Article Text
Statistics from Altmetric.com
In their interesting paper in this issue, De Vos et al1 consider the ethical issues when parents want treatment for their child to be withdrawn against the recommendations of the medical team. They discuss whether or not such end-of-life decisions should be shared with parents and whether or not physicians should protect parents from guilt or doubt in decision-making. De Vos et al1 conclude that the parents should be involved in decision-making, that it is not appropriate to exclude them from decision-making in order to protect them and that it should be hard to overrule parents’ decisions about terminating treatment. I should make it clear that they mean life-prolonging invasive treatment; they are not proposing euthanasia.
I agree wholeheartedly with De Vos et al about the need to involve parents and to be reluctant to overrule their wishes and I agree strongly that the continuity provided by having a single physician leading discussion, if possible, is invaluable. I would even state the case for parental primacy in decision-making more strongly. I attended an ethics meeting at which a panel of doctors demonstrated how they would assess a situation where doctors were debating late termination of a pregnancy involving a child with congenital malformations. The New York ethicist Nancy Dubler commented heatedly, “How dare you decide what will happen to this woman's baby?” Her comment brought …
Footnotes
-
Competing interests None.
-
Provenance and peer review Commissioned; internally peer reviewed.
Linked Articles
- Editorial
- Viewpoint
- The concise argument
Read the full text or download the PDF:
Other content recommended for you
- Outcome of goal-directed non-invasive ventilation and mechanical insufflation/exsufflation in spinal muscular atrophy type I
- Effect of nusinersen on respiratory function in paediatric spinal muscular atrophy types 1–3
- Nusinersen for SMA: expanded access programme
- British Thoracic Society guideline for respiratory management of children with neuromuscular weakness
- Healthcare utilisation in children with SMA type 1 treated with nusinersen: a single centre retrospective review
- The best interests test at the end of life on PICU: a plea for a family centred approach
- Protocol for a phase II, monocentre, double-blind, placebo-controlled, cross-over trial to assess efficacy of pyridostigmine in patients with spinal muscular atrophy types 2–4 (SPACE trial)
- Infantile spinal muscular atrophy variant with congenital fractures in a female neonate: evidence for autosomal recessive inheritance
- Spinal muscular atrophy: untangling the knot?
- Association of motor milestones, SMN2 copy and outcome in spinal muscular atrophy types 0–4