For two decades, Belgium law has permitted euthanasia. Euthanasia is similar to medical aid in dying, with one big caveat: US medical aid-in-dying laws require people to self-administer the life-ending drugs, while laws in Belgium permit a doctor to administer the life-ending drug. The hands-on administration of the drug by a physician is what differentiates the death as euthanasia.
In both countries, patients who meet the criteria can decide when they want to die. While Belgian laws differ from US laws in several respects, if a person wants to take advantage of the laws to end his or her life, it turns out the paperwork and red tape are similar in both countries.
A friend forwarded a link to a podcast produced by the New York Times that tells the story of Marieke Vervoort, a Belgian paralympic champion with a progressive degenerative spine condition. Linsey Addario, a photojournalist, spent almost three years documenting the story of Marieke’s life, her struggles and her desire to end her life using euthanasia.
Marieke had won four paralympic medals and held records in several sports. But in 2016, she held a press conference where she announced she was retiring from professional sports. She had begun filling out the paperwork to apply for euthanasia in 2008, when she was still enjoying life. She decided that when the day came when she had more bad days than good, she would be ready to submit her paperwork.
As her spinal disease progressed, sleep eluded her and she needed around-the-clock care. As she lost control of her hands and suffered from increasing pain, she decided she was ready. She was afraid of losing even more control. But to complete the paperwork, Marieke needed to choose a date and a time and get several doctors, including a psychiatrist, to sign off on her application.
Choosing a date was not an easy task, but ultimately, she decided to wait until just after her mother’s birthday. But as she got closer to choosing an exact day and time, her mother collapsed and ended up in a coma in intensive care. Marieke felt it would be unfair to her mother if she chose to die while she was unconscious. Marieke stopped talking about ending her life for a while, until the following fall when her mother had finally fully recovered.
As she contemplated a new date, Marieke decided she didn’t want to celebrate her own 40th birthday, so she picked a date in early May, before her birthday. But she underestimated the time it would take to arrange all the appointments she needed to get the sign-offs on her paperwork. Because of her disability, she didn’t have an easy way to get back and forth to the hospital for the appointments, and she had neglected to take into account that many medical professionals in Belgium took Easter vacations. Easter fell in late April that year. She was frustrated and unhappy that she lived to turn 40.
The next date Marieke chose was at the end of September. She got the signatures she needed, but shortly before the date arrived, she was rushed to the hospital with sepsis, a serious systemic infection. Much to her frustration, she had to be cured first, before she could be sent home to die. So she missed the September date she had set.
Once again, Marieke choose a new date to die, this time October 22. She had a going away party beforehand, and about 20 people came to say good-bye. Her euthanasia doctors showed up at 7:00 p.m., as Marieke had requested. The doctors wheeled her down the hall to her bedroom, where her parents came in for a private goodbye.
The doctors injected medications through a catheter in her neck. The end came quickly, if you don’t count all the times before when she had wanted to die and couldn’t make it happen.
Marieke’s story makes clear how difficult it is to decide when to die and how frustrating it is to try to jump through all the hoops required when you have disabilities that interfere with getting where you need to go. Even though Marieke’s saga was about a different construct – euthanasia, not medical aid in dying – people in the US face the same issues with medical aid in dying. The bureaucratic process – the paperwork, the appointments, the approvals – are all necessary to safeguard against abuse – but they make the process incredibly difficult for people who are already suffering.
How can we improve the approval process? I would love to hear from others, both in the US and abroad. Did you or you loved one face these issues? If so, how did you deal with them? What advice would you give others?
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