Another perspective on informed patient consent

<p>Commentator Ben Mattlin's struggle against his disease is heartening to all ("Severely ill should know non-death options," Sunday Forum), and his concerns about our health care system and its overworked personnel are real. However, his description of California's just-enacted Terminal Patients' Right to Know End-of-Life Options Act is inaccurate in many respects.</p><p>The Right to Know Act, co-authored by Assemblywoman Patty Berg, D-Eureka, requires physicians, upon the patient's request, to provide comprehensive information about the patient's health care options. This may include (but is not limited to) hospice care, curative treatment, withdrawal or refusal of life-prolonging treatments, symptom management to help control pain, nausea, breathlessness and fatigue and other clinical treatments used for a patient who is actively dying.</p><p>Who can defend keeping information about all his or her options from a dying person? These options do not include death with dignity, or physician-assisted suicide, as Oregon does. But Californians who are told they have less than a year to live do have choices. Not knowing what those choices are makes it impossible for dying patients to choose them. It's simple decency and basic patients' rights.</p><p>The basis of informed patient consent -- which is required for nearly all medical procedures -- puts the information and the power to choose in patients' hands. It shifts power from a condescending top-down, doctor-knows-best approach to a patient-doctor conversation. Ultimately, this will lead to patients' ability to work with their doctors to determine the best care option that fits with their values.</p><p>Patients and doctors will be encouraged to have a comprehensive conversation about the patient's prognosis and what it means for the rest of that patient's life. This includes treatment that can help the patient live his or her final days in comfort, by receiving hospice care, curative treatment, withdrawing or refusing life-prolonging treatments, symptom management to help control pain, nausea, breathlessness and fatigue, and other clinical treatments.</p><p>The act does enable the patient to request from his physician this information. It does not enable any caregiver to initiate this discussion.</p><p>Two recent studies prove the importance of such a conversation: Research published in the May issue of the Journal of Clinical Oncology found that terminal patients who have a discussion about end-of-life care with their physician are more likely to receive hospice care and a do-not-resuscitate order and less likely to enter the intensive care unit at a hospital. The study also found these patients are not more likely to be anxious or fearful than patients who do not.</p><p>Another study, published in the Journal of the American Medical Association, revealed communication between doctors and patients was crucial to ensure patients received the best treatment at the end of their lives. Researchers found many dying patients underwent rigorous cancer treatments just days before their deaths, not realizing how close they were to the end. The study revealed many doctors either failed to tell their patients how little time they had left to live, or grossly overestimated a patient's remaining time left to live.</p><p>The Right to Know Act specifically ensures patients are aware of their condition and receive the most appropriate care for their remaining time left. This would prevent them from undergoing difficult or painful procedures that will do little to extend their lives but instead keep them in more discomfort and pain.</p><p>Barbara Coombs Lee of Portland, Ore. is president of Compassion &amp; Choices, a nonprofit organization that advocates for expanded choices at the end of life.</p>