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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

A 23-year-old Haitian-American woman in the group said she has not been comfortable speaking up to her family about her grandmother's care. (She declined to give her name, for fear of upsetting her family.)

She described her grandmother, who moved to the U.S. from Haiti, as an independent, strong-minded woman who would regularly walk an hour to church instead of taking a bus. She raised three kids on her own and made a life in the U.S., even though she didn't speak English, couldn't read and had no formal education.

Her grandmother was so prepared for death that she had a drawer in her room with clothes that she planned to wear at her funeral -- an elegant white suit and white, wide-brimmed hat. She would check the drawer every couple of weeks.

But when the grandmother had a stroke a couple of years ago in Randolph, Mass., doctors asked if she should be kept on feeding tubes or offered only comfort care. The family chose feeding tubes. The grandmother, who is 85 and cannot walk or talk, has been living in a bed ever since.

The young woman said she feels frustrated that her family didn't prioritize what her grandmother would want.

"We were hoping for a miracle," she said. But she knew her grandmother "wouldn't have decided to live a life where she would be bound to a bed."

Dr. Alice Coombs, one of three black female doctors participating in the evening's discussion, turned to the young woman and gently suggested that she speak up on her grandmother's behalf.

"I took it as a challenge," the young woman later said, "to talk about this topic."

 

Julien said she was initially reluctant to talk to her own kids about her end-of-life wishes -- "Are you jinxing yourself?" she wondered -- but she successfully broached the subject as part of homework for the workshop.

After watching the film "Extremis," she said, she felt motivated to take the next step: "I'm going to fill out these forms!"

As the discussion ended, White-Hammond prayed to God for help filling out those end-of-life forms. "Put the fire under us," she asked, so the task doesn't languish "on the to-do list."

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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