Today has been a bad day, and a nurse's aide isn't helping matters as she loudly orders Laurie to "sit up" in her wheelchair. Laurie is a quadriplegic; she can't sit up by herself. But she's not deaf and she's not stupid. As the aide tries to reposition Laurie, she tells Laurie's friend, Julie Grimstad, that maybe Laurie is just upset about her move; her room is being changed because Laurie's north Texas nursing home is remodeling. Laurie's eyes flash side to side, her way of saying to anyone willing to pay attention-"No, no, it's not the move."
Mrs. Grimstad intervenes, offering soothing words to the 31-year-old and gently easing Laurie's arms into their arm rests. When that's done, she flips the chair's toggle switch that lets Laurie guide her small universe forward with slight head movements.
Laurie's troubles are nothing so slight as a room change. The most immediate problem is that she's a little bit battered; attendants didn't use a padded shower chair when they bathed her today, and the hard metal-and-plastic chair hurt her weakened, 80-pound body. Since she can't speak, she can't really protest.
The larger problem is that there are two bullets still lodged in Laurie's brain. Details about the shooting are vague, but it was most likely drug-related. It happened last May, and it left Laurie unable to move, to talk, to swallow food.
Laurie eases up to a green, wrought-iron table in her nursing home's carpeted alcove. She very nearly nods a greeting to her new visitor; with each question asked, she turns to Mrs. Grimstad and begins the slow chore of spelling her responses. The alphabet is divided into six lines on a chart Laurie has with her; but she and Mrs. Grimstad don't need it anymore.
"Top part?" Mrs. Grimstad asks.
Laurie flicks her eyes quickly; this means "no."
Bottom part of the chart, then, Mrs. Grimstad deduces, adding: "First line?"
Laurie's eyes flash upward; this means "yes."
"S?" Flash! The first letter of the first word in the sentence is "S."
"Sometimes," she and Mrs. Grimstad then slowly spell out, "I think they made a mistake saving me."
Then does she want to die? Slowly, deliberately, Laurie spells out her reply:
According to a recent federal court ruling that struck down Washington State's assisted-suicide ban, Laurie has a right to die. The 9th Circuit Court of Appeals declared two weeks ago that the Constitution guarantees a person's right to have a say in "the time and manner of one's own death." The ruling goes far beyond affirming that people can decline treatment for themselves (that's what so-called living wills do); the ruling, if allowed to stand by the Supreme Court, would let doctors prescribe lethal doses of medication for patients who ask. It adds that those who help-doctors, family members-should not be prosecuted.
Though for now it applies only to the nine Western states within the 9th Circuit, experts say it may only be a matter of time until the Supreme Court is asked to rule on the Washington State case, or a similar case before an appeals court in New York. If the decision should stand, it could prove to be for the old and infirm what Roe v. Wade has been for the unborn: disaster.
Most of the issues raised by the new court ruling can be found in Laurie's story:
When is life not worth living?
What should be done when the physical or emotional pain of an illness becomes unbearable?
And does the 9th Circuit ruling place caregivers of the elderly and the ill on a slippery slope?
"Most people look at Laurie and say they wouldn't want to live that way," says Mrs. Grimstad, a Roman Catholic. Mrs. Grimstad's Center for the Rights of the Terminally Ill fights its battles with nursing homes, caretakers, and healthcare providers from her suburban home. Her mission is a personal one; her brother survived a diving injury as a quadriplegic. She says that when many people talk rashly about the "right to die," they often don't fully understand that handicaps can be overcome and even the end of life can be full of hope. "Maybe they don't realize that they're really saying they'd rather be dead than disabled, because I don't think they really mean that."
Often suicide seems a bitter cure for the fears many disabled and infirm people feel, notes Dr. David Stevens, executive director of the Christian Medical and Dental Society. "There's depression ... and nearly every patient at that point thinks about suicide. And also, they fear that they'll be a financial burden to their family."
In Laurie's case, she hasn't seen one of her sons in weeks. Mrs. Grimstad hopes she's located someone who will bring him more regularly. Thinking about her sons makes her want to live, Laurie says with her eyes, as do thoughts of her husband. He lives nearby and visits often. On occasion he even takes her to a nearby mall, when she's able. But then Laurie's pain and depression become visible again as she reveals that they're getting a divorce (it would be her fourth) because of financial pressure. Mrs. Grimstad explains that, as an unemployed single, Laurie can more easily get Medicaid.
"What she needs is money for rehabilitation-that's what's going to change things for her," Mrs. Grimstad says later, concerning Laurie's current bleak outlook on life, and her willingness to consider assisted suicide. "But that money just isn't there."
The Washington State 9th Circuit ruling has something to say about the matter of weighing money concerns with concerns about extending life, and it is frightening: "We are reluctant to say that in a society in which the costs of protracted health care can be so exorbitant, it is improper for competent, terminally ill adults to take the economic welfare of their families and loved ones into consideration."
Given her financial bind, given her impending divorce, given the fact that she cannot move or speak, Laurie thinks she may want to die. But Texas attorney Roger Norman is fighting for Laurie's life. He's fighting a court-appointed attorney ad litem (an advocate for her wishes), attempting to get Laurie's mother-in-law named as her legal guardian.
It unsettled Mr. Norman when he learned that current law would let Laurie instruct her caregivers to stop feeding her, and they would have to comply. That's what a rehab hospital was ready to do when Mr. Norman was brought into the case by Laurie's mother (her mother felt that because she and Laurie do not get along well, her mother-in-law might serve more effectively as a guardian).
"I have the minutes here of the [rehab] hospital's ethics committee, and when all is said and done they sort of pat themselves on the back for making tough decisions, making tough calls," says Mr. Norman. "They had a doctor, a psychiatrist, who said [Laurie] was no longer depressed, and that if she wanted to commit suicide now, let her."
Mr. Norman, Mrs. Grimstad, and Laurie's mother succeeded in getting Laurie moved to her present nursing home until the guardianship hearing, slated for August. Meanwhile, another psychiatrist has diagnosed Laurie as having severe depression and post-traumatic stress disorder, stemming from the shooting and her troubled home life. Curiously, the depression diagnosis is keeping Laurie alive right now.
Mrs. Grimstad leaves contending for better end-of-life laws to larger lobbying groups; Mrs. Grimstad concentrates on bedside visits with terminally and chronically ill patients. "We try to work with patients to improve their quality of life," she explains as her GM conversion van glides down a north Texas highway to one of her twice-weekly visits with Laurie. "When you improve the quality of people's lives, that makes them want to live."
Mrs. Grimstad has watched disabled, and even terminally ill, people blossom-given a few minor life adjustments. One day they may feel like ending it all. But the next week, a newly gained mobility, or heightened sense of self-determination, or newfound regular visitor, can replace suicidal thoughts with a brighter outlook on life.
In Laurie's case, learning how to eat solid foods again could make the difference. "She loved to cook and eat," Mrs. Grimstad explains. "She doesn't like tube-feeding; no one would. But to eat again, she'll need therapists to teach her how to swallow again, and even then, she'll choke some. That's just what quads do-they have trouble with food."
When Mrs. Grimstad began visiting Laurie last October, she smuggled in some beef stew she'd run through a blender. A former nurse, she carefully placed portions of a teaspoon of the concoction on Laurie's tongue. Laurie was delighted-but her hospital caregivers were furious.
Mrs. Grimstad smiles as she recounts the story.
That's the kind of response Christians should be prepared to give, says Dr. Robert Orr, a Loma Linda, Calif., physician and Christian ethicist who works with terminally ill people. "When someone tells us they want our help to end their life, they're doing more than making a request," he says. "...They have physical needs, such as pain management; they have emotional needs, like the need to deal with grief and depression and anxiety; they have spiritual needs, maybe some unfinished business or guilt. That's what they need help with."
Hospice care-being focused on pain control and comfort for the dying-is a clear Christian alternative to aiding death. Says Dr. Orr: "[Hospice] affirms ... that life itself is inherently dignified and sacred. It also recognizes that people die. It's a part of medicine that I consider to be part of ministry."
What hospice care does is refocus the patient: home care, not hospital care; comfort not cure. Family Hospice of Dallas, for example, works to get patients out of the hospital and back into their homes. The patient usually sees the hospice doctor only once, for the initial evaluation. After that, a nurse drops by several times per week, or as often as the family requests. She works toward pain management, often looking to pharmacists and even family members for suggestions. If needed, nurse's aides come by to help with bathing and feeding. There are ministers, social workers, and volunteers who attend not only to the patient, but also the family.
Because it's cheaper by far than hospital care for the dying-usually $80 per day or less, compared to upwards of $1,000 per day in a hospital-insurance firms are happy to sign on.
"The slippery slope fears of Roe's opponents have, of course, not materialized," the 9th Circuit Court's ruling dubiously asserts, failing to recognize that its own ruling is the best evidence yet of such a slippery slope. "The legalization of abortion has not undermined our commitment to life generally; nor, as some predicted, has it led to widespread infanticide. Similarly, there is no reason to believe that legalizing assisted suicide will lead to the horrific consequences its opponents suggest."
But it already has-in the Netherlands.
Retired Dutch physician Richard Fenigsen wrote in the journal Issues in Law and Medicine last year that, in his home country, "the lives of many people are deliberately put to an end ... sometimes without his or her request, consent, or knowledge."
About 23 years ago Dutch prosecutors cut a deal with doctors: Follow a few simple rules, and you can assist your patients to commit suicide. The rules were virtually identical to the 9th Circuit Court of Appeals' new edict: The patient must be terminally ill, have made repeated requests for assistance in suicide, and the suffering must be unbearable.
But in practice, more than half of the time, Dutch doctors kill patients without the patients' knowledge or consent; they justify this by saying it is what they think is best. And it's not just the old and sick who die. Newborn babies with disabilities are being killed, as are children who are gravely ill, Dr. Fenigsen reports.
One baby with Down Syndrome was born with a blockage of the digestive tract. Instead of fixing the defect with simple surgery, the hospital and parents chose to do nothing, and let the child die.
A boy born in 1990 with spina bifida and hydrocephalus fell ill for a few days, and his parents and physician decided euthanasia would be best for this 3-month-old. One of his nurses opposed the decision, and with her husband went to the parents and offered to adopt the infant, but the boy was killed by lethal injection anyway.
There are other disturbing cases. A 27-year-old ballet dancer who developed arthritis in her toes asked for, and received, help in committing suicide because she said her life was no longer worth living if she couldn't be a dancer.
Elderly Dutch citizens now are afraid for their lives in a land where such sentiments are rising, he notes. "As early as 1984 to 1987 there were scattered reports that some older people, afraid of involuntary euthanasia, refused to be admitted to nursing or senior citizens' homes, avoided visiting doctors' offices, and, when admitted to a hospital, refused to take medicines and even orange juice."
"Euthanasia is not just changing medicine," Dr. Fenigsen concludes. "It's replacing medicine."
No one involved with Laurie is saying she doesn't have cause to think about ending her life. But that doesn't mean there isn't hope.
There is a gleam in Laurie's eye when her friend Julie digs a new bottle of nail polish from the depths of her purse. It's a fairly common shade of pink, but it has an exotic name- something like "Dusty Rose."
"Is this the right color?" she asks Laurie.
Laurie almost nods-her pleasure visible now, shown just barely at the corners of her mouth, and in her eyes as they slightly smile.
Later, after she leaves her friend, Mrs. Grimstad talks of how some people argue that such disabilities can be dehumanizing.
"That's not true," she insists. "People like Laurie, people who can't take care of themselves-they humanize us.... People like Laurie wake us up, and remind us of what's important."