Key Points of Bioethical Management in Children and Adolescents

Categories: Care.

The origin and importance of supportive decision-making in paediatric palliative care (PPC) should be based on its primary goal: to reduce suffering and maintain, and if possible improve, the quality of life of the seriously ill and their families. Decisions should be gradual and made with the family throughout the course of a child’s illness, with many being straightforward and barely noticeable. However, at crucial moments, such as changes in treatment plans and approach to care, the outcomes of decisions become much more important and crucial for the family and the clinicians involved.

  1. The four theoretical principles of bioethics are: beneficence, non-maleficence, respect for autonomy, and justice.
  2. All interventions can generate more than one outcome. In making the decision to intervene, it is possible to know the outcome, but moral responsibility for the outcome is only avoided if the decision (such as the dose, or the risk of an adverse effect in relation to the likelihood of a good one) is proportionate to what was intended.
  3. Justice is a universal principle that applies equally to all countries, rich or poor.
  4. Some children will always die of cancer. Justice demands that maintaining a child’s quality of life, once a cure for cancer is highly unlikely, has the same priority as attempts to treat it while a cure seems possible.

In relation to the needs of adolescents and young adults, it must be recognised that these are unique to this group, and services offered to them must be tailored to their needs in terms of age and stage of development, recognising that although they are not yet mature adults, they may require additional support to meet their emerging social, emotional, relational and sexual needs.

Young people often struggle with a high symptom burden and yet want to minimise treatments and health interventions to “get on” with their lives, so it is important to support them to adhere to treatments, attend consultations and be educated to live fully and participate in education, employment and social activities. Transition of young adults from children’s services to adult services should begin early to ensure continuity of care.

Establishing the child’s best interests through sensitive dialogue with parents is essential to getting it right when considering life-sustaining treatment. Careful consideration of the goal of an intervention and the least harmful way to achieve it are hallmarks of compassionate care. Resource allocation is profoundly unequal, not only between countries but often also between specialties within the same country. PCs are often not funded because they do not save lives. However, they can transform the lives of those who are dying, and an ethic of justice and compassion demands that the vulnerable are not condemned to unnecessary suffering.

The principles of beneficence, non-maleficence, autonomy and justice are useful in considering clinical ethics, but in cases of complexity they alone cannot provide adequate analysis. Personal values, such as compassion and empathy, coupled with practical experience in communication and analytical thinking, are the key to preventing conflict. These are the skills our colleagues should expect from PPC professionals, and it is essential that in ethically complex cases quality of life is a job for the multidisciplinary teams involved.

Conflict is not a sign of failure. Rather, it is a sign that the stakes are high and that the members of a palliative care team have strong convictions about what patients and their families need and how best to provide it. Therefore, rather than denying that conflict exists – or avoiding it when it becomes too obvious to ignore – it is preferable to address it constructively and collaboratively. Different contexts may require different responses, depending on whether the conflict is between the family and the team, between the child or adolescent and the family, or within the team itself. Effective conflict resolution improves patient care, as well as increasing the openness and depth of the relationship between children, families and clinicians.

This article is published with permission from the main source Notas Paliativas 2022

Palliatives without Borders, an Spanish  health NGO, of public utility, has started a new course in Palliative Medicine in children and adolescents with cancer and other chronic pathologies, clinical, palliative and psycho-pedagogical approach. Neonatology,                               From 20-6-2022 to 15-09-23. It has 82 SEAFORMEC European credits.  Price of the complete course: 3 courses 300 euros. Price of each individual course 120 euros. For more information and registration please contact

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