Definitions

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.

Resources

New York State Department of Health information on Palliative Care

Palliative Care Information Act - PCIA

EOLCNY 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. 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.

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

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.

If you are a patient who may have a terminal illness or a healthcare 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.

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.
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