California Right to Know End-of-Life Options Act
On January 1, 2009, the Right to Know End-of-Life Options Act became law in California (AB 2747 – Berg; Chapter 683 Statutes). The act is the first in the nation to provide terminally ill patients with a full disclosure of, and counseling about, all legal treatment options, including the right to refuse unwanted treatment. When a dying patient asks, “What are my options?” the Act instructs the doctor to answer the question.
Why is this law needed?
Dying patients suffer needlessly due to a lack of essential information. As a result, many spend their last days in agony. Too many patients make the most important decision of their lives –how they will live their final days – uninformed of their legal options.Thirty-one percent of U.S. physicians withheld information about treatment options they did not think would be covered by the patient’s health insurance plan (Health Affairs, 2003;22:190-7). The Right to Know Act helps dying Californians by arming them with information necessary to negotiate their care decisions.
The Right to Know End-of-Life Options Act:
- Empowers patients. Disclosure of diagnoses improves quality of life for the terminally ill, making them less likely to spend their final weeks in intensive care, on breathing machines, or subjected to resuscitation efforts. It also makes them less likely to receive early hospice referrals (Journal of the American Medical Association 2008;300(14):1665-1673). Armed with the right information, patients are empowered to make their own informed decisions about their treatment.
- Protects and encourages a crucial conversation. A study found that only 16% of oncologists discuss a patient’s terminal prognosis, if asked (Journal of Clinical Oncology.2008.17.2221). AB 2747 gives patients the ability to gather information and make important decisions. Patients feel empowered by participating in treatment decisions, and want doctors to communicate about their treatment options (Annals of Internal Medicine. 2000 132:10 825: 825-32.)
- Improves California’s health care system. The overwhelming majority of terminally ill Californians want to know their end-of-life options. This knowledge could improve terminal patients’ pain management and quality of life. AB 2747 will lead to earlier referrals to hospice care. Two-thirds of dying Californians receive hospice services for less than one month, well below the national average. One in four hospice patients received care only the last five days of life.
This bill serves as a national model for patients to receive the necessary information and power to influence the manner of death. It shifts patient/physician communication from a paternalistic model to a cooperative one. A duty to share information enables patients to work with their doctors to determine the option that matches their values and desires.
Read C&C President Barbara Coombs-Lee's op-ed: Another perspective on informed patient consent.
Read C&C President Barbara Coombs-Lee's op-ed: End of life bill empowers sick patients.