Should nonintervention (or what some physicians call comfort care) be offered as an option to parents of neonates with hypoplastic left heart syndrome (HLHS)? While this may have been a reasonable choice 2 decades ago, I will argue that—for 2 primary reasons having to do with improvements in outcomes over time and by comparing HLHS with other life-threatening pediatric conditions—nonintervention should no longer be offered.
Let me state up front that I have come to these opinions through working at 2 large tertiary care, academic medical centers during the past 20 years. Both of these centers have been and still very much are strong advocates for intervention in children with high-risk, complex congenital heart disease (CHD). These centers have cared for many children whose families specifically traveled there for these high-risk interventions. My opinions undoubtedly reflect that bias and experience. My practice and research have focused on cardiac intensive care and outpatient pediatric cardiology, including direct care and treatment of postoperative patients through childhood. Admittedly, my perspective reflects a different experience and outlook than those that many pediatric cardiologists, neonatologists, and pediatric intensivists have had in the same time frame. However, participating in and observing first hand the progress that has been made in HLHS in the past 2 decades has been particularly rewarding and forms the basis of my opinions.
Thank you for submitting a comment on this article. It will be reviewed by JAMA Pediatrics editors. You will be notified when your comment has been published. Comments should not exceed 500 words of text and 10 references.
Do not submit personal medical questions or information that could identify a specific patient, questions about a particular case, or general inquiries to an author. Only content that has not been published, posted, or submitted elsewhere should be submitted. By submitting this Comment, you and any coauthors transfer copyright to the journal if your Comment is posted.
* = Required Field
Disclosure of Any Conflicts of Interest*
Indicate all relevant conflicts of interest of each author below, including all relevant financial interests, activities, and relationships within the past 3 years including, but not limited to, employment, affiliation, grants or funding, consultancies, honoraria or payment, speakers’ bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued. If all authors have none, check "No potential conflicts or relevant financial interests" in the box below. Please also indicate any funding received in support of this work. The information will be posted with your response.
Some tools below are only available to our subscribers or users with an online account.
Download citation file:
Web of Science® Times Cited: 21
Customize your page view by dragging & repositioning the boxes below.
More Listings atJAMACareerCenter.com >
Enter your username and email address. We'll send you a link to reset your password.
Enter your username and email address. We'll send instructions on how to reset your password to the email address we have on record.
Athens and Shibboleth are access management services that provide single sign-on to protected resources. They replace the multiple user names and passwords necessary to access subscription-based content with a single user name and password that can be entered once per session. It operates independently of a user's location or IP address. If your institution uses Athens or Shibboleth authentication, please contact your site administrator to receive your user name and password.