Bob Dent ended his life in Perth, Australia in 1996 after multiple surgeries to treat terminal prostate cancer had left him mostly bedridden and in agony.
Although Dent and his immediate family believed it was the right thing to do, the physician who assisted in his suicide – and had pushed for Australia's Northern Territory to legalize the practice the prior year – was deeply shaken.
"You climb in, you are going somewhere, you are leaving, and you are saying goodbye."
"When you get to know someone pretty well, and they set a date to have lunch with you and then have them die at 2 p.m., it's hard to forget," recalls Philip Nitschke.
Nitschke remembers being highly anxious that the device he designed – which released a fatal dose of Nembutal into a patient's bloodstream after they answered a series of questions on a laptop computer to confirm consent – wouldn't work. He was so alarmed by the prospect he recalls his shirt being soaked through with perspiration.
Known as a "Deliverance Machine," it was comprised of the computer, attached by a sheet of wiring to an attache case containing an apparatus for delivering the Nembutal. Although gray, squat and grimly businesslike, it was vastly more sophisticated than Jack Kevorkian's Thanatron – a tangle of tubes, hooks and vials redolent of frontier dentistry.
The Deliverance Machine did work – for Dent and three other patients of Nitschke. However, it remained far from reassuring. "It's not a very comfortable feeling, having a little suitcase and going around to people," he says. "I felt a little like an executioner."
The furor caused in part by Nitschke's work led to Australia's federal government banning physician-assisted suicide in 1997. Nitschke went on to co-found Exit International, one of the foremost assisted suicide advocacy groups, and relocated to the Netherlands.
Exit International recently introduced its most ambitious initiative to date. It's called the Sarco — essentially the Eames lounger of suicide machines. A prototype is currently on display at Venice Design, an adjunct to the Biennale.
Sheathed in a soothing blue coating, the Sarco prototype contains a window and pivots on a pedestal to allow viewing by friends and family. Its close quarters means the opening of a small canister of liquid nitrogen would cause quick and painless asphyxiation. Patrons with second thoughts can press a button to cancel the process.
"The sleek and colorful death-pod looks like it is about to whisk you away to a new territory, or that it just landed after being launched from a Star Trek federation ship," says Charles C. Camosy, associate professor of theological and social ethics at Fordham University in New York City, in an email. Camosy, who has profound misgivings about such a device, was not being complimentary.
Nitschke's goal is to de-medicalize assisted suicide, as liquid nitrogen is readily available. But he suggests employing a futuristic design will also move debate on the issue forward.
"You pick the time...have the party and people come around. You climb in, you are going somewhere, you are leaving, and you are saying goodbye," he says. "It lends itself to a sense of occasion."
Assisted suicide is spreading in developed countries, but very slowly. It was legalized again in Australia just last June, but only in one of its six states. It is legal throughout Canada and in nine U.S. states.
Although the process is outlawed throughout much of Europe, nations permitting it have taken a liberal approach. Euthanasia — where death may be instigated by an assenting physician at a patient's request — is legal in both Belgium and the Netherlands. A terminal illness is not required; a severe disability or a condition causing profound misery may suffice.
Only Switzerland permits suicide with non-physician assistance regardless of an individual's medical condition. David Goodall, a 104-year Australian scientist, traveled 8,000 miles to Basel last year to die with Exit International's assistance. Goodall was in good health for his age and his mind was needle sharp; at a news conference the day before he passed, he thoughtfully answered questions and sang Beethoven's "Ode to Joy" from memory. He simply believed he had lived long enough and wanted to avoid a diminishing quality of life.
"Dying is not a medical process, and if you've decided to do this through rational [decision-making], you should not have to get permission from the medical profession," Nitschke says.
However, the deathstyle aspirations of the Sarco bely the fact obtaining one will not be as simple as swiping a credit card. To create a legal firewall, anyone wishing to obtain a Sarco would have to purchase the plans, print the device themselves — it requires a high-end industrial printer to do so — then assemble it. As with the Deliverance device, the end user must be able to answer computer-generated questions designed by a Swiss psychiatrist to determine if they are making a rational decision. The process concludes with the transmission of a four-digit code to make the Sarco operational.
As with many cutting-edge designs, the path to a working prototype has been nettlesome. Plans for a printed window have been abandoned. How it will be obtained by end users remains unclear. There have also been complications in creating an AI-based algorithm underlying the user questions to reliably determine if the individual is of sound mind.
While Nitschke believes the Sarco will be deployed in Switzerland for the first time sometime next year, it will almost certainly be a subject of immense controversy. The Hastings Center, one of the world's major bioethics organizations and a leader on end-of-life decision-making, flatly refused to comment on the Sarco.
Camosy strongly condemns it. He notes since U.S. life expectancy is actually shortening — with despair-driven suicide playing a role — efforts must be marshaled to mitigate the trend. To him, the Sarco sends an utterly wrong message.
"It is diabolical that we would create machines to make it easier for people to kill themselves."
"Most people who request help in killing themselves don't do so because they are in intense, unbearable pain," he observes. "They do it because the culture in which they live has made them feel like a burden. This culture has told them they only have value if they are able to be 'productive' and 'contribute to society.'" He adds that the large majority of disability activists have been against assisted suicide and euthanasia because it is imperative to their movement that a stigma remain in place.
"It is diabolical that we would create machines to make it easier for people to kill themselves," Camosy concludes. "And anyone with even a single progressive bone in their body should resist this disturbingly morbid profit-making venture with everything they have."
At age 52, Glen Rouse suffered from arm weakness and a lot of muscle twitches. “I first thought something was wrong when I could not throw a 50-pound bag of dog food over the tailgate of my truck—something I use to do effortlessly,” said the 54-year-old resident of Anderson, California, about three hours north of San Francisco.
In August, Rouse retired as a forester for a private timber company, a job he had held for 31 years. The impetus: amyotrophic lateral sclerosis, or ALS, a progressive neuromuscular disease that is commonly known as Lou Gehrig’s disease, named after the New York Yankees’ first baseman who succumbed to it less than a month shy of his 38th birthday in 1941. ALS eventually robs an individual of the ability to talk, walk, chew, swallow and breathe.
Rouse is now dependent on ventilation through a nasal mask and uses a powerchair to get around. “I can no longer walk or use my arms very well,” he said. “I can still move my wrists and fingers. I can also transfer from my chair to the toilet if I have two of my friends help me.”
It’s “shocking” that modern medicine has very little to offer to people with this devastating condition, Rouse said. But there is hope on the horizon. Yesterday, the U.S. Food and Drug Administration approved Relyvrio, a drug made up of two parts, sodium phenylbutyrate and taurursodiol, to treat patients with ALS.
“This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure,” said Billy Dunn, director of the Office of Neuroscience in the FDA’s Center for Drug Evaluation and Research, in a statement. “The FDA remains committed to facilitating the development of additional ALS treatments.”
Until this point, the FDA had approved only two other medications—Riluzole (rilutek) in 1995 and Radicava (edaravone) in 2017—to extend life in patients with ALS, which typically kills within two to five years after diagnosis. That’s why earlier this week, Rouse was optimistic about the FDA’s likely approval of a controversial new drug for ALS.
When Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months, said Richard Bedlak, director of the Duke ALS Clinic. “It is not a cure, but it is definitely a step forward.”
“The whole ALS community is extremely excited about it,” he said the day before Relyvrio’s expected approval. “We are very hopeful. We’re on pins and needles.”
A study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective, the agency’s Peripheral and Central Nervous System Drugs Advisory Committee concluded in March. However, after some persuasion from FDA officials, patients and their families, the committee met again and decided to recommend approving the drug.
In January 2019, following an ALS diagnosis at age 58 in October the previous year, Jeff Sarnacki, of Chester, Maryland, was accepted into a trial for Relyvrio. “Because of the trial, we did experience hope and a greater sense of help than had we not had that opportunity,” said Juliet Taylor, his wife and caregiver. They both believed the drug “worked for him in giving him more time.”
In June 2019, Sarnacki chose an open-label extension, offered to patients by drug researchers after a study ends, and took the active drug until he died peacefully at home under hospice care in May 2020, five days after his 60th birthday. A retired agent with the federal Bureau of Alcohol, Tobacco, Firearms and Explosives who later worked as a security consultant, Sarnacki lived about 19 months after diagnosis, which is shorter than the typical prognosis.
His symptoms began with leg cramps in fall 2017 and foot drop in early 2018. A feeding tube was placed in 2019, as it became necessary early in his illness, Taylor said. He also took Radicava and Riluzole, the two previously approved drugs, for his ALS. “We were both incredulous that, so many years after Lou Gehrig’s own diagnosis, there were so few treatments available,” she said.
The dearth of successful treatments for ALS is “certainly not for lack of trying,” said Karen Raley Steffens, a registered nurse and ALS support services coordinator at the Les Turner ALS Foundation in Skokie, Ill. “There are thousands of researchers and scientists all over the world working tirelessly to try to develop treatments for ALS.”
Unfortunately, she added, research takes time and exorbitant amounts of funding, while bureaucratic challenges persist. The rare disease also manifests and progresses in many different ways, so many treatments are needed.
As of 2017, the Centers for Disease Control and Prevention estimated that more than 31,000 people in the U.S. live with ALS, and an average of 5,000 people are newly diagnosed every year. It is slightly more common in men than women. Most people are diagnosed between the ages of 55 and 75.
Most cases of ALS are sporadic, meaning that doctors don’t know the cause. There is about a one-year interval between symptom onset and an ALS diagnosis for most patients, so many motor neurons are lost by the time individuals can enroll in a clinical trial, said Richard Bedlack, professor of neurology and director of the Duke ALS Clinic in Durham, North Carolina.
Bedlack found the new drug, Relyvrio, to be “very promising,” which is why he testified to the FDA in favor of approval. (He’s a consultant and disease state speaker for multiple companies including Amylyx, manufacturer of Relyvrio.)
The “drug has different mechanisms of action than the currently approved treatments,” Bedlack said. He added that, when Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months. “It is not a cure, but it is definitely a step forward.”
T. Scott Diesing, a neurohospitalist and director of general neurology at the University of Nebraska Medical Center in Omaha, said he hopes the drug is “as good as people anticipated it should be, because there are not too many options for these patients.”
"FDA went out on a limb in approving Relyvrio based on limited results from a small trial while a larger study remains in progress," said Florian P. Thomas, co-director of the ALS Center at Hackensack University Medical Center and the Meridian School of Medicine. "While it is definitely promising, clearly, the last word on this drug has not been spoken."
So far, Rouse's voice is holding up, but he knows the day will come when ALS will steal that and much more from him.
ALS is 100 percent fatal, with some patients dying as soon as a year after diagnosis. A few have lasted as long as 15 years, but those are the exceptions, Diesing said.
“If this drug can provide even months of additional life, or would maintain quality of life, that’s a big deal,” he noted, adding that “the patients are saying, ‘I know it’s not proven conclusively, but what do we have to lose?’ So, they would like to try it while additional studies are ongoing.” The drug has already been conditionally approved in Canada.
As his disease progresses, Rouse hopes to get a speech-to-text voice-generating computer that he can control with his eyes. So far, his voice is holding up, but he knows the day will come when ALS will steal that and much more from him. He works at I AM ALS, a patient-led community, and six of his friends have already died of the disease.
“Every time I lose a friend to ALS, I grieve and am sad but I resolve myself to keep working harder for them, myself and others,” Rouse said. “People living with ALS find great purpose in life advocating and trying to make a difference.”
The Friday Five covers important stories in health and science research that you may have missed - usually over the previous week, but today's episode is a lookback on important studies over the month of September.
Most recently, on September 27, pharmaceuticals Biogen and Eisai announced that a clinical trial showed their drug, lecanemab, can slow the rate of Alzheimer's disease. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend and the new month.
This Friday Five episode covers the following studies published and announced over the past month:
- A new drug is shown to slow the rate of Alzheimer's disease
- The need for speed if you want to reduce your risk of dementia
- How to refreeze the north and south poles
- Ancient wisdom about Neti pots could pay off for Covid
- Two women, one man and a baby