Cathy Ludlum says she has a great life, but since childhood she's been aware not everyone thinks so.
She remembers being 5, sitting in her wheelchair as people in the supermarket looked at her and shook their heads. She wondered how she could tell them she was not to be pitied.
Years later, in the hospital, Ludlum overheard the staff talking about her, assuming she led a tragic life in an institution, even though the medical chart said otherwise she lived on her own and ran a consulting business despite a neuromuscular disease that took away her ability to move.
"People like me are at enormous risk when we're in the hospital or otherwise disempowered," Ludlum said.
Ludlum, 47, of Manchester, believes misconceptions about people with severe disabilities can lead medical workers to give them less aggressive lifesaving options. Doctors might think they would not want to live if they were in the patient's condition and assume the patient feels the same, she said. Or medical workers might see a disability as a fatal condition, even if it is not.
That makes her wary of an effort in Connecticut to let terminally ill patients end their lives through medication prescribed by doctors.
Two Fairfield County doctors, backed by a national group, have asked a Superior Court judge to declare that state law does not prohibit doctors from prescribing lethal doses of medication to mentally competent, terminally ill patients who request it. They say doing so is not assisted suicide because the patient is already dying, making the question not if he or she will die, but when.
Ludlum and other advocates for people with disabilities are seeking to intervene in the case.
The concept giving people in pain control over their dying processes may sound sympathetic, Ludlum said. But she and other advocates fear the reality will be more complex, and could leave people who have severe disabilities vulnerable. They worry about the law being misapplied for example, if a person with a disability asks for help dying but is not terminally ill and about the ideas such a policy would foster about the worthiness of a life lived with diminished capacity.
Supporters of the doctors' position say that the case is not about disability, that there is a clear distinction between terminal illness and disability.
Jamie Mills, a Hartford attorney who represents the doctors, said she understands the fears disability advocates have and the problems they face in getting equal medical treatment.
"It's its own really serious issue, but different than this issue," she said.
The doctors behind the lawsuit, Gary Blick and Ronald Levine, have been asked by dying patients for help ending their lives.
Court documents tell their stories. One patient, T.F., once worked as a bank president and ran marathons. He developed amyotrophic lateral sclerosis, or ALS, which left him struggling to breathe, swallow and move his extremities, and he worried about the suffering he would face while dying.
Another patient, J.P., worked as a Broadway costume designer before AIDS and a host of its complications forced him to give up his career. He was in such severe pain he "could not tolerate the feel of bed sheets on his feet," Blick said in an affidavit.
Ludlum said she has compassion for such patients. But she and other advocates for people with disabilities have a different perspective. And they cite different patients.
In an affidavit, Nancy Alisberg, managing attorney for the state Office of Protection and Advocacy for Persons with Disabilities, described three people she has represented who she said nearly died because of assumptions made about their disabilities.
One was a woman with a profound intellectual disability who had aspiration pneumonia and needed a feeding tube. But the woman's doctor did not recommend putting in the tube, worried that the woman might not accommodate it easily. The doctor's recommendation would have led the woman to starve to death, Alisberg wrote.
Another patient was a 15-year-old with a profound intellectual disability and a treatable form of leukemia. His doctors recommended against treatment, believing that the radiation treatment could hurt his cognitive functions and that he would not understand why he suffered the side effects of chemotherapy, she wrote.
More recently, Alisberg represented a woman who suffered a brain injury after a heart transplant. The woman's caretakers believed she had received her maximum level of rehabilitation, and although the woman expressed a desire to live, her parents decided she would not want to live with the level of disability she had. The woman's parents ordered that she receive only "comfort care," ending the use of anti-rejection treatment necessary from her transplant, Alisberg wrote.
Alisberg intervened on all the patients' behalf, and the patients received care. The first woman now lives in a group home and has a feeding tube. The boy's leukemia is in remission. And the woman with the heart transplant is thriving, Alisberg wrote, "acquiring new skills and in a loving relationship."
A Double Standard?
Claude Holcomb believes that if he were not a fighter, he would not be alive. The 49-year-old Hartford man has cerebral palsy and cannot speak, but gets around in a power wheelchair and communicates by pointing to letters on a board with the alphabet on it. He lived in an institution from age 7 to 22, and he believes that if he were not determined to live in the community, he might have been killed by doctors withholding treatment because of the nature of his disability.
Holcomb worries about people with severe disabilities who are unable to live outside long-term care facilities and consider stopping their life support. If doctors can help patients end their lives, he fears doctors would oblige a request even if the patient is not terminally ill rather than try to get the person the resources necessary to improve his or her situation. Some people with significant disabilities do not want to be a burden on society and could be particularly vulnerable, he said.
"We should not have a law telling or making someone choose to end their life because they might think it is easier than trying to get what they need to live a life with dignity and pride," he said.
Ludlum has a similar concern: If a patient expresses a wish to end his or her life, what would determine whether that person receives suicide-prevention measures or lethal drugs?
Although the lawsuit is intended for terminally ill patients, Ludlum believes it would be impossible to make a clear distinction between disability and terminal illness. She has friends who were infants when doctors told their parents they would not make it through the night. They survived and are now adults evidence, she believes, that predictions of how soon someone will die, or whether a condition is fatal, are forecasts, not fact.
"It's a lot blurrier than people realize," she said.
Disabled Or Terminal?
Blick, one of the two doctors behind the lawsuit, said he empathizes with the concerns Holcomb, Ludlum and others have raised. Many of Blick's patients are disabled, and he agrees that they are at risk of being marginalized when doctors treat them based on opinions or judgments about their disabilities, rather than objective evidence.
But he sees a distinction between what he is seeking in the lawsuit and what the advocates fear could happen.
"This case is about the terminally ill cancer patient that has gone through all the chemotherapy, there's really no other therapies left for them, they're now in really agonizing pain and there's really nothing else for them to do except just wait it out and suffer from their pain," he said.
Kathryn Tucker, legal director for the national end-of-life care advocacy group Compassion & Choices, which is backing the doctors, said states typically define terminal illness in law. In Connecticut, statute describes a terminal condition as "the final stage of an incurable or irreversible medical condition which, without the administration of a life support system, will result in death within a relatively short time, in the opinion of the attending physician."
Blick offered another description of the difference.
"You can cope with and adapt to your disabilities," he said. "You can't adapt to a terminal illness when you've reached the end of the line and there's no other hope for you."
Who Dies, And Why
Tucker points to Oregon, where state law has allowed physicians to prescribe lethal medication to dying patients since 1998, to show that such a law does not disproportionately affect people with disabilities. Of the 460 people who died from the lethal medication between 1998 and 2009, 373 81 percent had cancer. Thirty-five had ALS. Other conditions included chronic lower respiratory diseases and HIV or AIDS.
But advocates for people with disabilities see something else in the Oregon data.
Reports released annually by the state list the end-of-life concerns patients had. Ninety percent cited "losing autonomy" as a concern and 57 percent cited "losing control of bodily functions."
James McGaughey, executive director of the Connecticut office of protection and advocacy, say that might legitimizing disability as a reason for physicians to help a person end his or her life.
"What does that say about people who live with those disabilities all the time and how worthwhile their lives are?" he said. "Does this then ultimately lead to some greater cultural acceptance ... that says will people who have significant disabilities see their lives as not worth living?"
Control and Mortality
Compared to the general population of Oregon, those who died under that state's law were disproportionately white and more highly educated.
Public opinion polls have shown a similar dynamic: When asked if they support allowing a doctor to help a patient with an incurable illness commit suicide, people's answers vary considerably by race and education level. In Gallup polls conducted from 2003 to 2006, 60 percent of whites supported the idea. Among blacks, only 38 percent did. People who attended college embraced the concept at higher rates than those with less education.
Both Tucker and Ludlum say the differences in who seeks to die under the law reflect a key issue: control.
"If you look at all of the data, including the reasons why patients express that they want to have that choice, it really is about autonomy," Tucker said.
People who are used to having control over how their lives are lived often, those who are highly educated and affluent tend to be the people who want the same kind of control when it comes to death, she said.
Ludlum offered a similar explanation.
"People in that demographic group are used to saying 'no, I run my life, I get to decide what happens to me and I get to decide when I die,'" she said.
By contrast, people who have been marginalized or stigmatized, who feel their wishes have never been respected, often do not expect their wishes to be respected in health care and are not likely to seek a physician's help to end their lives, Tucker said.
Ludlum sees it another way.
"People who've had challenges all their lives anyway may be a little better equipped to deal with issues of disability, of illness, issues of mortality," she said.