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Early involvement with palliative care is key
When ethics consults are called involving end-of-life care conflicts, real differences in values are sometimes the cause, such as a family member insisting that the patient would want to live at all costs.
"But these are in the minority," says Edwin Forman, MD, a professor of pediatrics in the division of pediatric hematology/oncology at Icahn School of Medicine at Mount Sinai in New York City.
In Forman’s experience, the vast majority of conflicts are rooted in poor communication between providers and the patient or family. "Involving palliative care from the beginning can avoid conflict," he says.
At University of California, Davis Health System, challenging cases are identified during ethics and palliative care rounds in the intensive care unit (ICU).
"Approaches to patients, or more often families, are formulated for reframing the goals of care in a manner consistent with the patient’s prognosis and personal values, when known," says Ben A. Rich, JD, PhD, professor and School of Medicine Alumni Association Endowed Chair of Bioethics at UC Davis Health System.
This approach has the potential to ameliorate conflicts between clinicians and families. "The focus of such rounds is as much about communication strategies as it is clinical considerations or governing ethical principles," says Rich.
Forman gives examples of poor communication that can lead to conflicts:
Providers aren’t clear about the patient’s prognosis.
"They are reluctant to take away a family’s hope. Often, the prognosis is not made clear early enough," says Forman.
Some families don’t realize that while a treatment might improve one aspect of the patient’s condition, this doesn’t mean it should be offered to a patient with multiple life-threatening conditions.
"The treatment might improve heart failure, but it isn’t going to improve the liver or kidney. So the ultimate goal of survival is not reachable," says Forman.
In such cases, says Forman, providers should never say, "There is nothing more we can do."
"There is always treatment. But the treatment involves palliative care," says Forman. Palliative care might comprise 10% of the patient’s care in the early stages of illness and increase to 90% or even 100% later, he adds.
Providers often put off difficult conversations.
"If the provider suddenly appears and says, We really should stop therapy,’ you run into intractable problems," says Forman. "Once you are in conflict, it’s very hard to try to mend that. It’s better to prevent conflict than to try to manage it."
To do this, Forman recommends asking open-ended questions such as "What are your goals and why do you have them?" This conveys that the physician is competent and caring.
"Out of that comes a relationship which provides trust. Then when the hard days come, they are going to listen to you," says Forman.
Providers don’t always listen to the family’s concerns.
"A lot of family members say, When we meet with the doctor, he talks 90% of the time,’" says Forman. In cases where there is a conflict over discontinuing treatment, he suggests providers keep the discussion going by stating, "Let’s keep talking. Maybe you’ll convince me, but maybe I can help you move on."
"If after that, resolution hasn’t been accomplished, explain to them they have the right to transfer the patient’s care to a willing and competent provider," says Forman. At many institutions, if no other hospital will accept the patient, the provider can go to the chairman of the department and if he or she agrees with the provider’s position, care can be discontinued.
"But it rarely gets that far," says Forman. "Some hospitals have had that plan in place for a decade and never used it. It leaves the family with a bad memory."
The more sophisticated critical care has become, says Rich, the more difficult it is for clinicians to either discern that a patient is dying or accurately prognosticate which patients will survive the hospitalization and which ones will not.
"The obsessive focus on artificially maintained vital signs as evidence that the patient is neither dead nor dying poses major problems," he adds.
When the patient enters the critical care setting and a host of therapies are introduced in the hope of reversing or remediating the patient’s disease or injury, the family typically views this as appropriately aggressive medical treatment.
"However, in those unfortunate circumstances in which the therapies do not work and the patient continues to decline despite all of these measures, critical care physicians naturally begin to discuss why discontinuation of these measures is now medically appropriate," says Rich.
Providers might explain that goals of care are shifting to allow the patient to experience a peaceful death unencumbered with superfluous and burdensome technology.
"Not infrequently, at this point some families will push back and charge the physicians with playing God,’" says Rich. He points to the 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), which found substantial shortcomings in care for seriously ill hospitalized adults.1
"I have seen no compelling evidence that in the intervening 20 years we have become markedly improved in our practices," says Rich. There are serious deficiencies in even the most distinguished academic medical centers, he adds, with regard to communication about patient values and preferences, the goals of care, and the relief of patient distress.
"This is despite a voluminous literature on strategies for bringing about such improvement," says Rich. The principal investigators for the SUPPORT study recommended that critical care physicians ask themselves, "Would I be surprised if this patient died within the next two weeks?" If the answer is no, then both disease-directed and palliative measures should be provided simultaneously.
"This ensures that at the very least, dying in the ICU is not routinely characterized by pain and suffering," says Rich.
Edwin Forman, MD, Professor of Pediatrics, Division of Pediatric Hematology/Oncology, Icahn School of Medicine at Mount Sinai, New York City. Phone: (212) 241-7022. Email: firstname.lastname@example.org .
Ben A. Rich, JD, PhD, Professor and School of Medicine Alumni Association Endowed Chair of Bioethics, University of California, Davis Health System. Phone: (916) 734-6010. Fax: (916) 734-1531. Email: email@example.com.