Home Feature Feel uncomfortable talking about end-of-life care? Try these strategies

Feel uncomfortable talking about end-of-life care? Try these strategies

February 2007

Published in the February 2007 issue of Today’s Hospitalist.

If there’s one area where you as a hospitalist can improve your skills in treating patients at the end of life, it’s in how you talk to these individuals and their families.

That was one of the messages delivered by Steven Pantilat, MD, during a presentation on end-of-life care at last fall’s University of California, San Francisco (UCSF) annual meeting on managing hospitalized patients.
Dr. Pantilat, a hospitalist and one of the nation’s top authorities on end-of-life care, said that the opportunity for hospitalists to get involved in end-of-life care communication is obvious. Optimal end-of-life care requires a team approach, and because many patients are hospitalized intermittently during their final days, hospitalists have a chance to play a central role on that team.

But Dr. Pantilat, associate professor of clinical medicine at UCSF and founding director of the palliative care program there, said that for many physicians, communication skills remain a challenge.

That difficulty clashes with the expectations of dying patients and their families, who, Dr. Pantilat said, look to the health care system to provide not only relief of physical symptoms-namely pain, shortness of breath and fatigue-but communication and support.

Studies have shown that patients and their families want information about illness and death, including what they can expect to happen to them. They also want psychosocial support, and they don’t want to be abandoned.

To help hospitalists talk to both patients at the end of their lives and their families, Dr. Pantilat outlined communication strategies to meet these patients’ needs.

Talking to patients

Don’t interrupt. Studies have shown that in the outpatient setting, patients get the chance to talk to their physician only an average of 18 seconds before the physician interrupts. "I don’t suspect the data would be any different on the inpatient side," Dr. Pantilat said. Listen to patients speak uninterrupted for two minutes or more, so that you can hear what the patient really "has to say."

Ask open-ended questions. It may seem counterintuitive, said Dr. Pantilat, but open-ended questions are more efficient for data-gathering. Questions such as, "How have things been going for you at home?", "How are you hoping we can help you?" or "What is bothering you the most?" will help get to the core of patients’ values and goals at end of life. "We want to know in essence what is important to the patient, what matters to them the most," he said.

Understanding patient values and goals. Although open-ended discussions are the rule, make sure you use words like "worry" and "hope" when talking to patients about end-of-life decision-making to help understand what their values and goals are. Dr. Pantilat recommended asking questions such as, "When you think about what lies ahead, what worries you the most?" and, "When you think about the future, what do you hope for?"

Once you’ve unearthed information about a dying patient’s hopes, values and fears, you can translate their complaints about pain, nausea and feeling short of breath into appropriate medical interventions, whether it’s an ICU admission or palliative measures.

"Patients don’t come in asking for measures by name," Dr. Pantilat said. By discussing their goals and complaints, he added, physicians get a better idea of how to choose interventions that will meet patients’ needs, particularly if they want fewer interventions.

Don’t be afraid to talk about prognosis. While a conversation about prognosis is important, Dr. Pantilat said, it makes many physicians uncomfortable. That’s because they worry that they may turn out to be wrong. But patients are listening for clues, he pointed out, so what you don’t say can communicate as much-and be interpreted incorrectly-as what you do.

"You want people to have a realistic sense of what is going on so that they can have hope, based somewhat in reality," Dr. Pantilat said. Because all of us would live our life differently to some degree knowing we had only one year left, he said, "I think we owe this information to our patients."

Besides, he added, it’s naive to think patients haven’t considered the possibility and timing of their death, particularly if they have a serious chronic illness. If you would not be surprised to hear that a patient dies in the next year, Dr. Pantilat said, that person probably deserves the benefit of a conversation about prognosis.

"If we raise the issue," he pointed out, "it will be a relief to them to know that they can talk about their concerns."

Normalize the discussion. Because Dr. Pantilat realizes that there is often no easy way to broach the topic of death with a dying patient, one strategy he uses is to try to normalize the conversation: "Many patients with this condition (heart failure, breast cancer, cirrhosis) think about the possibility of dying and have questions about this. How about you?" By using this line of communication, he said, you are letting patients know that "if they have these thoughts too, I will hear them."

Ask if patients want to talk about the end. What if, despite your best efforts, patients don’t want to participate in a conversation about death or prognosis? "There is something I call ‘informed refusal,’ " Dr. Pantilat said. "I think that people do have the right to waive their right for information, but I want to hear it from the patient."

As a result, he tends to ask the following kind of question: "I have information about your condition. Some patients want to know the details, and others prefer to have me talk to someone else. How do you feel about it?"

Correct misunderstandings about interventions. When patients have "woefully optimistic" views of how they are doing or what benefit a possible intervention may provide, they make decisions that they or their families come to regret.

A good example is resuscitation. One big take-home message of all the wildly popular television medical programs is that there is a good chance of surviving a code blue. As a result, Dr. Pantilat said, nearly one-half of those with chronic illnesses say they want doctors to try to restart their heart, adding that they believe they have a good chance of being revived.

Studies have shown, however, that when these patients are informed of their real chances of surviving a code, one-half change their minds about wanting resuscitation.

Don’t talk in absolutes. Aside from correcting misinterpretations or misunderstandings, Dr. Pantilat said the above example offers another lesson for physicians on why they should discuss prognosis with dying patients: Pinpoint accuracy isn’t as important as providing a ballpark estimate.
"We don’t talk about prognosis because we worry that we don’t have a crystal ball," he said. "The solution is not to talk in absolutes."

When he talks about prognosis, Dr. Pantilat explained, "I no longer say to someone, ‘Six months.’ I talk about ‘hours to days,’ ‘days to weeks’ or ‘weeks to months.’ This communicates the inherent uncertainty of prognostication while still giving people useful information."

Talking to families

Ask about cultural norms. Telling patients they are dying is acceptable in American culture, but it’s not necessarily a part of other cultures. At the same time, Dr. Pantilat said, cultural stereotypes of what people from different cultures do or do not want to hear about death aren’t all that helpful.

"Be curious," he said. "Ask family members what you need to know about their culture or religion to help you take care of their family member." As for family members who try to talk him out of breaking difficult news to a patient, Dr. Pantilat said, "I try to convince the family to let me tell."

Studies, he added, have shown that patients "usually know more than we or the family think." In fact, giving bad news to patients often spurs them to have the frank and useful discussions with their family that they’ve been avoiding because they know the family doesn’t want to raise the subject.

Let families know that patients may wait to be alone to die. In any discussion of prognosis, explain to family members of a dying patient that anything could happen at any moment.

"It’s important to change the idea of ‘I abandoned my mom at the moment she died’ to ‘She waited for me to leave before she died,’ " Dr. Pantilat said, saying that this information is actually very powerful. "Otherwise, people can feel guilty for a very long time" that they stepped away from a loved one’s bedside to visit the hospital cafeteria.

Discuss options, including hospice. "What I universally hear from patients and families about hospice is that they wish we would have referred them, they wish they’d had a choice," Dr. Pantilat said. "It’s an incredibly effective service for people who have a life-threatening illness and want to be at home."

While much attention has been paid to improving end-of-life care, only 28% of Americans die at home. That’s one-half the number who, on surveys, report a preference for dying at home.

Although the number of Americans enrolling in hospice care has increased over the past few years, those figures are still very low relative to the benefit hospice can provide. Dr. Pantilat said that’s due partially to the fact that many physicians
do not refer their patients to hospice or do not refer them early enough.

Deborah Gesensway is a freelance writer who reports on U.S. health care from Toronto, Canada.

The prognosis: Pinpoint accuracy isn’t as important as providing a ballpark estimate.

Phrases you should avoid during end-of-life discussion
Along with discussing ways physicians should communicate about the end of life, Steven Pantilat, MD, founding director of the palliative care program at University of California, San Francisco (UCSF), underlined these phrases that you should do without:

"There is nothing more we can do." Avoid this phrase, Dr. Pantilat urged hospitalists at last fall’s UCSF meeting on managing hospitalized patients, because "it’s never true. There is always something more we can do for patients."

Instead, Dr. Pantilat recommended the following: "I wish there was something we could do to make your [name of condition] better." That "I wish" statement, he said, "puts me on the same side as the patient."

"Would you like us to do everything possible?" This one is problematic, Dr. Pantilat said, because there is only one possible answer to that question: "Yes."

The problem, he explained, is that this question means something different to patients and their families than it does to physicians. "The family thinks it means ‘everything possible that is going to help,’ " he said. They do not mean, " ‘do everything possible’ that is going to lead them down some road that they never intended to be on."

Instead, Dr. Pantilat recommended asking the following question: "How were you hoping we could help your mother?" Asking the right question, he explained, can completely change the course of care.

"Should we withdraw care?" This is another phrase that isn’t any good, Dr. Pantilat said, because "we never withdraw care. We always care for the patient" even after life-sustaining interventions are withdrawn.

While it may feel awkward, Dr. Pantilat said he always forces himself-and his residents-to say "withdraw life-sustaining intervention" instead of "withdraw care." It is a constant reminder to themselves and to patients, he said, that "we never stop caring."