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- PACIFIC CENTER FOR HEALTH POLICY AND ETHICS
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- PATIENT SELF-DETERMINATION ACT (PSDA) INFORMATION
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The mission of the Pacific Center is to enhance the quality of the healthcare system by focusing attention on the ethical dimensions of health care, biomedical research, and medical education.
Pacific Center Areas of Focus
Mr. Wilson, an elderly gentleman, residing in the Northeast, is confused. As a patient at Mercy Hospital, he was given a booklet explaining his right to make decisions about his health care. After being transferred to a skilled nursing facility, he received a different booklet on the same subject. When he later entered a hospice near his home, he was given yet another booklet which seemed to have some inconsistent information.
Mr. Wilson would not have been confused in California. In this state, at whatever point patients enter the healthcare system, they are given the same easily understandable booklet describing a patient's right. This simple but important breakthrough came about largely through the efforts of the Pacific Center.
Recognizing the importance of developing consistent, uniform and accurate information in response to the Patient Self-Determination Act (PSDA), adopted by the U.S. Congress in 1990, the Center convened the significant players in the healthcare system to formulate an implementation strategy for California. The California Consortium on Patient Self-Determination, composed of 25 groups representing key healthcare providers, consumers, bioethicists and state government health officials, was praised by Senator John Danforth (R-MO), author of the Act, for setting "an excellent example for the rest of the country" and for mounting the most comprehensive response to the new federal law.
In addition to organizing the Consortium, the Pacific Center became the main resource in Southern California for materials such as the state-adopted brochure on patient rights, which it had translated into eleven languages. By providing training, consultation, and model materials, the Center also assists providers locally and nationally to implement the new federal law. The Pacific Center recognizes that finding solutions to the complex ethical issues arising from health care today will require close cooperation among the various interest groups that have a stake in the outcome. The Center is committed to providing leadership in building new coalitions and making available to them a full range of interdisciplinary resources.
A staff member of the Pacific Center is not at her desk today. Instead, she is portraying the mother of a permanently comatose ICU patient in a mock "Ethics Committee" at USC School of Medicine. The goal os this session is to portray how a hospital ethics committee can help resolve a dispute between possible surrogate decisionmakers for a patient whose exact wishes are not known.
The mock ethics committee is one of several case studies that enliven "The Physician in Society," and intensive, week-long course required for all fourth-year USC medical students. This course-the capstone of a series of courses required during all four years at USC-is intended to illustrate the ways in which ongoing developments in the practice of medicine confront physicians with ethical issues.
Staff of the Pacific Center teach these and several other core courses at the USC School of Medicine. Beyond individual courses, the Pacific Center Faculty Council is developing a Master's degree program in Health Care Ethics at USC. Additionally, by organizing and sponsoring a variety of national symposia and conferences, the Pacific Center plays a significant role in bringing together the major players in health policy and ethics while also advancing the level of discussion and understanding among practitioners and the general public.
An example is the annual "Frontiers of Healthcare Ethics" conference series, supported by the UniHealth Foundation. The first conferences, "Families by Design" Implications of Reproductive Technologies for Healthcare Providers in the 1990's," and "Charting the Genome: Implications of Genetic Technology for Healthcare Providers in the 1990's," have addressed the medical, ethical and legal aspects surrounding two pivotal issues of our time. Future conferences will examine the topics of practice guidelines for physicians and the medical and ethical issues involved in pain management.
- To provide original research on health policy and ethical issues
- To improve health policy decisionmaking by building coalitions among groups who have a stake in the outcome
- To serve as a consultant to individuals, corporations, foundations and governments on health issues that have an ethical impact
- To educate healthcare professionals and students, patients and their families, legal practitioners and legislators through classes, publications, and national conferences
Areas of Concern
- Access to health care
- Cultural issues in health care
- Death, dying and palliative care
- Ethical dilemmas of new technologies
- Ethical issues in managed care
- Human gene therapy
- Patient rights and informed consent
- Reproductive technology
- Uses of genetic information
A conversation between two friends, Alice Stewart and Ramona Hernandez, revealed that Ms. Stewart had recently signed a Durable Power of Attorney for Health Care, naming her daughter Sally as her agent to make medical decisions for her if she became unable to make them herself. Ms Hernandez responded, "That would not be possible in my family. I could never choose one of my children over another. They would all want to be consulted and to share in any decisions, as I would want them to."
A recent research project on ethnicity and attitudes toward advance directives grew out of a pragmatic need at the hospital level as healthcare workers experienced conversations with patients similar to the one above. Increased in interest among healthcare providers in advance directives-such as living wills and durable powers of attorney for health care- reflects the belief that individuals want to retain control over their medical treatment even if they lose the capacity to make decisions and that they are willing to name one person to act in their behalf. However, family decisionmaking may be of greater importance in some ethnic groups than individual autonomy. Pacific Center researchers studied attitudes toward medical care and advance directives among the four largest ethnic groups in Los Angeles. This research was intended to correct the imbalance of past research efforts that focused largely on white, middle class populations.
Results of this study have helped healthcare providers-such as hospitals, nursing homes, and hospices-which are now required to provide patients with information concerning medical decisionmaking and advance directives. These groups are now able to use study results to design methods of informing patients of their choices that are consistent with each patient's cultural traditions and values.
Several years ago, a New Hampshire family lost their health insurance because two of their children were identified to have fragile-X syndrome, a genetic disease. The family was also told that if the insurer had known of the presence of fragile-X syndrome before, it would never have issued the policy.
Currently, researchers around the world are working to "map" and "sequence" the estimated 100,000 human genes. In the long term, this effort will contribute greatly to understanding, treating, and possibly correcting genetic diseases. However, another consequence of mapping our genetic structure will be the potential to screen populations to identify those at risk of developing genetic diseases. The question is then raised, will those so identified-like the family cited above-lose their health insurance and with it, their access to the health care they will need?
The Pacific Center's five-year Insurance Project examined how increased genetic screening capabilities will affect the availability of health, life and disability insurance. The Pacific Center assembled a research team of experts from the fields of ethics, law, medicine, genetics, and business economics as well as insurance industry executives to study this issue in depth and to make public policy recommendations. By addressing the topic now, before widespread genetic screening and diagnosis begins, the likelihood of developing equitable insurance rules and public policy is enhanced.
These two research projects exemplify a key objective of the Pacific Center: to sponsor and facilitate original research in health policy and ethics that will help policy experts create well-thought-out and practical public policies and legislation. The Center's research will also provide valuable information for use by a broad spectrum of healthcare professionals and institutions.
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