California Right to Know End-of-Life Options Act

ISSUE

Terminally ill patients rely on their health care providers to sharetimely and informative information on their care. Unfortunately,research shows a lack of communication between health care providersand their terminally-ill patients. For example, even though manypatients benefit from being referred to hospice earlier rather thanlater, nearly two-thirds of dying Californians receive hospice servicesfor less than one month, well below the national average. One in fourhospice patients sought care during the last five days of their lives.

Information and counseling regarding end-of-life care options isessential for many terminally ill patients and their families. It canhelp the patient weigh all of his options and make an informed decisionthat best meets his needs. It gives the physician an opportunity todiscuss the benefits and burdens of all available treatments, and itcan facilitate earlier access to hospice care.

End-of-life counseling is a covered benefit under Medicare.Additionally, California medical schools are required to includecurriculum on end-of-life care and every California physician isrequired to complete continuing education in end-of-life care.

California’s Right to Know End-of-Life Options Act

On January 1, 2009, the Right to Know End-of-Life OptionsAct became law in California (AB 2747 – Berg; Chapter 683 Statutes). The act isthe first in the nation to provide terminally ill patients with a fulldisclosure of, and counseling about, all legal treatment options, including theright to refuse unwanted treatment. When a dying patient asks, “What are myoptions?” the Act instructs the doctor to answer the question.

Why do we need this law?

Dying patients suffer needlesslydue to a lack of essential information. As a result, many spend their last daysin 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 treatmentoptions they did not think would be covered by the patient’s health insuranceplan (Health Affairs, 2003;22:190-7). The Right to Know Act helps dying Californiansby 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.

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.

Make secure online donation to help implement the California Right to Know End-of-Life Options Act.