End of Life Choices New York is the leading organization in New York working to improve health and end of life care and expand end-of-life options, to ensure a humane and peaceful death with dignity. With a primary focus on support for dying patients and their families, End of Life Choices New York presses for state-of-the-art pain management, palliative care and end of life care, including hospice; promotes health care proxies and Medical Orders for Life Sustaining Treatment; and advocates to ensure that the decisions and wishes of patients are honored at the end of life, including decisions to have treatment withheld or withdrawn, to voluntarily stop eating and drinking, to have palliative sedation and to have access to aid in dying. We seek a world in which all of us have the best death possible, consistent with our own wishes and values.
Life is precious, but it ends eventually for all of us including some 150,000 people yearly in New York State. No dying person should have to endure more suffering than he or she is willing to bear. Every dying person who is mentally competent should have the right to die, if possible, in a way that she or he decides and controls, consistent with her or his values and beliefs. Yet, in New York State, many people die protracted deaths with terrible suffering, even some patients who are receiving excellent hospice care, which the vast majority of patients in New York do not receive. Reports, including the 2015 Dying in America Report of the Institute of Medicine, consistently show that too many people die badly, often in ways inconsistent with their wishes. Too many people also receive levels of care and treatment at the end of their lives that they do not want or would not want if they were fully informed of their treatment options. Our end of life care system needs dramatic improvement.
End of Life Choices New York (EOLCNY) has been at the forefront of these issues in New York, with an experienced staff and board, working to achieve better care and more choices for the dying. We have established ourselves as a key and respected player in the end of life field. Through leadership, advocacy, education and counseling, we seek to expand choice at the end of life and improve the quality of care for New Yorkers, ensuring that their values and wishes are respected. Despite a small staff, we have had enormous successes and accomplishments. Our mission continues and is expanding with renewed enthusiasm as we move forward as an independent organization (we were formerly Compassion & Choices of New York).
What we do matters a great deal to people. The issues that EOLCNY works on and the activities in which we engage are about quality of health care, about health care choices, and about human rights, autonomy, justice and the relief of human suffering. We have summarized below our current and past activities and accomplishments in the areas of litigation, legislation, counseling services, outreach and education, publications, and media coverage.
A lawsuit initiated by End of Life Choices New York, Myers v. Schneiderman, has been filed in New York State Supreme Court to establish aid in dying as a right under current law or under the New York State Constitution. Several patients and prominent doctors are plaintiffs along with End of Life Choices New York and Judith Schwarz, our Clinical Director. These doctors include the same three doctors who brought the case in 1994 challenging, under the federal constitution, the purported prohibition of aid in dying under the law banning assisted suicide. We believe that this litigation is the path that offers the greatest chance of success in achieving our long time goal: ensuring that terminally ill New Yorkers have the choice to end their suffering with prescribed medicines.
Now is the right time to bring this lawsuit. Public attitudes are changing, there is widespread discussion about aid in dying, and there has been a recent favorable court decision in New Mexico (now on appeal).
The attorneys bringing this litigation are Kathryn Tucker, the country’s leading litigator on aid in dying, and the highly respected law firm of Debevoise & Plimpton. Kathryn has been involved in virtually every important lawsuit in this arena. For almost two decades she was the Director of Legal Affairs for Compassion & Choices. She now is Executive Director of the Disability Rights Legal Center in California. Ed Schallert, one of the nation’s leading litigators, is directing the Debevoise team.
A motion to dismiss the case has been made, as expected, which is now under consideration. Ultimately, we expect that a final decision in the case will be rendered by the New York Court of Appeals, New York’s highest court. Additionally, videotaped depositions have been held for two of the three patient plaintiffs whose illnesses are causing them to deteriorate.
On a parallel track with the litigation, a bill to establish aid in dying, crafted by us, was introduced in both houses of the New York State legislature by leading legislators, Assemblywoman Amy Paulin (D) and Senator John Bonacic (R). Our bills, A. 5261-B and S. 5814, are the only ones to have the special advantage of bi-partisan sponsorship in the state legislature.
We have many other important bills pending which we are hopeful might be enacted in the coming years. These include, among others, bills that would:
- Prohibit providers from seeking and obtaining reimbursement for unwanted health care treatment and allow for fines to be imposed and damages to be awarded for victims or family members of deceased victims who received unwanted treatment, A. 2140;
- Require continuing medical education of physicians in pain, palliative care and end of life care, A. 355, S. 4348;
- Protect physicians from discipline who prescribe pain medicines consistent with standards of care and nationally recognized guidelines, A. 2230;
- Require institutions to notify patients or health care agents of policies that do not honor the health care wishes of patients regarding treatment, A. 1003.
End of Life Choices New York has been a major force in New York in the creation and passage of key legislation designed to expand choice and to improve pain management, palliative care and end of life care. We have played a leadership role in having important, relevant legislation introduced and we have enjoyed great success in having such legislation enacted, including the bills described here:
Palliative Care Education and Training Act
Our work with leading palliative care physicians over a period of several years resulted in enactment of the Palliative Care Education and Training Act, Public Health Law, 2807-n (2007). This legislation addresses, in a number of meaningful ways, the urgent public health care crisis of the undertreatment of pain. In summary, the legislation:
- Establishes a statewide advisory council on palliative care and pain management (Serving on that council have been leaders in the palliative care field such as Kathleen Foley, MD, Diane Meier, MD and Russell Portenoy, MD);
- Creates undergraduate and graduate palliative care training programs;
- Establishes Centers for Palliative Care Excellence designated by the Department of Health;
- Authorizes the Department of Health to certify one or more palliative care resource centers to assist physicians in the treatment of patients in pain.
$4.5 million was authorized annually for the training programs but has not yet been approved.
Palliative Care Information Act
With the support of many leaders in palliative care, EOLC initiated and played a key role in the enacting of the Palliative Care Information Act (PCIA), Public Health Law, Section 2997-c, effective February, 2011. It is a critically important patients’ rights law and a model for the nation. As a result of this law, terminally ill patients now have a clearly defined right to receive information and counseling about their palliative care and end of life options, including hospice. This will enable them to make informed treatment decisions during the final months of their lives. The law states, in pertinent part, “If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end of life options appropriate to the patient, including but not limited to: the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management at the end of life.” This law was enacted largely due to our advocacy, despite opposition from the Medical Society of the State of New York, and it has resulted in a great deal of training on palliative care and the rights of patients regarding choices at the end of life. The NYS Department of Health, after enactment of the law, not only informed institutions and doctors across the state of the existence of the law and what was needed to comply but also placed on its website a tremendous amount of information on the law as well as on the Palliative Care Access Act, another extremely important law, also effective in 2011.
Health Care Proxy Education
Legislation designed to increase the number of people who complete health care proxies, initiated by our organization, was enacted in 2007, Public Health Law, Section 207-e. The law gives the Department of Health the authority to conduct education and outreach programs for consumers, patients, and health care providers relating to an advance directive, particularly a health care proxy, and the need for health care providers to play a leadership role in discussing end of life care preferences and values with patients and to provide patients with health care proxy forms.
Medicaid Applications and Health Care Proxies
As a result of our leadership efforts, applicants for Medicaid in New York must now be offered a health care proxy form. The law, Social Services Law Section 366-a1-a, specifically requires that every person making application for medical assistance, and every person on whose behalf an application is made, shall, if interested, be given the New York State Department of Health model health care proxy form by the person taking the application, except where doing so would impede the immediate provision of health care services.
It is very difficult to get legislation enacted. The vast majority of bills never become law. We are extremely proud of our record, which has resulted from our energetic efforts; employing an excellent lobbyist; working with key legislators, in particular the chairs of the health committees in both houses of the state legislature; and establishing excellent relationships with key leaders in the health care field whose support has been critical.
We respond to inquiries from all who contact us with questions about their end of life concerns. Sometimes the questions have to do with end of life planning and the completion of appropriate medical directives, such as New York State Health Care Proxies, Out of Hospital Do Not Resuscitate Orders, or Medical Orders for Life-Sustaining Treatment (MOLST) forms. Our contact information is available to all who view our website, so patients or family members can call or email us at any time if they have clinical questions about incurable and progressive diseases, the meaning of a new diagnosis, or the return of a disease previously in remission. The Clinical Director of EOLCNY will respond within hours to their concerns.
We provide information, advocacy and support regarding end of life choices and options, the goal of which is to facilitate treatment decisions that reflect the wishes and values of the person living with the disease. We understand that if individuals do not have complete information about the pros and cons of various options or interventions, they will not be able to make an informed decision. We counsel those who contact us on effective ways to communicate with health care providers, as well as members of their own families who may have difficulty accepting the patient’s end of life choices.
Patient Support Program
EOLCNY serves individuals and families who may be facing the end of life or who may simply be trying to plan ahead. We offer information and support, either in person or by phone, concerning a range of end of life issues. Our goal is to facilitate end of life choices that reflect the values and wishes of the dying patients. We provide:
- Information about pain specialists, hospice programs, social service agencies, disease-specific support groups and other resources
- Assistance to clients in completing advance directives
- Assistance to clients in talking openly and honestly with families, friends and health care providers about health care wishes
- Advocacy for patients whose end of life wishes are not being honored
- Advocacy for patients who may not be getting optimum pain or other symptom management
- For clients who are terminally ill, decisionally capable and suffering, who request such information, we may discuss effective means for controlling the circumstances and timing of death.
We have provided intensive counseling services to hundreds of people and have provided less comprehensive counseling on end of life issues to thousands of others while also providing relevant advance care planning documents such as health care proxies, MOLST forms and other documents designed to ensure that the end of life wishes of patients are respected.
Judith Schwarz, our Clinical Director, is a PhD prepared nurse, and one of the most experienced and highly respected end of life counselors in the country. Having worked with us for the better part of 13 years, Judy has provided the bulk of the counseling services. She has also trained, assigned and supervised numerous volunteers who have provided direct client support.
Outreach and Education
EOLCNY staff and board members have given hundreds of lectures, workshops and professional in-services on end of life issues, palliative care, pain management and patient rights to thousands of professionals and lay persons.
In addition to being regular guest lecturers at Fordham Graduate School of Social Service and College of New Rochelle School of Nursing we have spoken at over 60 senior centers and retirement communities and at numerous meetings and conferences. In recent years we have been a plenary speaker at Consortium of New York Geriatric Education Centers Conferences (twice), Jewish Home Life Care Annual Palliative Care Conference, Westchester/NYS Southern Region, Collaborative for Palliative Care Conferences (twice), The Open Center, and Westchester Medical Group at West Harrison and Rye. We have presented at the New York Academy of Medicine, State Society on Aging of New York Conferences (four times), the Hospice and Palliative Care of New York State Annual Meeting (twice) as well as at several medical centers or medical schools including New York Presbyterian Hospital, Mt. Sinai Medical Center, Albany Medical Center, Upstate University Medical School, North Shore LIJ and Lawrence Hospital. We have lectured at all of the New York City area law schools as well as at Yale, Syracuse and Albany law schools.
We have sponsored or co-sponsored events at which leaders in the health and end of life field have presented. Speakers have included, among others, Timothy Quill, MD, Director of Palliative Care at the University of Rochester Medical Center and plaintiff in lawsuits seeking to achieve aid in dying; David Muller, MD, Dean of Medical Education at Mt. Sinai Icahn School of Medicine and a co-founder of the Visiting Doctors Program; Jane Brody, New York Times health columnist; Marilyn Webb, PhD, author of the Pulitzer Prize nominated book “The Good Death: The New American Search to Reshape the End of Life”; Tia Powell, MD, PhD, former Executive Director, New York State Task Force on Life and the Law; Hon. Richard Gottfried, Chair, New York State Assembly Health Committee.
We have done outreach with hospices throughout the state, with health care leaders (particularly in the palliative care field), with senior centers and retirement communities, and at nursing, medical, social work and law schools. At more than 50 conferences where we have tabled, and at various other presentations, we have discussed and distributed thousands of health care proxy forms and other relevant documents, including Medical Orders for Life Sustaining Treatment (MOLST), and documents on pain, palliative care, getting health care wishes respected, and end of life treatment and choices, including hospice, voluntarily stopping eating and drinking, and aid in dying.
EOLCNY has had numerous articles published on topics related to our work. Below is a selection:
“Health Justice Denied or Delayed at the End of Life: A Crisis Needing Remedial Action”, 58 N.Y.L. Sch. L. Rev. 403 (2013-2014), David Leven
“Hospice and Palliative Care in New York Changing Landscape for Patients, Families and Providers in Health Decision Making”, NYSBA Elder Law Attorney, Winter 2011, Vol. 21, No 1, 32-39, David Leven, co-authored with Mary Beth Morrissey
“The Palliative Care Information Act and Its Applicability to Cases Subject to the Family Health Care Decisions Act”, NYSBA Health Law Journal, Spring 2011, Vol.16, No. 1, 114-117, David Leven
“The War Against Death”, The Human Prospect (published by the Institute for Science and Human Values), Fall 2013, 3:32-35, Peter Rogatz, MD
“Physician Aid in Dying: Pros and Cons”, The Humanist, November-December 2001, Peter Rogatz, MD
“The Right to Decide”, Newsday, October 31, 2014, Peter Rogatz, MD
“Hospice care for patients who choose to hasten death by voluntarily stopping eating and drinking”, J Hospice & Palliative Care Nursing. 16:126-131, 2014, Judith Schwarz
“Death by voluntarily dehydration: Suicide or the right to refuse a life-prolonging measure?” Widener Law Review 17:351-361, 2011, Judith Schwarz
“Stopping eating and drinking.” Amer J of Nursing. 109:53-62, 2011, Judith Schwarz
‘I Can’t Help You with That’: When terminally ill patients wish to hasten their dying, nurses can, and should, help”, Amer J of Nursing.108:11, 2008, Judith Schwarz
“Exploring the option of voluntarily stopping food and fluid within the context of a suffering patient’s request for a hastened death”, Journal of Palliative Medicine,10;1288-1297, 2007, Judith Schwarz
“Clinical application of the rule of double effect in palliative end of life care”, Amer Acad Hospice & Palliative Medicine Bulletin; 7:1-3, 2006, Judith Schwarz
“Can we know what Terri Schiavo would have wanted?”, Palliative Supportive Care. 4:129-133, 2006, Judith Schwarz, co-authored with Nina Coyle
EOLCNY has used the media extensively and has been featured on numerous radio and television shows. These include, among others, Fox News, CBS TV, Channel 2 Local News, Regional News Network TV, WABC, Aljazeera, Fox Radio, CBS AM radio, BBC, NPR, WNYC, WVOX, WFAS and WLIB. We have been periodic guests on different programs, including on the WBAI Health Styles program.
In addition, primarily as a result of the filing of the lawsuit and legislation to establish aid in dying as a right in New York, dozens of articles, op-eds, editorials and radio and TV segments have discussed the issue of aid in dying. We have had over a dozen letters to the editor published in the New York Times. We have participated in numerous radio and TV shows and have been quoted extensively. The vast majority of media coverage has been quite positive and supportive of aid in dying.
We were responsible for favorable editorials on aid in dying, after meetings with the editorial boards of the Buffalo News and Albany Times Union.
Our past activities and accomplishments as well as our current endeavors demonstrate that End of Life Choices New York is a leader in New York in the end of life field. Our leadership continues.