American College of Physicians: Internal Medicine — Doctors for Adults ®


Tips to talk to patients about end-of-life care

Copyright 2003 by the American College of Physicians.

By Bonnie Darves

SAN DIEGO—A healthy 73-year-old woman was recovering from hip replacement surgery. Because she had signed a living will, a staff member at the nursing home where she was recuperating mistakenly put a DNR order in her chart stating, "no code, per patient's request."

When the woman suffered cardiac arrest due to a pulmonary embolism, staff at the nursing home refrained from providing treatment and didn't call a physician. The patient died 20 minutes later, much to the shock and disbelief of her daughter. (Nursing home personnel failed to inform the family about the DNR.)

The above anecdote is a dramatic example of how poor communication during end-of-life care can lead to unintended—and even tragic—results. At an Annual Session presentation on the topic, Steven A. Levy, FACP, urged primary care physicians to take a more active role in helping patients manage decisions about interventions and achieve consensus on end-of-life care.

And as the above example illustrates, physicians also need to work closely with other physicians and staff, particularly since some personnel remain confused about advance directives and DNR orders.

"Many people don't understand that not everybody who has a living will needs a DNR order," said Dr. Levy, course director of medical ethics and public health at the Lake Erie College of Osteopathic Medicine in Erie, Pa. "Just because a patient has an advance directive does not mean 'do not treat.' "

Dr. Levy offered these tips to help steer families—and colleagues—clear of futile care:

  • Focus on goals, not interventions. When discussing care options, Dr. Levy said, avoid asking questions such as "What would you like us to do?" or "Do you want us to do everything?"

    In addition, don't offer a "menu" of possible interventions. "You need to shift the conversation," he said. "You can say, for example, 'What would you like for your mother now that she is dying?' "

    Physicians have no obligation to provide futile care, Dr. Levy added. "Uninformed autonomy can be very dangerous," he said, pointing out that presenting futile care options as viable choices may increase patients' or families' expectations. Assure families that you and staff will do "everything to help" the patient.

  • Address underlying emotions. In many cases, physicians and other caregivers end up providing futile treatment simply because they are overwhelmed by a patient's or family's emotional response to the fact that death is imminent.

    Dr. Levy cautions against responding to a dying patient's emotions with logic or scientific explanations.

    Dr. Levy cautioned against responding to emotions with logic or scientific explanations. The patient with terminal cancer who cries out, "Why is this happening to me?" is not really looking for an objective explanation of the side effects of chemotherapy, he said.

    "It's a common mistake when physicians respond with logic to emotions," he continued. "You have to deal with the emotions first, because people become irritated when you throw science at them and they're in an emotional state."

    In such situations, whether it's the family or the patient who is being emotional, Dr. Levy recommended saying something like: "You sound angry. Why don't we talk about that?"

  • Try to reach consensus. One of the major challenges physicians face in caring for dying patients is achieving consensus among everyone involved in treatment decisions, including specialist consultants. Several session attendees spoke of instances in which a consultant had reported a slight physiologic improvement that had no significance in the overall picture, but nonetheless prompted the family to request interventions.

    "Because they're so focused on one part of the patient, specialists can lose sight of the forest for the trees," Dr. Levy said. If a patient's blood sugar drops from 200 to 100, for example, but the patient still has heart failure, liver failure and is comatose, that "improvement" doesn't have any real significance for the patient. "But the patient's family won't necessarily understand that without the proper context," he explained.

    He urged primary care physicians to take charge of the patient's care and to build consensus on which treatments should be ordered or declined.

  • Don't raise false hopes. Physicians sometimes offer dying patients treatment that is clearly futile. As a result, patients and families end up with the false impression that there is some prospect for recovery. Instead of false hope, give patients and their families a clear understanding of what comfort measures you can—and will—take.

    Physicians need to give patients and families some context to help them understand the difference between the quantity and quality of care. Patients and family members need to hear, for example, that using a ventilator may extend the life for a patient who has organ failure, but will not bring either recovery or better quality of life.

    "You need to explain that we can add years to people's lives, but we can't add life to their years," Dr. Levy said.

  • Set a time frame. Finally, Dr. Levy recommended working with a patient's family to establish a timetable of expectations. That can serve as a basis for deciding whether to start or discontinue certain treatments.

    "If the patient has been on a ventilator for two weeks with no improvement, you might say to the children, 'Let's leave Dad on the ventilator for another 24 to 48 hours and then evaluate the situation,'" he said. "You have to give the family time to adjust."

Bonnie Darves is a freelance writer in Lake Oswego, Ore.


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