California Assembly Approves Right to Know End-of-Life Options Act

Assemblymember Mike Feuer asked some questions that lead to only one conclusion. He said: “In California it has been the law for many, many years that if a competent person wishes to sign a document called an advance directive of care, you can vest in someone else a whole array of choices about what will happen to you towards the end of your life. If we have had that as the law for many years now, how could it be consistent to reject this bill? Because what does this bill do? It says a patient with a terminally ill diagnosis gets to ask a doctor for what her choices are. …So the patient gets information that she wants that will enable her to, in an informed way, execute a document that for years this state has said she has the right to execute. Is it appropriate for us to say that we should have patients sign those documents without knowing what their choices are? That we should somehow keep patients uninformed?

After the vote, Barbara Coombs Lee, president of Compassion & Choices, the sponsor of the measure said: “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. “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.”

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.

“Encouraging patients and health care providers to have this conversation earlier rather than later will diminish the common desperate and heartbreaking experiences of dying patients and their families. Too often, patients end up in hospitals with a ‘managed death’ that is not what they wanted. Most dying patients want to die at home with their family. Knowing early that hospice is an excellent option for specialized care helps everyone plan for that difficult time,” said Dr.
Alan Carpenter, a retired Internist and volunteer teacher at Stanford Medical School.

At a committee hearing on the bill, Mary Stompe of Novato, whose father died
of esophageal cancer at the age of 80 testified: “There needs to be more communication about alternatives for people at the end of their life. When you have a diagnosis that you are going to die, you need to be told right away about every option that might be available to prevent needless suffering. This bill will help dying patients and their families have this information early,
when they need it the most. When my father finally received hospice care, and was given morphine and some sedation, it wasn’t enough to help end his suffering. My dad had no choice but to suffer.”

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.

In 2003, the Annals of Internal Medicine published a study in which “less than 1%[of 250 physicians surveyed] stated that they routinely offered advance care plans that specify terminal sedation instead of emergency ventilator support to patients with [terminal lung disease]; however, 98% would choose terminal sedation for themselves in similar circumstances. Clearly, patients should be able to have the course that physicians want for themselves.”

AB 2747 now heads to the State Senate for a vote.

FACTS ON AB 2747

• Terminally ill patients rely on their health care providers to give them timely and informative information on their care. Unfortunately, research shows a lack of communication between health care providers and their terminally-ill patients. For example, even though many patients benefit from being referred to hospice early rather than later, nearly two-thirds of dying Californians receive hospice services for less than one month, well below the national average. One in four hospice patients sought care during the last five days of their lives.

• 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.

• End-of-life counseling is a covered benefit under Medicare. In addition, every medical school in California is required to include curriculum in end-of-life care issues, and every physician in California is required to complete continuing education courses in end-of-life care.

• The bill requires that when an attending physician makes a diagnosis that a patient has a terminal illness; they must provide the patient an opportunity to receive information and counseling regarding all legal end-of-life care options, including hospice care, if the patient requests the information. AB 2747 puts the information and power to choose in patients’ hands.

• If a physician does not wish to comply with the patient's request for information and counseling, they must refer the patient to another health care provider and provide them with information on procedures to transfer to another provider.

• The California Right to Know End-of-Life Options Act protects and encourages a crucial conversation that neither physician nor patient may know how to broach. It gives the patient assurance to gather information and make important decisions.

Thirty years ago, California led the nation by giving people the right to express their wishes for health care in advance. It's time that we take steps to ensure that terminally-ill patients have all of the information that they need to make timely and informed decisions regarding their care.

SUPPORT

• California Association of Adult Day Services
• California Commission on the Status of Women
• California Nurses Association
• California Psychological Association
• Compassion & Choices
• Gray Panthers California