Robyn Shapiro

What should be the role of an institutional ethics committee in resolving conflict concerning patient care decisions in the neonatal intensive care unit? This question takes on added importance in light of recent court decisions which suggest that IEC deliberations may serve as persuasive evidence in court, of proposed state regulations that would establish an IEC as an alternative to judicial review, and of recent Joint Commission on Accreditation of Healthcare Organizations guidelines that require an institutional policy on limitation or withdrawal of treatment to include a specified mechanism for resolving conflict. Unfortunately, despite these developments, prospective case consultation remains one of the most controversial and poorly understood aspects of IEC functions. Questions and concerns persist about the relation the IEC has and should have to actual decisions in specific cases.We briefly examine the clinical, organizational, and regulatory complexity of the NICU environment and suggest five potential sources of uncertainty, disagreement, and conflict among parent and NICU staff.

What should be the role of an institutional ethics committee in resolving conflict concerning patient care decisions in the neonatal intensive care unit? This question takes on added importance in light of recent court decisions which suggest that IEC deliberations may serve as persuasive evidence in court, of proposed state regulations that would establish an IEC as an alternative to judicial review, and of recent Joint Commission on Accreditation of Healthcare Organizations guidelines that require an institutional policy on limitation or withdrawal of treatment to include a specified mechanism for resolving conflict. Unfortunately, despite these developments, prospective case consultation remains one of the most controversial and poorly understood aspects of IEC functions. Questions and concerns persist about the relation the IEC has and should have to actual decisions in specific cases.We briefly examine the clinical, organizational, and regulatory complexity of the NICU environment and suggest five potential sources of uncertainty, disagreement, and conflict among parent and NICU staff.

I review the recent case of Edna Folz, a 73 year-old woman who was suffering through the end stages of very advanced Alzheimer's dementia when her case was adjudicated by the Wisconsin Supreme Court. I consider this case as an example of how courts are increasingly misinterpreting the ethical and legal decision-making standards known as substituted judgment and best interests and thereby threatening individuals' treatment decision-making rights as developed by other courts over the past two decades and creating serious roadblocks to health-care providers' ability to render appropriate patient care. The Wisconsin Supreme Court held that Edna's legal guardian could not authorize withdrawal of Edna's treatment, ruling that as a matter of law, if an incompetent person is not in a persistent vegetative state, it is not in his or her best interests for life-sustaining treatment to be withdrawn unless (s)he has executed an advance directive or other statement clearly indicating his or her desires.

Recent studies have exposed the startling inadequacy of health care providers knowledge about and practice of effective pain management. For example, in one study, it was reported that 79 percent of a random sample of 454 medical-surgical inpatients experienced pain during hospitalization, and that 58 percent of patients with pain considered the pain horrible or excruciating. In another study, 67 percent of 2,415 randomly selected hospitalized patients had pain during the twenty-four hours prior to being interviewed, and 50 percent reported pain at the time of the interview. In a study of seriously ill hospitalized patients reported in 1996, half of the patients complained of pain, and one-sixth reported that they experienced extremely severe pain at least half the time. According to one literature review, 75 percent of cancer patients have reported suffering pain, and one study estimates that 25 percent of cancer patients die with severe unrelieved pain. Chronic nonmalignant pain has been described as an extremely prevalent problem, and over two-thirds of nursing home residents experience serious pain.

Recent studies have exposed the startling inadequacy of health care providers knowledge about and practice of effective pain management. For example, in one study, it was reported that 79 percent of a random sample of 454 medical-surgical inpatients experienced pain during hospitalization, and that 58 percent of patients with pain considered the pain horrible or excruciating. In another study, 67 percent of 2,415 randomly selected hospitalized patients had pain during the twenty-four hours prior to being interviewed, and 50 percent reported pain at the time of the interview. In a study of seriously ill hospitalized patients reported in 1996, half of the patients complained of pain, and one-sixth reported that they experienced extremely severe pain at least half the time. According to one literature review, 75 percent of cancer patients have reported suffering pain, and one study estimates that 25 percent of cancer patients die with severe unrelieved pain. Chronic nonmalignant pain has been described as an extremely prevalent problem, and over two-thirds of nursing home residents experience serious pain.

Over the past two decades ethics committees have proliferated in healthcare institutions across the country. Catalysts for this growth include the endorsement of ethics committees by the New Jersey Supreme Court in the Quinlan case, by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical Research in its report entitled Deciding to Forgo Life Sustaining Medical Treatment, by the U.S. Department of Health and Human Services in its 1985 “Baby Doe” regulations, by numerous other courts in treatment decisionmaking opinions issued after Quinlan, and more recently by the Joint Commission on Accreditation of Healthcare Organizations

For over a decade, managed care has profoundly altered how healthcare is delivered in the United States. There have been concerns that the patient-physician relationship may be undermined by various aspects of managed care, such as restrictions on physician choice, productivity requirements that limit the time physicians may spend with patients, and the use of compensation formulas that reward physicians for healthcare dollars not spent. We have previously published data on the effects of managed care on the physician-patient relationship from the physician's perspective. In 1999, we collected data on the impact of managed care arrangements on the physician-patient relationship from the patient's perspective. This article discusses our collective findings

Over the past several years, healthcare has been profoundly altered by the growth of managed care. Because managed care integrates the financing and delivery of healthcare services, it dramatically alters the roles and relationships among providers, payers, and patients. While analysis of this change has focused on whether and how managed care can control costs, an increasingly important concern among healthcare providers and recipients is the impact of managed care on the physicianpatient relationship, but little data have been collected and analyzed. We designed a survey for distribution to Wisconsin physicians to analyze the prevalence and types of managed care arrangements in the state, and the impact of these arrangements on physicians and their relationships with patients

The Patient Self-Determination Act imposes new requirements on health care providers for informing patients of their rights to make decisions concerning their medical care. The Act is intended to, and is likely to, encourage patients and residents of certain healhtcare facilities to consider their treatment preferences in advance of incapacity and, in particular, to determine the circumstances in which life-sustaining treatment will be provided to them. However, many questions concerning how healthcare providers will implement the Act remain unanswered