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'Put the fire under us': Church spurs parishioners to plan for illness and death

Melissa Bailey, Kaiser Health News on

Published in Health & Fitness

"Why is she rushing?" Hackshaw asked. "Do you need the machine for something else?"

Mistrust of the medical establishment is one major reason black Americans are less likely to write down their end-of-life wishes, and more reluctant to end life support, White-Hammond later said. That mistrust stems partly from historical racism, including segregated hospitals, forced sterilization of black women and the infamous, government-led Tuskegee syphilis experiment that denied effective treatment to black men.

The mistrust persists today as "race becomes more tense" across the country, and as people continue to experience disparities, White-Hammond said. Like some other black church leaders across the country who are trying to change perceptions around hospice, White-Hammond believes cultural change can start at church.

"We're capitalizing on our credibility as an institution of faith" to drive conversations around end-of-life care, she said. The goal, she said, is to make these discussions "part of the culture."

Another obstacle, White-Hammond said, is that people don't want to talk about death.

Rhona Julien, another parishioner who hails from Trinidad, said she regrets avoiding the discussion with her mother before she died three years ago. When her mother started to talk about dying, Julien would change the subject.

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"I never wanted to deal with it," she said.

But she said she learned a lot from her mother's death, including the pressure families could create to keep a person alive. Julien, a 58-year-old environmental scientist, was the sole caretaker for her mother, who had pulmonary fibrosis. At the very end, Julien said, her siblings wanted to put their mother on a ventilator, to keep her alive long enough so that they could fly from Trinidad to say goodbye. Julien refused.

"She's not going to be connected to a machine to keep her alive for other people's benefit," Julien recalled thinking.

"Nobody should be hooked up to this and that, like Frankenstein," she said.

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