Partnering with Families
David L. Skaggs, MD, MMM
Elaine Butterworth, RN, BSN, CPN1
Lori A. Karol, MD1
There is no question that partnering with parents requires a significant amount of time and energy on the part of the doctor and entire health care team. At times, the demands may seem unreasonable. However, very few things in life compare to the sincere depth of gratitude we receive from parents, children, and others when caring for a sick or injured child. One of the wonderful things about caring for children’s orthopaedic problems is that we can significantly improve, or cure, most of the children we care for, and we often become part of their lives for many years.
Psychologists tell us that the death of one’s child is perhaps the most painful thing a human may experience; worse than divorce or loss of a spouse. By extension, when a child is in pain, sick, or at risk of harm, a parent may actually suffer more than the child. Anger or other irrational behavior on the parent’s part is a common response to this stress. A child with health problems can be a severe stress to a marriage. Caregivers must have broad shoulders to carry the weight of the family’s problems. Acknowledging a parent suffering and accepting responsibility to care for the parent as well as the child is an important aspect of a healthy doctor-family relationship.
Simply smiling and starting “from a place of yes” can set a positive tone. It is almost always possible to answer a demand with “Yes, we can do what you suggest, but must consider these consequences …” When a parent expresses anger toward you, monitor your emotions. It is natural to become defensive. Instead of being defensive, it may be better to say, “It was not my intent to make your child worried by discussing this complication.”
If this seems a bit too touchy-feely, remember staying out of legal trouble in pediatric orthopaedic surgery may be more dependent on the family’s feelings toward the doctor than technical skill or outcome.
Heightened Emotions Decrease Logical Understanding
Families are frequently so overcome with emotion after hearing their child may have a perceived serious medical condition, need surgery, or face risks and complications, that they are unable to process or remember much of what the doctor said. This can lead to confusion, anxiety, extra office visits, and multiple phone calls.
Dr. Flynn Adds
A concept to consider in dealing with a family is the profound difference between a family thrown into your lap by a serious injury that you meet moments before important surgery and that family you’ve been shepherding through bracing for 3 years and eight visits and that is now facing elective surgery. Those are very different dynamics.
When family members repeat the same question multiple times, it is likely that the answer was not effectively communicated (given and/or received) the first couple of times, or they did not like the answer. Either way, this is a cry for help that more communication is needed. It may be tempting to ignore this during busy office hours when other families are waiting, but ignoring it will cause more problems in the long run and degrade your stature in the eyes of the family. Repeated questions are a time to lean in.
Busy physicians do not always physically have the time to answer every question, particularly repeated questions. We cannot stress how valuable it is when a nurse or physician assistant spends time with families after the doctor leaves the room to answer questions and make certain that the family “heard” what was said. Resources spent on patient education and relationship building are well worth it.
One technique for addressing repeated questions is to gently point out that the question was already asked and inquire if they understand the answer. This often elicits the parents’ underlying concerns.
Understanding and managing parental expectations is a key step for staying out of trouble in pediatric orthopaedics. Parents’ satisfaction with their child’s care depends on their expectations almost as much as the outcome of surgery. Take the example of a 3-year-old girl with a midshaft femur fracture treated in a spica cast that healed in 5° of valgus with a minor limp persisting 3 months after injury. At this point many parents are concerned and even upset when they see that the bone has healed in a “crooked” position and that their daughter is not walking normally. In contrast, parents who have been adequately prepared may be thrilled that the femur healed in a nearly straight position that will continue to improve without their child needing surgery (which they learned carries risks and results in scars). Furthermore, they feel fortunate that her limp is almost gone already, as the doctor told them children often limp for 6 months following a femur fracture.
Sharing X-ray images of fracture remodeling (forearm, femur, and proximal humerus are good examples) with families is a highly efficient means of guiding parental expectations and preventing unwarranted anxiety before it occurs. Feel free to make copies of Figures 1-1 and 1-2 for your patients. A small amount of time spent at the beginning of treatment often saves large amounts of time later explaining “unexpected” progress and pays rich dividends toward the family’s satisfaction and the doctor’s reputation. A surgeon who warns a family ahead of time of loss of forearm rotation with a radial neck fracture looks like a prophet (Fig. 1-3). A surgeon who tries to explain it after the fact is more likely to be perceived as covering up bad results.
All Kinds of Families
The care team should know the relationship of all the people in the room to the patient, such as parents, stepparents, uncle or aunt, friends, etc. Prior to treatment, clarify who is the legal guardian otherwise you may discover at the time of surgical consent, or worse on the day of surgery, that the child’s legal guardian is unaware of the planned surgery. Often, extended family members or siblings may be useful, particularly in cases of language or comprehension challenges.
Beware that some parents going through a divorce consciously or unconsciously use their child’s health care as a bargaining chip against each other. A surgeon may help diffuse this dynamic with an explicit reminder to both parents of the common goal of doing what is best for the child. Although it takes more time, it may be best to give each divorced parent a teaching handout and to meet with each parent separately or follow-up with a phone call to the absent parent at the end of the day. Document this, as I have seen these conversations brought up in divorce proceedings. It is important that neither parent senses you are taking sides or have secrets with the other parent; maintain neutrality. Make certain your responsibility to the child presides over any social discomfort on your part.
Who’s in Charge Here Anyway?
Some interesting situations arise with the doctor-family relationship in terms of authority. A common scenario is that the parent wants you to pronounce what is “best” for the child and with the understanding that the parents will enforce the will of the adults. This is effective for a baby needing a vaccine, but can be emotionally devastating for the 13-year-old girl considering brace treatment for scoliosis. When a child transitions into a self-aware human participating in their own destiny, varies by family, social setting and child.