Final Acts: Death, Dying, and the Choices We Make

Empowering Patients at the End of Life: Law, Advocacy, Policy

252 VVVVVVVVVVV Empowering Patients at the End of Life Law, Advocacy, Policy KATHRYN L. TUCKER Imagine you have a cancerous tumor growing in your neck that continues to grow even after surgery, radiation, and chemotherapy, and is spreading cancer throughout your body. Imagine that the surgery required removal of most of your tongue, so that you can barely swallow or speak, cannot eat, and are often choking on secretions. Imagine that you had to have a tube surgically implanted into your stomach to provide nutrition and hydration. Imagine that the tumor has eaten through the flesh of your neck and there is a seeping, open wound, with foul-smelling emissions. Imagine that this tumor causes severe pain, in addition to all the other symptoms, and that you must choose between taking enough medicine to control the pain and accepting the loss of alertness that accompanies such sedation, or remaining in pain but with your alertness intact. Imagine that you have been told that the location of the tumor makes it highly likely that as it grows it will breach the large artery in your neck and you will bleed to death. Imagine that your life, until now, has been one in which you enjoyed a good deal of control and autonomy. If you were in this situation, would you know what options were available to you? Options for the Seriously Ill In every state, patients who are seriously ill or dying are entitled to aggressive pain management. Guidelines for treatment of pain associated with terminal illness have proliferated.1 Medical organizations establishing standards or guidelines for pain treatment include the World Health Organization, the American Pain Society, the American Medical Association, the Agency for Health Care Policy and Research, the Federation of State Medical Boards, and the Joint Commission on Accreditation of Healthcare Organizations (JCAHO).2 These guidelines all indicate the importance of pain management as an element of medical treatment. For instance, the Model Guidelines for the Use of Controlled Substances for the Treatment of Pain state that the “principles of quality medical practice dictate that . . . people . . . have access to appropriate and effective pain relief. . . . The Board encourages physicians to view effective pain management as a part of quality medical practice for all patients with pain, acute or chronic, and it is especially important for patients who experience pain as a result of terminal illness.” If a clinician fails to provide adequate pain management, a patient or the patient’s survivors can file a complaint with the state’s medical board or bring a lawsuit for monetary damages.3 A number of such complaints and cases have been brought in recent years, bringing much needed attention to this problem. Some patients will find that taking enough pain medication to obtain relief requires that they surrender more consciousness than they are willing to, and will opt to be in pain rather than insensate. Other patients will welcome the relief of pain, despite the surrender of consciousness. The choice should be left to the patient, not made for the patient by the healthcare provider. If pain cannot be brought under control with conventional pain management , an aggressive therapy known as palliative sedation, also referred to as terminal or total sedation, is an option. This involves a physician inducing unconsciousness via intravenously administered medication and withholding artificial nutrition and hydration until death ensues days or weeks later. The patient is kept unconscious the entire time and is unaware of pain or other distressing symptoms.4 The choice for palliative sedation has been recognized in law by the U.S. Supreme Court and in U.S. medical practice and offers an option some patients consider acceptable.5 For others it might seem barbaric to linger in this way. Sometimes a medical care provider has personal, moral, or religious beliefs that impede his or her willingness to provide the care a patient chooses. For example, a significant number of physicians are opposed to palliative sedation for personal reasons and do not tell patients about or offer EMPOWERING PATIENTS AT THE END OF LIFE 253 this option.6 It is interesting to note that a survey of physicians showed that almost 100 percent would choose this if they were dying of Chronic Obstructive Pulmonary Disease (COPD), yet only 1 percent tell their patients about it.7 These conflicts are increasingly common because of the consolidation of health-care facilities involving...