York State Task Force Research Articles

Is deliberative democracy possible during a pandemic? Reflections of a bioethicist.

In 1985, Governor Mario Cuomo established the New York State Task Force on Life and the Law to provide guidance on issues at the interface of medicine, ethics and the law. During its tenure, the Task Force has been the leading state-based commission in this space producing landmark reports on end-of-life care, physician-assisted suicide, genetic testing, newborn care, brain death, surrogate decision making, assisted reproduction, and ventilator allocation in pandemic flu. These documents have informed state policy, both regulatory and statutory, and had an outsized influence on policy deliberation nationwide. Despite this notable provenance, the Task Force was missing in action during the coronavirus disease 2019 (COVID-19) pandemic. Although individual members were sought for consultation, the Task Force as a whole did not meet during the entirety of the pandemic. This article will explore the consequences of this omission and argue that as a deliberative body, the Task Force should have been an essential component of statewide debate on questions of crisis standards of care, health equity, and vaccine allocation. The COVID-19 experience exposed weaknesses in New York's process of deliberative democracy in response to the pandemic. A state with a distinguished history in this interdisciplinary space was left behind with the views of important constituencies left unheard and communities unserved. Better apprehending how this abdication of responsibility occurred. (PsycInfo Database Record (c) 2021 APA, all rights reserved) Impact Statement This has public policy significiance as it can help prevent its recurrence in the future and lead to more trustworthy, inclusive and effective public health and health law governance. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

Disorders of Consciousness, Disability Rights and Triage During the COVID-19 Pandemic

As a member of the New York State Task Force on Life and the Law and the author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, the author draws upon his work as a clinical ethicist during the COVID-19 Spring surge in New York to analyze the impact of ventilator allocation guidelines proposed by the Task Force on people with disorders of consciousness. While a non-discriminatory methodology was intended by the Task Force, the author concludes that the guidelines would have discriminated against people with disorders of consciousness had they been promulgated. This was due to errors in exclusion criteria, the utilization of the Sequential Organ Failure Assessment (SOFA) score, and the Glasgow Coma Scale which assesses motor output and not consciousness. While allocation and triage decisions may be neccessary during a pandemic, the ethical integrity of these determinations depend upon proper metrics.

Clinical and Ethical Considerations in Allocation of Ventilators in an Influenza Pandemic or Other Public Health Disaster: A Comparison of the 2007 and 2015 New York State Ventilator Allocation Guidelines.

During an influenza or coronavirus disease 2019 (COVID-19) pandemic that results in acute respiratory distress, the number of available ventilators will not meet demand. In 2007, the New York State Task Force on Life and the Law and Department of Health released draft Guidelines for ethical allocation of ventilators for adults. In 2015, updated guidelines were released to ensure that: (1) revisions reflect the public's values and (2) the triage protocol is substantiated by evidence-based clinical data. We summarize the development and content of the 2015 Guidelines compared with the 2007 version, emphasizing new/revised aspects of the ethical considerations and clinical protocol. We compared the 2007 and 2015 guidelines, with particular emphasis on the ethical issues and clinical protocols. The 2015 Guidelines retained much of the ethical and clinical framework of the 2007 draft. The triage protocol was revised using evidence-based clinical data. Patients with the highest likelihood of short-term survival with ventilator therapy have priority access. Protocol consists of exclusion criteria, the sequential organ failure assessment (SOFA) score, and periodic clinical assessments. Guidance is provided on secondary triage criteria. Other forms of medical intervention/palliative care and review of triage decisions are discussed. The 2015 Guidelines reflect advances in medicine and societal values and provide an evidenced-based framework to save the most lives. The framework could be adapted in other emergencies, such as the COVID-19 pandemic, that require ventilators.

Pandemics, Protocols, and the Plague of Athens: Insights from Thucydides.

When confronted by the novel ethical challenges posed by a pandemic, it is helpful to turn to history for guidance and direction. In this essay, the author revisits Thucydides's description of the Plague of Athens from The Peloponnesian War as he considers the New York State Task Force on Life and the Law's 2015 guidelines on ventilator allocation. Confronted by the exigencies of the Covid-19 surge that struck New York, he questions the task force's decision not to give any degree of preference to health care workers who might become ill. He posits that they are due a compensatory ethic and some deference given the risks they have assumed, often with inadequate protective gear. Reflecting on his ambivalence, he asks if his change of heart reflects the impact of experiential learning or the erosion of nomos-or governing norms-described by Thucydides when the plague struck Athens.

Ventilators, Guidelines, Judgment, and Trust.

Covid‐19 confronts us with tragic choices, in which every option is unacceptable. On the New York State Task Force on Life and the Law, I worked on guidelines for such situations. We did not envision the scale or character of Covid‐19. To minimize fear that the decisions made in these situations might be unfair, we all must know what guidelines or mandates inform them. Only with transparency about how decisions will be made, by whom, and according to what requirements can we have confidence that fairness prevails. We now face many related questions about process, goals, leadership, and trust. For example, how might ethical guidelines evolve as scientific understanding advances? Should guidelines vary with different venues? And if, as I have argued, judgment is necessary even with the best of guidelines, how can we prepare clinicians to make good judgments? Are there implications for better training of personnel in nonemergency times for what they might face in the worst of times?

Defining embryo donation: an Ethics Committee opinion

Building families through the adoption of children has been supported by human society throughout history. The ethical appropriateness of patients donating embryos to other patients for family building, or for research, is well established and is affirmed by this Committee. The use of the term ''adoption'' for embryos is inaccurate and should be avoided. This document replaces the ASRM Ethics Committee statement by the same name, last published in 2013 (Fertil Steril 2013;99:1846-7).

Unique Proposals for Limiting Legal Liability and Encouraging Adherence to Ventilator Allocation Guidelines in an Influenza Pandemic

In a severe influenza pandemic, many more patients would require the use of mechanical ventilators than can be accommodated with current supplies. In order to proactively confront the rationing of resources in preparation for the possibility of severe ventilator scarcity, in 2007, the New York State Task Force on Life and the Law and the New York State Department of Health released a draft guidance document entitled Allocation of Ventilators in an Influenza Pandemic, laying out a comprehensive clinical and ethical framework to guide distribution of ventilators in the event of a severe public health emergency using objective medical criteria, with the ultimate goal of saving the most lives. However, adhering to the Guidelines – despite the significant public health goals contained therein – may expose health care providers and entities to considerable costs and burdens, including the risk of jail time and/or financial penalties, the time and costs of discovery and preparing a case, higher medical malpractice insurance rates, and damage to one’s reputation, unless proper and adequate legal protections are in place. This article addresses the issue of liability for health care workers and entities who adhere to the recommended clinical protocol contained in the Ventilator Guidelines while rendering care in a disaster emergency. We consider the “trigger” for implementing emergency plans – a declaration of a public health or disaster emergency, explore current federal and State law that might offer immunity, defense, or indemnification to certain individuals or entities who provide care in response to that declaration, and offer several unique alternative approaches to mitigate clinicians’ and other entities’ burdens in the event of a lawsuit. The article culminates in recommendations for legislation granting adequate civil and criminal liability protections to health care workers and entities who adhere to the State’s Ventilator Guidelines in a pandemic.

Allocation of Ventilators in a Public Health Disaster

In a public health emergency, many more patients could require mechanical ventilators than can be accommodated. To plan for such a crisis, the New York State Department of Health and the New York State Task Force on Life and the Law convened a workgroup to develop ethical and clinical guidelines for ventilator triage. The workgroup crafted an ethical framework including the following components: duty to care, duty to steward resources, duty to plan, distributive justice, and transparency. Incorporating the ethical framework, the clinical guidelines propose both withholding and withdrawing ventilators from patients with the highest probability of mortality to benefit patients with the highest likelihood of survival. Triage scores derive from the sepsis-related organ failure assessment system, which assigns points based on function in 6 basic medical domains. Triage may not be implemented by a facility without clear permission from public health authorities. New York State released the draft guidelines for public comment, allowing for revision to reflect both community values and medical innovation. This ventilator triage system represents a radical shift from ordinary standards of care, and may serve as a model for allocating other scarce resources in disasters.

Culture and Communication: Medical Disclosure in Japan and the U.S.

1The opinions expressed are solely those of the author and not those of the New York State Task Force on Life & the Law, nor of New York State government.

Book and Media Reviews

PROCREATION BEGETS LITIGATION: IT IS AN OLD STORY.STILL,THE authors of this book, Susan Crockin and Howard Jones, point to assisted reproduction as a fertile field for new and interesting legal questions. The approach they have chosen to those questions—obtainingcasereportswrittencontemporaneously withthedevelopmentsdescribedandorganizingthembytopic and then chronologically—has its advantages and disadvantages. On one hand, this approach delivers on the promise of the subtitle, giving the reader a sense of the evolution of law and policy over time and within and across jurisdictions. On the other hand, the reader misses the power of an overarching narrative weaving together cases and conceptual analysis, althoughtheauthorshave tried tocompensatewithmedical and legalcommentaries foreachtopicareaandastrongconclusion. The coverage of topics is comprehensive: embryos (includingquestionsof statusanddisposition), access tocare (includinglitigationoverthecharacterizationofinfertility),professional liability issues,various formsofcollaborativereproduction(including a large number of cases addressing same-sex parenting and posthumous reproduction), developing technologies (the intersection of assisted reproduction and genetics as well as cases related to embryonic stem cell research), and salient adoption and abortion litigation. However, not all topics are coveredcomprehensively.Theauthors’ overall strategyplaces the greatest emphasis on areas of law in which judges rather than legislators have been the key players. The conclusion, especially a lengthy essay by Crockin, provides a synthesis and suggests resolutions to certain ongoing debates. Crockin highlights areas in which consensus has developed over time, such as widespread adoption of an intermediate “special respect” position vis-a-vis embryos created during in vitro fertilization (IVF). She likewise attends to areas in which she believes more progress is possible, such as the careful drafting, completion, and implementation of comprehensive directives for the disposition of embryos left over following IVF. It is worth noting that Crockin and Jones are eminent in the world of reproductive law and medicine. This is truly an insider account, with the strengths and weaknesses usually associated with being on the inside: complete mastery of the material and interesting “behind the scenes” insights into major developments but also an occasional lack of critical distance. An illustration would be the treatment of gestational surrogates (also termed gestational carriers)—women who, following an agreement with an intended parent or parents, become pregnant via IVF involving embryos to which they have not contributed genetically. Crockin suggests that once judges grasp the medical distinction between gestational and traditional surrogates, they will translate that knowledge into legal rulings that treat gestational surrogates as nonmothers. Decisions along these lines are obviously in line with the interests of individuals seeking assistance with reproduction and the fertility industry. Such decisions also can be defended in ethical and policy terms. Still, I take issue with the implication that treating gestational surrogates as mothers is a consequence of medical naivete. In its 1998 report on assisted reproductive technologies, the New York State Task Force on Life and the Law concluded that gestational surrogates should be treated as mothers. On this issue, a full consideration of the arguments pro and con might have been beneficial. I would not expect the authors, in this type of book, to engage more radical critiques of assisted reproductive technologies and associated legal structures. The target audience for Legal Conceptions: The Evolving Law and Policy of Assisted Reproductive Technologies is professionals involved in assisted reproductive technologies. Although the focus is on law, the writing is clear and accessible, and background information is supplied for nonlawyers. For most readers, this will not be a book to read cover-to-cover; I suggest reading the commentaries and conclusions and then sampling the case reports according to interest or jurisdiction. The book is not intended as a substitute for legal advice that reflects the most up-to-date case and other developments in the relevant jurisdiction, and it should not be treated as such.

Closing the gaps in genetics legislation and policy: a report by the new york state task force on life and the law.

The New York State Task Force on Life and the Law, a state bioethical policy commission, recently completed a project addressing the ethical, legal, and social concerns surrounding the predictive uses of genetic testing. Its report, Genetic Testing and Screening in the Age of Genomic Medicine, makes legislative, public policy, and practice recommendations on a host of issues. As part of this project, the Task Force reviewed the current policy and legislative landscapes related to confidentiality protections for genetic information and the use of genetic information by insurers. It also assessed requirements for informed consent to clinical genetic testing and for the use of clinical samples for genetics research. The Task Force considered gaps and unintended consequences of relevant genetic testing legislation and assessed its flexibility to address new uses of genetic testing, such as pharmacogenetic testing, and new ways of offering tests, such as multiplex testing panels. The Task Force also considered the relevance of the pleiotropic characteristic of genes for issues of informed consent to genetic testing and the confidentiality of genetic information. The Task Force's recommendations, presented here, seek to promote the appropriate uses of clinical genetic testing and research while preventing potential harms.

Stopping a Vicious Cycle: Release, Restrictions, Re-Offending

his Issue addresses a problem that is now receiving heightened attention: the reentry of incarcerated offenders into their communities and legal and practical obstacles to JL their successful reintegration. Almost 500,000 inmates are released from state pris ons every year. Many of them are insufficiently supervised upon release; a substantial number will find themselves back in prison within a short period of time. Because of the harm such a cycle inflicts upon the individuals and the communities from which they hail, a number of public and private organizations are now addressing how to assist ex-offenders upon their release while guaranteeing public safety. The growth of the incarcerated population in the last two decades has made the question of reentry increasingly pressing. Two million offenders are incarcerated in local, state and federal institutions across the country. Various organizations are studying the obstacles ex-offenders face, designing pro grams to remedy some of the most glaring hurdles and administrative deficiencies, and devel oping legislative and judicial strategies to limit the negative consequences of restrictions on ex-offenders while providing incentives for them not to re-offend. Involved in this new approach are governmental units such as the U.S. Department of Justice and its National Institute of Justice (nij), private research organizations such as the Vera Institute of Justice and the Open Society Institute's Center on Crime, Communities and Culture, and state agencies such as the New York State Task Force on Parole. The Criminal Justice Section of the American Bar Association has been working on a draft resolution urging reconsideration of statutory collateral consequences in light of the desirability of reintegrating offenders into society. Some groups provide funding and coordination for reentry projects while others lobby for different approaches. The articles here focus on two aspects of life after imprisonment: First, Marc Mauer and Robert Musser each talk about different sets of legally imposed collateral consequences. Mauer highlights the disenfranchisement of ex-offenders ? 3.9 million Americans are cur rently denied the right to vote. How many suffer from employment restrictions or the denial of welfare benefits remains unknown because of the panoply of federal and state limitations on the social, political and economic rights of ex-felons. These officially decreed effects of a criminal conviction, which are the focus of Robert Musser's article, may cause reintegration problems for offenders upon release, and perpetuate their stigmatization as ex-offenders. Whether they serve any salutary benefit as incentives or deterrents depends on the type of restriction and on the individual offender. Second, Laurie Robinson and Jeremy Travis focus on practical obstacles offenders face upon discharge. They describe the recently established reentry court and reentry partnership initiatives sponsored by the Department of Justice. Both initiatives are based on the assump tion that reentry poses criminal justice, public health and economic challenges. The present situation bears out these considerations: Almost two-thirds of all ex-offenders convicted in state court are rearrested within three years of their release, and one-third return because of parole violations. To assist offenders in readjusting to life after prison and to reduce re-offend ing, communities and governmental agencies must develop collaborative strategies with grad uated sanctions and built-in incentives. Offenders have always faced detrimental consequences upon release. They have encoun tered societal prejudices and stigma. Private employers are frequently reluctant to hire ex-con victs. State and federal governments have imposed a panoply of legal barriers upon them, To assist offenders in readjusting to

Developing public policy on assisted reproductive technologies: reflections on the work of the new york state task force on life and the law∗

In April 1998, the New York State Task Force on Life and the Law released a 474-page report examining the clinical, legal, and ethical issues raised by developments in assisted reproductive technologies (ARTs) (1). The Task Force, a nonpartisan advisory commission, was created by executive order in 1985 and is charged with developing public policy on issues arising from medical advances. The 24 Task Force members, who serve without compensation, include leaders in the health care professions, law, and bioethics, as well as patient advocates and representatives of diverse religious communities. Seven of the Task Force’s proposals have been enacted into law in New York State. Task Force recommendations also have been embraced as models for legislation in other states and have been cited in numerous judicial decisions (2–6).

Assisted Reproductive Technologies: Analysis and Recommendations for Public Policy By New York State Task Force on Life and Law (review)

Assisted Reproductive Technologies: Analysis and Recommendations for Public Policy By New York State Task Force on Life and Law (review)

Bioethics commissions: town meetings with a "blue, blue ribbon"

Bioethics Commissions: Town Meetings with a “Blue, Blue Ribbon” Susan Cartier Poland (bio) Town meetings are characteristic of New England. In theory, a quorum of registered voters in a small municipality meets annually to decide local public policy. In fact, special interests and the town bureaucracy control the meeting. Like a town meeting, a commission (or committee or council) comes into being, whether on an ad hoc or permanent basis, to direct a government function. Bioethics commissions specialize in one area: the intersection of public policy with developments, either real or anticipated, in the basic and applied sciences. That specialization of commissions carries over into the selection of the members. More often than not commission members are appointed on the basis of expertise in a specific area. Although some commissions are still made up entirely of one kind of expert, usually medical, the majority of these government bodies seek breadth between the fields of law, religion, ethics, and science (including medicine and the social sciences). In the words of Mrs. Rigenbach, the law clerk to Chief Judge Carl B. Rubin of the United States District Court for the Southern District of Ohio, selection of persons “knowledgeable in the field” constitutes a “blue, blue ribbon” jury. In contrast, a “blue ribbon” jury is composed of those persons having “the greatest amount of formal education” (In re Richardson-Merrill, Inc. (Bendectin litigation), 624 Federal Supplement 1212 at 1217 (1985)). The problem with persons knowledgeable in the field is that their minds may have already been made up. For a jury, this is a disaster; for a bioethics commission, this directs and shapes the research, investigation, and discussion, or, in short, it makes for more efficient decision making. For this Scope Note, the definition of commission begins with the Bioethicsline description of its index term “advisory committees” as committees or commissions set up to advise government bodies on public policy. Furthermore, a commission [End Page 91] (or committee) receives government funding and support in exchange for its expertise in research, investigation, reporting, and recommendations. Six functions served by bioethics commissions have been clearly and succinctly described by LeRoy Walters (Commissions and Bioethics. Journal of Medicine and Philosophy 14 (4): 363–68, August 1989). The functions are: (1) to legitimize action; (2) to delay action or resolution; (3) to identify duplication; (4) to be representative; (5) to do research and find facts; and (6) to provide education and support (pp. 364–65). Since 1989, however, another government function has moved to the forefront. Instead of remaining within the legislative arena, government commissions serve the judiciary as well, in cases involving complex and technical questions. The now defunct Law Reform Commission of Canada recognized this use when it included in its annual reports a section on its “Influence on Law Reform through Judicial Decisions.” In mid-1997, the United States Supreme Court in its consolidated cases on assisted suicide used extensively the writings from a state commission, the New York State Task Force on Life and the Law, to support its rationale. Not only did the Court make use of the Task Force’s work, but in so doing the Court extended the efforts of the commission beyond its jurisdiction of New York into another jurisdiction on the opposite coast, Washington state. Furthermore, although the commission was chartered by one state, through the federal court system, its influence became national. Outside the U.S., the United Nations recently adopted its first bioethics text on the ethics of genetic research, and Canada is reworking its human research guidelines into a single set of guidelines that will apply to research in both the natural sciences and the social sciences. This Scope Note attempts to compile for the researcher and the reference librarian those commissions, existing and defunct, that have addressed bioethics issues. Only one other such attempt is known to the author, an Office of Technology Assessment [OTA] Background Paper, Biomedical Ethics in U.S. Public Policy (1993). Due to space limitations, not all publications could be listed; the selections included represent the range of topics from a particular group or the more frequently cited sources. Future updates of this compilation are planned, so please notify the...

Treatment decisions for patients without surrogates: rethinking policies for a vulnerable population.

Journal of the American Geriatrics SocietyVolume 45, Issue 3 p. 369-374 Treatment Decisions for Patients Without Surrogates: Rethinking Policies for a Vulnerable Population Tracy E. Miller JD, Tracy E. Miller JDSearch for more papers by this authorCarl H. Coleman JD, Corresponding Author Carl H. Coleman JD Executive DirectorNew York State Task Force on Life and the Law, 5 Penn Plaza, 3rd Floor, New York, NY 10001-1803.Search for more papers by this authorAnna Maria Cugliari MS, Anna Maria Cugliari MSSearch for more papers by this author Tracy E. Miller JD, Tracy E. Miller JDSearch for more papers by this authorCarl H. Coleman JD, Corresponding Author Carl H. Coleman JD Executive DirectorNew York State Task Force on Life and the Law, 5 Penn Plaza, 3rd Floor, New York, NY 10001-1803.Search for more papers by this authorAnna Maria Cugliari MS, Anna Maria Cugliari MSSearch for more papers by this author First published: 27 April 2015 https://doi.org/10.1111/j.1532-5415.1997.tb00956.xCitations: 20 *Visiting Scholar for Law and Health Policy, Department of Health Policy, Mount Sinai School of Medicine †Executive Director, New York State Task Force on Life and the Law ‡Vice President, Commitment 2000, the Advertising Council. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Citing Literature Volume45, Issue3March 1997Pages 369-374 RelatedInformation

New York's DNR Law Does Not Require Futile Resuscitation

Pollack¹makes serious misstatements in his critique of New York's do-not-resuscitate (DNR) law. He asserts incorrectly that the law requires physicians to perform futile resuscitation unless the patient or surrogate explicitly consents to the entry of a DNR order. Apparently, Pollack is referring to a provision in the law stating that every person admitted to a hospital shall be presumed to consent to the administration of cardiopulmonary resuscitation in the event of cardiac or respiratory arrest, unless there is consent to the issuance of an order not to resuscitate as provided in this article.² A presumption in favor of resuscitation does not mean that resuscitation must be attempted when it is clear that it will not work. As the New York State Task Force on Life and the Law, the commission that wrote the DNR law, has pointed out the presumption protects health care professionals from liability for

Detours on the Road to Autonomy

IN 1988 New York State passed legislation regulating the writing of do-not-resuscitate (DNR) orders. The legislation was intended to preserve and maximize patient autonomy. However, there have been 2 unintended consequences: futile resuscitation has become institutionalized and patients who want to protect themselves against the terror of approaching death by clinging to denial are deprived of this self-protective device, unless the physician fails to obey the law. In 1982 a grand jury found that a New York City hospital had been using covert DNR orders and routinely excluding patients from decisions about their resuscitation. 1 A subsequent New York State task force was charged with drafting legislation to regulate the writing of DNR orders, in particular to fashion a law that preserved and maximized patient autonomy. To that end it proposed that exceptions to the discussion of a DNR order directly with the patient be narrowly limited. The law was

Teaching prosocial behaviour to adolescents: an edited interview with Arnold Goldstein: Interviewer: Kate Prescott

Dr Arnold P Goldstein is a clinical psychologist whose work has focused on the causes and reduction of youth violence. He is currently the Professor of Special Education at Syracuse University, New York, and the Director of their Centre for Research on Aggression. He is also the Co-Director of the New York State Task force on Juvenile Gangs and a member of the American Psychological Association's Commission on Youth Violence.

Moral consensus in public ethics: patient autonomy and family decision-making in the work of one state bioethics commission.

Focusing on the work of one bioethics commission, the New York State Task Force on Life and the Law, this article explores the role played by moral consensus in public ethics. Task Force members, who were appointed to represent diverse interests in New York State, identified a culturally strong value of individual autonomy as the ethical basis for their work on life-sustaining treatment. This moral consensus permitted the members to unite across their differences and develop public policy recommendations that substantially reformed a highly troubling New York law. However, the principle of autonomy insufficiently guides decisions by caring family members for incompetent adults in cases where little is known of patient preference. A different, more innovative moral vision is required--one that grants a more robust moral authority to the family. While government efforts that rely on moral consensus developed in a broad-based and well-reasoned manner can serve us well, in some cases the consensus will provide inadequate moral guidance. Government bioethical efforts must guard against the limits of moral vision in light of their disproportionate societal power.