Wikipedia

New York State Task Force on Life and the Law

The New York State Task Force on Life and the Law is a multidisciplinary advisory body formed to study and recommend public policies for New York State on bioethical issues.

From 1985 through 2016, the Task Force issued reports with policy recommendations on a broad range of bioethical topics, including brain death, do-not-resuscitate (DNR) orders, health care proxies, surrogate decision-making, the allocation of organs for transplantation, surrogacy, medical aid-in-dying, genetic testing and screening, the allocation of ventilators in a pandemic, and research involving human subjects who lack capacity.

Many of the Task Force’s recommendations were enacted into New York State laws, promulgated as regulations, or cited in judicial decisions.  Task Force reports have also influenced the practice of health care professionals and institutions in New York and beyond, and are widely referenced in books and journals on medicine, law and ethics.

Formation

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The Task Force was formed in 1984 by Executive Order of Governor Mario M. Cuomo.[1]  Governor Cuomo noted several bioethical policy issues that were of great public concern in New York, including brain death, end-of-life decisions for severely disabled newborns, and do-not-resuscitate orders.  He recognized the multidisciplinary nature of these issues, and concluded that an advisory body, composed of members with diverse disciplines, backgrounds and viewpoints, might help reach a consensus on policy recommendations. A prominent and recent precedent for this approach was the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

The Executive Order called for a body of 23 members appointed by the Governor and chaired by NYS Health Commissioner.  The Health Commissioner at the time was David Axelrod, M.D., a highly-regarded public health official.  The initial Task Force members were persons prominent in medicine, nursing, law, philosophy and ethics, civil rights and religion.  The Task Force first met in December 1984 to begin to craft a public policy on do-not-resuscitate orders.

Task Force Reports

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Between 1986 and 2016, the Task Force studied and issued reports and recommendations on a broad range of bioethical issues.  Its key reports, organized by category were as follows:

Allocation of Ventilators in a Pandemic

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  • New York State Workgroup on Ventilator Allocation in an Influenza Pandemic. Allocation of Ventilators in an Influenza Pandemic: Planning Document (2007)
  • Ventilator Allocation Guidelines (2015)

Dietary Supplements

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  • Dietary Supplements: Balancing Consumer Choice & Safety (2005)

End-of-Life Decisionmaking / Decisions for Incapable Patients

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  • Do Not Resuscitate Orders (1986)
  • The Determination of Death (1986)
  • Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent (1987)
  • Transplantation in New York State: The Procurement and Distribution of Organs and Tissues (1988)
  • When Others Must Choose: Deciding for Patients Without Capacity (1992)
  • When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context (1994)
  • Recommendation Regarding the Extension of the Family Health Care Decisions Act to Include Hospice (2010)
  • Guidelines for Determining Brain Death (2011)
  • Recommendations for Extending the Family Health Care Decisions Act to Medicare and/or Medicaid-Certified and State-Licensed Agencies, Programs, and Settings (2013)
  • Recommendations for Amending the Family Health Care Decisions Act to Include Health Care Decisions for Persons with Developmental Disabilities and Patients in or Transferred from Mental Health Facilities (2016) (Special Advisory Committee Report approved by the Task Force).

Genetic Testing and Genomic Medicine

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  • Genetic Testing and Screening in the Age of Genomic Medicine (2000)

Human Subjects Research

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  • Report and Recommendations for Research With Human Subjects Who Lack Capacity (2014)

Organ and Tissue Procurement, Allocation and Transplantation

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  • The Required Request Law (1986)
  • Transplantation in New York State: The Procurement and Distribution of Organs and Tissues (1988).

Reproductive and Beginning of Life Issues

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  • Fetal Extrauterine Survivability (1988)
  • Surrogate Parenting: Analysis and Recommendations for Public Policy (1988)
  • Assisted Reproductive Technologies: Analysis and Recommendations for Public Policy (1998)
  • Revisiting Surrogate Parenting: Analysis and Recommendations for Public Policy on Gestational Surrogacy (2016)  

Various Task Force Reports are available, in booklet and or electronic format, in public libraries (including the New York State Library and the New York City Public Library), as well as in the libraries of law schools, medical and nursing schools, bioethics programs and universities.

In August 2024, The Empire State Bioethics Consortium began to offer free access on its website to electronic versions of most of the Task Force’s work.[2]

Impact on Laws, Regulations and Court Decisions

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Task Force reports and recommendations have been highly influential.  A notable number of the Task Force’s recommendations were adopted in whole or part as New York statutes or regulations.  For example, Task Force proposals resulted in New York’s Do Not Resuscitate Law;[3] Health Care Proxy Law,[4] Family Health Care Decisions Act,[5] a law on the allocation of organs and the formation of a Transplant Council[6] and a NYS Department of Health regulation recognizing brain death.[7]   A 1988 Task Force report led to a law restricting commercial surrogate parenting arrangements;[8] however a 2016 Task Force report called for legalizing and regulating gestational surrogacy, and a law reflecting that proposal was enacted in 2020.[9] The Task Force report on the allocation of ventilators in a pandemic did not call for any changes in law, but influenced the policies of hospitals during the covid pandemic.

Proposals by the Task Force have also been adopted in states other than New York.  Massachusetts[10] and Vermont [11]enacted laws based on the Task Force’s health care proxy proposal; Georgia adopted a DNR Law based on the Task Force’s DNR proposal.[12]

Task Force reports have been cited and relied upon as an authority in many court decisions, including opinions of the United State Supreme Court[13] and the New York State Court of Appeals[14].  They also are referenced in numerous legal, medical and bioethical books and articles.   

Many newspaper editorials address Task Force proposals, including over a dozen supportive New York Times editorials.[15]

The impact of Task Force reports has been especially pronounced in New York policies regarding end-of-life decisions. Prior to the Task Force's work, brain death was not recognized, DNR orders were of doubtful legality, patients had no ability to appoint a health care agent, and there were no clear rules about who could make decisions for a patient who lacked capacity, or on what basis. Those issues are now largely resolved along the lines proposed by the Task Force, with policies that are generally regarded as successful.

Beyond impacting public policy, Task Force reports influenced professional practices and institutional policies. Moreover, it contributed to changes in culture from an era when, for instance, creating an advance directive was considered eccentric or avant-garde, to present day when it is considered a necessary item among each adult's personal papers.

Opposition

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The Task Force was formed to propose policies on controversial issues, so nearly every one of its recommendations encountered opposition, and/or criticism post-adoption. For example:

  • The proposal to recognize brain death was opposed by organizations that who maintained that it amounted to an intellectually dishonest redefinition of comatose patients as dead, and violated the civil rights of those who disagreed with that definition.
  • The proposal to recognize the legality of DNR orders was opposed by organizations that argued that physicians should never be allowed to "give up" on dying patients. But it was also opposed by some medical and bioethical groups as an intrusion on the judgment of physicians.
  • The proposal to allow surrogate decision-making for end-of-life decisions was opposed by some groups who believed it devalued life and jeopardized vulnerable incapable patients.
  • The 1988 proposal to prohibit commercial surrogacy was opposed by groups that passionately believe infertile couples should have the option of surrogacy, while the 2016 proposal to legalize gestational surrogacy was opposed by groups that passionately believe the practice is immoral baby selling, and will harm all parties involved.
  • The 2007 and 2015 guidelines on the allocation of ventilators in a pandemic set the goal of saving the most lives, and recommended using purely clinical criteria to achieve that goal; that approach necessarily meant assigning - and in dire circumstances reassigning, ventilators to save the most lives. Some organizations that advocate for people with disabilities sued the NYS Department of Health contending that the this triage approach discriminated against people with disabilities.[16] The lawsuit was dismissed due to plaintiff’s failure to show a risk of imminent injury, given that the guidelines were only a Task Force proposal, not Health Department policy.

In several instances, some Task Force members themselves voiced their opposition to Task Force recommendations. Several of the reports include a minority statement by one or more members.[17]

In many instances, legislators or regulators modified Task Force Force proposals to take into account some of the opposition arguments. For example, New York's brain death regulation includes a provision, not in the Task Force's proposal, to require the reasonable accommodation of patients known to have a religious or conscience based objection to the brain death standard.[18] New York's Family Health Care Decisions Act omits a Task Force's proposal to allow a physician and ethics review committee to make end of life decisions for a patient who lacks capacity and has no surrogate decisionmaker or health care agent, in circumstances where a surrogate could make such decision. [19]

Task Force Members

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During its 35 active years, over 50 people were appointed as members of the Task Force.  Task Force members with Wikipedia entries are as follows, along with their affiliation as described in a Task Force report:

Chairs and Executive Directors

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Per the initial Executive Order, the New York State Commissioner of Health is the Chair of the Task Force.  Most health commissioners performed this task personally either all of much of the time. The Commissioner/Task Force chairs through 2019 were David Axelrod, M.D. (1979-91), Mark Chassin, M.D. (1992-94); Barbara Ann DeBuono, M.D., (1995-98); Antonia C. Novello (1999-2006); Richard F. Daines (2007-2010);  Nirav Shah, M.D. (2011-2015) and Howard Zucker, M.D. (2015-21).

Tracy E. Miller, J.D., was the initial Executive Director of the Task Force and served from 1985 – 1992. Successive Executive Directors were Tia Powell, M.D., Carl Coleman, J.D., Beth Roxland, J.D. and Stuart C. Sherman. J.D.

The Task Force Since 2019

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The Task Force has not met since 2019.  However, in 2022, Governor Hochul expressly continued the Executive Order that created the Task Force.[14]  Accordingly it exists, but is inactive.

  1. ^ Executive Order No. 56: Establishing the New York State Task Force on Life and the Law. 9 NY Code of Rules and Regulations § 4.56. (1984). See also, "Cuomo Plans Unit on Right to Die," NY Times October 4, 1984 A-1.
  2. ^ "Empire State Bioethics Consortium". Empire State Bioethics Consortium. 2023-01-30. Retrieved 2024-08-10.
  3. ^ Former NY Public Health Law (PHL) Article 29-B Orders Not to Resuscitate.
  4. ^ NY PHL Article 29-C Health Care Agents and Proxies.
  5. ^ PHL Article 29-CC; Family Health Care Decisions Act.
  6. ^ NY PHL Article 43-B.
  7. ^ 10 NYCRR § 400.16 Determination of Death.
  8. ^ NY Domestic Relations Law Article 8 (repealed in 2020).
  9. ^ NY PHL Article 15-B Child-Parent Security Act of 2020.
  10. ^ Mass. Gen. Law Chapter 201D.
  11. ^ Former 14 V.S.A. Chapter 121.
  12. ^ O.C.G.A. §31-39-1 et. seq.
  13. ^ Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco  v. Quill, 521 U.S. 793 (1997).
  14. ^ Myers v. Schneiderman, 30 NY.3d 1 (2017); Kass v. Kass, 91 N.Y. 2d 554 (1998); Matter of Westchester County Medical Center on Behalf of O’Connor, 72 N.Y. 2d 517 (1988).
  15. ^ "Death, Out of the Closet," NY Times, May 25, 1985, A-22; "Give the Dying Their Voice," NY Times, Aug. 31, 1985, A-22; "Help the Living Help the Dying," NY Times, June 6, 1994 A-14; “'If Hope Is Gone'”, NY Times, Aug. 8, 1987, A-26; "It's Baby-Selling, and It's Wrong," NY Times, June 4, 1988; A-26; “Mercy for the Dying, NY Times, May 28, 1994, A-18; "Needless Agony, for $100,000, NY Times, Oct. 2, 1992, A-30; “Sensible Answers to Death and Deceit, NY Times, June 12, 1987, A-30; "Silence and the Sick in Albany," NY Times, April 3, 1990, A-22; "So the Sick Can Speak," NY Times, June 12, 1989, A-18; "Taking Charge of Life, and Death", NY Times Oct. 12, 1987, A-18; "Waiting in Line for Life," NY Times, April 7, 1988, A-26; "WHOSE LIFE IS IT, ANYWAY?; 'When Is It Time to Let the Dying Go?'," June 30, 1987, A-30. .
  16. ^ Not Dead Yet v. Cuomo, 554 F. Supp. 3d 445 (E.D.N.Y. 2021)
  17. ^ E.g., Do Not Resuscitate Orders (1986); The Determination of Death (1986); Revisiting Surrogate Parenting: Analysis and Recommendations for Public Policy on Gestational Surrogacy (2016).
  18. ^ 10 NYCRR § 400.16.
  19. ^ See When Others Must Choose: Deciding for Patients Without Capacity (1992) pp258-59.
  20. ^ Rosenwald, Michael S. (2024-05-10). "Nancy Neveloff Dubler, Mediator for Life's Final Moments, Dies at 82". The New York Times. ISSN 0362-4331. Retrieved 2024-08-10.
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