Nancy Neveloff Dubler

Definitive Care for the Critically Ill During a Disaster: A Framework for Allocation of Scarce Resources in Mass Critical Care: From a Task Force for Mass Critical Care Summit Meeting, January 26–27, 2007, Chicago, IL

BACKGROUNDnAnticipated circumstances during the next severe influenza pandemic highlight the insufficiency of staff and equipment to meet the needs of all critically ill victims. It is plausible that an entire country could face simultaneous limitations, resulting in severe shortages of critical care resources to the point where patients could no longer receive all of the care that would usually be required and expected. There may even be such resource shortfalls that some patients would not be able to access even the most basic of life-sustaining interventions. Rationing of critical care in this circumstance would be difficult, yet may be unavoidable. Without planning, the provision of care would assuredly be chaotic, inequitable, and unfair. The Task Force for Mass Critical Care Working Group met in Chicago in January 2007 to proactively suggest guidance for allocating scarce critical care resources.nnnTASK FORCE SUGGESTIONSnIn order to allocate critical care resources when systems are overwhelmed, the Task Force for Mass Critical Care Working Group suggests the following: (1) an equitable triage process utilizing the Sequential Organ Failure Assessment scoring system; (2) the concept of triage by a senior clinician(s) without direct clinical obligation, and a support system to implement and manage the triage process; (3) legal and ethical constructs underpinning the allocation of scarce resources; and (4) a mechanism for rapid revision of the triage process as further disaster experiences, research, planning, and modeling come to light.

Clinical research in senile dementia of the Alzheimer type: suggested guidelines addressing the ethical and legal issues.

In November 1981, the National Institute on Aging (NIA) sponsored a conference on “Senile Dementia of the Alzheimer’s Type (SDAT) and Related Diseases: Ethical and Legal Issues Related to Informed Consent.” The conference was convened to explore the values, conflicts, and competing interests that must be accommodated if research on the pathophysiologic processes and psychosocial aspects of dementia is to continue.

The Collision of Confinement and Care: End‐of‐Life Care in Prisons and Jails

n 1997, the United States incarcerated over 1.7 million persons in local jails and in state and federal prisI ons.’ These inmates are disproportionately poor and persons of color. Many lack adequate access to health care before incarceration and present to correctional services with major unaddressed medical problems. Convictions for drug possession and use have increased the number of injection drug users with HIV and AIDS in prisons. Determinate sentencing and “three strikes and you’re out” laws have increased the number of inmates who are aging and dying during their sentences. Their feelings reflect those of Larry Rideau, sentenced to life without parole and founder of The Angolite-an award-winning prison newspaper at Louisiana’s Angola Prison-“The dream of getting out, you equate with heaven. Dying in prison you equate with hell.”2 In the world outside the walls of correctional institutions, the last decade has seen substantial progress in accommodating the needs and wants of dying patients and their loved ones. Physicians, nurses, and social workers have enhanced their communication skills, facilitating open and honest discussion about diagnoses and prognoses even when the choices are difficult and the future dim. The use of advance directives permits decisionally capacitated patients to make present choices, including the appointment of health care agents to control their care in the future when they are no longer able to participate in decision making. The needs of dying patients for analgesia, physical comfort, and spiritual support are increasingly met by practices that reflect the evolution of hospice and palliative care. Protocols for addressing pain and relieving suffering are proliferating. Research on the dying process pro-

Pain: Ethics, Culture, and Informed Consent to Relief

s medical technology becomes more sophisticated, the ability to manipulate nature and manage disA ease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman-the relief of pain. Even when cure is impossible, the physician’s duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries. Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease. The multiplicity of factors that influence the perception and expression of pain take on special importance in the health care setting, where pain becomes an interpersonal experience between the sufferer and the reliever. How pain is signified by the patient and understood by the provider determines in large measure how it is valued and, ultimately, how it is treattd. If the perception of and response to pain are to be understood in a useful way, they must be examined in the context of culture, gender, imbalances of power, morality, and myth. This paper will not address the anthropological dimensions of pain-how patients of different cultural and ethnic backgrounds experience and express pain.’ Rather, we focus on professional attitudes toward pain management, and we suggest there is a moral imperative for re-

Clinical Research in Senile Dementia of the Alzheimer’s Type

In November 1981, the National Institute on Aging (NIA) sponsored a conference on “Senile Dementia of the Alzheimer’s Type (SDAT) and Related Diseases: Ethical and Legal Issues Related to Informed Consent.” The conference was convened to explore the values, conflicts, and competing interests that must be accommodated if research on the pathophysiologic processes and psychosocial aspects of dementia is to continue.

Legal judgments and informed consent in geriatric research.

he doctrine of informed consent has been explored, expanded, and honed over the last two decades in judicial opinions, state statT utes, state and federal regulations, ethical analyses, and legal commentaries. Informed consent is the legal principle that, at least in theory, governs the patient’s acceptance or rejection of individual medical interventions designed to diagnose or treat an illness; it is also the doctrine that determines and regulates participation in research. The Code of Federal Regulations states, in the section on general requirements for the Protection of Human Subjects, that the “legally effective informed consent of the subject or the subject’s legally authorized representative” is a precondition to research. The primary task for this comment is to explore the concept of “legally effective” informed consent as the phrase may have specific applicability to research involving elderly subjects. A secondary task is to determine who may and does function as a “legally authorized representative.”* Potential research subjects who are elderly are of two sorts. First are those persons who are chronologically advanced in life’s predetermined span of years, but who are otherwise vigorous, independent, and autonomous adults. Except for the public policy implications of research on this class of person (an issue discussed briefly below), there are no logically compelling reasons for distinguishing these adult persons from those ten or even 30 years their junior. For these

Credentialing Ethics Consultants: An Invitation to Collaboration

The article by Fox et al. (2007) marks an important moment in the history of clinical ethics consultation. It documents what we in the field all know anecdotally: clinical ethics consultation has been expanding exponentially in medical centers nation wide. Whether this development is a benefit to patients and families or adds to the net burdens of their interaction with the healthcare system, depends on several factors: the quality of the ethics consultation service (ECS), the ability of the consultants to incorporate relevant substantive ethical and legal principles into difficult discussions, and the skill of consultants in using a process that shields patients and family members from the juggernaut of medicine and helps them to level the playing field of discussion. If successful, consultants should manage to forge some sort of consensus about previously contested matters, a consensus that facilitates care and that reflects both the wishes of the patient and family and the patient’s best medical interest. Note the following findings from the article about clinical ethics consultation and clinical ethics consultants:

Clinical and Epidemiologic Research on HIV Infection and AIDS Among Correctional Inmates

A long history of abuse led the U.S. government, in 1983, to promulgate extremely stringent regulations regarding use of prisoners in biomedical and behavioral research. These regulations have virtually eliminated such research among prisoners. The HIV epidemic has brought these issues alive again in a new light. Over 5,000 cases of AIDS have been reported among U.S. correctional inmates. Yet prisoners have been virtually excluded from clinical trials of experimental HIV therapces. This article reviews two major types of HIV-related research among prisoners: (a) blinded epidemiologic studies of HIV seroprevalence and transmission based on antibody tests, and (b) participation of prisoners in clinical trials of HIV therapies. The authors argue that epidemiologic studies produce sufficiently useful information to be permitted subject to Institutional Review Board approval and with careful attention to confidentiality protections. With regard to clinical trials, the article contends that prisoners should have access to Phase II and III (efficacy) trials without placebo arms, but should not be permitted to participate in Phase I (safety) trials. The argument is that, although there are serious concerns regarding confiden tiality and potential discrimination, prisoners should have the right to make their own decisions about participation in trials. It is indefensible to deny them opportunities to receive potentially efficacious medications.

The Dependent Elderly: Legal Rights and Responsibilities in Agent Custody

Individuals who have reached the age of majority are permitted a wide range of choice in American society. They may choose where or whether to work, with whom to associate, and how to pattern and place their lives. These decisions may be wise or foolish; they may enhance the quality of life or put existence itself at risk. These individual decisions and actions may encroach upon the lives of others, in violation of civil or criminal law, and thus be subject to fine or punishment. They may fall within the standard for civil commitment — exhibiting a danger to self or others — and invite involuntary restraint. Absent such circumstances, however, individual choice is largely unregulated and unsupervised.

SELF-REPORTED LEGAL NEEDS OF WOMEN WITH OR AT RISK FOR HIV INFECTION

Women at risk for human immunodeficiency virus (HIV) infection are often poor and members of racial or ethnic minorities. In addition to legal concerns that might be common among persons with similar sociodemographic characteristics, HIV infection adds the potential of possible stigma and discrimination, as well as the prospect of illness and increased mortality. To determine womens perceptions of need for and access to legal services and whether such perceptions are affected by HIV infection, from November 1993 through September 1995 we interviewed 509 women with or at risk for HIV infection by virtue of injection drug use or high-risk sexual behaviors in New York and Baltimore, Maryland. A majority of women, regardless of HIV serostatus, reported current or future needs for legal assistance with government benefits. More than 25% reported needing current or future legal help with housing, debts, arrangements for care of children, a will, and advance directives. Substantial minorities of women reported other legal needs. HIV-positive women were significantly more likely to report anticipated future need for help with paternal custody or visitation, current need in making a will, and anticipated future assistance with advance directives. For most items, a majority of women thought they knew where to receive help. However, among women reporting a current need, only a minority actually were receiving legal assistance. This study suggests that the extent of legal needs among women with or at risk for HIV infection is substantial, and that few receive legal assistance. With few exceptions, at least for women early in the course of illness, HIV infection does not appear to alter the pattern or extent of legal needs. There are dramatic differences, regardless of HIV status, between expectation and reality in womens access to legal services.