Chief Executive, International Children’s Palliative Care Network (ICPCN); Honorary Professor, Makerere University, Kampala.
The issue of assisted dying and euthanasia is one that is not going to go away. The practice is already legal in several countries and is being widely discussed within health care, including at a recent debate during the World Cancer Congress on “Should medical aid in dying be legal and available for all cancer patients in all countries?”1 Patient/individual choice is an important concept for us in palliative care, along with parental choice for children with life-limiting and life-threatening conditions. While many decisions that we make are hard ones, introducing decisions about assisted dying/euthanasia adds a greater and even more complex challenge for individuals, parents, and health professionals alike.
In 2021 in the UK, a country where all forms of assisted dying are illegal, the British Medical Association members voted to adopt a neutral stance.2 This decision was based on the assumption that any legalized dying is only accessible for adults that meet certain criteria. Countries legalizing assisted suicide or euthanasia have different regulations surrounding their use; some allow one, others allow both. For the majority, legislation applies to adults who are able to give informed consent, however in a few countries—such as the Netherlands and Belgium—it includes children, and parental consent is required. Regulations vary, and as more and more countries debate the options, it is important to hear the views and thoughts of palliative care colleagues, as per the IAHPC survey.
In 2014, the International Children’s Palliative Care Network (ICPCN) agreed upon the Mumbai Declaration, which states that ICPCN believes that euthanasia is not part of children’s palliative care, is not an alternative to palliative care, and it is imperative that we work together to improve access to children’s palliative care around the world.
Reading the findings of the IAHPC survey made me think about the issues raised: too many to report on here but, in particular, how the debates on assisted dying practices impacts a country’s development of palliative care. While 51% of respondents felt that such debates helped palliative care by bringing it up as a topic in the discussions, 61% felt that this can confuse the public and decision makers by blurring the distinctions between palliative care, assisted suicide, and euthanasia, and 40% felt that these discussions hinder development by removing the focus from palliative care. I tend to agree with the latter two; if we go along the road of saying that improved access to palliative care eliminates the need for assisted suicide or euthanasia, we are on dangerous ground. I believe that every individual, child or adult, has the right to access to palliative care, full stop.
That access is not dependent on other conditions: all should have access, and in discussions with friends and colleagues, linking the arguments for and against assisted suicide and euthanasia with palliative care is confusing and not helpful. I do, however, also believe that we should be involved in the discussions, and that we should be able to state the case for palliative care, a point highlighted in the survey. That is why in 2016, at our conference in Argentina, we included a debate on decision-making at the end of life, including euthanasia and assisted suicide,3 despite some opposition to the debate. While assisted suicide and euthanasia is contentious in adults, it is even more contentious and complex in children. It raises complex ethical and legal issues, alongside emotional challenges for both parents and those involved in a child’s care.
This will remain a challenging issue, and as we talk to a global audience of health professionals we will get differing views. However, I believe that we must never stop advocating for equitable access to palliative care for all.
Julia Downing has spent 20 of her last 30 years in palliative care working in Uganda, Africa, Eastern Europe, and globally to develop palliative care services for adults and children.