Communication between the cardiologist and providers of primary care is an essential component of the medical care of the patient and is of increasing importance in the current era, which is marked by increased complexity of medical testing and polypharmacy. Breakdowns in this vital area of communication can result in delayed or missed diagnoses, repeated or unnecessary testing, increased morbidity and possible mortality, and increased risk of litigation. The challenges that face patients with congenitally malformed hearts go beyond their particular pathophysiology. All patients with important cardiovascular defects require health care delivered by multiple teams. The providers of primary care, general practitioners, and general pediatricians are usually the first line of defense against morbidity and mortality for these patients. Geographic constraints and time may limit patient access to the cardiac specialist; therefore the patient and his or her family must maintain constant and consistent interaction with the team providing primary services to optimize the delivery of health care.
Difficulties in communication between generalists and specialists have been extensively documented. Many physicians learn how to provide effective consultation and treatment and subsequently communicate their results through trial and error, resulting in considerable variability in communication skills and frustrated referring physicians. Pediatricians have historically lagged in developing an infrastructure for effective consultation, and most of the landmark literature in this area come from experience with adult patients. Explicit instructions have been developed for internists and other physicians in how to perform effective consultations and how to improve interpersonal and communication skills. In this chapter, we review some of the challenges encountered when multiple teams care for a mutual patient. Some common problems are highlighted by making reference to hypothetical cases. We also offer some thoughts on potential solutions.
Communication Is Key for Patient Care Transitions
Infant born with multiple medical problems and complex congenital heart disease
Discharged to home at 42 days old
Parents call pediatrician 1 week later to request refill of medicine used for gastroesophageal reflux disease
Pediatricians advise parents to call cardiologist (who started the meds) because of the complex nature of patient’s heart disease
Parents are frustrated because cardiology told them to call their pediatrician for refills
Whose Patient Is This?
The overall health of the child is the responsibility of the team providing primary health care, and consultants must recognize their subsidiary role yet at the same time communicate enough information to the primary care provider (PCP) so that they feel comfortable managing common pediatric problems. Prolonged stays in hospital, particularly soon after birth, often are secondary to the diagnosis of multiple problems. The complex patient with multiple medical problems presents numerous challenges for the PCP. Numerous challenges for the PCP include (1) lack of care coordination; (2) complex technology management; (3) patients’ pervasive psychosocial needs; and (4) lack of effective health care provider training.
This vulnerable patient population is particularly at risk when handovers occur from the cardiologists or subspecialist to the PCP. The points of handover when patients move between clinicians are known as “transitions of care,” and these are recognized as times of high risk for patients because information may be miscommunicated or lost during this time. The lack of effective transfer of information from the tertiary care center to community clinicians for vulnerable infants is a known problem. Poor handovers have been associated with higher hospital readmissions, increased medical costs, medication errors, failure to follow up after discharge, and other adverse patient events. Although the reference case of a medication refill seems like a trivial matter and typically can be handled without incident, studies indicate that seemingly trivial matters in postoperative cardiac patients can be underestimated by parents and by trained medical personnel. Many parents admittedly underestimate the severity of their child’s illness.
Frequently, postoperative cardiac infants have not yet had a face-to-face encounter with their PCPs. It is therefore not surprising that interviewed primary care physicians frequently cite the disconnection between themselves and their patients, particularly when insufficient communication from the cardiac team results in a vital loss of pertinent information ( Fig. 85.1 ).
Complex Patients Require Better Communication to Reduce Barriers to Care.
The cited case study is an example of a complex patient, defined by the Agency for Healthcare and Quality as persons with two or more chronic conditions where each condition may influence the care of the other condition. Complex patients are known to have higher rates of poor clinical outcomes and currently comprise more than one-quarter of the US population. Numerous barriers to health care have been described in these patients, including poor care coordination, poor communication among clinicians caring for these patients, and the lack of team-based approaches.
Although most patients identify the PCP as the principal caregiver of the patient and patient surveys’ descriptions of their PCP reflect this sentiment, poor communication between the cardiologist and PCP undermines this role.
Comments from primary care physicians such as “not being kept in the loop,” “I feel like I’m the quarterback for my patients, but …sometimes I’m not even in the game,” and “patients kind of disappearing from me during cancer treatment” underscore this disconnection. The disconnection between a patient with congenital heart disease and the PCP is heightened when that provider has never had a face-to-face encounter with the patient, such as when a newborn with congenital heart disease is seeing the provider for the first time. Familiarity with the patient and disease are facilitated by predischarge planning with written and frequently verbal communications to the PCP. This is essential for delicate patients, particularly cardiac patients who are shunt or stent dependent for pulmonary or systemic flows. There is evidence to suggest that a minimum information content for comprehensive discharge planning and patient follow-up is needed at the times of transitions of care for complex patients. That minimum can be listed on a one-page medical summary and should include essential items ( Box 85.1 ).
Author: Jena Tanem, CNP
50 days old
Summary of Diagnoses and Procedures
Born at term birth weight 3.640 kg. Apgars 8 and 8
HLHS (MS/AA)-s/p Norwood with 3.5 mBTS and atrial septectomy on 11/18/20
Acute thrombus of the external iliac, femoral and superficial femoral arteries 11/22/20, completed Lovenox therapy
Pericardial effusion—s/p subxiphoid drainage 12/1/20
Diagnostic cardiac catheterization r/t hypoxia, pulmonary venous desaturation found 12/20/20
ALLERIGES AND MEDICATIONS
Aspirin 40.5 mg PO daily
Clonidine 5 µg PO TID
Digoxin 10 µg PO BID
Lansoprazole 4 mg PO BID
Allergies—NO KNOWN ALLERGIES
Primary Physician: Tyra Stephens, MD
Cardiologist: Paul Stephens, MD
Surgeon: Ty Itwright, MD
Interventional Cardiologist: Gil Wernovsky, MD
Planned bidirectional Glenn, ~age 4–6 months. Continue interstage home monitoring program until then. Parents will record daily oxygen saturations, HR, weights, and enteral intake, seen every 1–2 weeks in Interstage Clinic and receive weekly phone calls. Immunizations: Routine childhood immunizations are NOT recommended until after second stage surgery. He SHOULD receive monthly RSV prophylaxis during the cold and flu season
Nutrition: 24 cal EBM PO ad lib, goal of 120 mL/kg/day and 96 kcal/kg/day
Interstage Clinic: 12/29/20
Continue home 02, 0.5 L nasal cannula continuously for pulmonary venous desaturation
Action Plan (When to Call/Who to Call)
Any breach of preestablished criteria or other concerns should prompt parents/health care providers to immediately notify the interstage team. Points of concern would be:
oxygen saturations less than 75%
24-h enteral intake of less than 100 mL/kg per day
weight loss of 30 g or more over a 2–3-day period
inability to gain 10–20 g over a 2–3-day period
development of intercurrent illness including symptoms such as cough, increased work of breathing, irritability, vomiting, diarrhea, or fever greater than 100.5°F.
EBM, Expressed breast milk; HLHS, hypoplastic left heart syndrome; HR, heart rate; RSV, respiratory syncytial virus.
The creation of a summative action plan that describes daily management including permitted activities and medications if needed; what symptoms to look for and how to manage them; and when to call the specialist is helpful for both parents and PCPs. Early contact with the local provider was valued by families, even if the child was deemed quite stable. Discharge instructions for parents should include crucial contact information and an action plan for calling their physicians. The written discharge information for the family should complement the one-page medical summary provided to the PCP.
Emerging Resources to Improve Communications.
There is increasing utilization of the Certified Nurse Specialist in serving the needs of complex patients. Nurse specialists fill a variety of needs that complex cardiac patients and their families require especially in coordinating care and facilitating communications between the caregivers and providers ( Fig. 85.2 ). Parents and physicians have confirmed that certified nurse specialists remain the mainstay of posthospitalization home monitoring programs, which have dramatically reduced interstage mortality in single ventricle patients, improved weight gain, reduced the need for cardiac transplantation, and facilitated earlier detection of important hemodynamic derangements. There is wide agreement that a critical component to the success of home intervention programs concerning high-risk patients is empowering the parent/caregiver through education, repetition, and fail-safe mechanisms.
Consequences of Disconnection: Confidence and Credibility
The potential disconnection between the PCP and the patient subsequent to prolonged hospitalizations may lead to a lack of confidence on the part of the primary caregiver. In addition, lack of connection may result in patient and parental sentiments of lack of faith, trust, or credibility in their primary provider skills. Credibility and perceived lack of competence have been extensively documented in the cancer literature. Patient and parental concerns, as well as specialist’s expectations, may limit the effectiveness of the team’s “quarterback.” In consequence of this disconnection, all of the needs of the patient, with the exception of immunizations, may be left in part to the cardiac specialist, and overreliance on the specialist for noncardiac problems may result. This may lead to role confusion in how much of the general care needs of the patient are to be provided by the specialist. Specialists can also be confused about how much of a role to play in the general needs of the patient. Provider credibility of both the PCP and specialist can be affected where communication is poor.
Other care models, such as care tracking, in which one individual or a small team of individuals is responsible for tracking the care of patients receiving care in multiple places, have been used and pioneered in the care of patients with single ventricle physiology in the midwestern United States. Care tracking, notwithstanding, still mandates optimal communication. Our cited case emphasizes the potential for error when multiple teams function without a point team (the team coordinating efforts of all other primary and specialty teams) and when the specialty knowledge of providers and patients is not well integrated into all phases of the care delivery process.
It is important to note that there have been many strategies used to care for patients: a team-based approach, single provider providing all the care, PCP as quarterback, and specialist as quarterback, all depending on available resources, patient geographic considerations, and skill sets and confidence/comfort of the providers. It is important to note that there is no “right” way to provide care, but there are many effective ways that require communication. Finally, the more differentiated care teams require more communication.
Parental Concerns: Who Should I Call to Discuss a Medical Problem?
Although the pediatric cardiac specialist knows that the overall surveillance of the health of the patient is primarily the responsibility of the team providing primary care, parental confusion and at times unrealistic expectations are occasionally encountered by the cardiac specialist and can lead to strained relationships between the primary care physician and specialist. A substantial number of parents of children with serious cardiac disease may believe that the provider of primary care is unable to meet many of the needs of their child. As previously mentioned, studies have shown that the PCP views himself or herself as the “quarterback,” “conductor,” or “manager” ( Fig. 85.3 ). Despite this designation, the ideal and actual roles do not always match. In a study of cancer patients, poor communication from the specialist undermined confidence in the PCP and led to role confusion ( Fig. 85.4 ). Suboptimal or poor specialists’ communication can also result in misguided overreliance on specialists.
In our experience, even simple congenital cardiac malformations not requiring surgical treatment have produced high levels of anxiety in family members, who have needed constant reassurance regarding the well-being of the child. More parental experience with children with congenital cardiac disease appears to translate into a lower level of anxiety and results in the need for less communication between themselves and their medical providers. The majority of parents of teenagers with congenital cardiac malformations preferred using their provider of primary care rather than their pediatric cardiologist as a point of first contact for all concerns relating to general health, as well as for many potential concerns relating to the heart.
Two-year-old child with known chronic lung disease and stridor is referred for exclusion of cardiac disease by the pulmonologist
Parents tell you that the pediatric pulmonologist is concerned about the possibility of a vascular ring
The PCP has not sent in the referral because he or she has no written correspondence from the pulmonologist and did not understand the need for the referral
Modes of Communication
The case 2 vignette illustrates the frustration that can occur when correspondence is delayed, which may result in delay of care. Many studies have documented inadequate feedback from the consulting physicians in rural settings and also in university medical centers.
A comprehensive detailed prompt communication, clearly delineating the plans for treatment, the natural course of disease, and issues related to management, is associated with a greater level of satisfaction for the primary team. Prompt communications, preferably within 2 weeks from the time of the visit, can take the form of short, succinct written letters or electronic communications. Prompt communication is also frequently helpful to the provider and family in the event that cardiac disease is excluded and the patient needs referrals to additional specialists or requires completion of forms allowing participation in competitive sports.
One way to expedite communications is to send a preliminary short communication, delineating the diagnostic impression and suggested therapeutic plan. A study of the communication between oncologists and general practitioners found problems with the timeliness of communication and suggested interventions included greater use of telephone or fax, improved secretarial support, the use of email, nurse-led communications, universal patient records, and revisiting the option of patient-held medical records. Another option is via the electronic medical record. In one study, referring physicians who enclosed an addressed envelope with the request for consultation increased the percentage of consultant feedback from two-fifths to three-fifths. In the past, electronic mail has not been widely accepted by specialists or generalists as a preferred method of communication, albeit that this pattern may change in the future. Even with the use of electronic correspondence, one study cited the lack of timely information as a major reason for dissatisfaction among providers of primary care. Yet if promptly performed soon after the visit, electronic transfer of information has the potential to induce major cultural changes in the delivery of health care. Although quite difficult to perform for most busy specialists, most referring physicians prefer direct verbal communication, a type of communication for which there is likely no substitute, especially if the consultant thinks that the recommendations are crucial or controversial. Goldman and colleagues, in their landmark article, stated succinctly “talk is cheap, and effective.” Despite the previously well-documented observation that direct communication by phone is a highly valued activity by generalists, the minority of specialists shared this opinion. In one study, the satisfaction ratings for the referring physicians was found to be highest for referrals involving specialist feedback by both telephone and letter. Despite widespread availability of the electronic medical record, incompatibility of electronic medical record systems remains a challenge in many regions. Consulting physicians are more likely to respond to the referring physician by phone or in person, if they were directly contacted by the referring physician. Studies have also shown that attention to these factors and to the quality of the specialist communication influences the choice made by the primary team concerning specialist referral.
The cardiac consultant must also develop a style of communication that suits himself or herself and that is appropriate for the recipient. A brief informal survey of a clinical practice at the Children’s Hospital of Philadelphia revealed that most clinicians prefer communications that are both informative of the particulars of their patient, and also instructional in a general sense. In this survey, the majority of the respondents of this hospital-based center for primary care reported reading the letter from the consultant in its entirety, both for information about the patient and for didactic purposes. The latter point may come as a surprise to many cardiac specialists, who have been under the impression that only the initial impression and the component relating to therapeutic plans at the conclusion of the letter are read by the primary team. Although the didactic, instructional letter requires more time from the cardiac specialist, at least one such letter, among the many that will accrue for a patient with complex cardiac disease, will likely aid and equip the referring provider, which may lead to more confidence in the care of these patients. This concept of teaching with tact, an instructional letter that is not overly simplistic, was one of the original 10 commandments for effective consultation. Furthermore, referring letters that have elements of anticipatory guidance (e.g., listing of the typical symptoms to be expected for pulmonary overcirculation in patients with an unrestrictive ventricular septal defect) may help the primary provider to be on guard for these symptoms and help to guarantee that certain patients are not lost to follow-up. Generalists and specialists agree that consultation letters should include information about how to manage acute problems in patients with chronic disease. Citations of literature in the communication in the past were generally felt not to be helpful.
Additional correspondence detailing results of tests not immediately available on the initial day of consultation, such as the outcome of 24-hour ambulatory electrocardiographic monitoring, has also been a challenge for the busy cardiac specialist. Every effort should be made, nonetheless, to ensure the written completion of the medical record. Well-formulated diagnostic summaries and plans for treatment in the medical record also help to eliminate potentially extra work in the form of telephone calls and repeated referrals. There is also less anxiety on the part of both the referring provider and the parents if sufficient information from the consultant is provided in a timely fashion.
As previously mentioned, long lists of problems, particularly complex medical problems involving multiple subspecialties, as well as fear of making major, and even minor, errors, may elicit anxiety on the part of providers of primary care. Good communication can minimize this anxiety. The cardiac specialist can play a major role in alleviating the stress associated with managing patients with complex medical problems by frequently updating the primary team during prolonged hospitalizations and also by prompt communication of the results of outpatient visits. Likewise, the cardiac specialist may feel intimidated when patients are noted to have noncardiac illnesses that can cause significant morbidity and/or mortality. Asthma, influenza, developmental delay, genetic disorders, and complications from neoplastic disorders are not uncommon medical problems that are encountered in patients with cardiac disease. Although once skilled in the care of these problems, most cardiologists, particularly ones furthest away from medical training, may not possess the appropriate skills to manage such medical problems and may inadvertently place the patient at risk. The endorsement of a team of teams approach to caring for complex patients ( Fig. 85.5 ) reduces chances for mismanagement of cardiac and noncardiac maladies.