Practitioner's Perspective: Family Centered Care

by Michael V. DiMaria, M.D.

Children's Hospital Colorado

Family centered rounds have been introduced in many children’s hospitals for several reasons, but one of the primary motives is that families like to be involved in the health care decisions of their children. Family centered rounds are also a manifestation of a change in the culture of medicine, which has occurred relatively quickly. The way we as physicians practice medicine has shifted from what was a more paternalistic model to a cooperative one; this is addressed very explicitly in medical school curricula: we are in the era of ‘patient autonomy In pediatrics this translates into ‘family autonomy.’ The consequence of the rapid change is that both health care provider and patients can be unfamiliar with the process, and unsure of how to make best use of this opportunity.

To understand what this means for families, let’s start by talking about what to expect on morning rounds. First thing in the morning, after the incoming team of providers has gotten up to speed on developments from the overnight shift, the group gathers at each patient’s bedside in turn. The goal will be to review the events of the last day, discuss how the patient is doing, and come up with the plan for the next day. This is an important time for everyone on the medical team and the family to get on the same page. Often times, especially at a teaching hospital, a large crowd will be present. In order to make things flow more quickly and easily, the attending may ask that any questions or concerns be raised at the end of the presentation; it is difficult for the team to stay focused and efficient if there are frequent side conversations.
Next, the players: the patient’s nurse will be at the bedside, advocating for the family, bringing up unresolved issues, and clarifying his role in the plan. A resident or fellow will ‘present’ the patient to the group, meaning that she will be responsible for knowing all the details about the patient and summarizing them efficiently to the group. To briefly explain how she came to be in this position, after graduating from medical school and receiving an M.D., she did a 1 year internship, then began a 2-5 year residency; after residency, she may do an additional 3-4 years of training, called a ‘fellowship’ to sub-specialize. After finishing all of her training, a doctor becomes an ‘attending physician’ – the person in charge of the team. The attending will be listening, teaching, and guiding the trainee through the process of assembling the data and figuring out what to do next. Various other people may be present, including pharmacists, nutritionists, nursing leadership, physical therapists, etc.
As alluded to above, rounds will consist of a brief description of the day’s events, a review of the physical exam, then a bunch of numbers (lab values, fluid intake and output, ventilator settings, etc.). At the end of all of this comes the assessment and plan. It goes without saying that during the assessment the presenter verbalizes their impression of how the patient is doing. The plan is usually presented in parts, according to ‘organ systems’ (all of the respiratory issues are grouped together, as are all of the cardiovascular problems, etc). This will sound something like, “From a respiratory standpoint, I think we can try to decrease the oxygen from 2 to 0.5 liters per minute. From a nutritional standpoint, I think that Sam can try to eat a solid diet today…” This will continue until all of the active medical issues have been addressed.
When patients and care providers first encounter family centered rounds, some may find it uncomfortable to have conversations about sensitive topics in the presence of a large group. Of course, there should always be the option for the family to have a more private conversation with only the essential members of the team, should there be concerns about privacy. From the resident’s perspective, my colleagues and I were initially very nervous about presenting a patient history and physical in front of the patient’s family as a resident. Aside from being a little shy, I think I was nervous that I would get something wrong and that the family would correct me in front of the boss. I quickly got over this fear, when it became obvious that the common goal was historical accuracy.
There are several points during the process when the family’s input will be especially helpful. It goes without saying that nobody knows a child better than the primary caregivers, and so who better to be the definitive source of historical information? Because team members may come and go twice a day (at the end of a 12 hour shift), none will have the perspective of the family, who will have been with the patient continuously. Being able to give the team an idea of the overall trend of the patient’s symptoms can be very helpful. Similarly, it can be difficult for people who don’t know the child to tell what sorts of behaviors are personality-related and which are indicators that things are not quite right.
The goal of this process is to get the patient home, feeling well, and able to participate in all of the things that go into being a healthy, happy kid. More often than not, this means that the family will need to continue some interventions in the home. So, part of having a child in the hospital is learning about the disease and the treatments. Being an informed caretaker will better enable the family members to identify when problems occur at home, and what to do about them. Some measure of our success as care providers is whether or not the family feels comfortable once they are discharged. Our hope is that the shared knowledge and unified goals of families and care providers results in a close working relationship that develops in this setting of family centered care.
Thank you, Dr. DiMaria, for lending your insights and expertise to our HLHS families!