In 2019, when we started researching children’s consent for non-urgent heart surgery, we were surprised by the enthusiasm of health care professionals to give consent with the right to refuse. In the first of our 45 interviews with practitioners and related experts, an anesthesiologist said:
“As a group, we want to be the best in the world at delivering some form of evidence-based consent that’s great for patients and legally sound.” We aim to make these wonderful… Some four-year-olds can really decide if they want to [to be anaesthetised with] mask or injection… There are younger and older children who are very afraid. Ten years ago we would have held them down and given anesthesia… These days we… know that holding children against their will is very harmful. This takes away their control and then causes a lot of behavioral changes and psychological damage. [Colleagues have] has changed the whole narrative of what is acceptable and what is not… no one needs to have a horrible experience.
The entire team of professionals agrees and carefully prepares young children for surgery. If 4-year-old children still actively resist the anesthesia mask, the operation can be postponed. Children are referred for further support until they are ready to accept painful and distressing procedures because they understand and want the health benefits of surgery.
A heart transplant requires a lifelong commitment, such as taking anti-rejection pills every day. Little donor hearts are in short supply, and doctors have repeatedly said that transplants for patients over the age of 6 can only be performed on willing, committed children. After several weeks of information, support and discussion, if the child is still unwilling, surgery will not be offered. Living with a “new heart” is hard work. A psychologist reported the profound understanding of some young children when she explained to a 3-year-old:
“It’s a bit like when a car gets a new engine… It helped him understand why he had to take medicine because… if he didn’t put gas in it, his engine would stop… he knew very well that this engine he already had not worked very well and that this engine can stop.
Our research project was developed over several years. My PhD in the 1980s was about parental consent for heart surgery on children in two London hospitals.[i] I did not talk much with the children without approval from Research Ethics Committees (RECs). Many of the children were then given little or no information in the hope of protecting them from anxiety and stress, so I avoided the risk of troubling them with questions. One in ten young patients died during or after heart surgery.
My postdoctoral research focused on children’s acceptance of orthopedic surgery because it is less dangerous and mysterious.[ii] Among the 120 interviewed, some children said they could of course give informed consent from the age of 12, 10 or sometimes 8, and adults agreed. Later, we studied children with type 1 diabetes requiring daily insulin injections and finger prick blood tests. Informed consent for children as young as 4 years old allowed them to deeply understand the nature and purpose of the procedures, the risks and benefits, and the alternatives, including the effects of not taking insulin.[iii]
In 2016, our application for funds to study children’s consent to heart surgery was rejected. The second application was successful and work began in 2018. in November. However, the REC review took 16 months, so by 2019 In October, we could not enter the hospitals and conduct observations. in 2020 February. COVID-19 has interrupted our direct access and all non-emergency operations have been suspended. cancelled. Another “hurdle”, although for the best of reasons, was that many children between the ages of 6 and 15, for whom we had hoped to undergo non-urgent reoperation, as in the 1980s, were usually not available. Miraculously, the death rate has dropped to less than one percent, and operations in the early months and years are now so successful that children 6 years and older live largely healthy lives without surgery. We continued to collect data remotely by phone and online until 2021.[iv]
Despite the obstacles, our interviews with professionals, children and parents, an online survey with families and children’s online discussion groups organized through children’s heart charities have yielded a wealth of data, which has been presented in six published articles to date.4 There were additional hurdles when submitting the documents. While some reviewers have been positive about our articles, others have raised questions, mostly over minor aspects of style. Partly because the top clinical journals we applied to are overwhelmed with submissions, our journals were often rejected. Our lead paper, Age of consent for cardiac surgery in children, was rejected by five clinical journals and revised each time it was resubmitted before being accepted Children and society.[v]
A major, if often hidden, obstacle and reason for rejection, particularly by US reviewers, appears to be that our evidence challenges long-standing traditions of medical practice, law and ethics. They still assume that children are incompetent, and no minor can refuse recommended major surgery. These approaches urgently need to be updated and reformed. The greater respect shown by reviewers and editors of nursing, social research, and childhood journals for the true capacities of children must extend to the leading medical and ethical journals that drive humane innovation and progress.
Thanks
I thank Katy Sutcliffe and Rosa Mendizabal, my colleagues, all the children and adults who generously participated in the study, and the British Heart Foundation for funding.
The author
Priscilla Alderson is Emeritus Professor of Childhood Studies at the Institute for Social Research, University College London, UK http://iris.ucl.ac.uk/iris/browse/profile?upi=DPALD60
Links
[i] Alderson, P. (1990). Choice for children: parental consent to surgery. Oxford: Oxford University Press; in 2023 Routledge Revivals.
[ii] Alderson, P. (1993). Children’s consent to surgery. Buckingham: Open University Press.
[iii] Alderson, P., Sutcliffe, K., Curtis, K. (2006). Children’s consent to treatment. Hastings Center Report, 36, 25-34.
[iv] For more information on project methods and reports, see https://www.ucl.ac.uk/ioe/departments-and-centres/centres/social-science-research-unit/consent-and-shared-decision-making-healthcare/ Child and parental consent for heart surgery.
[v] Alderson, P., Bellsham-Revell, H., King, L., Vignesgarden, T., Wray, J. (2023).Pediatric age at which non-urgent cardiac surgery is permitted: opinions of two pediatric cardiology groupsChildren and societyhttp://doi.org/10.1111/chso.12717.
