Doctors told her she was going to die, twice.
When she was 10 years old, Sara Myers was diagnosed with Type 1 diabetes and was told she had maybe 20 years to live. New advances helped her beat the odds for decades until —at age 56—she was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, a motor neuron condition that causes patients to eventually lose muscle function. This time, doctors gave her three to five years to live.
“I’ve been dealing with mortality my whole life,” said Myers, now 59. “I’m not scared of dying but this is not a nice way to go.”
She now wants to have control over when and how she dies.
For the past three years, Myers has been exploring the idea of assisted dying, becoming an activist in a dying-with-dignity movement that is quickly growing but still controversial.
Assisted dying is now legal in five states –Oregon, Washington, Montana, Vermont and New Mexico. Aid-in-dying bills are pending in six more –Connecticut, Hawaii, Kansas, Massachusetts, New Jersey and Pennsylvania. All were introduced within the last year.
“It’s fast but to me, it’s not fast enough,” said Myers, who recently testified in favor of a Connecticut assisted-dying bill. “It’s a real uphill battle.”
Supporters of such rights face active opponents. In March, Not Dead Yet, a national disability-rights group, helped defeat a dying-with-dignity bill in New Hampshire.
Baby boomers are fueling the right-to-die movement, says Sean Crowley, media relations manager for Compassion & Choices, a nationwide organization that advocates assisted dying.
“Baby boomers have transformed every experience from what it used to be to something else, and they’re going to change the death experience,” said Crowley. “They want to have a good death.”
Most states legalizing the right-to-die model their statutes on Oregon’s law, which has been in effect the longest at 17 years. (see sidebar)
Right to Die States Look to Oregon
Oregon was the first state to passing a Dying with Dignity law in 1997. According to the latest data, aid-in-dying resulted in .2 percent of the total deaths in Oregon last year. States that passed the right-to-die law after Oregon have similar provisions considering that Oregon’s aid-in-dying law has lasted for 17 years. Here are the patient requirements and the provisions of Oregon’s such law:
The patient has to:
- be 18 years or older
- capable of making and communicating healthcare decisions
- be a resident of that state
- be terminally ill with at least six months to live
- The process to obtain the medication:
- the patient must make two oral requests to their physician separated by at least 15 days
- the physician must fill out a form confirming the diagnosis and prognosis
- the physician must give a full range of all appropriate treatment options and end-of-life care
- the patient must provide a written request and sign it in the presence of two witnesses, one of whom has to have no relation to the patient
- the physician along with a second physician must confirm the patient’s diagnosis and prognosis
- At any point of the process this could happen:
- a physician can affirm the patient is depressed or the patient has a psychiatric or psychological disorder then the patient will be sent to have a psychological evaluation
- a patient can decide to withdraw the requests and a doctor can decide to rescind the requests at any point
Proponents of these laws distance themselves from crowds like FinalExit.org, a splinter group that provides how-to books via the Internet for anyone contemplating suicide. Some methods include a helium hood—a bag that ties at the neck and pumps helium lethally into the bag.
Right-to-die states handle assisted death through medication.
The most common prescription used to hasten death in right-to-die states is pentobarbital, the medication used to euthanize ailing pets. The drug, a liquid, costs about $300 to $400 a dosage. Medicare does not generally cover the cost although some private insurance companies do, said Crowley for Compassion & Choices.
A third to a half of people who fill the prescription never take it, says Crowley.
“They get the prescription filled, and it does become this peace of mind,” said Linda Waite-Simpson, a Vermont legislator who helped pass the states dying-with-dignity law last year.
In every right-to-die state, some doctors choose not to participate.
“Some physicians really believe that their job is to keep people alive at all costs,” said Waite-Simpson. “I think it is hard for those physicians to basically give up.”
Then there are groups who actively oppose the aid-in-dying movement. Not Dead Yet, the group that fought the New Hampshire bill, says that selecting some people for suicide prevention and some for suicide assistance is discrimination based on illness. The group started in 1996 to protest Dr. Jack Kevorkian, the euthanasia activist who helped more than 100 people end their lives from 1990 until 1999.
“We oppose legalized euthanasia or assisted suicide, meaning we oppose the idea of active measures like lethal injections or lethal drugs to cause someone’s death,” said Diane Coleman, president and founder of Not Dead Yet. “If a person goes ahead and commits suicide anyway then that’s not illegal. It’s the assistance that’s the issue.”
Years ago the term assisted suicide was used to describe what supporters now call death with dignity. Language still plays a part in public opinion of the right-to-die movement. In a Gallup survey taken last year, 70 percent of Americans supported allowing doctors to “end the [terminally ill] patient’s life by some painless means” while just 51 percent supported doctors helping a terminally ill patient “commit suicide.”
The language differences carry the connotation of each side with the proponents siding with dying with dignity and the opponents using assisted suicide.
Beyond the lobbying efforts of Compassion & Choices or Not Dead Yet, FinalExit.org lies somewhere in the background and does not campaign to change law and informs people on how to die regardless of if they are terminally ill or mentally competent. Sometimes their advice lends itself to dying in intense ways like the helium hood.
But for Myers, dying a painful death should not be the only option.
“To have the legal right to have the medication that would allow me to go gently not violently,” said Myers.
“I want the right to make the choice.”