The issues that EOLCNY works on, and the activities in which we engage, are about quality of health care, health care choices, and human rights, autonomy, justice and the relief of human suffering.
End of Life Choices New York is the leading organization in New York working to improve end of life care and expand end of life options, to ensure a humane and peaceful death.
Our mission: 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.
No dying person should have to endure more suffering than he or she is willing to bear. Everyone 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. 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.
End of Life Choices New York 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 eighteen years of experience and relationships with New York policy-makers, health care providers, academics and the clergy, that we continue to harness to create change. We have first-hand knowledge of our state’s health care landscape and have worked successfully in Albany to initiate and pass groundbreaking legislation to enhance end of life care.
For fifteen years we were the New York affiliate of Compassion & Choices, but in 2014 we became an independent organization. A subsequent three-year $300,000 matching grant from the Open Society Foundations for 2015 through 2017 enabled us to expand our activities and services. Of our approximately $550,000 budget, about half comes from foundations and half from individuals.Our administrative costs are quite low; about 80% of our budget directly supports our unique programs.There are several aspects to our mission:
- We engage in a variety of educational and outreach efforts to inform the public about end of life options. The general public, and even many medical professionals, have misperceptions about end of life care and are not fully aware of the choices one can make to have the best death possible. EOLCNY staff and board members have given hundreds of lectures, workshops and professional in-services on end of life issues, palliative care, pain management, advance directives, patient rights, and medical aid in dying, to thousands of professionals and lay persons.
- We advocate to legalize medical aid in dying in New York through litigation or by legislation. EOLCNY has initiated a lawsuit which is currently making its way through the system. We seek a ruling to clarify that a mentally competent, terminally ill patient has the right to obtain medicine by prescription that he or she could ingest to achieve a peaceful death. At the same time, we have initiated a bi-partisan bill in the state legislature to establish aid in dying in New York.
- We aggressively pursue legal reforms to improve pain management and palliative care. We have successfully initiated a number of laws in New York to improve end of life care, such as the Palliative Care Information Act, which in 2011 gave terminally ill patients the right to receive information and counseling about their palliative care and end of life options, including hospice. This year our efforts resulted in passage of a bill requiring continuing education for health care providers on pain, palliative care and end of life care. We have also authored proposed legislation to protect physicians who treat patients’ pain within the standard of care, to prevent reimbursement for unwanted treatment and to urge disciplinary action for physicians who do not honor the advance directives of patients at the end of life.
- We counsel individuals and families who are facing the end of life or wish to plan ahead, providing information and support on a range of end of life issues, including advance directives; talking openly about health care wishes; and locating pain specialists, hospice programs, social service agencies, disease-specific support groups and other resources. We help patients and their loved ones face the end of life with calm facts and choices of action during a difficult time. We respond to inquiries from all who contact us with questions about their end of life concerns, and there is no charge for our services. Many medical providers are reluctant to discuss end of life options, making our counseling services especially important.