For patients and families to make informed choices about their own end of life care, reporters in every news medium must select more accurate language to describe and analyze noteworthy cases and concepts, said members of a panel at the Association of Health Care Journalists Conference in Denver Thursday.
“People learn from media reports and discussions of media reports, so the quality of media matters,” said Nancy Berlinger, a Hastings Center research scholar. The Hastings Center, a non-partisan bioethics research institute, sponsored the session.
THE CASE OF JAHI MCMATH
Berlinger took issue with the extensive and often inaccurate coverage of the recent case of 13-year-old Jahi McMath. Though the teen was declared brain dead in an Oakland Hospital this past December following surgery to remove her tonsils, adenoids and uvula, her family did not accept her physicians’ determination of death. The McMaths won a court order to keep Jahi on a ventilator and obtained permission for a transfer to an undisclosed care facility.
“When people talk about brain death, there can sometimes be the idea that it is completely up for grabs,” Berlinger said, citing the Uniform Determination of Death Act– a draft state law approved for use in 1981 that has been adopted in most states. The Act states that death can be determined in an individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem.
“Objections to the determination of death do not change medical facts,” Berlinger argued, questioning whether the media’s allowance of equal time and space to the McMath family and their perspective was a disservice to the public.
Berlinger explained that much coverage focused on a “fight to keep the patient alive,” rather than an objection to a death determination. “The patient’s family’s opinion was presented as a legitimate prognostic possibility.”
This confusion about brain states is difficult to undo, Berlinger said, arguing that it was exacerbated by repeated use of the term “life support” in reports about the case. As Berlinger explained, “life support” is not applicable to patients who are not alive.
Lisa Krieger, an award-winning science and medical research reporter with the San Jose Mercury News, said such language sparked disagreement in her own newsroom. While editors argued for the use of the term “life support,” Krieger pushed for “organ support.” The newspaper settled on printing “ventilation” and “breathing machine.”
Poor understanding among the media of such nuance led to poor understanding among the public, Krieger added. “I have a lot of remorse for the role we played in all of that.”
PALLIATIVE CARE AND HOSPICE
More accurate language across the spectrum of health care journalism can also clear up public misunderstandings about palliative and hospice care, said Dr. Daniel Johnson, a palliative care specialist at Kaiser Permanente’s Care Management Institute.
As recently reported in the New England Journal of Medicine, about 70 percent of Americans say they have no familiarity with palliative care, a medical specialty which Johnson argued can improve the quality of life for all patients diagnosed with serious illnesses and their families.
“Journalists are the interface about what is happening clinically and how the public is going to react to it,” Johnson said. In discussing palliative care in the context of “serious” or “chronic” illness rather than in conjunction with the “end of life,” Johnson argued that the practice becomes more appealing.
“The public is more okay with the term ‘serious illness,’” he said. According to the Center to Advance Palliative Care, the specialty is intended to provide an “extra layer of support” at any stage of serious illness, in conjunction with or without curative therapy.
Results of a 2010 study published in the New England Journal of Medicine revealed that not only did patients who received palliative care early in their cancer treatments report better quality of life and were less likely to be depressed than those who did not, but that palliative care patients also experienced longer median survival.
Despite such benefits, roadblocks to palliative care are numerous, Johnson said. Among them: referral challenges, staffing shortages and assumptions that palliative care and hospice care are the same.
“War-like language” in the media is especially problematic, Johnson explained, as patients are often depicted as “battling” diseases that others may not feel like “fighting.” Such cliches, he explained, reinforce assumptions that patients must pursue aggressive treatments in all circumstances.
“Destination language,” as Johnson called it, also does a disservice to end of life care overall. His examples of such language:
Is she ready for palliative care?
Is he in hospice?
Better wording, Johnson said, would be:
Is John receiving hospice support?
In staying away from “war” and “destination” vocabulary, Johnson said journalists will avoid “categorizing groups of people in categories they don’t want to be stuck in.”