Trends in Palliative Care Research 2022; Issue #12

Commentary by:

Sandy Thrale, RN, Canuck Place Children’s Hospice 
Sandy Thrale has been a pediatric nurse for 25 years with a focus on children with life limiting illness. She has worked in Saudi Arabia and Australia where she first became interested in pediatric palliative care. For the last 15 years, she has worked at Canuck Place Children’s Hospice in a variety roles and is currently working on my Masters in Nursing.

Feature Article: 

Marz, J. W. (2022). What does the best interests principle of the convention on the rights of the child mean for paediatric healthcare? [Review]. European Journal of Pediatrics, 181(11), 3805–3816. MEDLINE.

One of the most widely discussed principles of medical ethics and human rights in pediatric healthcare is the best interests of the child principle. It is one of the four general principles of the Convention on the Rights of the Child, a widely accepted international human rights treaty. The best interests principle has a threefold function as a substantive right, a fundamental legal principle, and a rule of procedure. The principle states that “in all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration”.

In this article, Marz offers a review of the possible areas in pediatric healthcare where the best interests principle can be applied, and discusses potential difficulties in the application of this principle. Marz goes on further to analyze and discuss implications of the best interests principle through four pediatric case studies that look at ethical dilemmas in gynecology, end-of-life care, HIV care, and genetic testing.

This article stresses the importance of respecting children’s views despite their age and their inability to make important legal decisions themselves. The United Nations Committee on the Rights of the Child emphasizes that children’s perspectives and views should not only be maintained, but should be respected and promoted as part of healthy development and well-being.

In palliative care, when there is often debate and dilemmas related to end-of-life care and decision making, this is even more paramount. In the context of pediatric palliative care, a child’s inability to act autonomously and their subsequent reliance on their parents or guardians as surrogate decision-makers can create complications and dilemmas around treatment and care. This creates ethical and moral distress to care providers and those involved in care planning when a child does not have a “voice” or decision making capacity.

A key takeaway and common theme in the article is that there is a shared responsibility between parents and families and treating healthcare professionals to ensure a child’s best interests. The writer suggests that this shared responsibility is most successful with a supporting family environment and a stable and trusted physician-patient-relationship in order to offer the child the best possible care.

However, there continues to be ethical and legal challenges to who should decide what is in a child’s best interests. While consensus between a child and family and their medical team is most desirable, it is not always possible. For example, the medical team may decide that it is not in the best interest to initiate invasive ventilation while the family may want all possible interventions to extend lifespan. Or a child may not want further chemotherapy but the family wants to continue to access clinical trials. There can be debate to the question of when a child has actually achieved sufficient competency and maturity to make independent health related decisions.

This article reflects on these ethical dilemmas and asks for action from healthcare policy makers, professionals associations, administrators and medical teams to collaboratively provide the best possible healthcare for children. While the best interests principle may not provide a solution to all ethical dilemmas, it can provide a framework for healthcare that protects and prioritizes the rights of the child. By having a better understanding of the UN Convention Rights of the Child, we can give children a voice in their care.

In my 15 years’ experience at Canuck Place Children’s Hospice as a pediatric palliative care nurse, I have observed that decision-making can be difficult and challenging. Children with chronic illness and medical complexity navigate a multitude of multidisciplinary teams, receiving information from multiple sources. They are faced with ongoing health challenges and associated losses. Children at the end of life require close collaboration and regular serious illness conversations. Making decisions about a child’s care can be met with conflict not only between medical teams and families but also within family units themselves. However, I have also observed the use of the best interest principle collectively by all members of the hospice team. I can think of times where we have clustered procedures and medical care together so as to free up time in the day in order for a child to participate in school and activities with recreational therapy and family. I also think about a time where the kitchen staff carved out time for a parent to make dinner for her child and family in the hospice kitchen. This child was really missing his home environment and home cooked meals. By placing the best interests of the child principle at the forefront of my nursing care, this principle helps to provide perspective and offer guidance in supporting children and families to make decisions and deliver care that is child centered.

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