Legislating patient-care protocols
By Ben A. Rich, J.D., Ph.D., UC Davis School of Medicine Bioethics Endowed Professor
California continues to be in the vanguard of states seeking to shape the practices of health-care institutions and professionals through legislation despite the consternation this approach engenders, particularly among physicians. In 2008, three bills were enacted that have the potential to significantly impact patient care, particularly for patients with life-threatening conditions. Each raises relevant ethical issues and/or purports to address ethical issues.
Physician orders for life-sustaining treatment (AB 3000)
Conceptual development of Physician Orders for Life-sustaining Treatment, or POLST, began in 1991 with work at the Center for Ethics in Health Care at the Oregon Health and Sciences University. Since then, varieties of the POLST paradigm have been adopted formally on a statewide basis in Oregon, Washington, New York, Virginia and West Virginia. With the enactment of Assembly Bill 3000, effective this past January 1, California joins that list.
As the name indicates, POLST is a physician's order. However, the document also must be signed by the patient or the patient's health-care decision-maker/legal representative. The purpose of POLST is to provide documentation of the patient's preferences regarding life-sustaining measures, such as cardiopulmonary resuscitation (CPR); intubation and mechanical ventilation; artificial nutrition and hydration; and artificial nutrition and hydration that will accompany the patient from one health-care setting to another. It also ensures that the level of care received is consistent with that document. While such matters also may be addressed through the California Advance Health Care Directive form, POLST is not an advance directive and is not intended to replace such forms, particularly with regard to designating a health-care proxy. The POLST initiative has advanced without any real controversy in part because it fosters and reflects the prevailing norm of shared decision-making between patient and physician.
Terminal patients' right to know End-of-Life Options Act (AB 2747)
Patients with terminal illness face many daunting challenges and arduous decisions concerning disease-directed therapies and palliative measures.
— Ben Rich
Patients with terminal illness face many daunting challenges and arduous decisions concerning disease-directed therapies and palliative measures. To successfully navigate our convoluted health-care system and pursue goals that are reasonable — given the patient's circumstances and consistent with their personal values and priorities — detailed and accurate information is necessary. Numerous studies reveal that patients and their families often do not receive such information in a timely manner. Legislation sponsors sought to establish a requirement that whenever a patient is diagnosed with a terminal condition, his/her physician has an obligation to proffer information on the full range of options available. The patient then has the option to decline the information or defer it to a later time of his or her choosing. Among other aspects, the California Medical Association (CMA) opposed the imposition of a legal mandate on physicians to initiate these discussions. When, after many modifications of the bill's provisions, the physician's obligation was limited to responding to patient-initiated questions about end-of-life care options, the CMA withdrew its opposition.
As the legislation now reads, when a patient with a terminal condition expresses a desire to receive information and counseling about the options for care and treatment, the information to which he or she is entitled includes the prognosis with and without disease-targeted therapy, the right to refuse or discontinue treatment, the right to pursue disease-targeted therapy with or without concurrent palliative care, the right to comprehensive pain and symptom management and/or enrollment in hospice, and the right to execute a health-care directive. The adopted version of the bill also recognizes a physician's right to decline to provide this information and refer the patient to another physician who is prepared to respond fully to the patient's questions.
Earlier versions of the bill contained much more specific references to the disclosing of a terminal patient's right to receive palliative sedation for intractable pain and suffering and to voluntarily stop eating and drinking as a means of hastening death. Both of these options remain controversial in some circles inside and outside the health professions, and passage of the bill required considerable modification of the provisions relating to these practices.
There is continuing concern within the medical community whether such legislation mandates a form of "information dumping" that precludes the physician from sensitively discussing options at the most appropriate time and in a manner that takes into account the patient's psychological and cultural sensitivities.
Hospital brain-death policy (AB 2565)
In the Winter 2008 issue of UC Davis Medicine we considered brain death in the context of determining death for purposes of solid organ transplantation. AB 2565 amends the California Health and Safety Code to require general acute-care hospitals to adopt a policy providing family or next of kin with "a reasonably brief period of accommodation" from the time that brain death is declared until cardiopulmonary support is discontinued.
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The bill further provides for prior notice of the policy's terms when feasible and for reasonable accommodation of any special religious or cultural practices or concerns of the patient or family associated with determination of death by the prevailing wholebrain criteria.
Recently a declaration of brain death in the case of a child at Children's National Medical Center in Washington, D.C., was reported in the national media. Motl Brody, a 12-year-old boy with terminal brain cancer, was declared brain dead on Nov. 4, 2008. His parents, Hasidic Jews from New York City, went to court seeking an order requiring the hospital to continue full support on the grounds that their faith does not recognize brain death. On Nov. 15, while the legal proceedings were pending, the boy's heart stopped beating and he was declared dead by traditional cardiopulmonary criteria.
Interestingly, while New York recognizes a limited right of conscience in its criteria for determining death, the District of Columbia does not. California's new law requires that hospitals provide reasonable accommodation for families of brain-dead patients to come to terms with the patient's death and incorporate that clinical fact into their religious or cultural beliefs and practices. It would probably not be interpreted to create exceptions to this criteria for the determination of death in cases such as that of Motl Brody.