As millions of baby boomers age and health costs continue to rise, Americans are ready and willing to have open and honest discussions about death and dying, Life Matters Media President Randi Belisomo told a crowd gathered at a Chicago conference exploring end of life care.
“Americans are not talking about end of life issues as much as we should be,” said Belisomo Saturday during “Dying to Know: Life Affirming Conversations About Living and Dying Well,” a day-long event hosted by the Replogle Center for Counseling and Well-Being at Fourth Presbyterian Church. “But through the proliferation of information, education, media and community building, we can begin telling real-life stories about death and dying.”
If Americans become more comfortable with talking about the inevitable, patients nearing death may be more likely to enroll in hospice care and share their end of life care wishes with close family and friends, she said. Just as breast cancer, colon cancer and same-sex marriage were once rarely discussed and considered taboo, a cultural change is now making discourse surrounding mortality more common.
“There is ample evidence of the public’s desire for information,” she said. “Look at The New York Times’ bestseller list;” Belisomo pointed to Being Mortal, by Dr. Atul Gawande, Smoke Gets in Your Eyes, by Caitlin Doughty, and Roz Chast’s Can’t We Talk About Something More Pleasant?
Belisomo opened her speech with her own experiences facing death and terminal cancer. In 2010, her husband, Carlos Hernandez Gomez, died of complications associated with colon cancer. She said the two did not discuss his end of life care preferences.
“Doctors told us his cancer was ‘treatable,’ even though it was incurable. We went full-steam ahead doing whatever we could to elongate whatever time we had left,” she said. “If metastatic cancer is a fight, it’s not fair. If it is a war, it’s not winnable. All of the militaristic language is misleading.”
He continued to receive chemotherapy and other treatments instead of enrolling in a hospice or palliative care program. Belisomo said she did not want to give up hope or take away his own.
“Ours was just one more example of failure to take all the steps we should have taken,” she said. “We didn’t think about how Carlos would do his own dying.”
Months after his death, Belisomo and his oncologist, Dr. Mary F. Mulcahy, were inspired to launch Life Matters Media. She hopes news and information provided by the nonprofit will inspire Americans of all ages to talk about death.
“Stories like mine are not outliers, they are the norm.”
Dying In America
Much of the latter half of her speech was devoted to the Institute of Medicine’s widely circulated report, Dying in America.
The 2014 report cited the present as the best time to normalize conversations about death and dying, as millions of aging baby boomers will soon face difficult end of life care decisions for themselves and for their family members.
“Many Americans don’t know how to bring up end of life conversations. It needs to become the norm to have these conversations with family and doctors,” Belisomo said. “Death is not how it used to be. The stakes are gigantic.”
The IOM’s report also emphasized the urgent need for increased palliative services– medical care that provides pain relief and centers on enhancing the quality of life among the chronically or seriously ill.
A shift towards comfort care could save Medicare billions of dollars over the next decade. Seventy percent of U.S. deaths are paid for by Medicare, and 30 percent of Medicare spending is used on patients in their last year of life.
“Much of that care is unwanted and wasteful and futile in scope,” Belisomo said. “There is an urgent need for health care overhaul. The IOM calls for more person-centered care that minds the needs of patients, families and their values.”