Physicians working with the youngest and most vulnerable of patients – those in the NICU or PICU – have specific care considerations to keep in mind. One of the biggest differences is that NICU/PICU patients are truly unable to speak for themselves. Care must be closely coordinated with their parents, and extra steps have to be taken to keep parents informed and educated about every step of their child’s care. Following these guidelines creates the best outcomes for patients and their families.
According to William Malcolm, M.D., lead editor of Beyond the NICU: Comprehensive Care of the High Risk Infant, physicians in the NICU often need to look beyond just the medical evaluations and treatments to consider the developmental, social, and financial implications for the child and family. “Additionally, we must have an understanding of the family’s ethnic and educational background and their available resources to be sure that there aren’t serious communication barriers that may impact a family’s decision-making or discharge plan,” he says.
Most important is how to communicate effectively with parents. “Communication and consistency are extremely important when trying to lessen the anxieties that a parent will face with their infant/child hospitalized in the intensive care unit,” Dr. Malcom says. “A brief explanation of who the medical team members are, the rounding and unit routines, the monitors and their alarms, the medicines and studies/treatments, or any changes is the daily plan will go a long way. Having consistent nurses, providers, as well as a ‘go to’ social worker or parent advocate may also provide some comfort in knowing where to voice their concerns. Creating a safe environment where families can advocate for their loved ones and listening to their concerns and anxieties will allow the team to address them in a quick and productive manner.”
Ranna Rozenfeld, M.D., lead editor of the forthcoming publication The PICU Handbook and a staff member at the Ann & Robert H. Lurie Children’s Hospital of Chicago, also emphasizes there must be open lines of communication with families. “At our institution, families are encouraged to join us on morning rounds in order to hear what is discussed and the plans for the day,” Dr. Rozenfeld says. “They are offered an opportunity to ask questions. Some families choose not to join rounds, and then we update them at the end of rounds. We also go back later in the day to families to make certain we answer their questions. For non-English speaking families, we will update them with an interpreter, either with in-person interpreting services, video interpreting services, or phone interpreting services.”
The best way to communicate with parents and families in the NICU/PICU is in person. Dr. Malcolm says communicating during rounds is best.
“If [parents] are able to be present and comfortable participating in rounds, then we as providers are able to include their observations and opinions in our assessment and we can devise a medical treatment plan as a team that includes the family members,” Dr. Malcolm says. “If the parents are unable to be present during rounds, or prefer a more private conversation, meeting in person after rounds and after the ‘tasks’ of the day are completed at a mutually convenient time is best.” But for simple questions, e-mail or communicating through an EHR can work as well.
Dr. Rozenfeld says where she works, physicians are available to speak in the PICU 24 hours a day, seven days a week. Additionally, “We are beginning to institute a video conferencing system to update parents who are not able to be present during rounds.”
Also, when a patient is seen by various sub-specialties, the parents sometimes feel like they are being told different things by different physicians, Dr. Rozenfeld says.
“It is good to either have multi-disciplinary rounds with the various sub-specialties, or arrange for a care conference, so that the parents can ask their questions with all the sub-specialties present, to clarify any misunderstandings or conflicting suggestions,” she says.
When communicating with parents, it’s important to listen to what they are saying. “One of the biggest mistakes is being authoritative and not listening to or respecting the parents’ observations, suggestions, or concerns,” Dr. Malcom says. “If the mutual trust between parent and provider is lost, then there is no way that optimal care and outcome will be achieved.”
While physicians may consider foreign language barriers, Dr. Malcolm says, “sometimes it’s forgotten that medical jargon is a foreign language to many and often families need very simple explanations with a common language regardless of their level of education.”
And don’t start off conversations with bad news, he adds, because “if a parent hears bad news (or what they perceive to be bad news) at the beginning of a conversation, everything said afterwards may go unheard.”
According to Dr. Rozenfeld, when delivering bad news, it is good to ask parents who they would like to have present for the discussion. “They may want to have other relatives or close friends present to support them,” she says. “In addition, we offer to have the chaplain and/or social worker present, but allow the parents to decide.”
The emotional and practical needs of families must be considered in addition to the medical needs of the patients, Dr. Rozenfeld says at the Ann & Robert H. Lurie Children’s Hospital of Chicago there are clergy, social work services, and a child life department that can help siblings deal with their siblings’ illness. Additionally, parents can visit 24 hours a day, seven days a week.
“Allowing the parents to be with their child helps them to deal with the illness,” Dr. Rozenfeld says.
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