It’s not pain but ‘existential distress’ that leads people to assisted suicide, study suggests
By Ariana Eunjung Cha May 26, 2017
A few decades ago, doctor-assisted suicide was considered a fringe idea despite surveys showing many physicians supported the idea under certain circumstances. The face of euthanasia at that time was Jack Kevorkian, a Michigan pathologist nicknamed “Dr. Death.” By his own admission, he helped 130 people end their lives. He was convicted of homicide and served eight years in prison. While doctor-assisted suicide remains a polarizing issue, some countries and states have begun to accept it. Belgium, the Netherlands, Luxembourg and Switzerland have legalized voluntary euthanasia. In 2016, Canada legalized “medically assisted death.” Australia, France, South Africa and the United Kingdom are considering similar measures. In the United States in 2014, the story of Brittany Maynard — a 29-year-old California woman with a brain tumor who wanted to end her life but had to travel to Oregon to do so — led to an outpouring of support and sympathy on social media. Six states, including California, now allow some form of medical aid in dying.
Allowing assisted dying to come into the open has helped us gain insights about one of the most fundamental questions of our existence: Where do humans draw the line between choosing life and choosing death?
But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.
The study, based on information from Canada's University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig's disease.
Canada's Medical Assistance in Dying law, or MAiD, allows for adults with serious and incurable diseases in an advanced state to seek help. At the University Health Network, which operates four large hospitals, patients must go through several levels of evaluations, and if they meet the criteria, they can come to the hospital to receive a lethal medication intravenously.
For many people, death from a terminal illness may be synonymous with pain. Much of the discussion about assisted suicide focuses on compassionate palliative care for cancer patients and about suffering that can't be controlled by even the strongest opioids. But that's not what the people in the new study report.
“It's what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto. “Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.”
“It has been very surprising to me,” Li said in an interview.
One of the main things these patients bring up has to do with “autonomy.” It's a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.
One patient was a marathon runner before her cancer left her confined to bed. “That was not how she saw her identity,” Li said. Another patient, a university professor, identified his intellect as the most important quality that he values in himself: “He had a brain tumor, and he didn’t want to get to the point of losing control of his own mind, couldn’t think clearly and couldn’t be present.”
The study also provides information regarding one of the most controversial aspects of physician-assisted suicide: That it could be forced on the poor, uninsured or those worried about being a burden to their loved ones. In Canada, a requirement for being considered for MAiD is being under the national health insurance program, and most of the patients were financially well-off.
A study published in 2015 based on interviews with 159 patients or family members of deceased patients in Oregon — which allowed physicians to give prescriptions for self-administered lethal medications in 1997 — found similarly complex psychological motivations for decisions.
“These patients considered a hastened death over prolonged periods of time and repeatedly assessed the benefits and burdens of living versus dying,” researchers wrote in the Journal of General Internal Medicine. “None of the participants cited responding to bad news, such as the diagnosis of cancer, or a depressed mood as motivations for interest in hastened death. Lack of access to health care and lack of palliative care also were not mentioned as issues of concern.”
Likewise a study in the New England Journal of Medicine in 1999 about the first year of the Oregon law noted: “Many physicians reported that their patients had been decisive and independent throughout their lives or that the decision to request a lethal prescription was consistent with a long-standing belief about the importance of controlling the manner in which they died.”
Dan Diaz, Maynard's husband, said in an interview that two family friends died from brain tumors and that “their dying process was filled with pain” — losing their eyesight and having many tubes coming out of them in their final days. Maynard was already experiencing strong seizures and was frightened by them. “She wanted to avoid the pain that was coming,” Diaz said.
“For the terminally ill like Brittany, it's not a choice between not living and dying. The fact that she would die is a given. It was about the manner in which a person will die. She was literally been tortured to death. What she wanted was having the option to pass away gently,” he said.
Maynard's final Facebook post spoke to many millions around the world. She wrote: “Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”