“Right to Know” Legislation
In 2009 Senator Linda Lopez introduced SB1311 concerning the right to know about end of life options, based on similar legislation passed in California in 2008.
This legislation would require a health care provider, upon request, to provide information and counseling regarding legally available treatment options to patients diagnosed with a terminal illness. The bill also stipulated that if a health care provider does not wish to comply with the patient's request for information the provider shall refer the patient to another provider who will do so.
"Patients rely on information from health care professionals; they should have access to full information regarding their condition and treatment options," said Senator Lopez. "Individuals who are terminally ill should have the right to be informed about their end of life care choices to make informed decisions."
In 2013, Senator Lopez introduced SB1304 which also concerned the right to know about end of life options, based on similar legislation passed in New York in 2012, about which a detailed FAQ is available. See also the 2013 article New York Takes the Lead on Palliative Care.
SB1304 would require attending physicians or nurse practitioners to offer to provide information about palliative care and end-of-life options available to terminally ill patients, empowering patients to make choices consistent with their desires, values and beliefs.
The bill would:
- Encourage honest and open patient/physician discussion about diagnosis, prognosis, and treatment options for end-of-life care.
- Empower the patient to make informed health care decisions.
- Facilitate possible earlier admission to palliative care and hospice, resulting in improvement in pain levels, treatment of symptoms, and quality of life.
Studies confirm that in many cases on the part of physicians:
- There is a reluctance to discuss diagnosis and prognosis.
- There is an avoidance of discussing dying which is an impediment to care and resolution.
- They are not always honest with survival estimates for cancer patients and with disclosing risks of end-stage cancer treatment.
- Hospice referrals are often occurring late.
and on the part of patients:
- Fear of pain and inadequate symptom management can be reduced through communication and clear decision making with their physician.
- The majority want as much information as possible regarding their diagnosis and prognosis, even if it is terminal. They want to know the truth.
- Patients should be provided best available advice.
- Patients receiving honest information about their condition as death approaches and having time to prepare for life's end are key aspects of quality end-of-life care.