End of Life Choices New York has been playing a major leadership role to have legislation enacted in New York State to ensure that people who are terminally or seriously ill receive quality care and that their health care wishes are respected. Some relevant legislation is described below. The Palliative Care Information Act , the Palliative Care Education and Training Act and the Health Care Proxy Education law were all initiated by End of Life Choices New York (formerly Compassion & Choices of New York).
Palliative Care Information Act
The Palliative Care Information Act (PCIA), Public Health Law, Section 2997-c, effective February, 2011, is a critically important patients’ rights law and a model for the nation. 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
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.
- “Palliative Care:” Health Care treatment, including interdisciplinary end-of-life care, and consultation with patients and family members, to prevent or relieve pain and suffering and to enhance the patient’s quality of life, including hospice care.
- “Terminal Illness or Condition:” Reasonably expected to cause death within 6 months.
- “Appropriate.” Consistent with applicable legal, health and professional standards, the patient’s clinical and other circumstances ; and the patient’ s reasonably known wishes and beliefs.
- “Attending health care practitioner” a physician or nurse practitioner who has primary responsibility for the care and treatment of the patient. Where more than one physician or nurse practitioner share that responsibility, each of them has responsibility [to offer information and counseling], unless they agree to assign that responsibility to one of them. Compliance
- Offer to provide information and counseling
- Provide information and counseling directly
- Arrange for another physician, NP or professionally qualified person to provide the information and counseling;
- If unwilling to provide information and counseling, refer to another physician or NP.
- Patient is not provided with information.
- Information can be provided orally or in writing.
- Information and counseling shall be provided to a person with authority to make health care decisions for the patient if the patient lacks decision making capacity.
If you are a patient who may have a terminal illness or a health care professional working with a patient whom you believe may have a terminal illness, and an attending health care practitioner has not yet offered information and counseling, then you may want to discuss this with the attending.
- New York State Department of Health website, questions and answers and guidance for practitioners
- Hospice and Palliative Care Association of New York State, Palliative Care Information Act Resource Center, available to members, or for CD purchase for non members.
Studies Demonstrate the Need for the PCIA:
- Dying patients are not informed or sufficiently informed of diagnosis, prognosis and treatment options.
- The vast majority of dying patients in fact want to know their diagnosis and prognosis.
- The lack of physician-patient end-of-life discussions results in hospice referrals only very near death or not at all.
- EOL discussion patients have a better quality of life and better deaths and may even live longer.
- Costs are reduced.
Please also Contact Us at End of Life Choices New York for assistance.