What could help me to die? Doctors clash over euthanasia
By MARIA CHENG
Oct. 26, 2017
GHENT, Belgium (AP) — After struggling with mental illness for years, Cornelia Geerts was so desperate to die that she asked her psychiatrist to kill her.
Her sister worried that her judgment was compromised. The 59-year-old was taking more than 20 pills every day, including antidepressants, an opioid, a tranquilizer, and two medicines often used to treat bipolar disorder and schizophrenia.
About a year later, on October 7, 2014, her doctor administered a lethal dose of drugs. It was all legal procedure in Belgium, which has among the world's most permissive euthanasia laws.
"I know it was Cornelia's wish, but I said to the psychiatrist that it was a shame that someone in treatment for years could just be brought to the other side with a simple injection," said her sister, Adriana Geerts.
Belgium is one of five countries that allow doctors to kill patients at their request, and one of two, along with the Netherlands, that grant the procedure for people with mental illness. The idea is that those with a psychiatric illness should be afforded the same rights as those suffering from a physical one.
"I always regret that we couldn't do something else," said Dr. Lieve Thienpont, one of the doctors who signed off on Geerts' death. "At the same time, I'm part of the relief for the patient."
Like many in Belgium and elsewhere, Thienpont, a respected psychiatrist and prominent euthanasia advocate, believes that when medicine can't relieve suffering, euthanasia — when doctors actively kill patients — should be an option. And because psychological suffering can be harder to detect, doctors must take patients at their word.
"You can't see it on a scan," she said. "But we have to listen to the patient. We have to believe them because we can't see (the suffering) always."
Cases like Geerts and others have shown, though, how difficult it can be to strike a balance between respecting personal freedom and ensuring that people requesting euthanasia have the mental capacity to make that decision. Many, including Geerts' sister Adriana, think society should try harder to help struggling people with issues they face in jobs and relationships.
Thienpont's approach to managing euthanasia requests has raised concerns even among doctors who support the procedure for psychological suffering. According to copies of letters obtained by The Associated Press, those worries have led to a clash between Thienpont and Dr. Wim Distelmans, chairman of Belgium's euthanasia review commission, that has not been publicly disclosed.
The documents do not include accusations that patients were killed who shouldn't have been, but they suggest doctors may have failed to meet certain legal requirements in some cases. And they highlight how difficult it can be to judge whose pain should end in death.
Distelmans did not respond to requests by email and telephone for an interview. Thienpont described receiving Distelmans' letter in February as "a very difficult moment" and said that she and members of Distelmans' team were still working out how to resolve what she called "internal issues."
In the countries where euthanasia is legal — Belgium, Canada, Colombia, Luxembourg and the Netherlands — the vast majority of cases are people with a fatal illness such as cancer who have only weeks or months to live.
To qualify for euthanasia in Belgium, people must meet a number of criteria, including proving they have "unbearable and untreatable" suffering. Among adults whose lives are ended for psychiatric reasons, the most common conditions are depression, personality disorder and Asperger's syndrome, a mild form of autism. People diagnosed with early-stage dementia can also request euthanasia, including for the future.
Euthanasia is not permitted in the U.S., but six states and Washington D.C. allow assisted suicide, where doctors provide people with the means to kill themselves, such as a deadly dose of medication. Patients must be terminally ill and the procedure is forbidden for psychiatric patients.
As these procedures are slowly becoming more accepted, and in some places where they are already allowed, boundaries are being stretched even further.
In 2014, Belgium became the first country in the world to expand its original euthanasia law by explicitly allowing it for children, although this cannot be for psychological suffering. The Netherlands, the first country to legalize euthanasia, has proposed extending euthanasia to old, healthy people who feel they have "completed" their lives. Canada, which passed its euthanasia law last year, is facing legal challenges designed to expand access to the procedure.
The number of people killed for psychological suffering is small — about 40 cases among Belgium's 2,000 yearly euthanasia deaths. But that's more than some experts predicted. In 2008, when euthanasia for psychiatric disorders was first broken out, four people were euthanized for psychiatric disorders. By 2015, the latest year for which data are available, that figure was 43.
"WHAT COULD HELP ME TO DIE?"
As more countries grapple with whether to legalize assisted dying, Thienpont argues they needn't worry about setting limits on who should be eligible for euthanasia, because only the truly desperate will ask to die.
"You don't have to be afraid," she said.
One of Thienpont's patients, Amy De Schutter, says approving euthanasia for psychiatric patients can save lives.
"We want to live," said De Schutter, whose request for euthanasia was granted last year, though she didn't set an immediate date to die.
De Schutter says she endured years of failed treatment at psychiatric institutions and spent months deliberating how to kill herself. A trained physicist, she calculated the time it would take for an overdose to kick in, considered which bridge she might jump from and listed ways to kill herself in PowerPoint presentations.
De Schutter had already picked the day of her suicide, but one month before her intended death last year, her euthanasia request was accepted. Once she had been given clearance to legally die at home, she was relieved she wouldn't have to kill herself. That was comforting enough to her that she didn't set an immediate date for her euthanasia and has even drawn up a list of things she'd like to do in the meantime.
"It felt like 10,000 kilos was just (lifted)," De Schutter said. She says if she hadn't been in a country where euthanasia was legal, she would have resorted to suicide by now.
Pierre Pol Vincke wishes his daughter Edith could have gotten that same relief — and perhaps continued to live. "She said, 'Dad, you understand science, what could help me to die?" said Vincke, a biologist and amateur beekeeper in his garden in Ramillies, Belgium. "I said, as a father, I can't do that."
Doctors refused her euthanasia request, despite years of psychiatric illness. On November 3, 2011, Edith slashed her throat.
Jean-Jacques De Gucht, a Belgian lawmaker who co-sponsored the amendment that made the procedure available to children, says the law enhances personal freedom and that criticism of the country's euthanasia policies are misguided.
"I think one of the greatest gifts you can give to society is to give people the possibility to choose for themselves if they're in a situation where they're suffering every day, to choose for themselves how to cope with that pain," he said.
"WE MUST TRY TO STOP THESE PEOPLE"
Sophie Nys believes her sister's euthanasia was granted far too easily. She acknowledges that her sister Tine had long struggled with mental health problems, but said it was unthinkable that those problems warranted her death. Tine's longtime psychiatrist rejected her request to die, but Tine soon found Thienpont.
Sophie Nys says that Thienpont diagnosed Tine with Asperger's and approved her euthanasia request after two or three sessions with Thienpont. Because Asperger's is "incurable and chronic," it meets one of the legal requirements for euthanasia. Sophie said her sister was so intent on being euthanized she might have manipulated the test.
"She knew that if she wasn't diagnosed with autism or Asperger's that she would not have a chance (of being euthanized)," she said. Two months after her diagnosis with Asperger's, Nys was killed, at age 38.
After Nys' death, her sister Sophie filed a criminal complaint, alleging irregularities in her sister's euthanasia procedure, including fumbling efforts to administer drugs and asking her family to confirm that Tine's heart had stopped.
Nys later obtained access to her sister's medical file and found emails between her sister's doctors attempting to block the investigation into Tine's death.
"We must try to stop these people," Thienpont wrote in one email to her colleagues that was provided to the AP. "It is a seriously dysfunctional, wounded, traumatized family with very little empathy and respect for others," the message read. "I am starting to better understand Tine's suffering."
The criminal complaint against Thienpont and the other doctors involved in Tine Nys' death was dismissed last year. The Nys family is appealing the decision. Others who knew Tine Nys have suggested the family's account is not reliable because they were estranged, and that she was convinced only death would alleviate her misery.
Thienpont declined to comment on the Nys case, citing medical confidentiality.
"YOUR EUTHANASIA CASES WILL NOT BE TREATED ANYMORE"
Thienpont's readiness to grant euthanasia to mental health patients has made some of her own colleagues uncomfortable.
In 2015, Thienpont was the lead author of a paper published in the medical journal BMJ Open, tracking 100 of her patients who requested euthanasia between 2007 and 2011. Of those, 48 were granted.
Some doctors were stunned by the high number of requests Thienpont fielded and how many were approved. At some other major psychiatric centers in Belgium, doctors receive only a handful of such requests every year, of which perhaps about 10 to 30 percent are accepted, according to several psychiatrists who deal with such requests.
"That one single psychiatrist in Belgium has had such a major impact on the practice of euthanasia in psychiatric patients is very alarming," said Dr. Stephan Claes, a psychiatrist at the University of Leuven.
Thienpont disputed that characterization, adding that she was not the only psychiatrist signing off on patients' requests and that her numbers were not unusual.
But some colleagues, including some of the most prominent euthanasia practitioners in Belgium, have refused to accept her patients.
Distelmans, a cancer doctor who chairs the euthanasia commission and helped found the clinics known as "End of Life Information Forum," known by their Flemish acronym, LEIF, has administered the fatal injection to some of Belgium's most high-profile cases, including a man who had a bungled sex change and deaf twins, aged 45, who were going blind.
He and Thienpont had a long history of collaboration, with Thienpont's Ghent-based organization, Vonkel, referring patients to his LEIF clinics.
But earlier this year, Distelmans and colleagues sent Thienpont a letter that raised concern that some patients may have been killed without meeting a legal requirement that an independent consultation be performed first.
"Your euthanasia cases will not be treated anymore within our operation," Distelmans and colleagues wrote in a February 13 letter. "The reason is a difference of opinion on how a request for euthanasia must be approved. We have already communicated this several times orally, but to no avail."
Thienpont said the letter raised problems only about how patients were referred, not how she and colleagues were practicing euthanasia, and that Distelmans told her after the letter was sent that he has no concerns about her euthanasia process. She says she has never once received a request from the euthanasia commission to provide more details about her cases.
Thienpont also blamed the patients for not describing events accurately.
"These patients are very desperate, stressed," she said. "They say things that are not always correct."
Belgium requires that people seeking euthanasia for psychiatric reasons receive an independent consultation from at least two other doctors in addition to the one who approved the procedure. The doctors don't have to agree; the law requires only that the objective assessments be sought.
Despite that latitude, Distelmans complained that Thienpont's patients were arriving at his clinic with "unrealistic expectations," presuming that their euthanasia request would automatically be approved. That, he said, made conducting an independent assessment — a statutory requirement — unworkable.
"We found several times that you had already made promises to patients that were referred to us," they wrote, and that such "promises" undermined their own attempts to engage with patients and figure out if euthanasia was justifiable. "We want to distance ourselves from this way of working."
Penney Lewis, co-director of the Centre of Medical Law and Ethics at King's College London, said that Distelmans' objections to Thienpont's practice, given his role as chair of the national euthanasia commission, were particularly serious.
"He is someone who is well-versed in reviewing cases to make decisions," she said. "If he's saying, 'I think there's a concern about one of the legal criteria in your practice,' that carries much greater weight than if it were just another consultant doctor saying that."
"A NEED TO BE STRICTER"
Support for euthanasia, including for psychiatric patients, remains high in Belgium. And the country's public health minister, Maggie De Block, is a euthanasia advocate who once helped raise money for Distelmans' clinics.
But the Nys case and others like it have led some critics to a push for more exacting oversight and tougher approval procedures.
An increasing number of psychiatrists say the vague provisions of the law give individual doctors too much discretion and believe more rigorous oversight is needed to protect patients.
Other experts are troubled by the lack of transparency in Belgium. There is one review commission in Belgium and they release little information about cases. In the Netherlands, there are five committees and they release detailed accounts of controversial cases. Since 2002, only one case in Belgium has been referred to prosecutors for further investigation.
Fernand Keuleneer, who sat on the Belgian national euthanasia commission, said the system is not designed to protect patients in part because cases are only reviewed after their deaths.
The Flemish Psychiatric Association is now drafting new guidelines, including a requirement that all proven treatments be tried before considering euthanasia.
"There's a need to be stricter because now we see that sometimes euthanasia is granted too quickly, too easily, without enough checks and balances," said Dr. Joris Vandenberghe, a psychiatrist at the University of Leuven, who is working on the guidance. They resemble those already being used in the Netherlands, and are set to be presented in December.
"I'm convinced that in Belgium, people have died where there were still treatment options and where there was still a chance for years and even decades of (quality) life," Vandenberghe said.
"I WISH THERE HAD BEEN ANOTHER WAY"
Doctors say that balancing the finality of euthanasia with the often treatable and sometimes fleeting nature of many psychiatric illnesses is extraordinarily difficult.
"These are patients who are easily misunderstood because of the disorders they have," said Dr. Scott Kim, a bioethics expert at the U.S. National Institutes of Health. He said psychiatric patients will often express a wish to die that is transient or a symptom of their condition. "Any patient with a serious psychiatric diagnosis will be in a lot of distress and could technically meet the Belgian requirement of 'unbearable suffering' for euthanasia."
Psychiatrist Claes said he is convinced treatment options remain for many of the patients with psychological suffering being euthanized. He recalled consulting on the euthanasia request of a woman who was about 25, with issues including borderline personality disorder, self-harming behavior and mood instability.
"She told me that she already had the permission for euthanasia given by Dr. Thienpont," he said. "What was really shocking about this patient specifically was that she was very young and a number of therapeutic options had clearly not been tried out sufficiently."
But to desperate patients like De Schutter, further restricting euthanasia for psychiatric patients is a form of discrimination that infringes on her autonomy.
"I can get a loan, I can buy a car, I can (have) kids, I can buy a house (and) do everything that I want to," she said. "But if I want to end my life, all of a sudden, I can't think straight anymore? That's something strange."
For some bereaved relatives whose loved ones have been euthanized for psychological reasons, the loss is compounded by a belief that doctors should have instead done what they could to keep their patients alive.
Although Geerts disagreed with her sister's request for euthanasia, she accompanied Cornelia to the clinic that morning, in the hopes that she would change her mind.
"I think if the doctors had tried to help her more or proposed other things, she might have felt there was another solution," she said. "I wish there had been another way."
Associated Press writer Jamey Keaten in Zurich contributed to this report.