California Right to Know End-of-Life Options Act
On August 20, 2008, the California Senate passed the Terminal Patients’ Right to Know End-of-Life Options Act, AB 2747 (Berg-Levine), sending it to the Governor's desk for signature. The bill was approved by the California Assembly on May, 19, 2008, and passed both Health and Judiciary Committees in June. The Act would be the first in the nation to provide terminally ill patients with a full disclosure of, and counseling about, all available legal and ethical end-of-life care options. The Act also requires that health care providers who do not wish to comply with a particular patient’s choice must refer or transfer the patient to another provider.
“Dying patients needlessly suffer 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 – without being fully informed of their legal rights,” said Barbara Coombs Lee, president of Compassion & Choices, sponsor of the measure. “The Right to Know End-of-Life Options Act would require physicians and health care providers to provide a full range of information about options when patients request it. The Act puts the information and power to choose in patients’ hands.”
Thirty years ago, California led the nation by giving people the right to express their wishes for health care in advance. It's time to take this next step to ensure that terminally-ill patients have all of the information that they need to make timely and informed decisions regarding their care. Information and counseling regarding end-of-life care options is essential for many terminally ill patients and their families. It can help the patient weigh all of their options and make an informed decision that best meets their needs. It gives the physician an opportunity to discuss the benefits and disadvantages of all available treatments, and it can facilitate earlier access to hospice care.
Two-thirds of terminal California patients spend less than one month in hospice care, even though they are eligible for hospice upon receiving a terminal diagnosis. California patients spend roughly 21 days in hospice – well below the national average, despite the fact they are eligible to be referred for the last 180 days of life. One in four hospice patients sought care during the last five days of their lives. This low participation in hospice is largely due to a lack of information about this crucial element of end-of-life care.
The study, The Role of Chemotherapy at the End of Life: “When Is Enough, Enough?” was presented to the American Society of Clinical Oncologists. The findings confirm the belief of many advocates that keeping patients in the dark does more harm than good.
A new study reported in the Journal of Clinical Oncology (May 2008, abstract 6505) has found that terminal patients who have an end-of-life discussion with their physician are more likely to receive hospice care, less likely to enter the Intensive Care Unit, and more likely to have a Do Not Resuscitate (DNR) order. Especially striking is the finding that patients who discuss end-of-life options are not more likely to be nervous or worried than patients who do not.
The following is a list of organizations in support.
AIDS Project Los Angeles
Alzheimer's Foundation of America
American Civil Liberties Union
American Medical Students Association
California Association of Adult Day Services
California Commission on the Status of Women
California Commission on Aging
California Medical Association
California Nurses Association
California Psychiatric Association
California Psychological Association
Compassion & Choices
Congress of California Seniors
Gray Panthers California
Mendocino County Board of Supervisors
National Association of Social Workers
FAQ’s
Why is there a need for this law?
Dying patients suffer needlessly due to an appalling 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.
This bill helps dying Californians by providing them with the information they need and deserve as they navigate their end-of-life care decisions.
Bill sponsor, Assemblywoman Patty Berg, says this bill is extremely important. “It’s only right that people should know all their options before being asked to make decisions,” says Berg, D-Eureka. “It’s common sense, really.”
What would this law do?
The Right to Know End-of-Life Options Act requires physicians to provide a full range of information about options when patients request it, putting information and the power to choose in patients’ hands. The law would:
• Ensure end-of-life care information empowers patients and their family members, allowing them to choose how best to manage pain and suffering. It assists physicians, hospice workers and everyone involved with a clear understanding of the end-of-life care options available.
• Protect and encourage a crucial conversation that neither physician nor patient may know how to broach. It gives patients the ability to gather information and make important decisions.
• Improve California’s health care system. Lawmakers have the chance to fulfill the wish of an overwhelming majority of terminally ill Californians to know their end-of-life options. For example, earlier referrals to hospice care could improve terminal patients’ pain management and quality of life.
• Prevent the withholding of information. Many spend their last days in agony or in hospitals simply because their doctor never engaged them in a discussion about critical end-of-life care. In 2007, the New England Journal of Medicine published a study revealing an alarming statistic: An estimated 40 million Americans see physicians who either feel no obligation or are undecided about whether they should present all possible treatment options to patients, based upon their personal objections.
• Help realize the promise of AB 487. That groundbreaking legislation mandates physician education in pain management and end-of-life treatment.
• Increase the use of hospice. Two-thirds of terminal California patients spend less than one month in hospice care, even though they are eligible for hospice upon receiving a terminal diagnosis (six months or less to live). California patients spend roughly 21 days in hospice, despite the fact they are eligible to be referred for the last 180 days of life. This low participation in hospice is largely due to a lack of information about this crucial element of end-of-life care.
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