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Finding consensus in end-of-life care

January 2004

Published in the January 2004 issue of Today’s Hospitalist

One of the most difficult tasks physicians face is discussing end-of-life issues with family members. That discussion can be particularly troublesome when a patient is incapacitated and hasn’t left an explicit advance directive. The situation is even tougher for hospitalists, who typically don’t get a chance to develop a relationship with either the patient or the patient’s family.

“It’s not an easy conversation because we’re not functioning as the patient’s primary care physician,” explains Sean Tehrani, MD, medical director of the hospitalist team at Rex Hospital in Raleigh, N.C. “We’re walking into the case.”

Complicating the situation even further, inpatient physicians often have only hours or days to help families arrive at decisions that should be made over much longer periods of time.

“True end-of-life care does not take place at a family meeting, it’s a process of exploration and information gathering,” explains geriatrician Cheryl Phillips, MD, medical director of the Sutter Medical Group in Sacramento, Calif. But it’s happening by default at the hospital. Either the primary care provider didn’t address end-of-life care issues, or there are many specialists involved in the case and no one thinks it’s their responsibility.

While helping patients and family members make end-of-life decisions can be a thorny process, there are concrete steps you can take to make things go more smoothly. Here are some tips from hospitalists and end-of-life care experts to help you guide family conferences “and make sure the issues that need to be raised get heard.

The guest list

Physicians say they don’t try to impose a limit on the number of family members who can attend family conferences.

“In general, it’s good to get as many people together as possible so they hear the same story and can ask questions together,” says Joanne Lynn, MD, director of the Washington Home Center for Palliative Care Studies in Washington. “But you also need to establish who has real, legal authority.”

But in part because family conferences often turn into a series of meetings, there’s no easy answer for exactly who “or how many “from the medical team should attend.

Some physicians think the fewer the better. Dr. Tehrani usually asks a social worker to join him. Susan Brunner, MD, a hospitalist at Shelby Baptist Medical Center in Alabaster, Ala., says she prefers to meet family members alone, unless the patient’s decline is sudden or catastrophic. In that case, she asks the primary nurse to participate.

Other physicians take a broader approach. Steven Pantilat, MD, associate professor of clinical medicine and director of the palliative care service at the University of California, San Francisco, likes to draw in attending and consulting physicians, social workers and nurses, and occasionally a chaplain.

“It depends on the number of family members,” he explains. “If there are only two or three, I would include no more than three clinicians. If there are eight or 10 family members, it’s OK to bring more professionals.”

Dr. Pantilat finds it helpful to include subspecialists to discuss particular conditions. If the patient is experiencing liver failure, for example, he might ask a hepatologist to sit in on the meeting.

Vijay Rajput, MD, also likes to have a multidisciplinary team. He says that broad-based meetings are a must when the circumstances are sudden and unexpected, such as when a young person has experienced a major trauma. “You want more expert input so the family sees a consensus approach,” says the assistant professor of medicine and hospitalist at Robert Wood Johnson Medical School and Cooper Hospital in Camden, N.J.

“In such instances, the family may seek additional consults, a process that should be supported. Don’t be afraid of second opinions,” Dr. Rajput explains. “If the patient can regain quality of life, you want to give them a chance.”

Dr. Rajput also notes that primary care physicians can be a valuable “if underestimated “resource. “Sometimes they know more about the patient’s life “and death “wishes than any one else,” he says.

If logistics prevent the patient’s primary care physician from attending the meeting, a pre-conference telephone conversation can help you determine whether the patient has an advance directive on file. Talking to the primary care physician can also help put family members at ease.

“No matter who meets with the family, it’s important that all medical professionals agree about the patient’s prognosis. Otherwise,” Dr. Brunner says, “even the most casual comments about the patient’s condition can confuse family members, give them false hope or make them feel guilty about a decision they’ve made.”

“And if more than one physician is attending the meeting, decide beforehand who will lead the discussion. It doesn’t mean that person talks all the time,” says Dr. Pantilat. “But they’re responsible for the flow of the meeting.”

Setting the structure

If the patient is alert and able to make decisions, you probably want to hold the meeting at the bedside. If the patient is not alert, however, consider holding the meeting in a quiet, secluded area.

Physicians have different opinions about how long to plan on meeting. Some suggest blocking off an hour, saying that it’s important not to rush the meeting. You need to give family members an opportunity to have all their questions answered and allow for a full discussion.

However, Dr. Phillips finds that a series of 15-minute meetings often works better than a single one-hour meeting. “Otherwise, we overwhelm them,” she says. “If you give family members information incrementally, you can come back and talk about choices later.” She points to another advantage of a series of shorter meetings: “They end up taking less overall time out of your schedule.”

Whichever time frame you choose, keep one basic goal in mind: You need to ascertain what family members understand about the patient’s condition.

“Usually when I talk with the family, I ask them to tell me about the patient and how that person has been doing in the last five years,” Dr. Rajput says. “The idea is to get a picture of the person’s quality of life over the last two to five years.”

The next step is to present the patient’s medical condition as accurately and simply as possible. Many physicians make the mistake of peppering the discussion with medical jargon and unfamiliar details like “intubations,” “creatinine levels” and “APACHE scores.”

“It’s so hard for the family,” says Dr. Brunner. “They’re struggling to come to terms with the situation, so you have to be clear and speak in plain English.”

Tough questions

You’ll inevitably be asked to answer a tough question: How long does my loved one have to live? Giving the family possible survival ranges “in hours to days, days to weeks, or weeks to months, based on your clinical judgment “is reasonable, as long as you make it clear that the precise answer is unknown.

“I explain that the patient could die suddenly and that sometimes it seems they’re waiting until they’re alone,” reports Dr. Pantilat. “I say that for two reasons. The first is that this is something we have observed. The second is that many families feel guilty for the rest of their lives if they weren’t present when the patient died.”

Dr. Phillips asks the family what would happen if her predictions about survival and other factors turn out to be wrong. She wants to help family members examine and reassess their priorities. One family member might think it’s important to take time off from work now to be with her mother, for example. Another who lives across the country might want to save that time to attend the funeral.

At this point, you need to give explicit details. The meeting should naturally turn to care options. Even simple terms like “comfort care” and “life support” can lead to different interpretations, so thoroughly describe what each path would entail.

Equally important, you need to put the family’s decision in the context of the patient’s wishes. “The focus often becomes what the family wants,” explains Dr. Rajput. “But the question is ‘What does the patient want?’ not what the doctor or family wants for the patient.”

When you bring up ending aggressive treatment and moving into palliative care, it’s especially important to explain the range of possible interventions. “When family members hear talk about a do-not-resuscitate order, they often think we’ll put their loved one in a corner and let them die,” Dr. Brunner explains. “They don’t realize we can do a lot for people even if they have a DNR order.”

But choose your words carefully. The word “withdraw,” for instance, has only negative connotations. Talk instead about discontinuing services that aren’t helping, and highlight measures that can make the patient comfortable.

Dr. Phillips finds it helpful to remind family members that a decision to start palliative care is not itself a death sentence for their loved one. “I tell them they’re not causing death, the disease is causing death,” she says. “They’re choosing to give the person comfort.”

While many physicians worry that giving patients and their families too much direction is paternalistic, the consensus is that most families welcome a recommendation from the physician. When family members ask “What would you do?”, a specific answer is not only appropriate, but may actually help relieve the family.

“It is sometimes too difficult for family members to say they want to disconnect their loved one from the ventilator,” Dr. Pantilat says. “If you make the recommendation, you don’t make them carry the burden.”

Be clear that your advice is based on your understanding of the patient’s condition and the family’s beliefs about what the person would want. In most instances, family members ultimately reach an agreement “but it may take you several meetings to get to that point.

The value of patience

While you’ll sometimes need an immediate decision, you can usually give family members an opportunity to absorb what they’ve heard. “We make the mistake of trying to get them to make a decision on our rounding schedule,” says Dr. Phillips. “But families usually come around with incremental information-gathering and time.”

It may even pay to continue what is essentially futile care for a limited period of time. “The process breaks down when doctors become adamant or frustrated with the family,” Dr. Pantilat says. “It may mean taking up an ICU bed, but if it takes another day or two, it’s worth it in the long run.”

Agreeing on time limits to test the patient’s response to either continuing or removing an intervention gives the family breathing room to make a decision. “Time-limited trials can be helpful,” explains Dr. Lynn. “Sometimes, they can be short “even hours “but they give everybody more information, and help the family acclimate to the decision.”

Finally, if the family reaches an impasse, delicate probing by the physician can often lead to resolution.

“It’s usually not so much about the care,” says Dr. Phillips. “There may be a misunderstanding about the patient’s prognosis, or certain people are holding out hope or need to control the situation.”

As an example, she says she often asks family members what the feeding tube represents to them. “Then we talk about whether there are other ways to meet their goals without continuing something that’s not helping,” she explains.

Throughout the process, good communication and sympathetic listening can carry the day. “People come from various backgrounds and they have different expectations,” says Dr. Tehrani. “You have to be careful in your communication, be a good listener and give the family time.”

Gina Rollins is a freelance writer specializing in health care. She is based in Silver Spring, Md.