(Dr. Comer is an affiliate faculty member at Indiana University Center for Bioethics, an assistant professor in the Department of Health Sciences, and an affiliate research scientist at the Regenstrief Institute. She graduated from Indiana University McKinney School of Law, where she received her J.D. with a concentration in health law. She is also a graduate of Indiana University Fairbanks School of Public Health where she received her doctorate in Health Policy.
This article was published by Harvard Medical School Center of Bioethics and is used here with permission.)
For the first time, many physicians, regardless of specialty, are being forced to consider what the standard of care will be for informing patients about “assisted suicide” or “physician aid-in-dying ” (PAD). The American Medical Association (AMA) Code of Medical Ethics does not condone physician participation, calling the practice “fundamentally incompatible with the physician’s role as healer.” As an alternative to PAD, the AMA advocates aggressive multidisciplinary interventions including emotional support and adequate pain control.
Although the AMA is opposed to the practice of PAD, a 2010 survey of more than 21,000 medical professionals found that the majority of the doctors surveyed (54 percent) favored a patient’s right to physician aid-in-dying. As of this writing, PAD has been legalized or available through court ruling in seven states (California, Colorado, Hawaii, Oregon, Montana, Vermont, Washington) and the District of Columbia; New Jersey is passing legislation following suit in August, followed by Maine in September. (Editor: New Mexico has passed a MAID law). As more states legalize PAD and the AMA continues to affirm it to be unethical, many physicians will have to decide whether to follow the ethical cannon of their profession or allow patients to exercise their rights under the law. In light of the rapid expansion of PAD as an end-of-life option, the medical community needs to determine an ethical standard for informing patients about the choices available to them.
Diagnosed with amyotrophic lateral sclerosis (ALS), Craig Ewert made the decision to choose how he would spend his final days, and ultimately end his life. Mr. Ewert and his wife traveled to Switzerland where, with the legal assistance of a physician, he died at age fifty-nine by consuming a lethal dose of pentobarbital. Prior to his death, Mr. Ewert stated, “At this point, I’ve got two choices . . . if I go through with it, I die, as I must at some point. If I do not go through with it, my choice is essentially to suffer and to inflict suffering on my family and then die—possibly in a way that is considerably more stressful and painful than this way (physician aid-in dying). So, I’ve got death, and I’ve got suffering and death. You know, this makes a whole lot of sense to me.”
Mr. Ewert’s story is not unique. Since 1997, over 2,000 Americans have made the decision to end their lives with the help of a physician, rather than to suffer during the end stages of terminal illnesses. Twenty years ago, PAD was illegal in all fifty states. In 1997, Oregon became the first state to legally allow terminally ill patients the option to hasten death by taking a prescription medication. Many more states have attempted to pass legislation legalizing PAD, including a Ballot initiative in Massachusetts. However, no standard of care yet exists to guide physicians and patients during the medical decision-making process about the option of physician aid in dying at the end of life. This poses an ethical quandary for providers.
Enshrined in the principle of informed consent are two ideas. First is the patient’s legal right to make the decisions that affect his or her medical care. Second, the patient has a right to know about the options available from which to choose. Because most patients are not experts in medical matters, the physician is obligated to disclose relevant information so the patient can make an “informed” decision about his or her treatment. Traditionally, the information that a physician has a duty to disclose has been based on the customs and traditions of the community. Essentially, physicians are responsible to disclose only information about care and treatment options that are customarily disclosed within the physicians’ and patients’ community. In the case of PAD, in places where it is not legal, physicians have not customarily informed patients of this option. As more states legalize PAD and the practice becomes more ethically accepted, it is important to determine a standard of care to guide physicians.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
According to a 2003 National Institute study “Federal and state policymakers in the United States are only beginning to attend to the roles that Medicare and Medicaid play as the dominant sources of financing of medical and long-term care for people during their last year of life, roles that reaches far beyond the hospice benefit. However, other than a few small efforts, Medicare and Medicaid are not focusing in a major way on using their market power to encourage or force changes in the way beneficiaries die.” Twenty years later much still needs to be done to institute a national end-of-life standard of care.