The death of Brittany Maynard has generated renewed interest in “Death With Dignity” laws.
She was just 29 years old. She should have had a full life ahead of her. But on November 1, 2014, Brittany Maynard died. Ms. Maynard (no relation) had stage 4 glioblastoma, a malignant brain cancer tumor. What is glioblastoma?
From The American Brain Tumor Association:
Glioblastomas (GBM) are tumors that arise from astrocytes—the star-shaped cells that make up the “glue-like,” or supportive tissue of the brain. These tumors are usually highly malignant (cancerous) because the cells reproduce quickly and they are supported by a large network of blood vessels….
Glioblastomas are usually highly malignant—a large number of tumor cells are reproducing at any given time, and they are nourished by an ample blood supply. Dead cells may also be seen, especially toward the center of the tumor. Because these tumors come from normal brain cells, it is easy for them to invade and live within normal brain tissue. However, glioblastoma rarely spreads elsewhere in the body.
It was only a matter of time for Brittany Maynard before the cancer killed her. It must have been a difficult choice because she was a newlywed a few months before she started having dehabilitating headaches, which surgery did not help.
There is not a cell in my body that is suicidal or that wants to die,” she tells PEOPLE in an exclusive interview. “I want to live. I wish there was a cure for my disease but there’s not…. My glioblastoma is going to kill me, and that’s out of my control,” she says. “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die. Being able to choose to go with dignity is less terrifying.”
I saw members of my family die long, painful deaths. My uncle, Edward Maynard, was a strapping figure, approximately 6′ 2″ and 170 lbs. A few years after retiring from his drafting job at General Electric, he developed intestinal cancer. I was 12 years old at the time, so he died approximately 50 years ago, when cancer treatments were as toxic as the illness itself. My father and I visited my uncle in the hospital. From the radiation treatments, his skin had turned dark brown. He weighed 65 lbs when he died. He struggled to talk with my father and me and could only do so for a few minutes before he collapsed. My uncle Eddie died 2 weeks later.
My mother did not have cancer, which was fortunate because she smoked three packs of cigarettes 20+ years before she quit. After quitting smoking, she gained a lot of weight, which she never was able to lose. The extra weight led to her having type 2 diabetes. The type 2 diabetes ultimately caused her to have multiple strokes. At the end of her life, she was no longer human. She lied in the hospital bed wild-eyed and writhing in pain, reduced to little more than basic animalistic functioning.
There was no good purpose served by continuing my uncle’s and my mother’s life when they were in such terrible pain and had no chance to live. They did not have Brittany Maynard’s, or my friend, Briar Storms’, choice to end their lives with whatever remaining dignity in their bodies and spirit.
There is a new death with dignity situation where a 17 year old, Cassandra C., who has Hodgkin’s Lymphoma, has been denied by the Connecticut Supreme Court to be taken out of state custody forcing her to have chemotherapy, raising new religious, moral and legal questions about the individual’s right to control their end of life choices. And the reappearance of a politician who forced his state to intervene in an end of life decision has raised the national awareness and discussion of this issue.
The words we use to describe the end of life decision are harsh: euthanasia, suicide and assisted suicide, and assisted death are inadequate and harsh. “Mercy killing” is a little less harsh, but still judgmental. This is the U.S. Center For Disease Control’s definition of suicide and contemplation thereof are very clinical. The CDC has its definitions listed under “self-directed violence”.
Death caused by self-directed injurious behavior with any intent to die as a result of the behavior Suicidal ideation – Thinking about, considering, or planning for suicide.
The definition of euthanasia (from Merriam Webster’s Medical Dictionary) is more compassionate:
The act or practice of killing hopelessly sick or injured individuals (as persons or domestic animals) in a relatively painless way for reasons of mercy; also : the act or practice of allowing a hopelessly sick or injured patient to die by taking less than complete medical measures to prolong life—called also mercy killing.
It was the efforts of “Dr. Death”, the controversial Dr. Jack Kevorkian, who initially raised public interest and discussion about making end of life decisions, a taboo subject in many circles.
But Jack Kevorkian would become infamous in 1990, when he assisted in the suicide of Janet Adkins, a 45-year-old Alzheimer’s patient from Michigan. Adkins was a member of the Hemlock Society — an organization that advocates voluntary euthanasia for terminally ill patients — before she became ill. After she was diagnosed with Alzheimer’s, Adkins began searching for someone to end her life before the degenerative disease took full effect. She had heard through the media about Kevorkian’s invention of a “suicide machine,” and contacted Kevorkian about using the invention on her.
Kevorkian agreed to assist her in a public park, inside his Volkswagen van. Kevorkian attached the IV, and Adkins administered her own painkiller and then the poison. Within five minutes, Adkins died of heart failure. When the news hit media outlets, Kevorkian became a national celebrity — and criminal. The State of Michigan immediately charged Kevorkian with Adkins’ murder. The case was later dismissed, however, due to Michigan’s indecisive stance on assisted suicide.
Dr. Kevorkian was interviewed about his beliefs and work on “60 Minutes”(130 assisted deaths)
“ I did it to end suffering. What’s a doctor supposed to do, turn his back?”
It was also in 1990, that the death with dignity situation of Terri Schiavo became national news.
Terri Sciavo was 27 years old when she collapsed from a full cardiac arrest in her St. Petersburg, Florida home. The cardiac arrest caused cessation of oxygen to her brain leading to severe and permanent brain damage. She was in a coma for 2 ½ months. For 2 years, doctors and various therapists tried to help her regain consciousness, with no results. She was legally determined to be in a vegetative state and was existing because of the life support equipment. She had left no will and no written instructions on what to do in a life or death situation like this. Michael Schiavo claimed that she had told him her wishes verbally.
In 1998, her husband petitioned the Sixth Court of Florida to remove his wife’s feeding tubes. Her parents opposed doing so, claiming that she remained conscious. Terri Schiavo’s life became then became a political football, with Florida Governor Jeb Bush first intervening and then his brother, President George W. Bush, signing federal legislation to keep her alive.
In all, the Schiavo case involved 14 appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in federal district court; Florida legislation struck down by the Supreme Court of Florida; federal legislation (the Palm Sunday Compromise); and four denials of certiorari from the Supreme Court of the United States.
After all attempts at appeals through the federal court system upheld the original decision to remove the feeding tube, staff at the Pinellas Park hospice facility where Terri was being cared for disconnected the feeding tube on March 18, 2005. Terri died on March 31, 2005.
The following is a video of Terri Schiavo’s “life”, right before her death.
Even now, Michael Sciavo remains angry about the intervention of the Bush brothers into his and his wife’s personal decision.
Sitting recently on his brick back patio here, Michael Schiavo called Jeb Bush a vindictive, untrustworthy coward.
For years, the self-described “average Joe” felt harassed, targeted and tormented by the most important person in the state.
“It was a living hell,” he said, “and I blame him.”…..
The St. Petersburg Times had covered the trial. Bush, a year and a month into his first term, started hearing about it almost immediately. Staffers replied at first with a variety of form responses.
“The Florida Constitution prohibits the Governor’s intervention in matters that should be resolved through the court system,” read one. But here’s what else it said: “As a concerned citizen, you have the opportunity to influence legislation pertaining to guardianship matters in cases similar to Terri’s. By contacting your local legislative delegation, such as your senator or representative, new legislation can be introduced. If such a bill ever comes before the Governor for signature, he will certainly remember your views.”
Bush couldn’t do anything. Laws didn’t let him. But that didn’t mean he didn’t want to. He did.
In the 25 years since Terri Sciavo suffered the brain damaging heart attack, there has been little movement in the country’s “dying with dignity” situation. Only three states have enacted legislation: Oregon, Washington and Vermont. My dear friend, Briar Storms, went to Washington, to be able to find relief from her long-standing suffering from Stage 4 cancer.
And as Oregon’s experience, since 1998, does not indicate a rush for “assisted suicide”. Even those who are approved by the doctors don’t always take this option.
After a decade of physician-assisted suicide in Oregon, what results do we have from this unique experiment carried out in what Justice Brandeis famously called the “laboratory” of the states? Among the lessons that this past decade holds — lessons that might illuminate the decisions faced by Washington voters — are several surprises.
Death with dignity is the death of choice for relatively few persons. Before the act was implemented, opponents anticipated a demographic migration of near-terminal patients to Oregon, such that Oregon would become a “suicide center” for the terminally ill, with all sorts of ensuing social catastrophes. The empirical evidence does not bear out these projections. In ten years, 541 Oregon residents have received lethal prescriptions to end their lives; of this number, 341 patients actually ingested the drugs. These figures are not only lower than the substantial numbers predicted by opponents, they are even smaller than the more conservative estimates anticipated by advocates. While those figures have generally risen each year, the deaths under the ODDA still comprise a very low proportion of Oregon’s total deaths.
Twenty-five states, including my state of Massachusetts, are considering enacting death with dignity legislation. Colorado appears to be closest to passing this legislation.
The push for end-of-life autonomy keeps gaining strength. Lawmakers continue to advance aid-in-dying legislation in states across the country, with Compassion & Choices’ assistance, and inspired by advocate Brittany Maynard and others’ call for change.
Last Tuesday, January 27, Colorado supporters heralded the introduction of House Bill 1135, “An Act Concerning a Terminally Ill Individual’s Freedom To Make End-Of-Life Decisions,” sponsored by Rep. Lois Court, Rep. Joann Ginal and Sen. Lucia Guzman. An emotional press conference followed, where sponsors denounced the inaccurate and inflammatory term “doctor-assisted suicide.”
These people are not suicidal,” Ginal said of terminally ill adults who wish for this option. “Their disease is going to kill them. They want to choose the what, the where, the when and particularly the with whom so that they have comfort when their journey ends.”
A poll taken a day after the bill’s introduction indicated overwhelming support: 68% of Colorado voters responded in favor of the legislation.
Court acted after one of her constituents, Charlie Selsberg, wrote an op-ed in The Denver Post about his choice to stop eating so he could die peacefully on his own terms rather than endure the torment of dying from ALS.
“It was the only choice I saw to end my life,” he said, “The only thing I can control.” It took nearly two weeks for Selsberg to pass.
For those who want to pursue every possibility, Maine is considering legislation to allow use of experimental drugs for the terminally ill.
Maine could become one of a growing number of states to allow terminally ill patients the right to try experimental drugs before they’re approved by federal regulators for public use.
A bill by state Rep. Thomas Longstaff, D-Waterville, would make Maine the latest state to pass such a “right-to-try” law. The move would make available for terminal patients any drug that had passed the first phase of the federal Food and Drug Administration’s three-step drug approval process.
The government shouldn’t say, ‘Well, it’s not finally approved, so too bad. You’re going to die,’” Longstaff, a former hospital chaplain who worked with some terminal patients, said in a recent interview.
Last year, five states — Arizona, Colorado, Louisiana, Michigan and Missouri — passed versions of the plan, known by advocates as the “right-to-choose” law. Maine is one of 26 states pursuing such a law this year, according to the Goldwater Institute, a libertarian group that supports the reform effort.
The FDA currently has a process for expanded access to experimental drugs, or “compassionate use,” which gets experimental medicine into the hands of patients, effectively allowing them to participate in clinical trials from a distance.
The FDA approves nearly every request for compassionate use, but critics have said the process is too complicated and slow. Longstaff’s right-to-try bill cuts the FDA out of the process entirely, allowing terminally ill patients to go to drug companies directly if their doctor recommends it.
Americans have very schizophrenic and irrational views about “control over their bodies”. We have the craziness of the anti-vaccine movement, brought to light by the recent epidemic of measles in California. We have all of those who refuse to acknowledge a woman’s “right to choose” and to use birth control. There are the opponents to the Affordable Health Care Act railing against “death panels”. What should scare them even more is the government’s intervention into a personal choice decision by the venal and politically corrupt brothers – the President and the Florida governor.
To me, this is absolute hypocrisy from the nation founded on the rights to “life, liberty and the pursuit of happiness”. Tell me how my mother and uncle were pursuing happiness in their agony at the end of their lives. Tell me how Terri Schiavo was having liberty being kept alive by machines. Tell me how Briar Storms’ life was not enhanced by her choice to terminate the treatments for an incurable disease and for her finally to be at peace and rest.
I have no problem with each person making their own choice about how they wish to die, as long as there is medical approval involved. While I understand Cassandra C’s wishes, (and I have serious reservations about any governmental intervention into this personal decision) she is too young, has too much to live for and has the too great probability of successful treatment for her to make this choice. Brittany Maynard was not that much older than Cassandra, but her situation was much different and more dire.
What I do know is when my time comes, as it will, I don’t want to be kept alive by artificial means, if there is no scientific hope of reversal. That’s my choice and I want it to be respected. I’d like for this to be on my grave.
Death With Dignity should be the American way of dying.
For more information about the “Dying With Dignity” movement, please go to:
Copyright © February 2015, Michael A. Maynard, Stow, Massachusetts.
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Last month, while traveling through Europe, I met a 65-year-old woman in Amsterdam determined never to wind up like my grandmother. Jannie Willemsen is in near-perfect health, but as we sat down at a small café, she showed me papers that laid out the circumstances under which she no longer wants to live: if she’s severely and permanently lame; if she can no longer leave the house on her own; if she’s dependent on others to eat, drink, shower and put on her clothes; if she goes blind or deaf or is suffering from dementia—most of what my grandmother experienced in her final months. “I’m an autonomous person,” Willemsen says. “For me, it seems a disaster not to be able to go out and visit friends, to a concert, to the theater.”
A kind and lively woman, Willemsen is now retired from her career as a biologist. She and her husband signed their power of attorney papers in 1997, just after doctors diagnosed him with intestinal cancer. Neither had any interest in living longer than what felt natural; they wanted to decide for themselves when they would go. Willemsen’s husband died in 2004, not from cancer but a heart problem. He was “lucky,” she says, because he didn’t suffer for long. After his second operation to remove intestinal tumors, his heart stopped. Willemsen had to produce his papers, she says, to convince the doctors not to resuscitate him. “They said, ‘Our first concern is keeping him alive,’” she recalls. But that’s not what he wanted. It’s not what she wants, either.
In a unanimous decision, The Supreme Court Friday struck down as unconstitutional the nation’s contentious century-old law against assisted suicide.
The historic ruling opens the door to physician-assisted suicide for consenting, severely ill adults who want to control the method, timing and circumstances of their death.
In the landmark 9-0 decision, the high court ruled that the Criminal Code provision against aiding and abetting someone to commit suicide deprives people suffering from grievous and irremediable medical conditions the right to life, liberty and security of the person as guaranteed under the Charter.
The court’s ruling limits physician-assisted suicides to “a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition, including an illness, disease or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”
Within those parameters, the court said the nature of the suffering includes either physical or psychological pain. The person’s condition need not be terminal.
Doctors, meanwhile, cannot be compelled to assist someone in suicide, the court stressed.
UPDATE: February 15, 2015 – From the Washington Post:
More than 20 years after Jack Kevorkian jolted America with his assisted-suicide machine, Rehm is becoming one of the country’s most prominent figures in the right-to-die debate. And she’s doing so just as proponents are trying to position the issue as the country’s next big social fight, comparing it to abortion and gay marriage. The move puts Rehm in an ethically tricky but influential spot with her 2.6 million devoted and politically active listeners.
Now 78 and pondering how to manage her own death, Rehm is working with Compassion & Choices, an end-of-life organization run by Barbara Coombs Lee, a key figure in Oregon’s passage of an assisted-suicide law and a previous guest on the show. Rehm will appear on the cover of the group’s magazine this month, and she is telling John’s story at a series of small fundraising dinners with wealthy donors financing the right-to-die campaign.
UPDATE: March 2, 2015. From CNN:
A Chilean girl’s plea via social media for an assisted suicide caught the attention of the person the teen thinks could make it happen: President Michelle Bachelet.
Bachelet visited 14-year-old Valentina Maureira on Saturday after the girl’s video went viral and spurred debate in Chile about euthanasia.
Valentina was diagnosed with cystic fibrosis when she was 6. Her older brother died from the same disease.
Cystic fibrosis is a life-threatening disease that damages the lungs and digestive system. Valentina’s family has already witnessed how the disease can be terminal.
Valentina’s suffering includes vomiting and headaches that are constant, according to her father, Freddy Maureira.
UPDATE: March 3, 2015 – Canada Legalizes Euthanasia, As High Court Passes Assisted Suicide Law
From Medical Daily: Conserving a human life is important, yet so is protecting free will, and on Friday Canada ruled that the latter outweighed the former. In a unanimous vote, the Standard Council of Canada, the country’s highest court, struck down a ban for doctor-assisted suicide, making the practice fully available to all mentally competent Canadian patients with terminal illnesses.
Canada’s latest decision on physician-assisted suicide, also known as euthanasia, came in response to cases brought by the families of two British Columbian women, Gloria Taylor and Kay Cater The Daily Record reported. Taylor was suffering from amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease, and Carter had a degenerative spinal cord condition. Both women died prior to the recent ruling. Taylor died to an infection not long after her appeal for the right to death was rejected in 2012. After Carter’s appeal was rejected, she travelled to Switzerland to undergo a legal physician-assisted suicide. Although the women have since passed, their impacts on Canadian legislature live on, and their influence on the decision is clear to see. As reported by The Record, the court stated that “by leaving people like Ms. Taylor to endure intolerable suffering, it impinges on their security of person.”
Update: March 13, 2015 – From The Huffington Post
Then, on November 1, 2014, surrounded by her husband and the other people she loved, Maynard took a fatal dose of medication prescribed by her doctor. Her husband, Dan Diaz, describes to Oprah in the above video about what happened in those intimate final moments.
“The mood in the house was very peaceful, very loving,” he says.
Before drinking the medication, Maynard had asked her loved ones to share a favorite memory with her. She soaked up their stories, and then, it was time.
Maynard lay in bed with both Diaz and their dogs, Bella and Charlie, by her side.
“The medication, we brought it in,” Diaz says. “She was ready.”
As a part of her final goodbyes, Maynard also reached out to those that weren’t in the room with her. “She actually wrote on Facebook a message to her friends and said, ‘I love you,’ to everyone,” Diaz says. “To me…”
Maynard then drank the medication.
“Within five minutes, she fell asleep,” Diaz says. “[It was] very peaceful.”