Patient Rights vs. Distributive Justice
The right of the patient to direct his or her medical care and health outcome, known as patient autonomy, and the right of society to control and allocate "limited resources", known as distributive justice will certainly collide. In an ideal world, or in an egalitarian society all individuals would have access to healthcare.
The U.S. health system now takes into account the imperatives of corporate management, shareholders, and the investment community in addition to the patient's interests. In past articles I have briefly mentioned the PSDA (Patient Self Determination Act) and other Advance Care Directives. The real question is: are they binding and if so upon whom? In March 1999 the AMA 's (American Medical Association) Council on Ethical and Judicial Affairs published a paper in an attempt to resolve conflicts. There were 5 items but 2 and 3 are really eye opening. They stated, "Patients and surrogates should be made aware that physicians are under no obligation to provide futile care. Futile or medically inappropriate care should not be offered 'theoretically' with the expectation that it will be refused". That means that Advance Directives have no legal force at all, and patients, families and care givers would be wasting their time and causing emotional grief to no avail since wishes do not have the force of law.
In the past, those who provided health care were presumed to be governed by beliefs in a set of ethical and social responsibilities that took precedence over economic concerns. This is no longer true. According to Hiller (1986), six ethical principles are relevant for health care leaders. They are: beneficence, non-malfeasance, respect for persons, justice, utility and truth telling. This is all very theoretical. In the real world patients and their families have no idea what really determines outcomes. Adding to the complexity of end-of-life issues, some authors writing on bioethics have suggested and argued forcefully that, if there is little chance for recovery, the physicians may refuse to deliver life-sustaining care, even if requested by patients or surrogates. What is a patient to do? The ideal answer is to trust one's physician. In the absence of this a family member or surrogate could be enlisted to enforce the patient's wishes but thorny problems can arise.
The American system relies heavily on the substituted judgment standard. The system, which is about 15 years old, seeks to identify a surrogate to make the decision that the patient would have made - putting oneself in the patient's shoes as it were. It relies and falls on the premises that the surrogate knows something of the patient's preferences. Many studies have demonstrated the inability of family members or others to predict the wishes of the patients. Even patients themselves who complete advance directives when healthy, are very likely to change their minds later, due to what Rebecca Dresser has called "the Metaphysical Objection to Advance Directives." She argues that it is important for the patients completing advance directives to understand the medical circumstances to which they might later be subject. She says, "Such understanding is important not to ensure the autonomy of the decision maker but to ensure the autonomy of the incapacitated person. Legally these two persons are the same (e.g. both Michael Martin), but they are very different 'selves' (e.g. Michael Martin before and Michael Martin after the accident). The radical differences in values, attitudes, and similar attributes which individuals often undergo when they become incompetent make the person at the later point in time a different person." In other words, the person who wrote the advance directive is a different "person" from the incompetent person bound by it. The person actually facing death is not the same person as before. This theory does not fit neatly with the way Western law treats individuals. Dresser calls this "hard paternalism." And asks, "the later self's best interests are defined by that individual in an earlier point in time, rather than by another party. Ought this to be sufficient to remove the ethical and legal concerns paternalism elicits?" Healthy people might not think that expensive wheelchairs and portable ventilators were important, because they felt that the disabled quality of life was very low and could not be significantly raised. Nevertheless, not surprisingly, once patients became ill, they were far more likely to prefer a longer life with a disability than a short one without it. Most persons completing advance directives underestimate the quality of life with disability because individuals adapt to their disabilities. The real problem is that individuals are making decisions for their future selves that those future selves would not want made.
This week a startling report surfaced called "To err is Human" This 200+ page book lays out a comprehensive strategy for government, industry, consumers, and health providers to reduce medical errors, and it calls on Congress to create a national patient safety center to develop new tools and systems needed to address persistent problems. I spoke with one of the committee members Dr. Joseph Scherger, Associate Dean for Clinical Affairs, University of California at Irvine College of Medicine. He said," Hospitals are dangerous places and patients need advocates every step of the way." That struck me as quite an admission. One major study found that medical errors kill about 44,000 people a year in hospitals. Another puts the number much higher at 98,000. This may be the tip of the iceberg due to all the incidents that were not reported. Even using the lower estimate, more people die from medical mistakes each year than from highway accidents, breast cancer, or AIDS. Patients in the hospital now are kind of edgy. The headlines created by this study are making them nervous. Who would blame them? The doctors are trying to blame the nurses who in turn are trying to blame others, and round and round it goes. The press release from the National Academy of Sciences and The Institute of Medicine who published the report states "These stunningly high rates of medical errors - resulting in deaths, permanent disability, and unnecessary suffering - are simply unacceptable in a medical system that promises first to 'do no harm.'
Managed care news from the Web
1) Should physician entrepreneurs be held to professional standards? This is about Dr.Koop Surgeon General retired and Dr. Koop.com.
2) Aetna may adopt United Health's model to give doctors more say on treatment (Wall St. Journal)
3) Lawyer seeks public support for settlement with HMO's (Wall St. Journal) High profile lawyer Richard Scruggs has been trying to drum up interest in filing class actions suits against HMO's. He is the lawyer in the tobacco litigation.
4) Providers leaving Aetna, voicing dissatisfaction. (Philadelphia Inquirer) Hospitals and doctor groups scattered around the country have walked away from millions of dollars in patient revenues from Aetna U.S. Healthcare in a series of unusually public rifts with the managed-care insurer.
5) Emboldened by a 'guild,' therapists to abandon managed care. Four years ago a group of Connecticut psychotherapists made the riskiest move of their careers. They severed ties with most insurance companies and formed an alliance of independent practitioners.
6) Feds pile on healthcare bankrupts - Reduced federal government reimbursements have forced a number of healthcare companies to enter bankruptcy this year
7) Pharmabid.com auctions blood, plasma, and medical products on Web (APW Boston.com) Orange, Calif. Hospitals needing blood plasma or syringes have a new source: an online auction where supplies ranging from vaccines to rubber gloves are sold to the highest bidder.
What is a "Hospitalist"?
A hospitalist is a physician who specializes in inpatient medicine. The New England Journal of Medicine in 1996 said that this specialty would burgeon for several reasons. First, because of "cost pressures, managed-care organizations will reward professionals who can provide efficient care." In the out patient setting, the premium on efficiency requires that the physician provide care for a large panel of patients and be available in the office to see them promptly as required. There is no greater barrier to efficiency in outpatient care than the need to go to the hospital to see an unpredictable number of inpatients. The hospitalist trend is already visible at both teaching and nonteaching hospitals in areas where managed care has taken root- almost everywhere. Internists' worst fears about the hospitalist movement appear to be coming true in south Florida.
According to the ACP-ASIM Observer May 1999 In February, Prudential HealthCare-South Florida told its 3,000 physicians that it would soon require them to transfer the acute care of their patients to hospitalists. Starting March 15, 1999 hospitalists began caring for Prudential members in nine hospitals and a dozen sub-acute facilities. The Prudential program is one of the country's most far-reaching efforts to use mandatory hospitalists-it could affect 230,000 patients in one geographical area. What ever happened to the doctor patient relationship through thick and thin? Many doctors were shocked by Prudential's news that they would have to hand over care of their hospitalized patients. "We think it's a further erosion of the patient-physician relationship and promotes the further isolation of the physician."
There are so many changes, almost daily that it is hard to keep up, but maybe we are moving to a better model for healthcare.