Nov. 28, 2010 |(111) Comments
Poll
Dan Crews has been a quadriplegic since he was in a car accident at age 3. For the last year and a half, Crews has battled Froedtert Hospital in Wauwatosa to remove his ventilator.
Should patients with high-level disabilities be given the right to terminate their lives?
Dan Crews wants to die, but he can't.
The 27-year-old Antioch, Ill., resident has been a quadriplegic since he was in a car accident at age 3. Paralyzed from the neck down, he can speak and eat, but his diaphragm muscles cannot move air through his lungs.
A mechanical respirator, a clear box filled with pumps and tubes, connects to his throat and breathes for him.
Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.
"I feel like I'm the only person in the country who does not have a way or an option to kill myself," he said.
For the last year and a half, Crews has battled Froedtert Hospital in Wauwatosa to remove his ventilator. Hospital psychiatrists and mental health professionals say he is depressed and must be treated for it before they will consider such an irrevocable step, according to his medical records. Crews said his desire to die stems not from his depression, but from his poor quality of life and the low odds that it will ever improve.
Crews' desire to die is not uncommon for people with spinal cord injuries, who often struggle to gain control over their own lives. Their suicide rate is two to six times that of the general population, depending on their specific situation. Their inability to end their lives themselves often compounds their sense of helplessness.
Yet stories like Crews' are troubling to disability rights activists. They argue his quality of life doesn't have to be inherently bad; rather, they say, society doesn't provide the resources for Crews and others to live a satisfying life.
On paper, those who wish to refuse life-sustaining treatment have more than 100 years of legal precedent behind them, said Norm Fost, a bioethicist at the University of Wisconsin-Madison. In hospitals around the country, dying patients and their family members quietly - and legally - make the decisions to forgo surgeries, remove feeding tubes and turn off ventilators.
"Courts have nearly universally recognized that right," said Laura Leitch, general counsel to the Wisconsin Hospital Association.
But Crews isn't a cancer patient in hospice care. Other than needing a ventilator to breathe, he is young and has no other life-threatening conditions.
Legally he still has the right to discontinue treatment, Leitch said. But in practice, it can be difficult for non-terminal patients to refuse lifesaving treatment.
Before doctors honor a patient's wishes, they must determine whether the patient is competent, and hospitals have broad leeway in determining competency, Fost said. Even if a patient is deemed competent, there is no law requiring a specific hospital or doctor to withdraw treatment, he said.
"We don't like to see people with disabilities decide not to go on," said Art Caplan, a bioethicist at the University of Pennsylvania. "And people will put up road blocks and try to slow that process in every way they can."
Gradual decline
Crews received a $4 million settlement after the car accident that left him paralyzed 24 years ago. He graduated from high school, earned an associate's degree from the College of Lake County, a local community college, and longed to be a criminal prosecutor.
But once he realized the logistical difficulties of schooling away from home, he let his courtroom dreams slip away, he said.
The money allows him to employ two nurses and live with his mother in his own house. But he spends all day watching television - a few hours in the morning in bed, and a few hours sitting upright in a broken chair. Most days he sees only his nurses and his mom. (Crews' parents are divorced and his father is remarried).
Financial concerns also have arisen.
"The amount of money he received right from the start was designed for a 20-year life span, and already it's been 24 years. I don't think anybody thought he would make it this long," his father, Gerald Crews, acknowledged.
Crews wants to leave what's left of the money to his mother as a legacy.
"At least if I were gone, I know she'd have enough money to take care of herself for the rest of her life," he said.
Before the money runs out, his best bet was to apply for Medicaid and have the program pay for his nursing care. But to qualify, he would have to be broke. The one way to get around this requirement is to put his money in a special needs trust set up for the mentally and physically disabled, said Tom Wilson, an advocate at the Chicago-based Access Living, an independent living advocacy group for people with disabilities. That means a trustee would legally make his financial decisions.
"With my life being so guarded that I can't have much privacy, there's always people watching over me, I wanted one thing I control," Crews said.
And unlike in Wisconsin, Illinois Medicaid often denies requests for the 24-hour care he needs to stay in his home, so he risks being put in a nursing home, Wilson said.
Still, Crews recently put his money in a trust and is applying for Medicaid.
Pursuit of death
The possibility of removing Crews' ventilator was raised in a meeting June 1, 2009, with William Waring, his spinal cord rehab physician at Froedtert. Crews has gone to Froedtert Hospital for medical care since he was taken there by Flight for Life after his accident. Froedtert physicians declined to comment on his case; the rest of his medical history comes from medical records he provided.
Waring referred him to a palliative care team at the hospital. As part of that process, several mental health professionals were required to see Crews to determine whether he was able to make the decision. Initially, palliative care doctor Sean Marks wrote in patient charts an impression that Crews was competent.
After about a month, psychiatrists and psychologists expressed concern that his money troubles and desire to help his mother were clouding his judgment, according to his records. They also wanted to treat him for depression. Crews refused treatment. He said it wouldn't change his decision and he couldn't afford the hassle and expense of visiting Froedtert regularly for treatment, according to records. At that point, talks between Crews and Froedtert stalled.
For the next year, Crews considered moving to states with death-with-dignity laws, but was told he would need to be a resident for six to 12 months before they would consider removing his ventilator, he said.
In June, he initiated a hunger strike - one of the few ways he can choose to die, but one that is agonizingly slow and painful. After four days, his body began to fail, all his nurses quit, and his mother, distraught and unable to care for him, called Froedtert Hospital to get him admitted.
He finally resumed eating because he faced the possibility of having a feeding tube put in if he tried again, according to the medical records. Doctors at Froedtert told Crews he would need to have a year of counseling and treatment for depression before they would consider removing his ventilator; even then, they would not guarantee it, according to the medical records.
His father is torn. As a Catholic, he doesn't agree with Crews' wishes, he said.
"But from a father's point of view, I truly understand," he said. "I just think the life challenges have been mounting on him consistently to where, quite frankly, he's lost the will to live under the conditions he's in."
His mother does not want him to die. But she respects his right to make the decision. "I would rather the decision be his, and if he wants to (die), yes, I'll back him to the hilt; if he wants to stay, I'll back him to the hilt."
What is a life worth living?
In 1989, Larry McAfee, a Georgia engineer paralyzed in an accident, successfully argued before the Georgia Supreme Court for the right to have his ventilator removed. The state had put him in an institution, and McAfee deemed his dependent lifestyle not worth living.
Yet after winning his suit, he befriended a doctor at another institution, who persuaded him to give life another try. He found work, and was able to live independently for several years before dying of natural causes.
Some disability rights activists see the right to die as fundamental to independence. In the May 1991 Western Journal of Medicine, Andrew Batavia, a disability rights advocate who was instrumental in passing the landmark Americans with Disabilities Act, wrote that "people who believe they have no control over the fundamental decision to live cannot claim to have autonomy over their lives."
But many disability rights activists disagree. They say that right-to-die arguments are just veiled discrimination and are predicated on the assumption that disabled lives are not worth living.
"People who help people to die, like (Jack) Kevorkian, are heroes in some people's minds. He's a serial killer in my mind," said Wilson, of Access Living.
In one study, about 68% of people who experience a spinal cord injury are either very or somewhat satisfied with their lives. To independent living advocates, the underlying problem is the lack of autonomy and dignity afforded to patients with high-level disabilities.
"The reality is they shouldn't have to live that way, and we should provide the services that make people's lives bearable," Wilson said.
Those arguments are academic for Crews, whose discussions with Froedtert have stalled, and who is waiting to hear about his Medicaid. He rarely leaves the house because his motorized wheelchair is broken. He agreed to take anti-depressants a few months ago, but said they have not changed his outlook or wishes.
His mother said his discontent is plain to see.
"I can put myself into his shoes every day, and he's just not happy anymore," she said.
