When Parents and Clinicians Disagree: Deciding What to Do
By Doug Diekema, MD, MPH, Center for Pediatric Bioethics
Dr. Doug Diekema
Clinicians regularly face disagreements with parents, whether it's a mom who says she doesn't want her daughter to do a physical therapy session or a family who refuses a blood transfusion for their son because of religious beliefs. How do you know when to follow a parent's wishes and when you need to put your foot down? Where do you draw the line?
Most disagreements between clinicians and parents fall into one of two categories: either a parent is making a request that the professional does not feel they can provide or a parent is refusing a treatment or procedure that the professional feels is necessary.
When Parents Make a Request
When parents ask for something that isn't part of our standard care, you, as a clinician, have the freedom to use your professional judgment to decide whether or not you will provide that treatment or procedure based on what you believe is in the best interest of the child.
You don't have to provide something that is requested if you feel it will harm the child. However, if you're going to deny a request, you need a good, patient-centered reason for doing so. It is not enough to simply say, "That's not the way we do things here." As a general rule, we should accommodate requests that are reasonable and can be handled without extraordinary measures.
When Parents Refuse a Treatment or Procedure
It's very different when a parent refuses treatment or a procedure for their child - whether it's as simple as one immunization or as complex as a chemotherapy and radiation therapy regimen.
In these cases, it's no longer helpful to talk about the child's best interest. For a child who needs a blood transfusion, we think it's clearly in the best interest of the child to get blood, but parents who are Jehovah's Witnesss with a spiritual belief that it will harm their child will disagree and argue that the spiritual consequences make it contrary to their child's best interest.
Now you have a situation where you actually think a child should be forced to undergo treatment against their parents' wishes. As a general rule, clinicians can't do anything to a child without parental permission unless the state has given them permission, except when the child's life or welfare is immediately threatened.
Finding Out the Parents' Reasons
The first step in these situations is always to ask questions that will help you understand why the family is refusing. It's the same paradigm we use in clinical medicine: you have to diagnose the problem before you can fix it.
Clinicians have situations arise all the time when families don't want them to do something. A dad might tell a nurse that he doesn't want his child to get another poke. A mom might tell the physical or occupational therapist that she doesn't want her child to be bothered.
In each of those cases, the first step is to try to avoid getting defensive, and to take a deep breath and ask the parent, "What's your concern about doing this today?" Sometimes it may be obvious. Maybe the parent wants the child to rest after a rough night and you can just come back later.
But it may be that the mom says she doesn't think the therapy is helping, in which case you find out that you'll need to spend some time talking with the parent about the child's progress or lack of progress so they'll understand why the therapy is necessary.
Often what underlies refusals is a lack of trust. At some point, a clinician said something to the parents that didn't come true, or somebody gave the patient the wrong drug, or a patient had an unexpected reaction to a drug. It's usually not intentional on the part of the clinician, but something has caused mistrust. In that case, you have to repair that trust before you can proceed.
You don't want to ask a question in a way that challenges a parent and makes them feel defensive. The goal of asking questions should be to understand. When you do that, your questions show the parents that you respect them, and they'll feel that they finally have a nurse or physician who wants to know what they think instead of just telling them what to do all the time.
We have to recognize that we tell people what to do a lot, and we sometimes forget that from their perspective it may appear that we're constantly telling them what to do without asking them how they feel about how things are going. In fact, sometimes parents push back just because we're telling them what to do. Showing a genuine, sincere desire to understand a family's perspective can go a long way, even if ultimately you may try to convince them to take a different course of action.
Asking Yourself Questions
In fairness to parents, sometimes we are doing things because it's the way we always do them. Sometimes the right response to the parent's refusal is to ask yourself if you really need to do the thing they are questioning.
It happens to me all the time in the Emergency Department. I'll go in the room and tell the parents what tests we'd like to do. Sometimes the parent may say that a couple of the tests sound fine, but she'd really rather not do the urine catheterization or the spinal tap.
At that point in time, I have to ask myself, "Well, do I really need to do this? Am I doing it because we always do it this way, or because I have good reasons for thinking it's important for this particular child?" Honestly, sometimes the answer is that there is another option, or a particular test isn't that important. So, we do need to be willing to negotiate when parents are making reasonable requests or reasonable refusals.
I think the best thing we can all do is to try not to take differences of opinion personally, but rather to find out where a family is coming from. I'm as guilty of taking things personally as anyone else. If I offer something and it's refused, it's easy to get defensive, and then it becomes really hard to work with families. When a family refuses something - or makes a request for something that isn't standard - the goal is to take it as an opportunity for dialogue instead of as a personal attack.
If you ever want to discuss a question with our bioethics team, call the operator and ask to page the bioethics staff member on call.
For more information:
- Visit the Center for Pediatric Bioethics Web site.
- Read the American Academy of Pediatrics report Communicating with Children and Families: From Everyday Interaction to Skill in Conveying Distressing Information.
- Learn about Children's upcoming pediatric bioethics conference, Predicting Our Future: Genetic Testing in Children and Their Families.