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Changing The Culture Of End Of Life Care: LMM Addresses Palliative Care Providers

Dr. Mary F. Mulcahy, MD and Randi Belisomo, co-founders of Life Matters Media, addressed a symposium at Northwestern University of palliative care providers as part of the “Preventing Readmissions through Effective Partnerships” initiative in a talk entitled “Changing the Culture of End of Life Care.”

The initiative, also known as PREP, seeks to lower Illinois hospital readmission rates and move the state’s national ranking from the bottom to the top quartile. PREP aims to achieve this goal by providing new tools and approaches to improve transitions of care. The PREP program’s core focus on communication skills aligns with the mission of Life Matters Media, a non-profit organization dedicated to enhancing and improving dialogue among all involved in end of life decision making.

There’s a fine balance we all must strike in communicating honestly, while not alienating our audience from the issues we want them to address.

PREP“We want to get people thinking about their beliefs and motivations, their health, their experiences with the end of life in their own family and circle of friends, and what their definition of living well is,” Belisomo said. These thoughts can spark conversations, Belisomo explained, that may eventually lead to the completion of advance directives that outline end of life wishes for medical providers and family members. Life Matters Media aims to spark such thoughts, conversations, and advance directive completion by leveraging media outlets to provide more coverage of these issues. Such coverage, Belisomo said, can lead to more familiarity among audiences; that familiarity may then lead to greater comfort with a topic that is often considered taboo.

“Advance directives are fantastic, and we should be completing them,” Mulcahy said. “But wouldn’t it be easier to fill out those forms and have these conversations if the idea of the end of life is in the consciousness of patients for years and years, and it started when we picked up the newspaper, or opened a magazine, or turned on the TV.”

Symposium participant Mileva Savich, a social worker at Northwestern Lake Forest Hospital, shared a personal story about her own parents- both of whom received respiratory treatment on ventilators at the end of their lives. “It was so rough on all of us, and we are traumatized still,” she said of her family. Savich asked if there was a better way to educate the public about what the end of life actually looks like. In doing so, she offered, perhaps patients and caregivers would make different medical treatment choices if they knew the actual impact of those options.

Mulcahy said she wasn’t certain such a depiction was the best approach. In providing graphic images of death in intensive care units, she said, an audience may be turned off from discussing the topic entirely. “There’s a fine balance we all must strike in communicating honestly, while not alienating our audience from the issues we want them to address,” she said.

Emily Rosencrans, a Northwestern Lake Forest Hospital chaplain, agreed. “For some people, they believe it’s almost that having the conversation will bring death to their door.” Rosencrans explained that many patients with whom she interacts wish only to focus on extending life- quantity of time, not quality. “We are such a death-denying culture, and people just don’t want to go there.”

Mulcahy outlined examples in which the media has not only increased comfort within a realm of health care, but has brought about substantive change within it. One such example is what has been dubbed the “Katie Couric Effect” on colon cancer. In March of 2000, the then-host of the Today show underwent a colonoscopy on national television, and in the months following, test rates jumped more than 20 percent across the country. For many, the stigma surrounding the disease has been lifted. “The same can be true for end of life decision making,” Mulcahy said.

Gordon Wood, a palliative care physician at Northwestern Lake Forest hospital, said he agreed with the need for such exposure. “But why has there not been a ‘Katie Couric’ moment for end of life planning?” he asked.

Eytan Szmuilowicz, a palliative care physician with Northwestern University’s Feinberg School of Medicine, said the answer is simple. “There’s not a happy ending,” he said. “It has to be framed as a ‘good death,’ and the concept of a ‘good death’ is harder for society to understand.”