I. The Need for Legislation

The Right to Know End-of-Life Options Act ensures that terminally ill patients can receive counseling about all legal end-of-life (EOL) care options in the state. This law is necessary for two important reasons. First, it encourages patients to ask for and receive information from their health care providers regarding EOL options. Second, it will address some providers’ reluctance to inform patients about EOL options.  Research reveals that some providers do not share information about these options for a variety of reasons, including the objection to certain practices for personal or religious reasons. 

The lack of communication with respect to EOL preferences extends to the desire not to receive CPR, further illustrating the problem. In one study, less than one-fourth of patients had discussed their preferences for CPR with their provider (1).  Even when providers discuss these options with patients, there is often a great deal of discordance between the patient-provider discussion (2) and the patient’s actual desires (3).  

In places where there is significant public education and media discussion regarding end-of-life options,  patients often still don’t know their legally available EOL options (4). They are often reluctant to initiate conversations with their providers (5). In short, informed consent is a myth in the context of EOL care. Too often patients and their families don’t receive sufficient information or don’t have enough time to consider palliative options.

In particular, two medically and ethically appropriate options for dying patients are not widely discussed: One is palliative sedation,  the use of medication to induce sedation in order to relieve a dying patient’s severe distress when other aggressive measures are ineffective (6).   The other is Voluntary Stopping Eating and Drinking, referred to as VSED, the option to forgo food and fluid, while receiving supportive comfort care until death arrives (7).  Both Palliative Sedation and VSED are accepted by current law and medical practice norms in every state (8).  Nevertheless, a significant percentage of physicians refuse to provide or refer patients for palliative sedation on "conscience" grounds (9).   A recent survey of hospitals found that while nearly 100% of patients want palliative sedation for themselves if dying of obstructive lung disease, less than 1% of those hospitals informed patients about this option (10).

When a dying patient is suffering in the final stages of a terminal illness, they should have counseling available that includes a full range of information about EOL care options. These options include the continuation of disease targeted care, hospice care, aggressive pain management, palliative sedation and VSED.  The patient is then empowered to act autonomously with all information to make their own medical decision. 
 

II. The Experience in California

A Right to Know EOL Options Act was introduced in the California Legislature in 2008 (AB 2747,Berg, Chapter 683). The initial bill entered in January listed specific legal treatment options available to patients. These included aggressive pain management, hospice, VSED, and palliative sedation. 

Click here to read the bill as introduced.»


Over the course of the legislative process, amendments were made to delete the list of specific interventions in order to end objection to the explicit mention of VSED and Palliative Sedation. Requirements were added stating that patients receive “comprehensive counseling” on all legal EOL options upon request.. Primary opponents included Catholic organizations, Right to Life organizations and portions of the Disability community. Support for the bill included state and national associations of doctors, psychologists, psychiatrists, registered nurses, physician assistants, social workers, senior groups among others.

Click here to read fact sheets developed for use in the legislative process.»

Click here to read the letters in support of the legislation.»

Click here to read the testimony of witnesses in support of the bill.»

Click here to read the California Dept of Public Health letter on Right To Know to all health facilities in the state.»

Upon final voting, most Democrats supported and all Republicans opposed. Many legislators understood the need for comprehensive counseling and information based on personal experience or that of family members. Professional lobbyists and media consultants combined with a motivated and committed legislator were crucial to the success in California.

The bill’s movement and enactment enjoyed significant media coverage. 

Read the press coverage here.»

The bill was passed and signed in to law by a Republican Governor in 2008 (11).

Click here to read the measure as enacted.»

III. Commentary on the Law as Enacted

Leading palliative care experts have commented favorably upon the bill. Dr. Charles von Gunten, Provost of the Institute for Palliative Medicine at San Diego Hospice, said,,   “All Californians should have access to the best care possible near the end of life. That's the purpose of this bill (AB 2747). It is a breakthrough in relationships between dying patients and their physicians. This promotes the best in medical care.” 

IV. Recommendations

'Right to know end-of-life options’ legislation is good policy. Based on what transpired in California, the wiser course appears to be a measure calling for comprehensive counseling, rather than listing interventions. This measure can dovetail with POLST programs by ensuring that the physician’s order regarding life sustaining treatment is based on a fully informed patient decision.

Read C&C President Barbara Coombs Lee's OpEd: Another Perspective On Informed Patient Consent»

Read C&C President Barbara Coombs Lee's OpEd: End-Of-Life Bill Empowers Sick Patients»

Bibliography

(1) Hofmann, et. al, Patient Preferences for Communication with Physicians about End-of-Life Decisions, 127 Annals Int. Med. 1 (1997); see also Billing, Recent Advances: Palliative Care, 321 BMJ 555 (2000); The SUPPORT Investigators, A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT), 274 JAMA 1591 (1995).

(2) Desharnais, et. al., Lack of Concordance between Physician and Patient: Reports on End-of-Life Care Discussions, 10 J. Palliative Med. 728 (2007).
 
(3) Golin, et. al, A Prospective Study of Patient-Physician Communication about Resuscitation, 48:5 J. Am. Geriatrics Soc’y (2000).

(4) Silveria, et. al, Patient’s Knowledge of Options at the End of Life: Ignorance in the Face of Death, 284 JAMA 2483 (2000).

(5) Curtis, et. al, Why Don’t Patients and Physicians Talk about End-of-Life Care?  Barriers to Communication for Patients with Acquired Immunodeficiency Syndrome and Their Primary Care Clinicians, 160 Arch. Intern. Med. 1690 (2000).

(6) Z. Schuman et. al, Implementing Institutional Change: An Institutional Case Study of Palliative Sedation, 8 J. Palliative Med. 666 (2005).

(7)  J. Schwartz, Exploring the Option of Voluntarily Stopping Eating and Drinking within the Context of a Suffering Patient’s Request for a Hastened Death, J. Pall. Med., Vol. 10, No. 6, pp. 1288-1297; (2007)Quill & Byock, Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluid, Position Paper: American College of Physicians – American Society of Internal Medicine (2000

(8) Id.; See also, American Medical Women’s Association, Position: Aid in Dying, available online at http://www.amwa-doc.org/index.cfm?objectId=242FFEF5-D567-0B25-585DC5662AB71DF9 (2007); Schuman (2005); B. Lo, Palliative Sedation in Dying Patients, 294 JAMA 1810-16(2005); Rousseau, Terminal Sedation In The Care Of Dying Patients, 156 Archives of Internal Medicine 1785 (1996).

(9) Curlin et. al, Religion, Conscience, and Controversial Clinical Practices, 356 New Eng. J. Med. 593 (2007); Quill & Byock (2000).

(10) "When we presented (a case of a patient w/terminal lung disease) at the hospitalist conference, less than 1% of the clinicians stated that they routinely offered advance care plans that specified terminal sedation instead of emergency ventilator support to patients with severe obstructive lung disease; however, 98% would choose terminal sedation for themselves in similar circumstances J. Lynne, et. al, Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering, Ann. Intern Med. 2003;138:812-818.

(11) CALIFORNIA CODES, HEALTH AND SAFETY CODE SECTIONS 442-442.7