Defining Dignity: Debate gets real over ‘right to die’ bill
The terminally ill and disabled disagree on aid-in-dying legislation
The dictionary gives two definitions for the word “dignity.” One is “A way of appearing or behaving that suggests seriousness and self-control,” and the other is “The quality of being worthy of honor or respect.”
As Colorado lawmakers on the House Health and Human Services Committee considered hours of emotional testimony on the “Death with Dignity Act” today, they found themselves wrestling in the gray area between those two definitions.
With heart-wrenching gravity, proponents — the doctor with combination Parkinson’s and Leukemia, the legislative council retiree bowed by ALS, the pastor who has sat bedside more than a thousand souls while they departed this life — came forward and asked for the dignity of a final, definitive act of self-control. With equal passion and fortitude, opponents — the lawyer with muscular dystrophy and four children with disabilities, the activist with her own disabilities who has been arrested on more than 100 counts of civil disobedience — spoke out and asked lawmakers to reject a law they said suggests “we are better off dead than disabled.”
In its most basic terms, HB 1135 would allow a physician to prescribe a Colorado resident lethal medication under closely defined circumstances. The patient must have two doctors confirm that his or her illness is in fact terminal and that it will result in death in no more than six months. Both physicians must also confirm that the patient is of sound mind and not under coercion. The patient must request the life-ending prescription both verbally and in writing, with a mandated waiting period of 15 days between requests. At least one of the two witnesses to the written request must be completely unaffiliated with the patient. Finally, the patient must be physically able to administer the medication themselves. No one can assist.
If these requirements are met and the physician and patient voluntarily opt in, the bill would protect the doctor from a lawsuit following the patient’s death. It would also protect the patient’s assets, such as life insurance, which might otherwise be nullified by a death legally defined as suicide.
The meaning of that word, “suicide,” was, like the word “dignity,” also hotly debated at today’s hearing.
Opponents such as disability rights activist Anita Cameron refused to call the measure “Death with Dignity,” arguing that it’s vitally important to be “clear, upfront and honest about what this actually is: physician-assisted suicide.”
“I am not against people who want to commit suicide,” Cameron told lawmakers. “I am against a system that says that, if you are non-disabled and feel suicidal, you will get help to live, whether you want it or not, while, if you are disabled or sick and want to die, you will be seen as brave and helped to die. This assisted suicide bill is discriminatory because certain people with certain disabilities and illnesses would get suicide prevention treatment while others would be encouraged or even coerced to kill themselves.”
John David, a Denver resident with terminal, stage-four kidney cancer, disagreed.
“Suicide is really defined as someone intentionally causing their own death,” said David, who appeared spry though pale. “I don’t want to cause my own death. I’m not doing that, the cancer’s doing that.”
David told lawmakers that he doesn’t want their sympathy. He wants their support for the Death with Dignity Act.
“This legislation would give people like myself the individual liberty to decide how we should end our life when we’re faced with suffering that’s become intolerable due to a terminal illness,” he said.
Other witnesses in favor of the bill echoed those sentiments.
Dr. David Hibbard, who has worked for 15 years in hospice and now suffers from Parkinson’s complicated by leukemia, described in tortured detail decline he has witnessed among his patients. That level of pain now looms for him. Hands shaking from Parkinson’s, Hibbard told the committee how his muscles will betray him until he cannot walk and can barely swallow, and how he will become incontinent and unable to feed himself.
“I don’t want to be a burden and I certainly don’t want my family, my wife and children to have to have to endure watching my decline.”
Another proponent, Dan Chapman, who worked at the state Capitol for thirty years and spoke through his wife due to speech impaired by Lou Gehrig’s Disease, also described the suffering that’s inevitable in his final days, including the use of a respirator — “an expensive and constricting means of extending life.”
Disability rights lawyer Carrie Ann Lucas, who has muscular dystrophy, spoke from that exact experience, but in strong opposition to the bill.
“Without my ventilator, I don’t have years to live, I don’t have six months, six weeks or six days. I would only have hours to live,” she said. “I have a terminal condition very much like ALS (Lou Gehrig’s Disease) and I am a person who would be covered by this bill.”
Lucas said that her major concern with the measure is in how it would impact a system already biased against people with disabilities. Though Lucas herself may have the strength to withstand her medical challenges — and raise four disabled children in the meantime — she expressed deep concern that the bill would tacitly condone suicide for those with disabilities.
“This bill dignifies suicide because it redefines it,” said Dr. Tom Newman, who also testified in opposition to the bill.
These trenchant questions of definition — What is suicide? What is autonomy? What is suffering? What is the role of a doctor? What is the role of government? What is dignity? — weighed heavily throughout hours of testimony, crossing lines of party affiliation, religious belief and occupational expertise.
“Philology, the study of words, is fascinating,” said Dr. Charles Hamlen who, on behalf of the Denver Medical Society, testified in support of the bill. “We ask, ‘Should you allow people kill themselves?’ I’d like to say this bill allows people to orchestrate death on their own terms without fear of intervention… this legislation is far more about choice than it is about death.”
Julie Selsberg helped her father Charles compose The Denver Post op-ed “Please, I want to die,” that inspired his state representative, Lois Court, D-Denver, to sponsor the “Death with Dignity Act.” Selsberg testified in support of the bill this morning, telling lawmakers that a no-vote was a vote for suffering and asking them to let the testimony “weigh down their bodies.”
As the sun set over the Capitol and testimony on the bill entered its eighth hour, every one of the 13 members of the Health and Human Services Committee looked weighed down. Selsberg was thinking of leaving. She said she could feel the tide turning against the measure and she couldn’t bare to watch if the bill should die.
Image by Tai Chang Hsien
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