With the passage of the End of Life Option Act in 2016, California became the sixth U.S. state (plus the District of Columbia) to allow physicians to help seriously ill patients end their lives by prescribing a lethal dose of medication.
However, as these so-called aid-in-dying laws are enacted or considered in many areas of the country, hospitals and physicians continue to grapple with the ethical and clinical implications.
“The End of Life Option Act provides a legal option for patients but offers no funding or specific rules for putting it into practice,” said Elizabeth Dzeng, MD, PhD, a hospitalist and ethicist at the University of California, San Francisco (UCSF). “When a patient makes a request, it isn't just about giving them a drug—it also requires significant time by physicians to provide intensive symptom management and emotional and social support.”
Early experience with the California law highlights some of the challenges, said Stephanie Harman, MD, medical director of palliative care and an ethicist at Stanford University School of Medicine in Palo Alto, Calif., who coauthored a perspective in the July 2017 JAMA Internal Medicine.
For example, the law allows individual hospitals and physicians to opt out of prescribing lethal doses of medication, which many have done. The Department of Veterans Affairs, Catholic health systems, and some California hospice systems, along with many physicians, have said they will not participate.
Even when physicians agree with the law itself they may opt out of prescribing because of the time and effort involved, including following legal guidelines and arranging multiple visits with patients and families, noted Dr. Harman. That places a greater burden on the physicians who opt in and the institutions caring for patients who want the medication but can't get it from their own doctors.
“This happened so suddenly in California that we are spending much of the first year determining how to react and how we feel about participating,” said Jessica Zitter, MD, a critical and palliative care specialist at Highland Hospital in Oakland, Calif., and author of “Extreme Measures: Finding a Better Path to the End of Life.” “If we don't have a plan for how to proceed and places for people to go, the concern is that we've created a right without access.”
What the law requires
Certain rules and requirements are common to all states that have passed aid-in-dying legislation. They include making participation voluntary for physicians and hospital systems; requiring that patients be diagnosed with a terminal illness and have a prognosis of six months or less to live; assessing patients for mental competence; ensuring access to palliative care and hospice; and counseling patients about alternatives.
In addition, patients must make two oral requests to a physician 15 days apart, followed by a written request. Some laws also impose a 48-hour waiting period before picking up the prescribed medication.
According to data collected so far in Oregon—the first state to pass an aid-in-dying law—many patients express interest but very few follow through with taking the lethal dose. Fewer than 1% of the state's residents and licensed physicians participated over the past two decades, according to a report in the Oct. 17, 2017, Annals of Internal Medicine.
Specifically, 1,857 residents received lethal prescriptions under the Death with Dignity Act and 1,179 (64%) died as a result between 1998 and June 2017. The number of physicians who wrote prescriptions under the Act increased from 22 in 2000—when data began to be collected—to 102 in 2016, representing 0.6% of all physicians licensed in Oregon.
The authors note that the majority of participating patients had some college education and were diagnosed with cancer or amyotrophic lateral sclerosis, allaying concerns that the law would disproportionately affect patients with less formal education or low-income patients. In addition, most patients were enrolled in hospice, suggesting that they had access to quality end-of-life care.
However, the authors identified several worrisome trends. For example, some patients cited pain management as a motivating factor in their decision to take the medication, and there was a trend over time toward fewer patients receiving psychological counseling or having health care professionals present at the time of death.
One potential problem is clinicians focusing too heavily on the process leading up to writing a prescription compared to what happens after, the authors wrote. For example, there are no requirements for a physician to follow or reassess patients after a prescription is written or to be present when it is taken.
In states where aid in dying is not legal, such as New York, hospitalists should be aware of other legally permitted last-resort options, including withdrawing life support, noted Timothy Quill, MD, MACP, professor of palliative care at the University of Rochester in New York. Other permissible, although somewhat controversial, options include palliative sedation and voluntarily stopping eating and drinking.
“We actively care for the dying and work with them to find the best approach to care,” said Dr. Quill. “Toward the very end, we explore the full range of ‘last-resort’ options and try to find the least harmful way to help patients who are ready to die.”
While physician-assisted dying may be gaining acceptance, the country's largest medical professional societies—including ACP and the American Medical Association—remain opposed on ethical grounds.
Ethical arguments against legalization outweigh individuals' desire to control when and how life will end, stated an ACP position paper published in the Oct. 17, 2017, Annals. Such laws erode trust between physician and patient, the authors contended, and fundamentally alter the physician's role as healer and comforter.
“The principle of patient autonomy is critical and must be respected, but it is not absolute and must be balanced with other ethical duties and principles,” said Jack Ende, MD, MACP, President of ACP. “Physician-assisted suicide asks physicians to breach both the general duties of ‘first, do no harm’ (nonmaleficence) and to act in the patient's best interests (beneficence), and also the specific prohibition on physician-assisted suicide that has been a tenet of medical ethics since Hippocrates. Proponents of physician-assisted suicide have not offered strong enough arguments to change that.”
When confronted with a request for physician-assisted death, the authors wrote, physicians should go through a 12-step process that involves thoroughly discussing patients' goals of care, explaining their right to refuse treatments, and making them aware of other options, such as palliative and hospice care. Providing this type of compassionate support will likely result in patients withdrawing their request for physician-assisted suicide, they added.
But what if that doesn't happen and patients persist in their requests? Faith Fitzgerald, MD, MACP, has continued to focus on the palliative care she can offer her patients at the end of life when they have inquired about aid in dying. She opposes physician-assisted suicide, seeing it as a violation of her Hippocratic oath. “I have been asked and forgiven by my patients for refusing, as it assures them that I keep my promises,” said Dr. Fitzgerald, who is a professor of medicine at the University of California, Davis. She advises physicians facing such requests to promise to make patients comfortable. “And then be sure you do that,” she added.
In an editorial published in the same issue of Annals, Dr. Quill and coauthors Robert Arnold, MD, FACP, and Stuart Youngner, MD, offered a differing view. They maintain that “all legally available last-resort options should be explored” and that physicians who choose not to provide aid in dying in states where it is legal should assist their patients in finding a clinician who will comply with their request.
“Given the rapidly changing legal environment with regard to physician-assisted suicide and voluntary active euthanasia, we are concerned that concluding a guideline by stating ‘physicians should not do this' is a problematic public health response,” the editorialists wrote.
Simply opposing such laws might also prevent physicians and hospitals from creating and sharing policies and best practices, said Dr. Quill and colleagues. However, Dr. Ende noted that simply setting up formal procedures around a practice does not address its ethics.
“ACP opposes the legalization of physician-assisted suicide because it raises ethical, clinical, policy, legal, and other concerns,” said Dr. Ende. “Also, research has found safeguards and controls in jurisdictions where physician-assisted suicide (and euthanasia) are legal are not always followed and concerns are raised about underreporting.”
“Although the language of rights is sometimes invoked, the U.S. Supreme Court has specifically ruled that there is no right to physician-assisted suicide. States are permitted to legalize it, and a few have done so. But ACP believes legalization is the wrong approach and that physician-assisted suicide is a kind of control over death that is outside the goals and scope of medicine,” said Lois Snyder Sulmasy, JD, director of ACP's Center for Ethics and Professionalism. “Instead, the physician's role is to be an advocate for the patient, to educate the patient and to work in partnership with and accompany the patient. The patient is the expert in his or her goals of care and preferences; but the physician is the—hopefully, trusted—expert in medicine who knows how an illness will unfold. Physicians have an ethical duty to provide good palliative and hospice care, and we have the capability to do that better now than ever before—we need to do it.”
Ethical questions notwithstanding, critics and supporters generally agree that aid-in-dying laws are drawing needed attention to the fears and uncertainties of terminally ill patients and families.
“The profound interest in these laws is a reflection not of a widespread desire to hasten death but of the community's demand for more control over what happens at the end of life,” said Dr. Zitter. “As medical professionals, we need to answer that request by doing a better job of addressing the needs of all dying patients.”
For hospitalists, the most important message is to engage with patients who ask about the law, said Dr. Harman.
“When patients make a request for aid in dying, it's a gateway to a conversation regarding end-of-life care and exploring why they're asking,” she said. “They may still want to pursue their request, and we have an opportunity to alleviate their suffering along the way.”