The end of lifeBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2261 (Published 26 March 2014) Cite this as: BMJ 2014;348:g2261
- Leigh Page, freelance writer, 2525 North Talman Avenue, Chicago, Illinois, USA
Increasingly, US physicians face legal risks for doing too much or too little to help patients with end of life issues. On one hand, doctors are under more pressure to hold discussions with people who are diagnosed with terminal illnesses—exploring whether they would want to stop treatment if it became ineffective. In that case, the patient would shift to palliative care, which involves pain medications and other therapies to enhance quality of life.
On the other hand, physicians may have terminally ill patients who are untreatable and want to die, but assisting in their suicide is illegal in most US states. In a few cases, physicians have been criminally convicted and sent to prison for helping a patient die.
Even talking about end of life issues can be distressing for physicians, because their overriding concern is to heal patients, said Timothy E Quill, a palliative care specialist in Rochester, New York. “When you’ve been fighting for a patient for a long time, it can be really hard to give up on treatment,” said Quill, who directs the Center for Ethics, Humanities and Palliative Care at the University of Rochester School of Medicine.
Quill said there are negative consequences, however, if physicians avoid talking about end of life issues with patients—as is often the case.1 Patients may never have the chance to choose options that could ease their deaths. And if they can’t talk about their desire for suicide, they are cut off from exploring other options, such as taking antidepressants or stronger pain medications.
Requirements to discuss end of life issues
When New York State passed a law in 20102 requiring physicians to discuss end of life options with patients diagnosed with a terminal illness, two physicians at Maimonides Medical Center in Brooklyn denounced the law in a 2011 opinion piece3 in the New England Journal of Medicine.
The new law is a “heavy-handed intrusion into the doctor-patient relationship,” wrote Alan B Astrow and Beth Popp. “New York is attempting to prescribe legislatively what should be a subtle, intimate conversation between doctor and patient that often happens over time.” Physicians have also objected to exploring the prospect of patients’ deaths before they are ready to talk about it.
But Quill said that if the conversation is postponed, patients might no longer be able to specify their needs, and then “physicians tend to go to the default, which is to order very aggressive treatment.” In fact, a 2012 study4 of cancer patients found that delaying discussions of end of life care led to more aggressive treatment during a patient’s final days.
There are signs that New York’s requirement to discuss palliative options is improving care. In a pilot initiative5 reported in October 2013, Mount Sinai Hospital in Manhattan began offering a palliative care consult to all hospitalized late stage cancer patients. Readmissions to the hospital decreased from 34% to 17% and patients’ short term mortality dropped dramatically.
Legal opinion shifts toward patients’ needs
New York is thought to be the only state to mandate end of life conversations for all terminally ill patients. California passed a milder law in 2008, which simply requires physicians to provide end of life options to patients who ask for them.6 But passing state laws is not really necessary, according to Alan Meisel, a lawyer who directs the Center for Bioethics and Health Law at the University of Pittsburgh.
The laws “probably serve a good purpose in educating patients and physicians about their options,” he said, but courts already apply the same requirements under the legal doctrine of informed consent.
Physicians are already familiar with other aspects of informed consent, such as needing to discuss a patient’s options before surgery. But in the past 25 years or so—in malpractice and other cases—Meisel said courts have extended the informed consent requirement to end of life discussions.
This shift involves a change in the informed consent standard defining what physicians need to tell patients. According to a report by the American Association of Neurological Surgeons,7 courts in many states still base the standard on what a “reasonable physician” would provide the patient, but in recent years, courts in some jurisdictions have adopted a new standard based on what a “reasonable patient” would expect to be told.
This is a significant change, because end of life patients tend to want more information about their options than many doctors think is necessary. In a 2010 study of patients with chronic kidney disease, 61% regretted their decision to start dialysis. However, less than 10% of them reported having discussed end of life care issues with their nephrologist in the past 12 months.8
When and how to talk to patients
Quill said physicians should ask about end of life options when patients are first diagnosed with a terminal disease. “If you can discern what your patient would want, then you follow their wishes,” he said. Some patients actually prefer aggressive care up until the end, and “in that case, our job as physicians is to provide aggressive care,” even if the prognosis is slim.
How the physician presents end of life options to the patient, Quill said, is crucial. “Patients tend to hear a much more optimistic outcome than what is being stated,” he said. For example, saying the patient has a 5% chance of responding can inspire hope, when it actually means that 95% of patients won’t respond at all to a treatment that might be very painful. “The doctor should also explain what ‘respond’ means,” he added. “It could mean that the patient’s life would be extended by just a few weeks or months.”
The National Hospice and Palliative Care Organization (NHPCO) offers a guide for clinicians to talk about treatment options with terminally ill patients.9 There are specific questions to ask that can reveal the patient’s real feelings, such as: “What is your biggest fear when you think about your diagnosis?”
Physicians who need assistance can contact palliative care specialists, who are usually based in academic medical centers. Quill said he and other specialists can provide palliative care to patients for physicians who have little experience with it.
Legal risks of working with dying patients
Sometimes, because they are worried about the legal implications, physicians shy away from end of life patients who don’t respond to palliative care or who want to discuss physician assisted suicide, Quill said.
When patients’ pain or other symptoms are so great that normal levels of sedation are not effective, they may be sedated to the point of unconsciousness. This raises ethical questions because these patients are not expected to return to consciousness and in time their life support will be removed. But this method, known as unconscious sedation, has gained acceptance as a last resort when other palliative options have failed.
The American Medical Association (AMA) recognized unconscious sedation in 2008. A report to the AMA’s House of Delegates noted that three quarters of internists surveyed in Connecticut found it to be appropriate in certain circumstances.10 However, Meisel said some legal risks persist. While “the overwhelming weight of legal authority holds that this is legitimate,” the legality is “not 100% certain,” he said.
Physician assisted suicide
A much riskier approach in legal terms is physician assisted suicide, which Quill has fought to legitimize though with only limited success. He was the chief plaintiff in a lawsuit arguing physician assisted suicide was a right under the US Constitution. In 1997, the US Supreme Court denied Quill’s bid and left it up to the states to decide.11
Four US states have legalized physician assisted suicide. Oregon was the only one until 2009, but since then Washington and Vermont have enacted laws allowing it and the Montana Supreme Court has accepted it.12 The practice is specifically outlawed in 39 states, but Quill reported that physician assisted suicide has gone underground, in a “don’t ask, don’t tell” environment. “When it has to be secret, you don’t have the legal protections you have in Oregon, such as getting a second opinion before you can go ahead,” he said.
In physician assisted suicide, the patient takes drugs prescribed by the physician—a crucial difference from euthanasia, in which the physician actually delivers the lethal dose. In 1999, Jack Kevorkian, already stripped of his medical license, was sentenced to prison for performing euthanasia. Quill reported that when physician assisted suicide is out in the open, it is used sparingly. While one in 50 patients talk about assisted suicide with their doctor in Oregon, it accounts for only about one in every 1000 deaths in the state, he said.
Meisel said no physician should fear just discussing assisted suicide when the patient brings it up. “You are not liable for just talking about it,” he said, adding that such a prohibition would infringe on first amendment rights.
He added that even when physicians quietly assist in suicides, they face little risk of prosecution. “These kinds of cases wouldn’t get discovered, and even if they were, most prosecutors wouldn’t want to go near them,” he said. “They would be interfering in a situation where the doctor is only doing what the patient wanted.”
Cite this as: BMJ 2014;348:g2261
Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not peer reviewed.