American Journal of Law & Medicine

Patient accountability and quality of care: lessons from medical consumerism and the patients' rights, women's health and disability rights movements. (Quality of Care and Health Reform: Complementary or Conflicting)

I. THE QUALITY OF CARE PARADIGM

This article contrasts the prevailing model for assessing and improving medical care--the quality of care paradigm--with an alternative approach--the patient accountability paradigm. The first approach is technocratic: it measures and promotes the quality of medical care through technical and objective means. It relies on outside experts, analysis of data and protocols, and impersonal judgements of professionals to guide decisions. The second approach guides physicians and providers and subjects them to patient control. It enlists the participation of patients and consumers to evaluate and change the medical care system and to promote the rights and choices of patients and consumers. The strengths and limitations of the patient accountability approach are illustrated by four movements: 1) the patients' rights movement; 2) medical consumerism; 3) the women's health movement; and 4) the disability rights movement.

Our medical care system still pays homage to the ideals of accountability to patients and consumers. However, it often treats this goal as an old-fashioned idea -- one that can be safely dispensed with in favor of fostering quality assurance by improved design of medical systems, professional and peer review and decision-making by experts. This is a flaw: for despite the importance of technical measures of quality, it slights the considerable complementary contributions of the accountability approach. The challenge for the future is to incorporate accountability to patients and consumers of health care into an assessment system that is currently technocratic.

Over the past quarter century the U.S. has made great strides in improving the practice of medicine and developing ways to assess and promote quality of medical care.(1) Quality assurance is now a growth industry and an academic specialization with its own journals.(2) The wide variety of methods to assure the quality of medical care range from formal monitoring of conduct, review of medical records, and regulatory sanctions to the promotion of continuing education, recertification, and a philosophy of continuous quality improvement.(3) More specific methods include accreditation, licensure or certification of professionals and medical care institutions; patient care guidelines and protocols for medical treatment; systems that prompt physicians and other medical care providers to check for certain problems or justify decisions; analysis of physician and institution performance by assessing how frequently particular services are used and the mortality, morbidity and complication rates for various kinds of medical procedures; patient assessment of medical care received; measures of patient health status; and clinical indicators for quality problems.(4)

Avedis Donabedian has summed up the three main ways to assess quality of care; these examine: 1) medical structures, characteristics of the medical resources and the training of medical personnel; 2) medical processes, which include the activities and services performed for patients; and 3) medical outcomes, the resulting health status of patients.(5) In the past, quality assurance programs emphasized structures; the push today is to assess health outcomes and to develop processes that promote professional learning and ongoing improvements.(6)

Most quality assurance programs attempt to assess the performance of hospitals, doctors and other medical care providers by detecting poor technical quality or over-or under- use of services. Reviewers assess performance by analyzing medical records or data on patient care from hospital discharge statements or bills.(7)

There are several ways for institutions to promote quality of care. They can sanction providers of poor quality of care, deny payment for services performed unnecessarily, or avoid using the providers' services in the future. They can also target poor quality providers for education or training or use financial incentives to reward improvements in performance.(8)

Although quality assessors and reviewers are nominally outsiders, they have the perspective of medical professionals. They work in organizations using standards and approaches that have grown out of medical peer review. Judgements about what constitutes quality are drawn from existing professional knowledge and opinion as well as studies measuring outcomes.

Most quality assurance measures are tools used to benefit patients; tools typically under the control of health care professionals, third-party payers, or institutional providers. Though these measures of quality are important, they are narrow. Quality assurance programs have typically drawn on the perspectives and points of view of professionals rather than the people who receive the medical care.

Even with the more recent efforts to use patient surveys and other approaches that incorporate the perspectives of patients, professional values nevertheless largely drive quality assurance programs. The recommendations of an Institute of Medicine task force illustrate the tension between perspectives of patients and professionals. The recommendations say that: a successful [quality assurance] program must be accepted by the professionals and organizations in which it is embedded or to which it is directed... This implies that judgements about care and recommendations about change in practice are made by peers.(9)

The predominance of professional control is underscored in another passage, which states that: "no quality assurance program should jeopardize the relationship of trust or the ability of the practitioner to use his or her best judgement to guide the care of the patient."(10)

Viable quality assurance programs clearly need the active education and involvement of doctors and other professionals, for changes resisted by doctors may not be implemented. However, the perceptions of patients may differ from that of professionals.(11) Moreover, physicians and other providers have conflicts of interest.(12) Limitations therefore exist in the likely changes expected from quality assurance programs. With this in mind, let us examine another paradigm for improving medical care.

II. THE PATIENT ACCOUNTABILITY PARADIGM

By tradition and medical ethics, doctors are expected to work in the interest of their patients. This commitment is so fundamental that it is rarely questioned. Indeed, codes of medical ethics often remind doctors to place the interest of their patients before any other interests.(13) Physicians' proclaimed responsibilities to patients are appropriate, given that the roles doctors perform are similar to those of traditional fiduciaries, individuals the law requires to be loyal to designated parties and holds to the highest standards of ethical conduct. Doctors advise patients as to what medical care they need. They make decisions on behalf of patients. And through their decisions and advice, they control, in effect, the use of patients' money.(14)

Despite the strong tradition of medical ethics which encourages doctors to act in the interest of patients (or perhaps because of it), institutional and legal means to hold doctors accountable to patients have been relatively weak. Physicians, like other professionals, have conflicts of interest and sometimes breach their fiduciary-like obligations.(15) Moreover, many institutions hold doctors accountable to third-party payers, medical providers and medical suppliers. There has been very little, however, in the way of regulatory or other institutional mechanisms to hold doctors accountable to patients.(16)

However, there are at least two ways in which political movements have helped to redress this imbalance. These are promoting the use of voice -- that is, consumers and patients voicing their complaints, grievances, and protests, and forming associations to promote their interests -- and exit, that is, consumers exiting from the organization or purchasing medical services elsewhere.(17)

Four examples are the movements involving: 1) patients' rights; 2) medical consumerism; 3) women's health; and 4) disability rights. Each of these efforts have fostered the ideal of serving patients, promoting autonomy, and promoting a more responsible and humane health care system. And each of them has had limited success.

A. THE PATIENTS' RIGHTS MOVEMENT

Until very recently, medical professionals interpreted the ethical injunction to work in the interest of patients to mean that they should make decisions for patients. Physicians generally assumed that medicine was primarily a science, that doctors were experts who would know better than patients what was in their interest, and that patients had neither the interest in becoming involved in medical decision-making nor the ability to do so. Doctors promoted benign paternalism.

But practice did not always live up to ideals and patients were often denied basic human rights. The hospital, in the words of George Annas, was "a human rights waste land."(18) The most shocking abuses involved dangerous medical experimentation on human subjects, without their consent, experimentation that offered no possible therapeutic benefit.(19) But even in the course of ordinary medical treatment, physicians frequently did not consult with patients about important choices concerning their medical treatment.(20)

Most hospitals still do not let patients see their records, or they make it difficult for them to do so.(21) They are also reluctant to explain the records' contents. Without this information, patients are less able to participate in medical decision-making, and errors that patients can correct may creep into records. In addition, many hospitals have not respected the confidentiality of patient information and have widely allowed access to personal information.(22) Also, doctors often do not inform patients of their prognosis especially when the chance of survival is bleak.(23) And only after years of litigation have the physicians come to respect the right of patients to refuse life-sustaining medical treatment.(24) Many patients still are not told that medical students are examining them or that residents and interns will perform their surgery under the supervision of a doctor. And patients are still often subject to exams, tests and procedures for the benefit of teaching medical students.

The organization of hospitals also undermines important patient interests.(25) Patients lose control over their time, sleep schedule, choice of clothes, privacy, food selection, and contact with family and friends. They share rooms with strangers and may have to listen to their conversation or television; they also have their own conversations with families and doctors overheard by other patients and medical personnel.

Starting in the 1950s, patients used the courts to seriously challenge medical paternalism.(26) The first inroads came in cases that developed the law of informed consent.(27) The early cases appear shocking to us now. One physician told a woman he would only repair a few cervical and rectal tears but instead removed her ovaries and uterus.(28) Another surgeon removed a woman's fibroid tumor after she had insisted that there be no operation but had given him permission to examine her under ether.(29) Still another surgeon, when asked about the risks in proposed surgery, had told the patient that it was simple and there was "nothing to it." The patient's left hand became paralyzed.(30)

In three celebrated cases the courts developed the principle that doctors must inform patients of the risk and benefits of medical care.(31) Traditional medical malpractice suits were premised on doctors negligently performing medical diagnosis or treatment. Informed consent suits, on the other hand, looked only to whether doctors had informed patients of the risks and benefits of treatments and alternatives, and received the consent of patients to undertake medical treatment. The legal premise was that patients were the ultimate decision-makers and that doctors acted as their agents. This assumption clashed with much of common medical practice as well as the traditions of medicine.

Probably more than any other doctrine, informed consent spurred the idea that doctors should promote patient autonomy and that they should share medical decision-making with patients. …

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