Jennifer Glass isn’t on her deathbed, but when it’s her time, she wants to go as she sees fit.
She married for the first time at age 49. Three months later, her husband felt something odd while giving her a massage and Glass immediately expected the worst.
“Within 10 seconds of feeling that lump on my neck I saw the spectrum of possibilities,” Glass told Healthline. “I was not surprised.”
In January 2013, Glass was diagnosed with stage IIIB adenocarcinoma non-small cell lung cancer, an illness that gives a person a 5 percent chance of living five years or more.
Last month, Glass began a harshly aggressive chemotherapy after her drug regimen failed to keep the cancer at bay. It’s recently spread to her abdomen, brain, cervix, and pelvis.
While she’s not yet terminal, Glass wants to die when she chooses. She says she wants to be done with the cancer before the cancer is done with her.
“For the most part, it’s out of my control. Having a say in it really mitigates the fear. And the fear is the most debilitating part of it,” Glass said. “The quality of my life would be improved if I could fear less. I would find great comfort in knowing I had options.”
The End of Life Option Act in California
Since her diagnosis two years ago, Glass has become an advocate for the rights of the terminally ill who wish to end their lives before their conditions render them helpless.
The issue came to the forefront last year when 29-year-old Brittany Maynard of California announced she had terminal brain cancer and was planning to move to Oregon, which passed a Death with Dignity law in 1997.
On Nov. 1, 2014, Maynard took a fatal dose of medication legally prescribed by a doctor and ended her life surrounded by her family.
“Making aid in dying a crime creates undue hardships and suffering for many people who are terminally ill and suffering tremendously,” Maynard said in a video released after her death. “It limits our options and deprives us of our ability to control how much pain and agony we endure before we pass.”
Maynard’s posthumous testimony to the California Senate was in hopes that her home state would join four others — Washington, Vermont, Oregon, and New Mexico — in adopting laws that allow doctors to prescribe medication to bring about death in terminally ill patients.
The bill — S.B. 128 or the End of Life Option Act — has cleared the state Senate, but this week it was shelved before reaching the Assembly Health Committee for lack of support.
“We continue to work with Assembly members to ensure they are comfortable with the bill,” Democratic Senate members in favor of the bill said in a joint statement. “For dying Californians like Jennifer Glass, who was scheduled to testify today, this issue is urgent. We remain committed to passing the End of Life Option Act for all Californians who want and need the option of medical aid in dying.”
When her time comes, Glass wants to die in the comforts of her own home so she can enjoy the last moments of her life with her family.
“We spend so much time improving our quality of life,” Glass said, “and quality of life has to include the end of life.”
An On-Going Battle in the States
The right to die as one chooses has been a legal, moral, and ethical debate for decades, and it changes with the increase in the availability of life-sustaining medical technologies.
Overall, the nation is split in their opinion on physician-assisted dying. Polls over the past ten years show less than half of Americans support laws allowing the practice, while the U.S. Supreme Court has left the issue to individual states.
According to the Death with Dignity National Center (DDNC), bills legalizing physician-assisted death have been introduced in 14 states this year, with lawmakers in eight others intending to propose legislation.>
George Eighmey, J.D., vice president of the DDNC, says the California law has the same safeguards in place as the one he authored in Oregon. These include a series of physician assessments that conclude the patient has less than six months to live, the patient is considered mentally competent, and the patient makes a total of three requests.
According to the Oregon Public Health Division, 1,327 patients have received medication in that state and 859 have used it in the past 17 years. Many who didn’t take the drugs waited too long and were not able to swallow the medication while others chose simply not to use it.
“There are others that feel comforted to have it. It’s a safety net and it empowers them,” Eighmey said. “If no one ever uses the law, it gives peace of mind to the few people who need it.”
Eighmey has been at the bedsides of more than four dozen people who ended their lives under Oregon law.
“There’s a look of relief on their faces when they take the medication,” he said. “All of the pain drains away from their faces and it becomes smooth.”
Opposition Rooted in Moral Traditions
Religious groups are the largest and loudest opponents to death with dignity laws.
In California, members of the California Catholic Conference said they were “proud” of the coalition that stood against the bill.
Monsignor Ignacio Carrasco de Paula, a top Vatican ethics official, called Maynard’s case “an absurdity.”
“Suicide is not a good thing. It is a bad thing because it is saying no to life and to everything it means with respect to our mission in the world and towards those around us,” he told an Italian news agency.
According to the Catholic faith, suicide is a mortal sin and life should only end by natural death. The U.S. Conference of Catholic Bishops warn of a “slippery slope” that aid in dying will end the lives of people with chronic illnesses or disabilities and could involve coercion.
Not Dead Yet, a disabilities rights group, notes that Oregon doctors report disability issues — such as loss of autonomy and dignity, and being less able to engage in activities — as the top reasons why patients want life-ending medication.
“In a society that prizes physical ability and stigmatizes impairments, it’s no surprise that previously able-bodied people may tend to equate disability with loss of dignity,” the group says on its website. “This reflects the prevalent but insulting societal judgment that people who deal with incontinence and other losses in bodily function are lacking dignity. People with disabilities are concerned that these psycho-social disability-related factors have become widely accepted as sufficient justification for assisted suicide.”
Other opposition comes from inside the medical community.
Doctors Split on Their Role
Every doctor takes the Hippocratic oath, which says “do no harm.”
What that translates to when helping dying patients is the core of the issue in the medical community.
The American Medical Association (AMA) — which now only represents about 15 percent of all practicing U.S. doctors — has opposed physician-assisted dying for decades, saying allowing doctors to participate in the process would cause more harm than good.
“Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks,” its code of ethics state.
A 2013 poll by the New England Journal of Medicine found that 67 percent of U.S. doctors oppose physician-assisted suicide. Violating the Hippocratic oath and fear of a slippery slope to euthanasia were the most common concerns of those opposed.
Those against doctor-assisted dying say greater emphasis should be put on palliative and hospice care to aid a patient.
But doctors can use other means to bring about death, whether by act or omission. Patients can withdraw or refuse treatments, such as breathing machines and feeding tubes. California was the first state to pass a Natural Death Act, which gave doctors immunity for withdrawing treatment to follow a patient’s directives in a living will.
There’s also palliative sedation, where a doctor can administer increased doses of morphine to end pain and put the patient into a coma. The AMA approves of this practice as it’s meant to relieve pain.
“This is done all of the time within the protections of the physician-patient relationship,” said Stephen G. Post, Ph.D., director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University School of Medicine.
Post, who calls himself an “open-minded advocate,” would like to see right-to-die laws extend to people with conditions like Alzheimer’s.
“In the U.S., the laws are so cancer based, it’s biased against folks with long-term neurodegenerative diseases,” he said.
But Alzheimer’s patients face a double-edged sword. At the point of diagnosis, they’re not terminal, but at the point where the disease becomes fatal, the patient isn’t lucid enough to consent.
“People with those conditions cannot use the law,” Eighmey said. “It’s sad, but we’re not going to expand the law to contain it.”
Managing Expectations of Mortality
Death is inevitable, yet it’s still a taboo subject to discuss with loved ones.
Dr. Akram Alashari, a trauma surgeon in the intensive care unit at the University of Florida, said advancing medical technology can only stave off death.
“We can keep anything with a heartbeat alive,” Alashari said. “The problem I see regularly is the shifts toward lengths of life, not quality of life.”
When a patient needs emergency care and is unable to speak, whether from illness or accident, it’s up to the next of kin to make those decisions. Too often, Alashari said, family members will prolong care with unrealistic expectations, especially for the elderly.
“People need to realize we’re all mortals and finite. We don’t want to admit it, so we keep pushing it off, pushing it off,” he said. “People don’t like to talk about their mortality. It’s a tough decision and no one wants to talk about it.”
Having a conversation about end-of-life wishes and medical care can help mitigate any gray areas. Filing advanced care directives can also help prevent the patient from undergoing undue pain.
Renee McGovern, Ph.D., a psychologist at the Arizona School of Professional Psychology at Argosy University, said the elderly and the terminally ill can benefit greatly from knowing their final wishes. And seeing those followed through offers control and autonomy in a time that’s scary enough on its own.
“Part of this is really how long you want to live and what you want to live for,” she said. “Your life is a story and deserves a good ending. Knowing you’re going to die is part of living a good life.”