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Response to children’s euthanasia in Belgium

Author: Joan Marston, ICPCN
16 January 2014

Belgium recently became the first country to allow euthanasia for incurably ill children, after the upper house of the Belgian Parliament voted by a large majority in December last year to extend to minors a 2002 law legalising the practice for adults. Joan Marston, Chief Executive of the International Children’s Palliative Care Network, comments on this development.

Euthanasia for adults has been legally available in Belgium since 2002. The decision of the Belgian Senate to extend euthanasia to children, with the consent of the child and parents, and without any age limit, has led to fierce argument both for and against the new law.

We understand euthanasia to be the deliberate killing of a person by a physician at that person’s voluntary and competent request. This takes place after extensive exploration of the issue to ensure the patient understands euthanasia, and is experiencing suffering that cannot be relieved by good clinical and palliative care.

Those arguing for euthanasia speak of the child’s right to take decisions regarding their own life, the wish for a “good death”, and that many of these children facing chronic and incurable illness are often mature beyond their years.

Belgium is a signatory to the UN Convention on the Rights of the Child (UNCRC) and therefore has an obligation to respect these rights for the protection of all children without exclusion (Article 2). Adults and governments must always act in the best interest of the child (Article 3). Children have the right to life, survival and development (Article 6) and adults should respect the opinion of the child, depending on the level of maturity, but do not have to act on that opinion of it is not in the best interest of the child (Article 12).

At this stage we do not know all the procedures that will be put into place in Belgium before this is implemented, but from a palliative care viewpoint, which neither hastens nor postpones death, there are a number of issues we would query.

Our first concern would be the competence of the child to both understand the consequences of euthanasia, and to choose death over the benefits of good palliative care. While many of these children are more mature, many are not and rely on their parents to help them take important decisions - and an understanding of death is a concept that many adults grapple with. Would the suffering of the parents- including the emotional suffering and the often physical exhaustion of providing care for a chronically ill child- influence the child’s wish to relieve that suffering by ending their own life? Guilt is a common emotion amongst parents who have a child with a life-threatening condition; would allowing their child to be euthanized not increase those feelings of guilt and intensify their grief in bereavement? What are the plans for long-term bereavement support for these families?

We have scientific evidence that good palliative pain and symptom management, by professionals trained and experienced in paediatric palliative care, using the correct medications including opioids, as well as non-pharmacological interventions such as hypnosis, play, massage and distraction therapy, relieves suffering caused by pain and other distressing symptoms in children. The holistic palliative care and support team works with the child and family to help relieve emotional and spiritual distress; and children are encouraged to play, learn and develop to the best of their ability. Compassionate palliative care in the hospital, continued by palliative care and support in the home, all provided by professionals and lay volunteers trained in palliative care for children, would provide a continuum of care for these children and families.

A recent Delphi study carried out by the International Children’s Palliative Care Network highlighted the need for more research into speaking to children about illness and death, an area that many professionals say they do not feel comfortable to do. Improving communication skills in this area, so that children feel their emotions, fears and concerns are heard and respected, is essential and can be learned.

Advanced care planning, that includes the family, the child where possible, and the professionals providing care in the hospital and the home, would both anticipate and provide early treatment of pain and distressing symptoms – physical, spiritual and emotional.

As paediatric palliative care advocates and practitioners, we would urge the Belgian government to put more resources into training all health care professionals in paediatric palliative care; providing children’s hospices and home care programmes throughout the country to continue care in the communities; carry out a national situational analysis to identify the need for palliative care for children; and to make palliative care for infants, children and young people part of national health policy with sufficient funding to meet their needs.

The answer to suffering in children facing incurable and life-limiting illness is not euthanasia but rather high quality, compassionate palliative care.

The WPCA position statement of Euthanasia can be found online

This article was first published in the International edition of ehospice.

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