Advances in our approach to advance care planning have occurred over four decades. There has been a movement away from legal form completion alone to open honest conversations about personal values, beliefs, goals for care – in other words what matters most to the patient – as well as “putting it in writing” and completing legal documents.
The ethical framework for end-of-life decision-making is rooted in our professionalism as physicians, nurse practitioners, nurses, and all members of the interdisciplinary team. The highest standard is to follow “known wishes” and if not known, then determine what is in the “best interest” of the patient.
Our federal right to “self-determination” – to accept or refuse treatment does not end as we approach the end of life. Each state crafts public health laws and legal requirements to ensure person-centered care. New York’s Public Health Laws align legal requirements with the ethical framework and patient protections to ensure shared decision making is well informed.
1976 – Karen Ann Quinlan slipped into a coma in 1976 and became the center of a national debate on the definition of life and the right to die. In a landmark lawsuit on Sept. 12, 1975, the Quinlans asked that the respirator be disconnected and that their daughter be allowed to die ”with grace and dignity,” because there was no hope she would recover. The suit was filed after the doctors caring for Miss Quinlan had refused a private request by the parents to let her die. A Superior Court judge in Morristown, N.J., denied the parents’ request the next November, but the decision was reversed in an appeal to the New Jersey Supreme Court. On March 31, 1976, the New Jersey Supreme Court set several legal and medical precedents in its 7-to-0 decision.
1978 – Congress & President Jimmy Carter create the President’s Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research.
1982 – The Medical Society of the State of New York (MSSNY) issued guidelines for hospitals and physicians on “Do Not Resuscitate” Orders. Other life-sustaining treatment decisions were not addressed.
1983 – The President’s Commission issued a report on withholding/withdrawing life-sustaining treatment, titled Deciding to Forego Life-Sustaining Treatment.
1985 – New York Governor Mario Cuomo created the New York State Task Force on Life and the Law to research and provide guidance to the state on cutting-edge legal and ethical issues in healthcare. The Task Force members are volunteers and are experts and leaders in the fields of law, medicine, nursing, bioethics, philosophy and religion.
1986 – The Task Force produces a report titled Do Not Resuscitate Orders.
1987 – New York State creates Public Health Law 29-CCC, the first non-hospital DNR law in the country, based on Task Force recommendations. The Task Force produces a second report titled Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent.
1989 – Nancy Cruzan was the first “right to die” case the Supreme Court had ever heard. It proved divisive for the Court. In a split 5-4 decision, the Court found in favor of the Missouri Department of Health and ruled that nothing in the Constitution prevents the state of Missouri from requiring “clear and convincing evidence” before terminating life-supporting treatment, upholding the ruling of the Missouri Supreme Court. In a majority opinion by Chief Justice Rehnquist, the Court ruled that individuals who have capacity to make decisions have the right to refuse medical treatment under the Due Process Clause. However, with incapacitated individuals, the Court upheld the state of Missouri’s higher standard for evidence of what the person would want if they were able to make their own decisions. This higher standard was constitutional, the Court ruled, because family members might not always make decisions that the incapacitated person would have agreed with, and those decisions might lead to actions (like withdrawing life support) that would be irreversible.
1990 – New York State creates Health Care Proxy Law, Public Health Law Article 29-C based on Task Force recommendations.
1992 – The Task Force produces a report titled When Others Must Choose to address surrogate decision making when a patient does not have a completed Health Care Proxy.
2005 – The case of Terri Schiavo, a woman in an irreversible persistent vegetative state, was a right-to-die legal case in the United States from 1990 to 2005. Schiavo’s husband and legal guardian argued that Schiavo would not have wanted prolonged artificial nutrition without the prospect of recovery, and elected to remove her feeding tube. Schiavo’s parents disputed her husband’s assertions, challenged Schiavo’s medical diagnosis, and argued in favor of continuing artificial nutrition and hydration. The highly publicized and prolonged series of legal challenges presented by her parents ultimately involved state and federal politicians up to the level of President George W. Bush. This caused a seven-year delay before Schiavo’s feeding tube was ultimately removed. The Schiavo case involved 14 appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in federal district court; extensive political intervention at the levels of the Florida state legislature, Governor Jeb Bush, the U.S. Congress, and President George W. Bush; and four denials of certiorari from the Supreme Court of the United States.
2005 – New York State’s legislature and Governor George Pataki authorize a pilot to study MOLST usage in lieu of the 1987 Non-Hospital DNR in Monroe and Onondaga Counties. MOLST Pilot Project Legislation (A.8892) was passed in June 2005. The Governor signed the bill on October 11, 2005 with a carve-out for Office of Mental Health (OMH) and Office of Mental Retardation and Developmental Disabilities (OMRDD). The MOLST Community Pilot formally began on October 11, 2005.
2006 – MOLST is approved for use by the New York State Department of Health in all hospitals and nursing homes. A Dear Administrator Letter (DAL) is issued January 17, 2006.
On July 26, 2006 the legislature and Governor Pataki authorized a Chapter Amendment to allow Emergency Medical Services (EMS) to honor “Do Not Intubate” (DNI) orders on the MOLST form in Monroe and Onondaga counties as part of the MOLST Community Pilot. MOLST provides the first legal non-hospital DNI order in New York State in these counties.
The Surrogate Court’s Procedure Act Article 17-A, sub-section 1750-b, was updated to allow guardians of individuals with Developmental Disabilities to make end-of-life decisions for these individuals.
2008 – The MOLST Pilot successfully ends. The New York State Legislature and Governor David Paterson amend NYS Public Health Law to allow MOLST to be used statewide and in all settings, including non-hospital (community) settings. EMS can now honor DNR and DNI orders on MOLST forms statewide. The MOLST form is the only tool for non-hospital DNI orders in New York State.
2010 – Family Health Care Decisions Act (FHCDA) is passed by the Legislature and signed by Governor Paterson, creating surrogacy laws in NYS. FHCDA is based on the 1992 Task Force report. FHCDA applies in hospitals and nursing homes only. MOLST becomes a NYSDOH Form (Form DOH-5003).
2011 – FHCDA is updated to also apply to hospice.
2015 – FHCDA is extended to include decisions for hospice patients without a Surrogate. Amended 2994-g creates a new category of isolated patient decisions: “5-a Decisions regarding hospice care” that allows the Attending Physician to elect hospice for the isolated patient and align the legal requirements for MOLST decisions more closely with legal requirements when an identified FHCDA Surrogate makes MOLST decisions.
2017 – FHCDA is updated to allow “attending nurse practitioners” to act the same as “attending physicians” can when they are withholding/withdrawing life-sustaining treatment under the legal pathways that are governed by FHCDA. This law is effective on May 28, 2018.
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