Consent and Disclosure in Pediatric Heart Surgery
The trust that families give healthcare workers is immense. To break that trust by lack of communication is heart breaking.
The healthcare community should read this story, perhaps this entire book. We are given a great charge to take care of our patients, and by extension, their families. We have a responsibility to provide accurate, on-time information and to assure that the information is understood clearly.
This effort begins with informed consent. Patients and families should be told the unvarnished truth about their condition. They should also be told the specifics about the procedures or treatments that may or may not fix it. The chance that something could go wrong should also be discussed in clear terms.
Informed consent in ECLS is difficult. Do you obtain consent for every cardiac procedure just in case the patient arrests? Do you obtain consent for every intensive care patient for the potential that there may be a life-threatening event that requires extracorporeal life support?
Even more difficult is the obtaining of consent during duress. Asking for permission to use ECMO as a life saving technology because a parent’s child is at risk of dying (sometimes eminently) almost precludes the answer from being no. Does that parent hear the risk of bleeding or mechanical failure? Do the parents understand that the chance that the lung or cardiac failure may not be reversible and that the clinicians may have to stop ECMO at some point? Probably not. Consent in ECLS is a continuous conversation. Obtaining a signature on a form does not end the conversation. Discussion must be held at least every day so that the family understands the condition of the patient and how things are going. Any untoward complication must be explained in layman’s terms. Employing ancillary personnel, such as chaplaincy, social services or palliative care, to assist in clarifying terms is very important. Hearing things in many ways helps to build understanding and trust.
There are no easy answers regarding conversations and obtaining consent. Perhaps this topic should be discussed in ethics committee or the ECMO supervisory group in your institution. Do you have a separate ECMO consent or do you just fill in the blanks on a generic procedure consent? Have you reviewed your ECMO consent lately? Is it truthful? It is all-encompassing? Does it mention the fact that the patient may die from a complication of ECMO? Does it mention that ECMO may be stopped if it is futile? If not, a thorough review of the language with your ethicists and legal team may be in order.
ECMO does not guarantee survival. It is but one tool in the arsenal of physicians and the healthcare team that can be used to potentially save the life of a patient. To give any other impression is wrong and untruthful. ECMOlogists are in the business of hope – but we must be careful not to overstep the boundaries by saying we WILL save a life.