Tips on talking to your patients about advance directives
Getting beyond simplistic statements like 'no machines' can dramatically improve end-of-life planning
From the March 1999 ACP-ASIM Observer, copyright © 1999 by the American College of Physicians-American Society of Internal Medicine.
By Christine Kuehn Kelly
It's 3 a.m. and your patient is failing fast. You need to go to the intensive care unit to determine how you should handle her care. Perhaps even more importantly, you need to find out whether the patient has any advance directives, such as a living will or durable power of attorney for health care.
"You don't know the patient, yet you have to find out his or her desires for aggressiveness of medical care," said Amy P. Abernethy, ACP-ASIM Associate, chief resident at Durham VA and Duke University Medical Centers. "You need to ask about advance directives to help figure out if the patient needs a do-not-resuscitate (DNR) order right away, and to determine how the medical problem should be managed."
But tracking down and then interpreting a patient's advance directive is rarely that easy. While the law requires most health care facilities that receive federal funds to inform patients of their rights to execute advance directives, advance planning is all too often put off until the patient is close to death and CPR is needed. According to Alan Meisel, JD, professor of bioethics and law at the University of Pittsburgh and author of "The Right to Die," only about 20% of adult Americans have advance directives.
Even if your patient does have an advance directive, translating a living will into a DNR order can be difficult because many advance directives are too simplistic to be useful. DNR orders and living wills often focus on the mechanics of life-sustaining treatment rather than on understanding the patient's values and goals for medical outcomes. While a patient might specify that she never wants CPR or a feeding tube, she may want to be resuscitated if she has a heart attack.
That's why experts say that just as important as putting patients' wishes into writing, physicians need to take the time to talk to their patients. According to James A. Tulsky, ACP-ASIM Member, assistant professor of medicine at Durham VA and Duke University Medical Centers and a member of the College's End-of-Life-Care Consensus Panel, physicians need to identify the patients' values about medical care when talking about advance directives. One way to do that, he said, is to ask patients why they do or don't want the same end-of-life treatment that a family member received. If you don't ask why, you can't extrapolate to another scenario," explained Dr. Tulsky, who co-authored one of the Panel's papers on communicating with patients about death and dying, which is expected to be published in an upcoming issue of Annals of Internal Medicine.
With that in mind, here are some tips on how to make discussing advance directives easier for both you and your patients:
- Start off slowly. Beginning a conversation about advance-care planning can create anxiety or confusion for patients and their families. According to Bernard Hammes, PhD, a medical ethicist at Gundersen Lutheran Medical Center in LaCrosse, Wisc., one way to get off to a good start is to tell patients that you want to take good care of them and respect their values and views.
You might start out by saying: "As your doctor, I want to make sure I understand your views on treatment so I can take good care of you. Because unexpected things can happen, I always ask my patients if there is anything they want to tell me about their views. If I know your views in advance, I know what you would want should you become critically ill and can no longer participate in decisions."
- Learn a patient's underlying values and goals. Use treatment goals as a springboard for discussion and start with open-ended questions. What makes life worth living? Would treatments such as intubation affect the quality of life? Would a patient want treatment if he were 50% likely to get better? How about 25%?
Only after you have a sense of the goals—and the underlying reasons for them—should you segue into a checklist of interventions. If you get broad responses, dig deeper. If patients say "no machines," for example, ask what bothers them about life-sustaining machines. Mr. Meisel from the University of Pittsburgh said that he prefers to add the line "if there is an extremely small chance of recovery" to make advance directives more specific—and useful for physicians.
- Ground your discussion in an experience. If someone has just come out of the hospital, you might focus on the hospitalization. For example: "Things went well that time. But I realized we had never talked about what would happen if things didn't go as well." Other experiences may include a family member or friend's terminal illness and the medical interventions that were taken.
- Don't rush. In most cases, neither you, the patient nor a surrogate has to come up with an instant decision about removing ventilators or stopping feeding. And when you are about to walk into a patient's room, blank advance directives form in hand, take a few moments to formulate your thoughts. What do you what to get out of the conversation other than a yes or no response to DNR?
- Don't think that you know all the answers. "Residents often make the mistake of going into an advance directives conversation thinking they know what the outcome should be," said Gary S. Fischer, ACP-ASIM Member, assistant professor of medicine at the University of Pittsburgh. Or they try to get specific answers to their questions. But if residents are willing to give up control of the conversation, it can lead to a fruitful discussion of what the patient really wants.
If you mention CPR right away, for example, patients will think you have an agenda. "I go in with a question rather than information," said Mary K. Buss, ACP-ASIM Associate, second-year resident at the University of Pittsburgh Medical Center. "I try to find out what quality of life a patient needs to maintain to make it worthwhile continuing the medical intervention."
- Don't assume patients know the answers. CPR? Patients have probably seen dozens of people resuscitated on television. Studies show most people assume the CPR success rate to be about 60% to 80%, rather than the actual 0% to 15% survival rate. Describing permanent unconsciousness or terminal illness may help patients understand this concept. In addition, be sure to describe interventional treatments in layman's language.
- Take responsibility. Most people find it hard to make the decision to stop a loved one's treatment. "Don't make it necessary for the family to tell you to stop treatment," said Sharon E. Maynard, MD, a second-year internal medicine resident at the University of Pittsburgh Medical Center. "When the time comes, make the suggestion yourself."
- Don't wait. Try talking to your patients about advance directives before a crisis arises, particularly if you are working in an outpatient environment.
"The best time to talk about advance care planning is in the primary care environment, not the hospital," said Christine K. Cassel, MACP, chairman of the department of geriatrics at Mt. Sinai School of Medicine in New York and a past College President. "Unfortunately, all too often we discuss the subject when a patient ends up on a ventilator." Candidates for the discussion are those over 65 and patients with serious chronic illnesses.
- Take a closer look at dying. Joanne Lynn, FACP, director of the Center to Improve Care of the Dying in Washington and a member of the College's End-of-Life-Care Consensus Panel, said that most housestaff could use a better understanding of terminal illness "Residents think they have it because they are around sick people," she said. "But there is no time frame, no sense of the four- to six-month illness before the patient was admitted. Or there is no sense that the patient they are seeing now might not make it to summer."
Residents like Dr. Buss acknowledge that their role in patient care often does not provide a deep understanding of what their patients go through. "We don't have a sense of continuity in care because we come in at the end," she said.
To get a better understanding of terminal illness, Dr. Lynn suggested sitting by a patient's bedside as he dies. Feel the power and awe that comes over you, she said, and try to realize the emotions that family members feel.
- Don't avoid discussions about faith. Mentioning your own spiritual beliefs may comfort some patients. It's also another opening to the advance directives discussion. Ask, "Is there something you turn to in times like this?"
Dr. Tulsky from the Durham VA recalled a chronically ill patient who was having a spiritual crisis. The man, who had spent about a third of his life in maximum-security prisons, was terrified that death meant he would go to hell because of his crimes. After Dr. Tulsky initiated a conversation about advance directives, the man began exploring spiritual issues, which helped improve his overall well being. "Talking to him was less getting his preferences on medical interventions than bearing witness to his fears," Dr. Tulsky said. "I encouraged him to seek pastoral counsel, and now his pain is under better control."
- Look for support systems. It's hard for physicians to be successful in advance care planning without a system that supports them, said the medical ethicist Dr. Hammes. Health care systems often don't discover a patient's advance directives-or they simply ignore them.
Find out how your health care system handles advance planning. Will your patients' advance directives be accessible to anyone else who provides treatment? Will the directives be taken into consideration when making decisions? Will you be supported in making decisions based on patient desires?
- Create your own advance directive. "We physicians generally don't like to think ahead to the grim future," said Dr. Cassel. "But residents should learn how to put an advance directive together. It's a useful process to have one and discuss it with family members. I have one for myself."
Christine Kuehn Kelly is a Philadelphia-based freelance writer specializing in health care.
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