For doctors, end-of-life issues present complex and often gut-wrenching decisions.
Last summer Medscape electronically surveyed 10,000 physicians representing all specialties. Respondents answered a series of ethics questions, including 2 related to end-of-life care, and had an opportunity to elaborate on their answers. The findings show that while physicians do their best to respond to the wishes of patients and their surrogates, they disagree on what that means.
In surveying physicians, Medscape researchers asked, "Would you ever recommend or give life-sustaining therapy when you judged that it was futile?" Nearly 5300 physicians answered the question: 23.6% said yes, they would recommend or continue to give care they knew to be futile, while 37.0% said they would not. The majority, 39.4%, said their decision would depend on the circumstances.
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Indeed, the question elicited some diametrically opposed responses. One participant responded, "That is the definition of unethical," while another noted, "Who am I to say what's futile?" Nancy Berlinger, PhD, an ethicist specializing in end-of-life issues at The Hastings Center, a bioethics research institution in Garrison, New York, says it's not surprising to hear such opposing views, even among physicians who, by definition, are universally committed to helping people.
"For a treatment option to be morally justified, there has to be a greater benefit than burden," says Berlinger, a deputy director and research scholar at the Center. She notes that pain, the discomfort of a feeding tube, or the need to move a patient from a home environment to a hospital may constitute burdens for the patient. "Physicians must constantly consider and communicate those burdens and benefits of care to their patients and surrogates."
The problem arises, she says, when the conversation shifts to gray areas. "A family member may say, 'I want you to do everything you can for Mom,' but there is no treatment called 'everything,'" Berlinger says. In the same vein, "there's no agreed upon definition of 'futile.'"
Doctors Call Upon Several Rationales
Many physicians wrote that they would never recommend such treatment but would provide it if the patient or family insisted. Berlinger criticized that rationale, noting, "They are still not acting in the patients' best interest because they are continuing to do something that could be burdensome."
Other doctors said they would honor a patient's advance directives and the wishes of his or her healthcare proxy. "This issue is more a decision for the patient in his/her living will or his/her healthcare power of attorney," wrote one respondent. Another noted, "The patient's family should be the final arbiter."
But such an approach falls short, even though it's a seemingly clear way of honoring a patient's right to self determination, notes Berlinger.
Advance care directives are documents and therefore stagnant, she says. While physicians must honor a patient's autonomy, they shouldn't confuse an advance care directive with a patient's wishes. "A living will can be extremely detailed but not match the scenario," she notes. "Patients don't have crystal balls. There are certain preferences that they might have held 5 years ago that don't apply now."