ALS patient seeks euthanasia option as initiative stalls

Esa Ukkola, who has ALS, wants euthanasia to be available as an option for people facing a difficult death. A citizens’ initiative to legalise euthanasia has been stalled in Finland’s Social Affairs and Health Committee since spring 2024, Yle reports.

Ukkola was diagnosed with ALS last year. People with the disease live an average of 3.5 years after diagnosis. He fears gradually losing his ability to speak and swallow: his speech has already become less clear, and swallowing has become more difficult in a short time.

Once able to run marathons, Ukkola now needs daily assistance, including help to put a blanket over his shoulders. He can live until his muscles weaken to the point that his breathing muscles stop working. Another option would be to stop eating and refuse feeding through a tube.

Ukkola would like euthanasia to be an alternative, allowing a person to receive help to die through healthcare. He says he knows seriously ill people who have died by suicide. One person he knew died recently after being able to eat only chocolate ice cream during their final two weeks.

Some opponents of euthanasia argue that Finland should instead improve palliative and end-of-life care. In a Finnish Medical Association survey, slightly more than half of working-age doctors said euthanasia was unnecessary if patients received adequate palliative care and pain relief.

This autumn, Parliament approved a change requiring wellbeing services counties to provide palliative care and end-of-life care for patients with incurable illnesses. Under the care currently available to Ukkola, medication could be used to put him to sleep when death appears near. He says that differs from euthanasia because he would not be able to say goodbye and choose the moment of his death.

A previous citizens’ initiative to legalise euthanasia was submitted to Parliament in 2018 and rejected. Parliament did, however, call for an expert group to examine end-of-life care. A new initiative was submitted in spring 2024 and has since remained in the Social Affairs and Health Committee.

Committee chair Krista Kiuru of the Social Democratic Party said members aim to consider the initiative before Christmas. If Parliament does not handle it before the autumn session ends, it will lapse. Kiuru acknowledged that the process had taken too long, calling the committee’s handling of the matter a low point. She said government proposals had been given priority over citizens’ initiatives.

Most Finns support euthanasia, according to a Yle survey conducted two years ago, but the issue divides members of Parliament.