End-of-life bill empowers sick patients

Ben Mattlin’s struggle against his disease is heartening, and his concerns about our healthcare system and its overworked personnel are real. However, his description of the just-enacted Terminal Patients’ Right to Know End-of-Life Options Act in his Oct. 19 Opinion piece is misleading in many respects.

The Right to Know Act requires physicians, at the patient’s request, to provide comprehensive information about the patient’s healthcare 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 dying.

Who can defend keeping information about all options from a dying person? These options do not include the kind of death with dignity allowed under Oregon law (which Mattlin implicitly supports when he says “it is true, of course, that many severely ill people would like to accelerate an end to their suffering. They see no point in preserving a troubled, limited existence. I do not begrudge those who would find solace in suicide.”)

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 a matter of simple decency and basic patients’ rights. 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.

Under the Right to Know Act, patients and doctors will be encouraged to have a comprehensive conversation about the patient’s prognosis and what it means for the rest of the patient’s life. This includes treatment that can help the patient live his or her final days in comfort. While the act enables patients to request this information from their doctors, it does not instruct any caregiver to initiate this discussion.

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 physicians are more likely to receive hospice care, more likely to have a “do not resuscitate” order and less likely to enter a hospital’s intensive care unit. The study also found these patients are not more likely to be anxious or fearful than patients who do not discuss end-of-life options with their doctors.

A study published recently in the Journal of the American Medical Assn. revealed that communication between doctors and patients was crucial in ensuring that people received the best treatment at the end of their lives. Researchers found that many dying patients underwent rigorous cancer treatments just days before their deaths -- not realizing how close they were to the end. The study revealed that many doctors either failed to tell their patients how little time they had left to live or grossly overestimated a patient’s remaining time by as much as 350%.

The Right to Know Act specifically ensures that patients who ask will become aware of their condition and receive the most appropriate care for whatever time they have left. This would prevent them from undergoing difficult or painful procedures that will do little to extend their lives but keep them in more discomfort and pain.

Barbara Coombs Lee is president of Compassion and Choice, a nonprofit organization that focuses on care and choice at the end of life.