Omar and Cissy Dekker recount the nearly four years their daughter, Iris, spent on a waiting list for euthanasia in the Netherlands. Iris, who was 13 when she developed severe depression and a functional neurological disorder (FND), faced years of debilitating symptoms that included chronic headaches and, after a seizure, an inability to walk for two years.
Following two suicide attempts and repeated hospitalizations, Iris, experiencing relentless mental anguish, made the decision to pursue euthanasia. However, after years of treatments that offered no relief and seeing her condition worsen, she opted for a different legal route: voluntary stopping of eating and drinking (VSED).
Iris died on March 1 of this year, five days before her 20th birthday. Her parents, both trained nurses, have shared their daughter's story, detailing her vibrant curiosity as a child and the drastic shift in her life at age 13 when debilitating panic attacks began. The severe stress and depression affected her brain, leading to a seizure that confined her to a wheelchair.
"She started spending more time in her bedroom," Omar recalled, describing a period of withdrawal and sleep disturbances. The family's life became centered around Iris's 24-hour care, placing a significant strain on their relationship. At 15, Iris attempted suicide twice within a few months, first by hanging and then by slitting her wrists, experiences that profoundly impacted the family.
Iris described her state as being in a "black hole," devoid of feelings, with each hour feeling like four or five. A week after her second suicide attempt, she first expressed a desire for euthanasia to her psychologist. Initially shocked, her mother, Cissy, came to understand that it could be a way to keep Iris safe from further suicide attempts. Her father, Omar, saw it as a potential window for treatment while acknowledging the long road before euthanasia could be considered.
At 16, Iris applied for euthanasia. Under Dutch law, individuals aged 16 and older can request euthanasia, though parental consent is not strictly required, consultation is mandated. Before approval, extensive treatment is necessary to assess if suffering can be alleviated. Iris was referred to the Erasmus University Medical Centre for psychotherapy and trials of multiple medications, but her condition did not improve. Even electroconvulsive therapy (ECT) proved unsuccessful.
After ECT failed, Omar took Iris to Scotland, hoping a change of scenery might help. However, after two weeks, Iris informed her father that she had made her decision and no longer wished to try further treatments, stating, "I just want to die. I don't want to experience another summer. I don't want to reach my 20th birthday."
While still on the euthanasia waiting list, Iris began researching alternative legal options and discovered VSED. This process involves a patient voluntarily ceasing food and fluid intake under medical supervision. Omar expressed initial shock at the method, fearing a difficult death, but eventually supported Iris's choice, though he harbored a hope that the struggle might reignite her will to live.
Once the VSED process was approved and a hospice agreed to admit Iris, she reportedly regained a sense of relief and peace, knowing her end was in sight. The family spent her final weeks together, engaging in deep conversations and cherishing moments of connection, including hugs the parents had not received in years. Iris also experienced a surprising fondness for apple juice during this time.
Iris outlined two final wishes for her father: to share her story and for him to "keep living and not be sad for the rest of my life." In her final days, she enjoyed a moment looking at the stars with her mother. After 14 days without food or water, Iris was placed on palliative sedation. She passed away on March 1, with her parents beside her, listening to Frank Sinatra's "Come Fly With Me."
Omar and Cissy described her death as peaceful, with a smile on her face, noting the absence of any signs of struggle. The couple later visited Scotland, a place Iris had enjoyed, where Omar allowed himself to grieve. He also noted a change in their home environment, with the constant tension of worrying about Iris's safety replaced by a different atmosphere, and a renewed closeness between them.
Omar also raised concerns about the euthanasia clinic not being automatically informed of a patient's death, potentially leading to distressing calls to grieving families. He believes the process for severe psychiatric illness, which can be as debilitating as physical disease, requires more nuanced societal discussion regarding end-of-life choices.
Iris was buried on her 20th birthday, March 6. She had meticulously planned her own funeral. Guests at the service left small boxes of apple juice by her grave. On her funeral card, Iris left a message for loved ones, urging them to "be kind, love one another, care for each other, and always be honest."