April 2019

‘Ethics in paediatrics’ challenges for young paediatricians

The situation

Paediatricians will face ethical dilemmas in their everyday practice. There can be disagreement between children/young people and their parents over treatment; cases where some parties wish medical treatment to be continued when it is not considered in the best interests of the child by others; and, conversely, cases where parties do not wish to pursue medical treatment when this is considered in the best interests of the child. Cultural, religious and social factors all play into these dilemmas.

Other ethical dilemmas include ensuring all children and young people have access to treatment in a climate of financial constraint; how much to let young people decide for themselves; and access to new and novel therapies.

Occasionally, high-profile individual cases make the national or even international news, one example being the recent case of Charlie Gard – a best interests decision case which attracted worldwide attention, including that of the Pope and US President Trump. [1] Alternatively, the ongoing debate in the UK about the use of the potentially life-extending cystic fibrosis drug Orkambi, with an annual price tag of £105,000 per patient, shows how financial constraints lead ethical dilemmas where patients are potentially denied life-extending treatment. (2)

However, many cases do not attract such high-profile attention. They nonetheless have an impact on the day-to-day work of paediatricians, including residents and fellows.

A Case

David is a 12-year-old Dutch adolescent suffering from a medullablastoma. Recently, David underwent maximal surgical removal and additional radiation. Further treatment with several weeks of chemotherapy is recommended, as this would improve survival rate from 50% to 75-80%, but David fears the severe side effects of the chemotherapy and, just as his mum, prefers nonconventional treatment.

David’s father, who divorced David’s mum a few years ago, however, argues that this would not be in David’s best interests and demands treatment with chemotherapy. Eventually, David’s father brings the case to court. The court then considers David mentally capable of making decisions about his treatment, and he does not have to undergo chemotherapy.(3)

How does this affect young paediatricians in Europe?

Imagine being a paediatric trainee, taking care of David. During rounds, David tells you about his dreams for the future. As a paediatric trainee, you are being trained to treat, to cure, to make sure that young people can live their dreams. You truly believe that undergoing chemotherapy is in David’s best interests. The court’s decision therefore causes moral distress as you cannot treat David in the way that you believe is right.

Paediatric trainees often experience moral distress (4-6). Moral distress can be defined as distress that occurs when individuals make clear moral judgements about what action they should take, but are prevented from acting accordingly due to constraints. This distress can negatively impact personal integrity, physical and emotional well-being, workplace satisfaction and patient care, but may as well promote patient advocacy or be an impetus for medical decision-making(6).

Although cases like the one above occur, moral distress is often associated with cases where care is continued when this is not considered to be in the child’s best interests(6). In either case, medical decision-making became an ethical conflict. Ideally, medical decision-making is a partnership between clinicians, families, and the child. However, differing personal values, beliefs, and preferences may challenge this process. These challenges can be unique to paediatrics, as children are constantly growing, developing, and changing(7). Current developments can make medical decision-making in paediatrics even more complex. A few examples to illustrate this:

• As divorce rates increase, medical decision-making processes may be more and more complicated by conflicting values of (fighting) parents, or the child’s loyalty to one parent.
• New medical innovations, including gene editing and promising, but very expensive medicines or treatments, may demand parties to reshape beliefs, values, and preferences.
• Globalisation may also create new challenges: differing health care standards of other countries may enable new treatment options, which for instance complicated the Charlie Gard case(1). Furthermore, as patients increasingly move around the world, medical decision-making can become more complex due to varying cultural or religious values and beliefs, or when stakeholders do not share a common language.
• There is great disagreement about children’s capabilities for medical decision-making, which can be illustrated by differences in legislation of European countries. In the Netherlands, a child is considered mentally capable of making medical decisions at the age of 12, whereas they would only be able to do so at the age of 14 in Portugal, or even 15 in Denmark. In England and Wales, there is no ‘age’ standard but rather a competency-based standard for the child to provide consent; but no refusal until adulthood if another person lawfully provides their consent.

Our recommendations

We outlined some of the ethical dilemmas that paediatricians may face in their daily practice. The moral landscape of paediatrics is constantly changing, creating new ethical dilemmas. Ethics training during paediatric residency and fellowship is therefore recommended, but ethics training greatly varies between both institutes and countries, and a lack of ethics training in current curricula has been reported (8-10).

As patients and health care providers increasingly move around Europe, harmonising medical curricula, including ethics training, seems sensible. In order to do so, we require needs assessment and content formulation for the topics included in ethics training for European paediatric trainees.

We recommend providing insight into European paediatric residents’ and fellows’ experiences with perceptions of ethical challenges in their current and future practice. This may consequently inform paediatric ethics training. Paediatric trainees can then be trained and empowered to face and to solve current and future ethical dilemmas, and to use moral distress as an impetus to promote child advocacy and medical decision-making.

Authors

• Maria den Boer
• Sian Copley
• Joe Brierley

References

1. BBC. Charlie Gard: The story of his parents’ legal fight. 2017. Available from: https://www.bbc.com/news/health-40554462.
2. Woode D. NHS drugs scandal stops treatment for cystic fibrosis. iNews. 2019. Available from: https://inews.co.uk/news/health/nhs-drugs-scandal-stops-treatment-for-cystic-fibrosis/.
3. König E. David denkt zonder chemo ook te overleven. NRCNEXT. 2017 13 May 2017.
4. Harrison C, Hilliard R, Madden S. Ethical conflicts and moral distress experienced by paediatric residents during their training. Paediatrics & Child Health. 2007;12(1):29-35.
5. Trotochaud K, Coleman JR, Krawiecki N, McCracken C. Moral Distress in Pediatric Healthcare Providers. Journal of pediatric nursing. 2015;30(6):908-14.
6. Prentice TM, Gillam L, Davis PG, Janvier A. Always a burden? Healthcare providers’ perspectives on moral distress. Archives of Disease in Childhood – Fetal and Neonatal Edition. 2018;103(5):F441-F5.
7. Lantos JD. Does pediatrics need its own bioethics? Perspectives in biology and medicine. 2010;53(4):613-24.
8. Martakis K, Czabanowska K, Schröder – Bäck P. Teaching Ethics to Pediatric Residents: A Literature Analysis and Synthesis. Klin Padiatr. 2016;228(05):263-9.
9. Lang CW, Smith PJ, Ross LF. Ethics and professionalism in the pediatric curriculum: a survey of pediatric program directors. Pediatrics. 2009;124(4):1143-51.
10. Cook AF, Ross LF. Young physicians’ recall about pediatric training in ethics and professionalism and its practical utility. J Pediatr. 2013;163(4):1196-201.