The patient, after a long illness, is deteriorating rapidly. The family assembles at the hospital bedside. A cadre of physician specialists may already be involved. Perhaps some have known the patient and her family for years.
Enter the hospitalist, likely meeting the patient for the first time. Soon, over minutes or a few days, it becomes apparent: Not everyone is on the same page. The patient, or more commonly the family, may be resistant to withholding or withdrawing treatments such as a feeding tube. Or the hospitalist may recommend continued active treatment and the patient or the family balks.
For hospitalists, this can be an emotionally draining and sometimes daily scenario, said Robert L. Fine, FACP, director of the Office of Clinical Ethics and Palliative Care at Baylor Health Care System in Dallas. “I think this is the most common type of ethical dilemma that they face as hospitalists,” he said.
In Texas, where Dr. Fine practices, a legal mechanism to resolve such disputes while protecting physicians from lawsuits has been available for a decade. But physicians in other states face more limited options if an ethics consult and other communication efforts don't break the impasse, said John Luce, FACP, emeritus professor of clinical medicine and anesthesia at the University of California, San Francisco.
At most hospitals, there's no institutional process or mechanism available, said Dr. Luce, who authored a piece in the August Critical Care Medicine that outlined the history of resolving end-of-life conflicts. “I think that's the case at most hospitals that I'm aware of—that ultimately it is the doctor who decides how to deal with these situations,” he said. “And it's the doctor's risk if he or she decides to not provide the care that the family wants.”
But the vast majority of end-of-life conflicts never reach this dicey precipice, according to physicians interviewed. Disputes can be averted through education, conversation and finding the time to really absorb the patient and family's perspective. More often than not, a series of conversations may be required, said Heather Cereste, ACP Member, a hospitalist and assistant professor of medicine and public health at Weill Cornell Medical College in New York City.
“There is a starting point—the basic values, culture, religion, the whole milieu of the person,” she said. But feelings about code status, ventilator support and other interventions may shift along with the patient's condition, she said. “The hospitalist has to be attentive as to when to revisit those [goals], as they change as the illness affects the patient.”
While these scenarios can cut both ways, it's more typical for patients—or really the family, as the patient may not have sufficient capacity—to argue against withholding or withdrawing treatment, Dr. Fine said. Frequently, they are coping with some stage of grief: denial, bargaining, anger or depression. “It's a family that cannot accept that they are going to lose a loved one,” he said. “So they demand, ‘Do everything, doctor. Do everything you can.’ “
Family members, while still longing for a miracle, also may feel overwhelmed by the responsibility that has been thrust upon them, said Stephen Bekanich, MD, a hospitalist who recently became medical director for palliative care services at the University of Miami. “What we fail to do as providers is to see the burden this places on the family, having to make this decision.”
Physicians can potentially help to ease that strain by discussing end-of-life issues in the context of shared decision making, said Dr. Bekanich. Ideally, physicians should set aside time and space for a family meeting, in a private room without cell phone or pager distractions, he suggested. That will enable the hospitalist to learn more about the family, as well as to gain insight into the patient's values and interests prior to his or her illness. Only then, he said, should the physician lay out the medical details and options.
Prior to that conversation, the patient's family may not yet have grasped the full medical picture, amid their brief interactions with various physician specialists, Dr. Bekanich said. “We know from the literature, we know from experience, that physicians are overly optimistic when they talk to patients.”
While an overwhelmed hospitalist may lack time for this lengthy discussion, brief discussions—although far from ideal—may still avert a crisis later, Dr. Bekanich said. A hospitalist who senses a whiff of misunderstanding or frustration during rounds, for example, could offer to return after wrapping up. Another alternative: Train nurse practitioners and physician assistants to assist with end-of-life conversations.
These disagreements can persist over days. But doctors should continue showing up and not shrink from family interactions, Dr. Bekanich said. “If I've had a tense conversation, I just put it out on the table. The next day I say, ‘Look, there was some heat in the room. The only reason there was heat from my standpoint is because I care about what your mom is going through.’ “
At San Francisco General Hospital, where Dr. Luce practices, a physician can request an ethics consult, a common option at other large hospitals, he said. How effective that consult is can depend in part upon whether the patient's camp views the consultant or committee as independent or simply an extension of the hospital.
The additional input can broaden the discussion, as well as force the physicians involved to clarify their clinical rationale, Dr. Luce said. “If your thinking isn't very cogent, you are going to be called on it.”
Still, even the best efforts don't resolve all situations, Dr. Luce said. “I've seen enough cases where I thought the communication was as good as you could expect between human beings and there was still disagreement. I've seen some awfully good doctors get embroiled in these types of situations.”
Dr. Luce, who has been looking at patterns in California malpractice cases related to end-of-life care, has found them to be split about evenly. To date, they are as likely to have involved a physician refusing to withdraw treatment as they are to involve family efforts to block a physician's recommendation to cease aggressive care.
However, a lot of such conflicts, Dr. Luce believes, likely never get as far as a courtroom. For one reason, it's difficult to find an expert who will testify that the attending doctor violated the standard of care, he said.
The Texas solution
Since 1999, a state law in Texas—the Texas Advance Directives Act—has provided physicians there with a process if other avenues, including an ethics consultation, fail. In the event that the consult doesn't break the impasse, the family can be given 10 days in which to transfer the patient. If no transfer option is found, and the family is unable to get a court extension for more time, the physician can withdraw active treatment.
It's not clear how often the 10-day process has been triggered. The law doesn't include a reporting requirement, according to Dr. Fine. Data submitted to the Texas legislature in 2005, involving large hospitals, provide a partial snapshot. By that point, there had been nearly 3,000 ethics consults, roughly one-third of them involving futility cases. Following those futility consults, 65 10-day letters were issued.
Dr. Fine, who went through his own Baylor files this fall, counted 19 10-day letters dating back to 2000, with the caveat that he might be missing a few.
The Texas approach does have its critics. In a 2009 commentary in the journal CHEST, a Boston physician raised several concerns, including that these cases are more likely to occur at urban hospitals and thus may disproportionately impact poor and uninsured patients. Dr. Fine counters that any critically ill patient is more likely to land at a large urban hospital. He couldn't personally recall a Baylor case that involved an uninsured patient.
Without the legal immunity provided in Texas, most doctors will back off in the face of an intransigent patient or family. That result has its own reverberations, Dr. Fine said. “I think the moral distress of doctors is significant,” he said. “I've had doctors say to me, ‘I'm getting paid good money to do something that's wrong.’ “
In some cases, the 10-day process also can ease the minds of the emotionally distraught families, Dr. Fine said. “There are some families who psychologically feel that to do anything other than to pursue every technologically possible innovation is to abandon love for the patient.”