When Helen Fischer died of congestive heart failure, her family had a detailed road map to guide them. The 93-year-old mother of five had selected her coffin, the music, the poem and identified who would do what at her funeral mass.
She didn’t stop there; she also made her medical wishes clear.
In what would be the final 10 days of her life at St. Vincent Healthcare and RiverStone Health Inpatient Hospice Home, her family could tell the physicians that she did not want to have her life artificially prolonged.
“She took the burden of what to do in those final days away from us,” said Ken Fischer, 67, one of her four sons. “That’s a gift.”
Long before she unexpectedly became ill in October 2012 and entered palliative care at St. Vincent Healthcare, the matriarch had completed her Five Wishes, a living will that addressed her personal, emotional and spiritual needs as well as her medical wishes. It is also known as an advance directive. Her forethought eliminated any questions or family arguments over what to do for their dying mother.
“It keeps dignity in the family,” said Fischer’s only daughter, Judy Jensen, 64, of Billings. “It also gave Mom dignity because she made the decision when she was of sound mind.”
The late Fischer belonged to a minority of Americans who communicate their wishes about how they want to be treated if they become unable to make medical decisions for themselves. Although the Patient Self-Determination Act of 1990 requires most health care organizations to inform patients of their right to make advance directives, less than 20 percent of Americans have an advance directive in place.
Mary Kofstad, a certified oncology nurse practitioner and director of Inpatient Palliative Care and Pain Management at St. Vincent’s, said the lack of planning is evident in Billings. A review of patient data over an eight-month period in 2012-13 at St. Vincent showed that more than 60 percent of the patients they saw for palliative care or pain management did not have an advance directive.
“It floors me when I have somebody come in with this big, open family and they’ve never talked about it or ever thought about it,” Kofstad said. “They have no idea what their loved one wants.”
Making health care decisions for patients who cannot is emotionally taxing for families and can pose an ethical and moral dilemma for physicians, Kofstad said. The absence of an advance directive can often pit family members against one another.
There are multiple reasons people don’t write down their wishes, Kofstad said. The primary reason is that people don’t want to think about dying or becoming physically incapacitated.
“It’s tough,” she said. “I’m 35 and I don’t like to talk about death.”
But it is necessary. Everyone older than 18 should have an advance directive, Kofstad said, using Terri Schiavo to illustrate her point.
Schiavo wasn’t thinking about dying in February 1990 when, at age 26, she collapsed at home and oxygen was cut off to her brain for several minutes. She spent 15 years in what doctors called a persistent vegetative state, while her husband and parents fought a legal battle over whether to prolong her life. Ultimately a court sided with her husband, who wanted to remove Schiavo’s feeding tube. She died 13 days later.
An advance directive would have avoided the national controversy and the public suffering her loved ones endured, Kofstad said.
People can have a heart attack or get into an accident at any age, she said.
As the population ages, the need for these end-of-life discussions will become more common, Kofstad said. In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.
“It’s really important to have your autonomy and dignity respected,” Kofstad said. “Each of us as individuals has that right.”
The push at St. Vincent Healthcare to get people to write their wishes down is mirrored on the national stage. Ellen Goodman, a Pulitzer Prize-winning columnist, has founded The Conversation Project, an effort designed to help families start a conversation around their wishes if they are ill or incapacitated.
The organization grew out of Goodman’s experience when her mother became ill and died. She had not written down her wishes.
“We have to change the way people are dying,” Goodman told reporters gathered for the Association of Health Care Journalists conference in Boston in March. Many Americans are not dying as they would choose, she said.
Research supports her thesis. In 2005, 70 percent of Americans died in a hospital or long-term care facility, yet public opinion polls show an equal percentage would prefer to die at home, according to the Centers for Disease Control.