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How to avoid conflicts with patients and families during end-of-life care

From the June 2000 ACP-ASIM Observer, copyright 2000 by the American College of Physicians-American Society of Internal Medicine.

By Phyllis Maguire

PHILADELPHIA— A cardiologist pointed out that "hope is a double-edged sword" that too often leads families away from the reality that a loved one is dying. An internist complained that his hospital staff struggles with "the unreal expectations of an obdurate surrogate" at least once a month. And a rheumatologist admitted that despite years of medical training and practice, she needed help from a hospice nurse to talk to her own terminally ill mother about end-of-life options.

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These were just some of the comments made during "In the Crossfire: A Case-Based Roundtable on Clinical, Ethical, and Policy Issues in End-of-Life Care." The Annual Session presentation was specifically designed to explore the kind of conflicts that can, as one panelist said, "really harm the dying process."

A panel of physicians agreed that end-of-life discussions ideally begin when patients are still healthy and can talk about their needs, fears and end-of-life goals. Panelists offered several tips for making those talks productive:

  • Find out about the experiences of family and friends. While patients sometimes have a hard time specifying what type of end-of-life care they want, they often know what they don't want. They may feel, for instance, that a close friend wasn't treated aggressively enough or that a loved one's life was senselessly prolonged. Those experiences color what care they want.

  • Ask specific questions. All patients say that they want to die with dignity and without suffering. But panelist Janet L. Abrahm, FACP, a hematologist/oncologist at the University of Pennsylvania and a hospice medical director, urged physicians to find out exactly what patients mean by "suffering." She pointed out that for many patients, suffering is not so much physical pain as emotional stress, such as fearing that their spouse won't be able to cope with the dying process or worrying that a beloved pet won't be fed. "Help them populate that landscape," Dr. Abrahm said. "Remind them of the faith, social and medical communities that they can draw on—volunteers who will help their families, or the girl down the hall who can feed the cat."

  • Avoid jargon. Dr. Abrahm likened discussions about end-of-life care to shopping for a new computer. While you just want to be told how to connect to the Internet, the salesperson rattles on about technical features. Her advice: Listen to the patient's concept of quality care.

On the other hand, "a lot of older people are very comfortable talking about death," said panelist Bernard Lo, FACP, director of the medical ethics program at the University of California, San Francisco. Dr. Lo said that you should feel comfortable, for instance, asking a patient if she would want to be resuscitated if her heart stops.

  • Don't make promises you can't keep. "I can't guarantee that my patients won't suffer," said panelist David Casarett, MD, an internist with the Veterans Affairs Medical Center. "I can guarantee that I will be able to help them manage virtually any suffering that they may have."

 

What patients really want to hear, Dr. Abrahm added, is that you won't abandon them. That's a very real concern since patients know that they may be "handed off" to hospitalists or hospice personnel in their last days. Let patients know that you will establish a way to stay in touch with them or their families if you won't be caring for them directly.

Dr. Lo warned, however, that even if you've talked about end-of-life care, and even when patients have signed advanced directives or durable powers of attorney, "things break down during the actual experience. You have to use what you have already discussed as a guide."

Arthur L. Caplan, PhD, director of the Center for Bioethics at the University of Pennsylvania and panel moderator, presented several worst-case scenarios. For instance, how do you deal with warring siblings, when one is convinced that a dying, unconscious parent would want "everything" done and another is just as sure that mother would want only minimal treatment? How do you approach families who refuse to concede futility, who scream that they're going to sue you, or who discretely inquire if there isn't something you might do to "hurry things along"?

The panel offered the following suggestions:

  • Stay in touch. "I let the family know that I will call them at a certain time every day," Dr. Abrahm said. Making yourself available by phone and through house calls not only allows you to provide better care, it also convinces the patients and families that you are their partner in this experience.

  • Get everyone on the same page. As treating a patient grows increasingly futile, it's important that providers agree on and convey a unified "big picture." It is excruciating, for instance, to try to convince a family that a patient has almost no chance of recovery when a night nurse reassures them that "there is always hope."

"There is always hope," Dr. Lo said, "but help define what 'hope' is. When it's unrealistic to hope that the patient will walk out of the hospital, help steer family members toward a hope that the patient can die with dignity."

  • Let families vent. Screaming and threats are almost always about a family's feelings of frustration, not the result of your care. Give family members an opportunity to verbalize their grief, and often you'll find that their suspicions about your care subside.


  • Sit everyone down and talk. Include all the family members (even those not speaking to each other), all the doctors, specialists, nurses and social workers, as well as members of the ethics committee.
  • Sit everyone down and talk. Include all the family members (even those not speaking to each other), all the doctors, specialists, nurses and social workers, as well as members of the ethics committee.

  • Sit everyone down and talk. Include all the family members (even those not speaking to each other), all the doctors, specialists, nurses and social workers, as well as members of the ethics committee.

  • Address spiritual needs. A chaplain can be as important in end-of-life care as a physician—particularly since physicians' comfort level with addressing patients' spiritual needs can vary widely.

"A chaplain has tools that I don't have, like the ability to talk about an afterlife or God's purpose," Dr. Lo said. "As a physician, I may feel that I'm not trained or comfortable with that discussion."

In a related session titled "Doctors, Death and Dignity," Steven A. Levy, FACP, chief of the internal medicine division at Hamot Family Practice Residency in Erie, Pa., pointed out that doctors can contribute to end-of-life conflicts by giving families mixed messages and abdicating their expertise.

"We hand over the reins," Dr. Levy said. "We say things like, 'What do you want us to do?' We are famous for taking emotionally-laden situations and throwing facts at them." Physicians should frame the discussion to keep families' expectations realistic and to allow them to grieve.

"When a physician says, 'I'm very sorry, but your mother is dying,' people usually start crying—and it is our job to pop that cork," Dr. Levy said. Instead of offering families an array of futile alternatives, physicians should assure them that "we will do everything possible that will help," Dr. Levy said. He also suggested helping families make decisions within specific time frames.

"I will say, 'I think it's time we took your father off the ventilator, but if you're not ready, why don't we reassess his situation tomorrow?' " Dr. Levy said. "That way you give them a sense of control—and time to cope."



Resources on end-of-life issues

End-of-life issues are addressed in papers developed by the College's End-of-Life Care Consensus Panel. Reprints of papers are available on the Center for Ethics and Professionalism Web site at www.acponline.org/ethics/papers.htm. For more information, contact Lois Snyder at 800-523-1546, ext. 2835.

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