A BBC report published on 17 September announced that for the first time since the lifting of the age restrictions for euthanasia in 2014, a 17-year-old child has been helped to die in Belgium.
Belgium is the only country that allows minors of any age to choose to die in this manner, with the neighbouring Netherlands allowing children over the age of 12 years to make this same decision. Before consent is given in either country, it needs to be established that the child has the capacity to make rational decisions and is in the final stages of a terminal illness. Parents of any child under the age of 18 years must also give their consent.
According to the head of the federal euthanasia commission, Wim Distelmans, the almost 18-year-old teenager had been “suffering unbearable physical pain.” He said that the doctors had used “palliative sedation”, involving putting the patient into an induced coma, as part of the process.
He went on to say, “there is fortunately very few children that come into consideration, but that does not mean we should deny them the right to a dignified death.”
Response from the palliative care community
Responding to the news, Joan Marston, Chief Executive of the International Children’s Palliative Care Network (ICPCN) writes that she was saddened to read of the first young person to undergo euthanasia in Belgium.
She continues, “As the ICPCN we have taken a stand against the law in Belgium and on euthanasia in children. We have produced the Declaration of Mumbai and believe that euthanasia is not, and cannot be, part of palliative care.”
This declaration reads in part: “We believe that euthanasia is not part of children’s palliative care and is not an alternative to palliative care. It is imperative that we work together to improve access to children’s palliative care around the world, including ensuring access to appropriate pain and symptom control.
We call on all governments to transform children’s lives through the development of children’s palliative care, and in particular we urge the Belgian government to reconsider their recent decision to allow euthanasia of children.”
Joan Marston concludes that what is needed is “much more government commitment, funding and education to ensure every child and adult has access to palliative care and pain management, provided by skilled practitioners.”
The ICPCN has published a position statement on the practice of euthanasia and assisted suicide, which states that the aim of children’s palliative care is to enable the child to live a life of maximum quality by preventing and relieving suffering and that enabling good quality of life cannot include hastening death. The ICPCN does not believe that euthanasia or physician-assisted suicide is a part of children’s palliative care.
The statement acknowledges and clarifies certain aspects, including:
- Even with the best support palliative care can offer the suffering of children and their families may not be relieved at all times.
- There are significant deficits in providing palliative care for children with life-limiting and life-threatening conditions around the world.
- Calls for reform programmes around the world to strengthen end of life care by remedying shortages in the palliative care workforce, ensuring access to appropriate medications and resources.
- Calls for good practice which requires that the ethical principles of beneficence and non-maleficence should be followed at all times.
- Believes that medical interventions are only permissible when their benefit to the patient outweighs their harm and that withholding or withdrawing interventions causing more harm than benefit does not constitute euthanasia.
- States that the unintended death of a child as a consequence of an appropriately prescribed intervention to provide comfort for a distressing symptom, even when death is a possible outcome from that intervention, is not euthanasia.
- Believes that sedation that becomes necessary for management of distress caused by refractory symptoms (‘palliative sedation’) is not euthanasia.
Many requests for euthanasia or assisted suicide are made in order to draw attention to specific causes of emotional distress and despair. The ICPCN believes that these can often be reversed with appropriate support. Such requests should be acknowledged with respect and be extensively explored in order to understand, appropriately address and, if possible, remedy the underlying difficulties that gave rise to the request.
Interview with Dr Richard Hain
In an interview last year with Dr Richard Hain, Consultant and Lead Clinician in Paediatric Palliative Medicine in Wales and well known for his work in ethics, the ICPCN asked what the palliative care community should be doing to promote the belief that euthanasia has no part to play in palliative care. He responded as follows:
“I think we do need to be more proactive. Dr Friedel-Castorini made the point that people who support euthanasia usually do so because they honestly believe such a change in the law is the most compassionate way of dealing with dying patients. If we believe (as I do) that that is not true, we need to explain why. We need to explain that there are better ways of caring for the dying.
“We might need to point out… that even if a change in the law were to benefit a few people (which seems likely), that benefit is overwhelmed by the danger of making it legal to take someone’s life on the grounds, simply that they have a terminal illness.
“We can do that explaining through making rational arguments, or through evidence that shows how well alternatives can work, or (perhaps the easiest and most effective of all) expressing our concerns to our representatives in parliament.”
You may wish to read and download the ICPCN Declaration of Mumbai and the ICPCN Position Paper on the Practice of Euthanasia and Assisted Suicide from the ICPCN website.