Covering the Final Days: Five Tips from AHCJ’s End-Of-Life Webinar

It’s easy to fall into clichés and misinformation when writing about the end of life. The Association of Health Care Journalists hosted a webinar last week that offered many practical tips for improving that type of reporting. If you weren’t able to tune in, here are my five favorite ideas:

Recognize That Technology Can Make Things Worse. If you haven’t had a chance to read some of the pieces in “Cost of Dying,” the series by Lisa Krieger at the San Jose Mercury News, take a minute to do so. “It’s a lot more fun to write about cures and clinical trials and breakthroughs and all that stuff that gets us on the front page,” Krieger said. “But a lot of the interventions and strategies are really awful and futile and catastrophic at the end of life. That’s something that a lot of readers are just now beginning to appreciate.” Krieger writes not just about the financial cost but about the human cost of medical interventions that can do more damage than good. “How we die matters, and talking about it and thinking about it matters,” Krieger said. “It matters to the folks who die, and it matters to those who survive.”

Get Your Terms Right. Nancy Berlinger, a researcher in bioethics at the Hastings Center, encouraged writers to choose their words carefully. “Make sure any term you are using represents to the best of our knowledge how this term is used clinically,” Berlinger said. She gave two great examples: coma and brain death. These terms are often used interchangeably or are used in a way that indicates a person just fell asleep and will wake up soon. She also talked about “medically supported nutrition and hydration” as compared to “giving the patient food and water.” The terms have very different connotations that can change the dynamic of your story and the conversation about your story.

Keep Culture in Mind. Dr. V.J. Periyakoil from Stanford explained how the best kind of end of life care integrates care for the biological problems at hand with the psychological, sociological, spiritual and cultural. “We often don’t stress the cultural aspects of care,” she said. And this has a real impact. Hospice care at the end of life has proven to be a very effective transition both for the patient and for the patient’s family and friends. But if you are Latino, you are less likely, for a variety of reasons, to access hospice care. As Periyakoil noted, Latinos make up about 17% of the U.S. population but only a tiny fraction of the patients in hospice care.

Think for Two. “The decisions a person makes for themselves are different than decisions they would make on behalf of someone they love,” Periyakoil said. “Guilt and love can cloud how they would make decisions.” As a reporter, you have to keep that in mind when you are talking to the person who is dying, to their circle of supporters, and to their physicians. Don’t assume everyone is motivated by the same aim. Similarly, Periyakoil raised the issue of money. “If someone were getting care and seeing a running tab of how much the expenses are and what the copay is going to be, what would they think?” she asked. Would they say no to some treatments? Would they worry about bankruptcy, which is a very real possibility for medical bills? “As a doctor, I’m not often thinking about insurance, which is both good and bad,” she said. As a reporter, you should be.

Let Grieving Happen. During those final days (or minutes), a reporter’s priority can be to take as many notes or photos or as much video as possible. This is going to be the climax of the story, right? You are looking for details, emotion, the final words even. But you also can be getting in the way of the grieving process. The person dying often is grieving the loss of his or her own life, and family and friends are grieving the loss of someone they love. Sure, they may have invited you in to watch, but you have less emotion tied up in the event than they do. And you need to be respectful. “This can be a very challenging time. People talk about this cascading of emotions,” Berlinger said. “The person may need to take a break. And you can offer them that break.”