Consenting for heart procedures
It is important you take an active role in the consent process so that you feel educated to make an informed decision about your child’s heart procedure.
The consent for heart procedures is a very important part of the preparation for your child’s procedure and is a legal document. For children with congenital heart disease there may be multiple times you will consent for heart surgery, catheterisation procedures or other emergency procedures. Consent should be in shared decision making between the physician and parent or patient(1).
Unfortunately, the recollection of consent information by parents can often be poor; One study showed only 21% of patients were able to recall the possible risks and complications of their child’s procedure(2). It is important you take an active role in the consent process so that you feel educated to make an informed decision about your child’s heart procedure.
What is informed consent?
Informed consent is the process a clinician takes to explain a proposed treatment. It is an ethical and legal obligation of the medical practitioner. The consenting person e.g. parent must be deemed ‘competent’ to make a decision about whether a child should undergo a procedure.
Who carries out the informed consent process?
A doctor, or in some instances a nurse practitioner, is able to provide informed consent. For major heart procedures this is generally performed by the paediatric cardiac surgeon or cardiologist themselves. However this role is often delegated to other less senior members of the team. This is entirely appropriate if the person consenting for the procedure has seen, performed &/or comprehensively understands what they are explaining to you. Consent for smaller procedures such as a wound washout for example, can be performed by a more junior members of the medical team.
The informed consent process can occur at any time before the proposed procedure. For an elective heart procedures the consent may occur days to months in advance. For emergency procedures this generally occurs minutes to days before the procedure.
Who can provide informed consent?
Consent for medical treatment of patients under the age of 18 years is generally provided by parents or guardians. In the event a parent is not competent to consent, the medical team may need to have a legal guardian appointed. Practices will vary depending on your country or state.
Paediatric practice is unique in that parental permission and childhood assent evolves as the child ages. With development and maturation over time, children are often increasingly included in the medical and decision making process(3).
What happens in a life-threatening emergency?
In a life-threatening emergency that requires immediate management, treatment can be given without informed consent to save a person’s life or prevent serious damage to their health.
What should be covered in the consent process?
· Explanation of why a procedure needs to be performed including the benefits and possible outcomes of the procedure
· Alternatives to this procedure including the risks and benefits of each
· Detailed explanation of the procedure (+/- anaesthetic information)
· Expected post-operative course e.g.
o Whether blood products are likely to be needed in the peri-operative period
o What lines and tubes are expected after your child’s procedure
o How long your child will be in the procedure and in hospital
· Risks and complications of the procedure, potentially discussing how these can be managed
· Questions - There should always be time for you to ask questions, clarify anything you are not sure of.
How to get the most out of your heart baby’s consent process?
There’s no doubt our clinicians are always in a rush and under-resourced, but this should not be an excuse for a poor consent process for your child. Here are some suggestions to make sure you get the most out of your child’s consent;
· Ensure a place and time where you are able to give your full attention. Frequently consents are done in the hospital bedside where there may be other distractions. If the time or location is not appropriate, e.g. you have another child distracting you, you can request the clinician return at a suitable time.
· Ask the clinician to clarify anything you have not understood; The use of diagrams, multimedia or written material can be very helpful(2).
· Listen well
· Consider taking notes and have a support person with you
· Make sure everything on the list above has been covered
· Make sure the clinician addresses all your concerns and don’t sign if you are unsure. It is within your rights to feel comfortable with your decision. If you are not happy with the explanation you have been provided or the clinician is unable to answer your questions, ask if there is someone who can answer these.
What happens now?
The consent paperwork will detail your child’s name and the procedure being undertaken in medical terms. If the terminology is not clear to you, ask again. The legal document will then require a signature for one or both legal guardians to proceed. Each hospitals’ consent form is different, some may also list the risks of the procedure or may have an separate consent for blood products.
The consent will then sit in the patient’s file and go with your baby to their procedure. As part of the World Health Organisation’s surgical safety checklist, a “Time out” will be performed before your child’s procedure can begin. This is where all the team members introduce themselves and a member from each team (medical, anaesthetic and nursing) will confirm the patient (comparing the identification attached to the patient with the identifying information on the consent) and the procedure listed on the consent form. So the consent forms a very important part of ensuring the correct child gets the correct procedure. It is mandatory that every hospital performs a “Time out” (also called Time in at some hospitals).
References
1. Bernat JL, Peterson LM. Patient-centered informed consent in surgical practice. Archives of Surgery. 2006.
2. Sherlock A, Brownie S. Patients’ recollection and understanding of informed consent: A literature review. ANZ J Surg. 2014;
3. Katz AL, Webb SA. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;