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Communicate with surrogate decision makers
Shifting focus to patient’s wishes alleviates burden
Recent studies in intensive care units1 (ICU) have found that critical care specialists often try to base decisions about withdrawal of advanced life support measures based on their perception of the patient’s wishes and the likelihood of survival in the ICU.
But making accurate decisions about a patient’s wishes in such situations often requires clinicians to communicate effectively with surrogate decision makers — members of the patient’s family or others empowered to make decisions should the person become incapacitated.
Unfortunately, this is one of the most difficult tasks faced by physicians caring for patients at the end of life, says Paul Hofmann, DrPH, FACHE, a consultant on clinical and health care organizational ethics and vice president of Provenance Health Partners in Moraga, CA.
"In trying to come to a decision, physicians frequently ask family members, What do you want me to do?’ instead of, What would your family member want under these circumstances?’" he says. "Asking the question this way can put an unnecessary burden on the surrogate decision maker."
Physicians and family members may understandably have their own values and wishes to consider, and this often leads both groups of people to make decisions that frequently don’t reflect the true wishes of the patient, he says.
Several statistics seem to bear this out.
Numerous studies performed over the years have indicated that most terminally ill Americans hope to die at home in the care of their families, as opposed to a health care setting. Yet, as a recent study published in Critical Care Medicine2 finds, most Americans still die in hospitals — with the largest percentage receiving care in ICUs.
"In that study, based on discharge data received about more than 500,000 deaths nationwide in 1999, 38% of deaths occurred inside a hospital, and 22% of those in the ICU," he says. "Extrapolated nationally, more than half a million patients die annually in ICUs. This is all the more reason to emphasize the need find better ways to honor the patient’s wishes at the end of life."
According to Hofmann, patients and family members can be better served if physicians phrase their question as, What would your family member want under these circumstances?’
One doctor, he explains, puts the question another way.
"He asks the family members, If I could give your family member a magic potion that could make him or her conscious for five minutes, what would your family member say [he or she] wanted under these circumstances,’" Hofmann says. "It is another way of lifting the burden from the family member and saying, This is the opportunity to honor and respect what your family member would want.’"
Physicians also should be careful when talking to family members about the patient’s condition.
Too often, he says, physicians go into extensive descriptions of the patient’s condition or prognosis without first determining what level of knowledge and understanding the family members already have.
"If the physician were to begin by asking the surrogate decision makers and other family members to describe what they understand the patient’s condition to be, then the physician can be better positioned to explain and describe the circumstances within the context the family understands," he explains. "This can be very helpful in terms of minimizing misunderstanding and listening to the family."
Family members may have misconceptions or concerns about their loved one’s condition that they do not reveal unless asked, or, conversely, they may understand more than the patient’s physicians realize.
"There may be a high degree of understanding or a low degree of understanding, and there may be complete consensus among the family, or as is often the case, there maybe disagreement among family members about what they understand the prognosis and the patient’s wishes to be," he says. "I encourage physicians to think about the whole communication process and how it can be enhanced to best serve the needs of the patient as well as the family members."
Hospitals also need to periodically evaluate and re-evaluate any policies they have on caring for patients at the end of life, especially those that concern substituted judgements — someone other than the patient making decision about the patient’s care.
For example, Hofmann says, hospitals are required by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to have a policy on do-not-resuscitate (DNR) orders.
Although JCAHO does not stipulate what the policy should contain, they do require each accredited hospital to have one. Consequently, many institutions have policies that are out of date and not useful in many areas of common practice.
"For example, many do not stipulate what should happen in the event that a patient with a DNR should return to the operating room for surgery," he notes. "Many clinicians feel that, in some circumstances, it is appropriate to suspend a DNR when a patient is undergoing surgery for a procedure that is expected to improve their condition." But a suspension may not be appropriate for all circumstances. An up-to-date DNR policy should indicate when, if ever, the DNR would be suspended if the patient is scheduled to undergo surgery.
Other institutions Hofmann has worked with have developed their own policies regarding difficult issues at the end of life. One has a specific policy on incapacitated patients who do not have surrogate decision makers available, he says. Another has developed a policy on administration of nonbeneficial treatments.
"These are policies that were developed and reviewed by all of the hospital committees and approved by the board of directors," he says. "So, both were very long, thoughtful processes that allowed the hospital to develop policies that honored its institutional values."
Many hospitals are reluctant to have such specific policies because they believe in the value of having an ethics committee make an individual decision about cases in which a conflict or question arises, Hofmann says.
However, it is important to develop such policies because it allows for a more relaxed, thoughtful discussion of the issue by different groups of health care professionals at the institution, rather than a last-minute, pressured decision by an ethics committee on each case.
"With regard to patients at the end of life, a hospital should not only develop appropriate policies, but they should also make sure their existing policies are reviewed," he concludes.
1. Cook D, Rocker G, Marshall J, et al. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med 2003; 349:123-131.
2. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med 2004; 32:638-643.