The Register is following Jennifer Holm, an Ankeny wife and mother advocating for medically assisted suicide. She has carcinoid cancer and sarcoidosis, two deadly diseases. Rodney White, Jason Clayworth, Kyle Munson/The Register
ANKENY, Ia. — Jennifer Holm sat in front of a microphone at the state Capitol this month, explaining in excruciating detail for lawmakers and a roomful of Iowans the gruesome death that awaits her.
The 45-year-old married mom says she feels duty bound to put her private medical battle on public display. The so-called right-to-die movement is personal to Holm, stricken with two deadly diseases: carcinoid cancer and sarcoidosis. In recent months, she has emerged as an increasingly vocal advocate for legalizing physician-assisted suicide for the terminally ill.
As Holm sees it, she has lost control of her body, but not the memory she leaves behind.
“So this is my future,” Holm said after she had described how cancer is expected to ravage her intestines and chew its way out of her abdomen. “My son is 18 and a freshman up at (Iowa State University) and I do not want him to see me in that condition. I don’t want my husband to see me in that condition. I don’t want them to dread” — Holm paused to choke back tears — “coming to see me, and not wanting to smell what I’m going to smell like.”
Holm spoke on behalf of a “Death With Dignity” bill in Iowa that won’t be voted on this year at the Statehouse. But advocates and opponents of the legislation agree that Iowa’s right-to-die movement is just getting started.
And the front lines of this legislative, legal and ethical battle just might run through Holm’s cancer-riddled body. She and her allies are formulating a plan that could circumvent lawmakers to make Iowa the sixth state to authorize a physician’s help in dying.
Holm gained more than 50 lbs as a consequence of the cancer and the treatments she received. Photo: special to the Register
Holm wants to strike down current Iowa law that makes medically assisted suicide a felony, an effort that made headlines during this year’s legislative session but stalled due to legislative deadlines.
Iowa is one of at least 18 states that, this year, considered such action, according to the Death with Dignity National Center, an Oregon-based advocacy group. Iowa’s neighboring state legislators in Wisconsin, Minnesota, Missouri and Nebraska also have been wrestling with the issue. That includes an effort being closely watched in Nebraska, where an Omaha senator has vowed to continue pushing the measure despite the bill stalling this year too.
Four states allow medically assisted suicides: Oregon, Montana, Washington and Vermont. A California law allowing it will go into effect in June.
In Oregon, the first state to legalize physician-assisted suicide, 1,327 patients from 1998 through 2014 were approved and issued prescriptions for the lethal drug. Only 859 of them carried out their suicides, state records show.
Advocates behind efforts to allow terminally ill adults a medically assisted suicide option in their final days contend that there are no documented cases of abuse in the states that have the systems in place. And they say they have the support of the majority of the public in their quests to extend the option to other states. A Des Moines Register/Mediacom Iowa Poll conducted in February found that 59 percent of Iowans support a “right to die” for the terminally ill. Nationally, almost 70 percent say doctors should be allowed to assist terminally ill patients in suicide, according to a 2015 Gallup poll.
Despite public support, most of the legislative efforts have stalled in the wake of fierce opposition.
That’s why Holm believes that skipping the legislative process — it worked in Montana and briefly in New Mexico before an appeals court struck it down — is an attractive alternative to legislative approval. But the terminally ill Ankeny woman acknowledges that she faces massive financial, legal and physical hurdles.
Holm doesn’t want to bankrupt her family just to build her legacy as a pioneer of rights for suffering patients with a prognosis of six months or less to live. So she has sought assistance from sympathetic groups such as the American Civil Liberties Union and Compassion & Choices.
Jennifer Holm, two years after Carcinoid Syndrome started (Photo: Special to the Register)
Much of the latter organization’s local footprint is centered in a study group at First Unitarian Church in Des Moines. The progressive-minded congregation as early as 1988 passed a resolution in favor of a right to die. Compassion & Choices’ Iowa chapter president, Kay Becker, said her local group has built a network of about 6,000 people who have signed petitions or otherwise support its work.
Becker became interested in euthanasia in the 1990s when Dr. Jack Kevorkian in Michigan helped 130 ailing patients end their lives. He ultimately served eight years in prison before his death at 83 in 2011.
Becker, 68, lamented what she called Kevorkian’s “persecution.” She also watched her grandfather, two parents and a father-in-law die lingering deaths in nursing homes.
“They better get this thing worked out before it’s my turn,” she said. “Because I’m not doing that.”
Noun, Maynard and Hurd push the issue
Prominent Iowans in recent years have helped to bring the right-to-die movement to the forefront.
Louise Noun, a former ACLU national board member, took a fatal drug overdose in 2002. The 94-year-old activist left a suicide note that proclaimed the right-to-die cause as her “final project.” A letter to the editor, posthumously published in The Des Moines Register, even took care to indemnify her caregivers: “Please note that no employee of the Iowa Jewish Senior Life Center helped me in any way in my suicide attempt,” she wrote.
Last month, former Principal Financial CEO and beloved philanthropist David Hurd, 86, stricken with Lewy body disease, jumped from the 22nd floor of his downtown Des Moines condo.
Hurd’s death struck new fervor into the debate, triggered nationally by the case of 29-year-old brain cancer patient Brittany Maynard, who moved from California to Oregon to end her life legally in November 2014 with a lethal pill.
Then last year, California Gov. Jerry Brown signed a physician-assisted suicide bill into law for his state.
Fight for human dignity
Holm, the wife of Register reporter Dan Holm, is a dedicated activist in a race against two deadly diseases.
Her first symptoms, some that began as early as 2004, included pain in her ribs. Some of her initial treatments were for gastrointestinal ailments. Then, about six years ago, she was diagnosed with carcinoid cancer. It’s a rare disease that scatters tumors throughout the abdomen, piercing holes that allow bile and the other contents of the intestines to seep into a person’s body.
Surgery in April 2010 to remove a tumor 2½ centimeters in diameter revealed that the cancer had spread to nine of her 16 lymph nodes.
Doctors also discovered granulomas on her liver, which led to a second diagnosis: sarcoidosis. The inflammatory disease most often affects a patient’s lungs but also can manifest in other organs.
Jennifer Holm, a terminally-ill cancer patient, is an advocate for medically-assisted suicide. Here she talks about her medical treatment schedule during a visit March 1 to Methodist Hospital in Des Moines. (Photo: Jason Clayworth/The Register)
The news led to what she refers to as her “retirement” in August 2010. That’s when she was placed on long-term disability from her job as a manager for Iowa State University’s Center for Industrial Research and Service.
“You still don’t expect the worst news,” Dan Holm said of the phone call that confirmed his wife’s cancer diagnosis. “It was pretty emotional. We hugged, we cried. I just did what I could to support her and tell her we’ll do whatever we have to do to get through this.”
The final stages of carcinoid neuroendocrine cancer are excruciating and demoralizing, including smells from body toxins that Holm fears will mar her family’s lasting memories of her.
She already suffers through bad days.
Holm, a terminally-ill cancer patient, frequently experiences excruciating pain, using drugs like hydromorphone that she says frequently fail to work. Here she shows some of the pills while visiting Methodist Hospital in Des Moines on March 1, 2016. (Photo: Jason Clayworth/The Register)
“It literally feels what I would imagine if someone had shot me through my stomach and clear through and out my spine and just shattered my spine,” she said. “I mean, I just can’t imagine describing it in any other way. It’s the most pain I’ve ever felt, including giving childbirth.”
Doctors haven’t yet given Holm a concise terminal diagnosis, meaning she wouldn’t even qualify for the law for which she has been perhaps the most visible and vocal advocate.
That’s OK. She’s not in a hurry.
But at the very least, Holm craves her own peaceful and legal “exit plan” that, in her view, will let her retain human dignity.
The bottom line: She doesn’t believe people who want to end their suffering before the final stages of a terminal illness should be forced to resort to more harrowing, gruesome forms of suicide.
“Some people think that suicide is wrong,” she said, “but that’s not what we’re talking about. We’re talking about when someone is already in the process of dying.
“Everybody wants to be able to peacefully go to sleep and not wake up and have their friends and family around them at that time,” she said.
Holm’s family fully supports her cause.
Holm, on March 1, 2016, speaks with Julia Burke, a certified nuclear medical technician at Methodist Hospital in Des Moines. (Photo: Jason Clayworth/The Register)
Can Iowa follow Montana’s lead?
To make a right to die a reality in Iowa, Holm would mimic a legal effort that succeeded in Montana. That case involved Robert Baxter, a terminally ill leukemia patient who died in 2008 from the disease before doctors were able to legally assist him in suicide.
Montana’s supreme court in 2009 ruled that the “rights of the terminally ill” law allows doctors to prescribe medication to aid the death of terminally ill adults who request it, and those doctors avoid charges related to another law that bans assisted suicide.
Iowa has a law honoring the rights of the terminally ill by allowing them to deny care that would prolong their lives. Holm believes those rights extend to the ability to request life-ending medications and is seeking the assistance of national groups in hopes that they can help her launch the legal challenge.
Officials from the American Civil Liberties Union of Iowa and Compassion & Choices responded to questions about Holm’s outreach to them by saying they are or will be reviewing the issue of medically assisted suicide in connection with Iowa laws. But both groups declined to discuss Holm’s situation, and she has yet to file a lawsuit.
Stephen Speckart, an oncology doctor who joined Baxter as a plaintiff challenging Montana’s law, noted that unsuccessful challenges have been made in every legislative session after the 2009 ruling in an attempt to end doctor-assisted deaths in his state.
Even in retirement, Speckart advocates for the right-to-die cause. The key arguments from groups and people who oppose the efforts — that it will encourage suicides among physically healthy adults or lead to coerced suicides of the disabled and elderly — have not materialized, he said.
“There are individuals who have horrible suffering, and they should have a right and the freedom to do that if they meet all the criteria,” Speckart said. “It is a positive thing to do. It’s just one of those big social changes that I think is evolving across the states.”
The American Academy of Medical Ethics has been mobilizing in the past 20 years to reverse that trend. It has volunteer directors in 30 states, including Iowa, with a goal of covering all 50.
Dr. David Stevens, the group’s Bristol, Tenn.-based executive director, contends that the current legislative and legal battles are not about giving patients the right to die but giving doctors the right to kill. He drew a distinction between the removal of his mother-in-law from a respirator and the lethal pills or similar remedies outlined in death-with-dignity legislation.
“My intent was not to make her dead,” Stevens said of his mother-in-law. “My intent was to remove a burdensome treatment and the disease killed her, not me.”
Stevens routinely testifies in front of state lawmakers and has closely followed debates this winter in Colorado and New York. Colorado’s legislation was voted down. New York has two bills languishing in committee and also has a pending appeal against the current state law banning assisted suicide.
Stevens’ academy and Compassion & Choices routinely square off in state legislatures and medical associations, as well in the media and courts.
Multiple efforts to change the law in Montana have failed in the Republican-led Legislature, where a divide between personal freedoms and religious beliefs has played a role in the debate, even among the state’s GOP officials.
Emily Bentley, an outreach manager for Compassion & Choices who works with Montana, said the medically assisted suicide movement is based largely on personal stories. As the public and lawmakers learn the facts and reasons behind death with dignity, bipartisan support generally grows for responsible legislation that offers personal choice, she said.
“My advice to Iowa is for people to continue to share their stories,” Bentley said. “There are so many people who have loved ones who have faced hard deaths, and they were helpless to help them die peacefully.”
Start of a tumultuous year of debate?
Iowa’s “Death With Dignity” bill was sponsored by Joe Bolkcom, an Iowa City Democrat who intends to reintroduce it next year. Even after the bill stalled, he convened a subcommittee meeting March 3 that signaled the start of the prolonged debate to come.
The Capitol conference room was dotted with Compassion & Choices volunteers, easily identifiable in their bright yellow T-shirts. One of their allies, Bob Ready, was there as organizer of a new Iowa chapter of the Secular Coalition of America.
“Blanket opposition to this (Iowa bill) is almost entirely rooted in religious belief,” he said.
More than a dozen Iowans spoke on the issue, each with a differing view.
Michael Demastus, pastor at the Fort Des Moines Church of Christ, invoked Scripture and the Declaration of Independence. The Founding Fathers, he said, “never recognized a right to die. And for precisely the same reason, if we believe every person’s life is equally valuable, then the claim that some lives are too painful, too hopeless, too unproductive to live demeans all lives to collective worthlessness. People are not stray animals to be put down. We are precious, unique creations of God. We bear his very image.“
John Hale, a longtime consultant and lobbyist in the elder care industry, later countered the pastor: “The Founding Fathers didn’t end that with life. They talked about life, liberty and the pursuit of happiness. The issue comes down to personal freedom and individual liberty — do we have it or don’t we? Can the views and beliefs of some be used to deny the freedom and liberty of others? Some in this room would say indeed they can. I would hope that we would say otherwise.”
The senators on the subcommittee were similarly split.
State Sen. Rich Taylor, a Democrat from Mount Pleasant, described how his sister “decided to have her doctors unplug her from life support. I don’t see the difference. I think this is just another option. She was very religious.”
In contrast, Republican State Sen. David Johnson evoked the memory of his father as an Army soldier helping to liberate a Nazi death camp in World War II as a warning against what he sees as the unintended consequences of state-sanctioned suicide.
“Now some of you might think that’s an extreme comparison,” Johnson said. “I don’t think so. We’re talking about government-sanctioned action like this.”
Holm delivered some of the most emotional testimony.
“We are not talking about teenagers that want to commit suicide or veterans with PTSD or depressed adults or teenagers,” she told the senators. “That’s not what this is about. This is about people that are at the end of the dying process.”
Holm’s goal had been to live long enough to see the couple’s son Jeydon, now an ISU freshman, graduate from high school.
Now her sights are set on the law that could help dictate how she, or any other terminally ill adult Iowan, dies. She has an “exit” strategy but has declined to speak about what that involves, saying she doesn’t want to associate anyone with the matter for fear that they could face legal consequences.
Holm knows people who have made unsuccessful suicide attempts, leaving them in a dysfunctional mental or physical state; some in comas.
It’s why she wants the right to have her exit be legally assisted by physicians.
“I’m not afraid of death,” Holm said. “But I am afraid of the torture I might face before death.”
What is it: Medical aid in dying — or “death with dignity” — generally refers to when a terminally ill, mentally capable person with a prognosis of six months or less to live requests, obtains and chooses to self-ingest medication that brings a peaceful death. Doctors must confirm that the person is fully informed and provide the patient with additional options, including hospice and pain control.
Abuse: Advocates contend that no cases of abuse or coercion have been documented in nearly two decades since medical aid in dying has been practiced in the United States.
States: Residents of Oregon, Washington, Montana and Vermont can choose medical aid in dying. California residents will as of June 9.
Countries: The Netherlands, Belgium, Luxembourg and Switzerland.
Sources: Compassion & Choices and Campaign for Dignity in Dying
ABOUT THE PROJECT:
THE FIGHT TO DIE: Jennifer Holm is a 45-year-old mother and wife of Register writer Dan Holm. The Ankeny resident suffers from two types of terminal cancer, the first of which was diagnosed in 2010.
She is using her last days to advocate for Iowa’s adoption of medically assisted suicide for terminally ill adults and is seeking legal assistance to sue the state for that right.
This project, told in both print and in video, will chronicle her battle.
Source: The Des Moines Register
Kyle Munson is the Iowa columnist for The Des Moines Register. He’s a lifelong journalist who travels all 99 counties in search of Iowa’s best stories and characters. He can be reached at 515-284-8124 or firstname.lastname@example.org. See more of his columns and video at DesMoinesRegister.com/KyleMunson. Connect with him on Facebook (/KyleMunson) and Twitter (@KyleMunson).
Jason Clayworth is an investigative reporter at The Des Moines Register. He is an Iowa native and a graduate of Drake University’s journalism school. Clayworth can be reached at 515-699-7058 or email@example.com. Connect with him on Facebook (/JasonClayworth) and Twitter (@JasonClayworth).
Rodne White is a visual journalist and has worked at the Register since 2000. Contact him at 515-284-8515 or at firstname.lastname@example.org. Follow him on Twitter at @rodneywhite or on Instagram at @rodneyawhite.
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