Sacramento woman, 96, gives family the gift of planning her own peaceful death
01/29/2012 12:00 AM
01/29/2012 3:44 PM
It was December when Jeanada Nolan told her family the time had come.
She was 96, a longtime breast cancer survivor who had lost her eyesight to macular degeneration in 1997, but it took more than blindness to slow her down. She remained sharp and independent, the same strong woman who had helped create California's master plan for preschool education in the 1970s.
Last fall, she developed excruciating neck and back pain, the result of almost a century of wear and tear, and physical therapy proved unhelpful. Pneumonia sent her to the hospital not long after Thanksgiving. She was released not to her Sacramento independent living center but to a nursing home, and her doctor told the family that she would never live on her own again.
"She was in tremendous pain," said her son, Tom Nolan, 66, a Palo Alto criminal defense attorney. "She'd made it clear all along that she did not want extreme measures taken."
And so Jeanada Nolan gave her family an extraordinary gift: She planned and expressed her final wishes. What she wanted, she told her family, her doctor and the nursing home staff, was care that would keep her pain under control but involve no other medical intervention.
"It was difficult for me, because I just adored Jeanada," said her physician, Dr. David Lehman. "But she said, 'Don't treat me.' "
Jeanada Nolan wanted to fade gracefully away on her own and die a natural death. She signed the documents to allow that to happen, then asked her grandson to bring her a serving of her favorite ice cream from Burr's Fountain in east Sacramento.
How do people want to die? How do they define what's important enough to their quality of life for them to continue living? And how do families make sure their loved ones have "good" deaths, a peaceful passage from life with as little suffering as possible?
These end-of-life decisions are of pressing concern not only to the elderly but also to baby boomers dealing with their parents' deaths and considering how to shape their own last days based on those experiences.
"I think there's a shift going on with people's attitudes, but the pace is at a glacial speed," said Dr. Jeff Gordon, an Ohio physician and pastor who has written extensively about the issues.
"People are not informed about what happens at the end of life. Many patients receive care at the end of life that they'd decline if they were given the opportunity to do so."
Institute of Medicine research has found that a vast majority of people say they want to die at home, with no aggressive care taken to keep them alive. Yet the opposite tends to occur: Of the 1.8 million people age 65 and older who died in 2005, for example, almost 43 percent died in emergency rooms, ambulances or inpatient care, according to U.S. Centers for Disease Control figures.
"People are in severe pain," said Gordon. "They want pain control, and they want to be with their families, and they don't want unnecessary measures. But almost one-third of older people die in intensive care."
Not surprisingly, the cost for end-of-life intervention is steep. Nearly 30 percent of Medicare funds are spent on a tiny fraction of the elderly in the last months of their lives – slowing death, not preventing it.
Consider for a moment what delaying death can involve. Cardiopulmonary resuscitation – CPR – which often breaks fragile aging ribs, successfully revives less than 5 percent of elderly patients to the point of leaving the hospital.
"The public often has a romanticized feeling about what it's like to resuscitate somebody," said Debra Bakerjian, a UC Davis nursing school adjunct professor and vice chairman of the UC Davis Medical School's family medicine department.
"People know what they've seen on TV, but the reality is quite different. And people are confused about what it is to die a natural death."
People who are dying will stop eating, Bakerjian said, and as a result, families typically worry that their loved ones are going to starve.
"But it's a natural transition," she said. "Grandmother isn't hungry. She's not suffering."
Most of the time, she doesn't need a feeding tube, either – and relatives aren't aware that feeding tubes and ventilators can cause a host of painful complications.
It's important, medical professionals say, for families to understand the difference between allowing natural death by not fighting infections or performing unnecessary procedures, on the one hand, and hastening a loved one's death through measures such as assisted suicide.
Both involve controlling pain. But assisted suicide, which remains illegal in California, involves intentionally taking lethal doses of sedatives or painkillers.
Because so many older adults don't make their end-of-life wishes clear before a medical crisis, families are left to make decisions on their behalf as best they can.
"We have tremendous problems with people not documenting what they want," said Dr. Ken Murray, a writer and retired Southern California family medicine practitioner.
His recent Zócalo Public Square blog post, "How Doctors Die," suggests that health care providers, unlike lay people, tend not to choose CPR and other aggressive end-of-life treatment. They know the limits of modern medicine. And they've seen the suffering that futile end-of-life care can cause to both patients and families.
"Medicine can make the problems worse," he said. "We think of our modern interventions as being risk-free. If only it were so."
Do not resuscitate orders – or DNRs – communicate a patient's wish not to be revived in case of emergency and have been in use for more than three decades. Yet only about 16 percent of California hospital patients 65 and older had DNRs on file in 2010, according to data from the Statewide Office of Health Planning and Development.
Similarly, advance directives are legal forms allowing people to designate a surrogate to make health care decisions on their behalf, if necessary. Only one-third of Americans have any kind of advance directive in place.
In January 2009, California became one of about a dozen states to recognize physician orders for life-sustaining treatment (POLST) forms, which allow people to choose what kind of crisis care they would like: full treatment or pain treatment only or limited intervention using pain medication, antibiotics and fluids; CPR or no attempted CPR; feeding tubes used long term or temporarily or never.
"POLST is designed for people in decline," said Judy Citko, executive director of Coalition for Compassionate Care of California.
State law requires that people admitted to medical centers be asked whether they have advance directives, and California forms for DNRs, POLSTs and advance directives are available online. But in the norm, families still avoid discussing illness and death.
"The medical system does things with consent," said Murray. "If the patient doesn't put in writing what their choice is and who makes the decision for them, then we have a problem. Whoever's got the loudest voice in the crisis wins.
"You'll have someone screaming, 'Are you going to kill Mom?' People actually say those things."
In the absence of instructions to the contrary, adult children often allow medicine to prolong the dying process. And the default for health care providers is to intervene, both because it's what they're trained to do and as a way of lowering legal liability.
"The family doesn't look at it from the standpoint of the patient," said Murray. "They look at it from the standpoint of their loss.
"It's a real irony. The people who most stand to define how you die are the ones getting in the way of it happening the way you want."
The growing medical emphasis on palliative or comfort care provides a potential solution. For people with advanced disease as well as for people at end of life, palliative care is a health care specialty aimed not at cure but at relieving pain, stress and suffering while offering a network of support for the patient and family.
Rather than repeatedly hospitalizing an elderly patient for chronic pneumonia, for example, palliative care provides ways of controlling nausea and shortness of breath at home. Rather than brushing aside a patient's fears of being a burden, palliative care offers anxiety relief, through talking with a chaplain or social worker as well as through medication.
Its goal is quality of life, a strictly consumer-oriented standard. And the key to palliative care is conversation among patient, family and the care team.
"It's a very delicate conversation," said Kathleen Grace, Sutter Health's regional director of palliative care services. "A lot of times, the patient is more ready than the family. It can be difficult for children to listen to the patient's wishes.
"But it does help the family. It's a gift to the people designated to make the decisions, because it takes the burden off of them."
Throughout her old age, Jeanada Nolan remained enormously capable.
She was a Fresno native with a lifelong belief in the power of education to make a difference in the lives of Californians.
It had made a difference, after all, in hers. She was a college graduate – one who eventually received a doctoral degree – and an educator and social work professional at a time when women didn't tend to work outside the home. Eventually, she led the state Department of Education's preschool division before retiring in 1974 after almost 40 years in education and public service.
Her husband died three years later, and a son, Jay, died in 2010.
After Jeanada began losing her eyesight, she enlisted the help of gerontology students, who at her direction wrote out names and phone numbers of her many social circles – book club, dinner club, old neighbors from east Sacramento, people from her assisted living center – in bold black print on big index cards. And she hired a friend to handle her paperwork.
At the end, Jeanada didn't burden her family with making choices for her.
"She taught me through this process," said her son, Tom. "There comes a time you've had a really, really full life, and the quality of life ahead isn't something you want. It won't get better. She was in pain."
She told the family and her doctor that she wanted palliative care and a peaceful end to her long life.
"The nursing home staff unhooked the oxygen and fluids," her son said. "She had chocolate and ice cream. She thanked her doctor in front of all of us. She made it very clear what a wonderful life she'd had."
She drifted to sleep on Dec. 12, soothed by a dosage of morphine. Tom Nolan told his small extended family – including his two grown children and a nephew – to spend as much or as little time with their grandmother as they wanted.
"Her taking her last breath was not the meaningful time in her life," he said. "The meaningful time was earlier, when she could feel your presence."
But longtime friends spent time with her in her last days, and her grandchildren spent hours every day by her side.
And on Dec. 15, she died of pneumonia, quietly and without pain, the way she had chosen.
"This was a good death," said Tom's wife, Susan Nolan.
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