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Not Discussing End-Stage Disease Prolongs Futile, Costly, and Painful Care

Cheryl Clark, for HealthLeaders Media, June 29, 2010

Doctors need to do a much better job promptly communicating with terminally ill patients and families about the usefulness of aggressive treatments, but they lack a simple evaluation tool that would provide guidance to launch those talks.

That's according to a study by Anne M. Walling, MD, a UCLA physician, and her colleagues at Ronald Reagan UCLA Medical Center and RAND Corp., which found that "even after 48 hours in the intensive care unit or on the ventilator, more than half of patients had no medical record documentation about goals of care or an attempt to pursue the topic." The report is published today in the Archives of Internal Medicine.

The researchers used their own developed set of 13 quality indicators to evaluate medical records of 496 patients admitted with end-stage disease who died between April 2005 and April 2006.

They said that overall, the palliative discussions and treatments were appropriate 70% of the time. But the system fell short in the timeliness of launching discussions about the usefulness of continuing mechanical breathing, for example, which occurred only 50% of the time.

Likewise, when a patient has a DNR (do not resuscitate) order, the medical record should document patient participation in the decision or why the patient did not participate. Only 40% of patients' records passed that measure.

And when a patient is admitted to the intensive care unit and survives 48 hours, then within 48 hours of admission the medical record should document the patient's preferences of care have been considered, or an attempt was made to identify them. But only 46% of patients' charts passed that test.

The researchers wrote that medical care "cannot be guided by informed choices absent communication about current clinical status and what course is likely to follow."

Walling acknowledges that these conversations are tough to have. Doctors often don't have time. Family members aren't always available. Cultural beliefs lean toward holding out the last bit of hope that the patient will recover if only given more time.

But much of those obstacles can be overcome with protocols such as their 13 quality of care process checks which include eight "goals of care," three pain guidelines, and two shortness of breath or dyspnea indicators. For example, meeting a goal of care might be making sure that a patient enrolled in hospice who has an implanted defibrillator has the device deactivated or medical record documentation why it was not. In the UCLA study, only 25% of 496 patients who died passed that test.

Such discussions are important so that family members and the patient are fully informed about prognosis when chances of recovery wane to the extremely unlikely.

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