degree of cultural competence. By the year 2000, nearly one-quarter of the U.S. population will be members of racial or ethnic "minority" groups; this will grow to 47.5 percent by the middle of the next century. Cultural competence refers to the "demonstrated awareness and integration of three population-specific issues: health-related beliefs and cultural values, disease incidence and prevalence, and treatment efficacy" (Lavizzo-Mourey and Mackenzie, 1996). Effective communication for people with communication disabilities may require health care providers to provide auxiliary aids and services and remove certain communication barriers.

It also is imperative that providers be aware of and comply with their patients' decisions with respect to advance directives. Once a patient makes a decision, the health care team should respect this treatment choice. Yet there is clear evidence that this is not happening in far too many instances. Teno et al. (1995) studied 4,301 patients hospitalized in 6 hospitals and found that physicians often were unaware of their patients' wishes. In 47 percent of cases, physicians reported that they did not know of their patients' expressed desire for a "do not resuscitate" order. In another study focusing on nursing home residents transferred to hospitals, Davis, Southerland, Garrett, et al. (1991) found that medical treatment was consistent with advance directives in 75 percent of the 96 cases studied.

Organizational and Contractual Issues

There are a variety of organizational and contractual factors that also may influence communication between patients and providers. These include financial arrangements and contractual restrictions or sanctions that may inhibit the free exchange of information.

Much attention has focused in recent years on the potential effects of providers' financial incentives on treatment. Methods of compensating physicians can be a powerful mechanism to change provider practice, either to improve the quality of care provided to consumers or to reduce the costs of that care. But poorly designed compensation arrangements also can result in inappropriate use (including both overuse and underuse) and barriers to care.

All methods of compensating physicians and other health care providers create some form of incentive for behavior. Various approaches are used to offset the potential adverse effects of compensation arrangements. For example, fee-for-service systems may use utilization review mechanisms to temper incentives toward overutilization of health care services. Capitation systems may incorporate measures of quality and consumer satisfaction to minimize incentives toward overutilization. Similarly, salaried arrangements may use bonuses to encourage higher provider productivity and exemplary performance.

In 1996, the Health Care Financing Administration promulgated rules concerning the use of certain types of financial arrangements on behalf of health plans serving Medicare or Medicaid beneficiaries. These rules stipulate that compensation arrangements "may not include any direct or indirect payments to physicians or groups as an inducement to limit or reduce necessary services furnished to an individual enrollee who is covered under the managed care organization's contract." These regulations also require disclosure of information about arrangements that transfer substantial financial risk to the health care provider. If the compensation methods used places the physician or physician group at substantial financial risk, then the health plan must survey enrollees about access and satisfaction with the quality of services, and institute adequate and appropriate stop-loss protections.

In addition to financial incentives, contract rules that restrict providers' ability to advise patients about medically necessary treatment options have been the subject of much concern. Health care providers must be able to advocate for their patients without constraint or fear of reprisal. A report by the General Accounting Office (GAO, 1997) reported: "Of the 529 HMOs in our study, none used contract clauses that specifically restricted physicians from discussing all appropriate medical options with their patients. Two-thirds of responding plans and 60 percent of the contracts submitted had a nondisparagement, nonsolicitation, or confidentiality clause that some physicians might interpret as limiting communication about all treatment options. However, contracts with such business clauses often contained anti-gag language stating that the physician should not misconstrue the contract of a specific provision as restricting medical advice to patients or that the physician should foster open communication." As of mid-1997, 25 States had prohibited the use of such clauses in managed care contracts with physicians and legislation was pending in 23 other States (Health Policy Tracking Service, 1997). In December 1996, HCFA banned the use of gag rules under the Medicare program and in February 1997, HCFA took similar action regarding health plans' participating in Medicaid.

Implications of the Right

  • Consumers must take a more active part in the treatment decision process. Information can be empowering, but navigating the health care system requires patient effort, from completing advance directives to preparing questions for an office visit. This requires that the consumer ask questions, understand and give informed consent, and become a full partner in treatment decisions with his or her health care provider.
  • Health care providers also have the central role in ensuring the patient's participation in treatment decisions, including compliance with informed consent. They will need to improve their skills in providing information about the medical and scientific evidence underlying different treatment options to patients and their families; strive to overcome cultural and language and communication barriers; and keep abreast of the latest and best available treatment options. At the same time, they will need to do a better job of listening to their patients and following their decisions, including the decision to forgo treatment or certain types of treatment. Health care providers should assume this responsibility well before a patient reaches a hospital door. To hold the trust of patients, providers will need to disclose financial incentives that may introduce bias into treatment decisionmaking and to avoid such incentives when the balance is tipped against the patient. To be above any potential bias, providers must avoid self-referral arrangements that can cloud their professional judgment. And, finally, health care providers are and should be the most effective advocates for their patients' rights.
  • Health care facilities and plans must create and maintain an environment supportive of consumer participation in treatment decisions. In the office practice, this means ensuring adequate visit time for patients and providing support for shared decisionmaking programs when questions about care linger, arise after hours, or require further explanation. Health plans can play a significant role in educating patients on how to get the most out of their visit with a health care provider. They can arrange for translator services for patients and continuing education courses for providers to assure cultural and language competency. By statute, health plans and hospitals have obligations to educate the public about the use of advance directives. As importantly, once advance directives are signed, these documents must become part of the patient's health record and must move with the patient from care setting to care setting. In establishing provider compensation arrangements, health plans and facilities must be vigilant in guarding against the unintended, negative consequences of financial incentives by implementing programs to monitor quality of care and patient satisfaction. The nature of these incentives ought to be disclosed to patients and providers. In contracting with health care providers, plans and facilities should not restrict the provider's ability to discuss treatment options with the patient and not take reprisal upon the health care provider who serves as patient advocate.

References and Selected Reading

Coronary Drug Project Research Group. "Influence of Adherence to Treatment and Response of Cholesterol on Mortality in the Coronary Drug Project." N Engl J Med 1980; 18:1038-1041.

Czajkowski SM, Chesney MA. "Adherence and the Placebo Effect." in Schumacher, SK, Schron EB, Ockene JK, et al., editors. The Handbook of Health Behavior Change. New York: Springer Publishing Company; 1990.

Davis M, Southerland LI, Garrett JM, et al. "A Prospective Study of Advance Directives for Life-Sustaining Care." N Engl J Med 1991; 324:882-8.

General Accounting Office. Report to Congressional Requesters. Managed Care: Explicit Gag Clauses Not Found in HMO Contracts, But Physician Concerns Remain. August 1997.

Health Policy Tracking Service. Issue Brief: Bans on Gag Clauses. April 1997.

Lavizzo-Mourey R, Mackenzie ER. "Cultural Competence: Essential Measurements of Quality for Managed Care Organizations." Ann Intern Med 1996; 124(10):919-921.

Street RL, Voigt B. "Patient Participation in Deciding Breast Cancer Treatment and Subsequent Quality of Life." Med Decis Making 1997; 17:298-306.

Teno JM, Hakim RB, Knaus WA, et al. "Preferences for Cardiopulmonary Resuscitation; Physician-Patient Agreement and Hospital Resource Use. The SUPPORT Investigators." J Gen Intern Med 1995; 10(4):179-86.

Wagner EH, Barrett P, Barry MJ, Barlow W, Fowler FJ. "The Effect of a Shared Decision Making Program on Rates of Surgery for Benign Prostatic Hyperplasia; Pilot Results. Med Care 1995; 33:765-770.

Wennberg J (Producer). Treatment Choices for Prostate Cancer [Film]. Hanover, NH: Foundation for Informed Decision Making, 1995.

Wu WC, Pearlman RA. "Consent in Medical Decision-Making: The Role of Communication." J Gen Intern Med 1988; 3:9-14.

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Last Revised: Thursday, June 25, 1998

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