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Providers have so many myths and misconceptions about end-of-life care "that it’s hard to know where to begin," says Alan Meisel, JD, Dickie, McCamey & Chilcote professor of bioethics and director of the Center for Bioethics and Health Law at University of Pittsburgh (PA).
Health care providers aren’t to blame for having misunderstandings about what the law requires, adds Meisel, as "it’s complicated, and it’s not their primary professional concern."
"Expecting health care providers to know all the ins and outs of end-of-life law is no more realistic than expecting even educated lay people to know sophisticated details of medical care, or how their cars operate, or any one of the large number of other complicated areas in a complex world," he says.
Here are some common misconceptions held by providers regarding end-of-life care:
• Providers may believe that the termination of life-sustaining treatment is murder or manslaughter, euthanasia, or aiding suicide.
As long as termination of life-sustaining treatment is done with proper informed consent — from a patient who possesses decision-making capacity or from the surrogate of a patient who lacks decision-making capacity — "health care professionals who participate in it are not acting illegally or unethically," says Meisel.
• Providers may not realize that close family members — and sometimes others — have the legal authority to make decisions for a patient who lacks decision-making capacity, even without appointment by a court as a guardian.
Most states now have a statute designating the order of priority of relatives and others to make decisions for such patients.
"Only when there is some conflict among potential surrogates, no one to serve as surrogate, or a potential surrogate whom health care providers believe not to be acting in the patient’s best interest, does a court-appointed guardian need to be sought," says Meisel.
• Nursing homes are frequently reluctant to permit patients who can’t swallow not to have a feeding tube, because they believe that federal and state regulations requiring that they provide patients with adequate nutrition require feeding tubes.
"In this conclusion, they are definitely wrong if the feeding tube has been declined by a competent patient or by the legally authorized surrogate of a patient who lacks decision-making capacity," says Meisel.
The U. S. Supreme Court — and some state courts — have ruled that feeding tubes are medical treatment, and that they can be withheld or withdrawn on the same basis as any other form of medical treatment.
This is consistent with the position statements of many associations of health care professionals, including the American Medical Association, notes Meisel.
"And as Justice Sandra Day O’Connor observed, it’s not even necessary to classify feeding tubes as medical treatment in order to allow for their rejection," says Meisel. "This is because any nonconsensual interference with a person’s body — which a feeding tube is — is a legal wrong."
The official position of Catholic bishops in the United States, notes Meisel, is that both Catholic and non-Catholic patients in Catholic health care institutions must have a feeding tube if they are unable to be adequately fed orally, unless they are "actively dying."
"Although there is some judicial authority that a patient who rejects a feeding tube has the right to remain in the facility even if it violates the facility’s policy, this matter is still largely unresolved," says Meisel.
• Providers have misconceptions about terminal sedation and double effect. When a feeding tube is removed — or not placed in a patient who can no longer swallow — patients are sometimes sedated to the point of unconsciousness so that they experience no discomfort from dehydration.
"Concern is sometimes expressed by health care professionals that doing so might hasten the patient’s death," says Meisel. If there is informed consent from the patient or surrogate, the fact that the medication might hasten the patient’s death is immaterial, he explains.
The U.S. Supreme Court has stated that one reason for its refusal to rule that there is a constitutional right to physician-aid-in-dying is the fact that terminally ill patients can choose to stop eating and have terminal sedation.
"The fact that the sedation might hasten the patient’s death does not make it illegal, as long as the purpose in providing the patient with sedation is to assure the patient’s comfort," says Meisel. "This is an application of the doctrine of double effect,’" which is often invoked to explain the permissibility of an action that causes a serious harm, such as the death of a human being, as a side effect of promoting some good end. It is claimed that sometimes it is permissible to cause such a harm as a side effect (or "double effect") of bringing about a good result even though it would not be permissible to cause such a harm as a means to bringing about the same good end.1
Furthermore, says Meisel, the failure to provide adequate palliative care under such circumstances might itself be a violation of the patient’s rights.
• Providers may believe that in order to forgo life-sustaining therapy, they need to have complete knowledge of a patient’s actual wishes.
"People often think that if somebody hasn’t made their wishes crystal clear, then you are obligated to continue all medical treatments," says Timothy E. Quill, MD, professor of medicine, psychiatry, and medical humanities at University of Rochester (NY)’s Palliative Care Program.
Providers might feel on firm ethical ground withholding CPR, says Quill, "but the more you get to things like feeding tubes or antibiotics, the more there is a belief that you can’t stop those treatments once started, when, in fact, you can," he says. "Some providers will feel the need to keep going."
Bioethicists can educate providers about how to make decisions when people lose capacity. "From a legal point of view, the approach is generally agreed upon. This is pretty well-worn terrain," says Quill.
If the person has an advance directive, "that’s the marching orders, because that is the patient’s voice," says Quill. If there is no advance directive, clinicians should rely on family members to try to imagine what the patient would want using what is known of the patient’s own values and preferences. Only if the patient’s wishes are not knowable should clinicians revert to "best interest" standard, he says.
There will always be tough cases, such as in adults who never had legal capacity, because there are a lot of built-in protections for those patients. "But once you know the agreed-upon ethical standards, it solves 80% of the cases so they don’t need formal ethics or legal consults," says Quill.