Aims We sought to explore what parents value from their physicians when deciding on treatment for Hypoplastic Left Heart Syndrome (HLHS). We were interested in parental views on the decision-making process, the factors which influence their choices and in the level of physician involvement they desire.
Methods Eight families who had received a diagnosis of HLHS in the last 3 years and had chosen surgical intervention underwent structured interviews lasting between 1–3 hours. Patients were de-identified and results discussed with two Paediatric Cardiologists and a Professor of Bioethics to identify key themes.
Result Parental understanding of HLHS was varied; 6 of the 8 families displayed limited understanding of the long-term complications and quality-of-life issues. All remembered feelings of shock and confusion at the time of diagnosis.
When discussing what motivated their decision to choose surgery the parents all expressed ideas about the ability to give their child hope. When asked how important the following factors were in making their decision, the mean results were: (1: ‘not important at all’; 5: ‘very important’) the doctor’s opinion: 3.6; other people’s opinion: 2.0; religion: 3.8; financial considerations: 1.9; other commitments: 2.9
Seven families felt the decision was entirely up to them. One mother instead said she, her husband and the doctors were “all together” in making the decision. Seven families said the information was presented to them in a neutral manner by the doctor. Seven families felt their doctors were optimistic about their child’s outcome. Three families asked for their doctor’s opinion on treatment whilst five did not, stating it was irrelevant to their decision. Seven families said parents should make decisions regarding treatment of HLHS. One father said the doctors should make the decision, whilst his partner felt it should be both parties. All eight families felt content with their decision and none expressed regrets.
Conclusion Our findings offer valuable insight into the parental experience and indicate that most families with a diagnosis of HLHS felt the decision-making was entirely up to them and that information from doctors was neutral but nonetheless optimistic. Whilst parents wish to remain the final arbiters of the decision, some do value the doctor’s opinion.