I. The Need for Legislation

The Right to Know End-of-Life Options Act has been enacted in California, CALIFORNIA CODES, HEALTH AND SAFETY CODE SECTIONS 442-442.7, and should be replicated and expanded. It 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 the reluctance of some health care providers 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. One recent study revealed that only 31 percent of patients with advanced cancer at the end of life had had discussions with physicians about end-of-life care. Patients who had EOL conversations had significantly lower costs in their final week of life, over $1,000 less; more importantly “higher costs were associated with worse quality of death.” (1)

Additionally, 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 (2).  Even when providers discuss these options with patients, there is often a great deal of discordance between the patient-provider discussion (3) and the patient’s actual desires (4).  

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 (5). They are often reluctant to initiate conversations with their providers (6). 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 percent of patients want palliative sedation for themselves if dying of obstructive lung disease, less than 1% percent 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 Benefits of End of Life Discussions (and Legislation to ensure they take place)

When such discussions take place there are enormous benefits. According to "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment, (11) "End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment."

The study, by a group of Boston researchers, set out to "determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions." Three hundred thirty-two advanced cancer patients were followed from the time they were enrolled until they died (an average of 4.4 months), and their caregivers' psychiatric illnesses and quality of life were assessed approximately six months later.

Of the patients, 123 reported in their baseline interviews at the beginning of the study that they had end-of-life discussions with their physicians. Those discussions were not associated with an increased incidence of major depressive disorders or with more worry, nor were there associations "between end-of-life discussions and patients' self reported sociodemographic characteristics, insurance status, cancer type, relationships with physicians, religiousness, or social support."

The EOL discussion patients were, however, "more likely to accept that their illness was terminal (52.9 percent vs. 28.7 percent), prefer medical treatment focused on relieving pain and discomfort over life-extending therapies (85.4 percent vs. 70.0 percent), and have completed a do-not-resuscitate order (63.0 percent vs. 28.5 percent)." They also were less likely to be on mechanical ventilators, to be resuscitated, or to be admitted to the ICU. They were "more likely to be enrolled in outpatient hospice for more than a week (65.6 percent vs. 44.5 percent)."

Those patients who had aggressive medical interventions had a worse quality of life in their final week, and that quality decreased as the number of aggressive therapies increased. In contrast, those patients who were enrolled in hospice had an improved quality of life the longer they were in hospice care, "except for patients who received less than a week of services."

III. 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. Proposed legislation is pending in New York and other states.

References

(1) Zhang, et al,  Health Care Costs in the Last Week of Life
Associations With End-of-Life Conversations, Arch Intern Med 2009;169(5):480-488.

(2) 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).

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

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

(6) 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).

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

(8)  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)

(8) Id.; Approved by American Medical Association, July 2008, 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 Arch of Int Med 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) Wright, A.A., Zhang, B. & Ray, A. et al. Associations Between End-of-Life Discussions, Patient      Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA 2008;300(14):1665-1673