Health Care

Nancy Cruzan’s legacy: Open talk about death with dignity

Nancy Cruzan died Dec. 26, 1990, after her feeding tube was removed.
Nancy Cruzan died Dec. 26, 1990, after her feeding tube was removed. File photo

Twenty-five years after Nancy Cruzan’s death, her niece Miranda Lewis has been beset by hard end-of-life decisions within her own family.

In August, Lewis’ mother, Christy White — Cruzan’s sister — died at age 59 after six months of hospice care, in accordance with her wishes. She declined chemotherapy and other treatments that may or may not have reduced massive brain tumors.

And Lewis’ father-in-law this month died from renal cancer after choosing hospice over aggressive hospital therapies.

Lewis was only 13 during a cold holiday season when a Jasper County, Mo., probate judge allowed Cruzan’s family to stop the feeding and hydration that for eight years had kept Aunt Nancy alive.

Cruzan was 25 when a car wreck threw her face-down in a ditch, deprived of oxygen for more than 12 minutes. She was resuscitated but left in a “persistent vegetative state” and deemed never to recover.

The removal of her feeding tube ended a right-to-die case that transfixed America. As The Kansas City Star reported upon Cruzan’s death that occurred Dec. 26, 1990: “Discussions about life support and medical treatment moved from doctors’ circles to dinner tables” because of her family’s agonizing fight.

“It’s so ironic now … how things came full circle for us,” Lewis said.

“After 25 years, I think everyone feels so much freer to have these conversations. To feel such an impact, I couldn’t be more proud.”

Now public proposals on how best to die are intensifying.

California Gov. Jerry Brown in October signed a measure clearing the way for physicians to prescribe drugs that allow patients with terminal diagnoses to end their lives.

More than two dozen states, including Missouri and Kansas, are weighing similar “death with dignity” bills. Most aren’t expected to pass.

Cruzan’s niece lives in Joplin, Mo., and works for a Catholic hospital foundation. She is not ready to support physician-assisted suicide, nor are major medical associations or ethicists — even though U.S. public opinion favors it.

Yet Lewis said any airing-out of treatment options should be encouraged, among families, care facilities, policymakers, physicians and their patients. That is Aunt Nancy’s enduring legacy, helping spur discussions about dying the way an individual would choose, if one could.

69 percentof Americans say physicians should be allowed to help terminal patients die painlessly if they or family members request it

26 percentof Americans 18 or older report having completed living wills or other documents specifying end-of-life treatment choices

27states have drafted death-with-dignity bills in the past year

1,392lethal medications have been prescribed to terminally ill patients in Oregon since 1997

Relatively few families broached such topics before the U.S. Supreme Court took up the Cruzan case.

For the first time in the court’s history, justices affirmed in June 1990 that the 14th Amendment to the Constitution allowed people to refuse unwanted medical treatments ordered by states — in this case, Missouri — that would artificially extend life.

Though subject to state controls, the so-called right to die had gained federal protections through Cruzan, said lawyer William H. Colby, who argued her family’s case before the courts.

“With baby boomers aging and medical technologies advancing, it’s a discussion that continues today. And I think it’s important for families to have it,” said Colby. Since 1990 he has written two books on the subject and now serves as general counsel for Truman Medical Center.

The discussions clearly are taking place in the area of living wills. The documents strive to make clear end-of-life choices before a patient loses the ability to make them, said Leawood estate lawyer Michael Ong.

“It’s on everyone’s mind,” said Ong. “And in almost every client meeting regarding living wills, I’ll mention the Cruzan case.

“I will explain the procedure that family had to go through.”

Vital discussions

In ruling on Cruzan v. Director, Missouri Dept. of Health, the U.S. Supreme Court hardly gave the family free rein to end Nancy’s life.

The court held in a 5-4 decision that her parents must meet the state’s requirement of showing “clear and convincing” evidence that the patient would want the outcome they were seeking.

“There’s no question in my mind,” father Joe Cruzan insisted, that Nancy would rather “die with some dignity” than linger indefinitely on a feeding tube at the Missouri Rehabilitation Center.

But Nancy’s desires were nowhere documented.

Joe and wife Joyce Cruzan prevailed only after returning to a Jasper County courtroom with witnesses who testified that Nancy had told them, while working in a facility for children with disabilities, that she would not want to live in a vegetative state or be force-fed.

Polls across the country showed overwhelming public support for the Cruzans having the right to decide Nancy’s fate in the face of opposition from then-Gov. John Ashcroft. Their rights would have been more evident, however, had the family been able to produce her wishes on paper.

Thus the need for living wills — “advance directives,” in legal jargon — or at least for discussing with family members end-of-life possibilities.

“For my clients who had a parent or friend struggle with a difficult, prolonged death, they get it,” said estate planner Ong. “You’re not doing it (making your wishes known) for yourself. You’re doing it for your family.”

One immediate outcome of the Cruzan case was the federal Patient Self-Determination Act, which became effective in 1991.

Pushing for the legislation were then-U.S. Sen. Jack Danforth, a Missouri Republican, and the Kansas City-based Center for Practical Bioethics (known at the time as the Midwest Bioethics Center). The measure required that hospitals and other facilities receiving Medicare and Medicaid payments inform patients about living wills and other ways to ensure that desired care be given or withheld.

The law gave rise to what today is known as DNR — “Do Not Resuscitate” requests signed by patients entering the hospital. Experts advise that a friend or family member also be chosen in advance of a medical crisis to speak for patients unable to communicate.

Cases such as Nancy Cruzan’s “have come down to making people look at the reality of how many deaths happen,” said Leslie Champlin, spokeswoman for the American Academy of Family Physicians. “We don’t all die comfortably in our sleep.

“That’s why it’s so vital to have these discussions ahead of time, not only with your family but with your physician.”

How much control?

In recent years the catchphrase “right to die” has taken on a variety of incarnations, including causes that go by terms such as “aid in dying” or “death with dignity.”

The new California law allowing for physician-assisted suicide won’t take effect for several months and is facing a petition drive to repeal it by voter referendum.

“The only people who call it ‘physician-assisted suicide” are the people who oppose it,” said Anne Singer of Compassion & Choices, a patients-rights group instrumental in the movement.

Gallup polling has found that a majority of Americans for the past 20 years have said that doctor-assisted suicide under some circumstances is acceptable.

In 2015, as much as 69 percent said doctors should be allowed to assist requesting patients to kill themselves if they have “a disease that cannot be cured and (are) living in severe pain.”

Three years after Cruzan’s death, Oregon voters became the first in the nation to approve physician-assisted suicide by the narrowest of margins, 51 percent to 49 percent.

The same 51-49 split arose in opposition when such measures were defeated by voters in Massachusetts and Maine.

Barring a voter repeal of its new law, California will join three other states — Oregon, Washington and Vermont — with statutes that allow willing physicians to prescribe life-ending drugs to patients who are diagnosed to have six months or less of life remaining.

The California effort gained traction last year when native Brittany Maynard, who had terminal brain cancer, made a viral video and national headlines by choosing to move to Oregon to die.

She and her family had lobbied for death with dignity before Maynard died in Oregon, quickly and without pain, at age 29.

In the quarter-century since Cruzan’s death, society and lawmakers have been “defining how much control we have over the end of our lives,” said Peg Sandeen, executive director of the Death With Dignity advocacy group in Oregon.

“Death with dignity is a smaller movement within the right-to-die (cause), which is a very broad movement,” Sandeen said. “We are hopeful that California is the tipping point” that ultimately will lead to physician-assisted suicide being legal nationwide.

Oregon’s experience has not brought a rush of death-seeking patients into the state.

Since 1997, lethal medications there have been written for about 1,400 patients. About two-thirds of them died from using the prescriptions, the state reports, while many of the rest requested prescriptions but never took them.

For now the American Medical Association “does not support” physician-assisted suicide. Nor does the Center for Practical Bioethics — which backed the Cruzan family’s efforts to remove Nancy’s feeding tubes — and several religious groups remain opposed.

Catholic policy on right-to-die issues is not as restrictive as many believe, said John Morris, who is director of health care for the Diocese of Kansas City-St. Joseph and who also teaches medical ethics at Rockhurst University.

“You don’t have to do everything possible to preserve your own life. That’s a common Catholic misunderstanding,” said Morris.

The church says it’s OK for patients to forgo futile treatment, he said. The same goes for overly burdensome medical costs on a family whose loved one is soon expected to die.

But Morris said physician-assisted suicide crosses a moral line.

It feeds into a culture that “thinks that if you’re not satisfied with life, you should be able put an easy end to it,” he said.

“What I don’t like about the language of right-to-die is it’s often antagonistic. It becomes the health care institutions versus the sick patient … when we all should be working collaboratively toward the best end-of-life care.”

‘Everybody is different’

For the Cruzans and other families facing grueling life-or-death issues, there is no such thing as victory.

“For those rare cases that get to a place where judges need to decide, there are no winners,” said Myra Christopher of the Center for Practical Bioethics. “It’s tragic all the way around.”

Right-to-life protesters picketed outside the hospital near Joplin where Nancy lay unconscious, physically able to gag down an occasional spoonful of food but not enough on a regular basis to sustain life.

On cold days, her father, Joe, a sheet-metal worker, “brought out an extension cord and pot of coffee to the protesters outside,” said lawyer Colby. “He told me he wasn’t being magnanimous; he just thought they could use some hot coffee.”

In 1996, Joe Cruzan committed suicide. He had long battled depression, before and after the legal battle to help his daughter die with dignity.

Joe’s suicide note made no mention of Nancy but expressed love for his wife, daughters and granddaughters, including Miranda.

Right-to-die opponents tried to link Joe’s suicide with the family’s decision to put Nancy to rest.

“We never saw that connection,” Miranda Lewis said, “though we all lived through a pretty painful time.”

The Cruzan family thought it important that young Miranda and her sister Angie be involved in family discussions and court appearances pertaining to Aunt Nancy.

Miranda Lewis as an adult pursued a public-relations career and wound up in hospital work. After the 2011 twister destroyed St. John’s Medical Center in Joplin, Lewis worked with the media as they covered the aftermath of the disaster.

The event for her further underscored the unpredictable fragility of life.

“Everybody is different,” she said. “Some people want medical treatment until the very last breath is out of their body. And I respect that.”

“The important thing is to start the conversation” as early as when teenagers obtain drivers’ licenses indicating whether they wish to be organ donors, she said.

Miranda’s mother, White, headed the Cruzan Foundation and gave talks about the need to start that conversation.

But when pressed by reporters to comment on other right-to-die cases, such as the 2006 legal proceedings in Florida revolving around the incapacitated Terri Schiavo, White declined to give an opinion.

Just as she, Nancy Cruzan’s sister, questioned why outsiders would weigh in on her family’s choices, so White honored the decisions of others.

This year she shared her final months in hospice on Facebook.

“I had people tell me afterward how great it was to follow along on her journey,” which involved the entire family, said Lewis, 39.

“I attribute that to everything that happened with Nan.”

Rick Montgomery: 816-234-4410, @rmontgomery_r

Right-to-die by the numbers

69 percent of Americans say physicians should be allowed to help terminal patients die painlessly if they or family members request it.

26 percent of Americans 18 or older report having completed living wills or other documents specifying end-of-life treatment choices.

27 states have drafted death-with-dignity bills in the past year.

1,392 lethal medications have been prescribed to terminally ill patients in Oregon since 1997.

Sources: Gallup, American Journal of Preventive Medicine, Compassion & Choices.

For documents, more information

To download state-specific documents spelling out end-of-life options, known as advance directives, go to the website of the National Hospice and Palliative Care Organization, CaringInfo.org.

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