Whose Patient Is This?

The overall health of the child is, first and foremost, the responsibility of the team providing primary healthcare, and consultants must recognise their subsidiary role. ² This is always the case, irrespective of whether the cardiac disease is trivial or complex. Prolonged stays in hospital, particularly soon after birth in the neonatal intensive care and step-down units, often result in the accumulations of multiple problems. The complexity of those problems facing the parents makes the assimilation of medical information a difficult task for hospital-based specialists, let alone the provider of primary care, who must eventually assume this responsibility after the patient is discharged from the hospital. In the present era of improved surgical outcomes, and higher rates of survival, a common scene experienced by the generalist is the follow-up visit subsequent to the hospitalisation of the infant with complex congenital cardiac disease. After appropriate visits with the supervising cardiologist, these infants require visits with their providers of primary care for mandatory immunisations, anticipatory guidance for young and new parents, as well as surveillance of other organ systems that are critical for normal growth and development. Complex medical problems can be intimidating for any caregiver, but the team providing primary healthcare typically possesses a very balanced fund of medical knowledge and expertise in a number of areas, enabling those persons to be the most qualified medically to supervise the child subsequent to discharge. The potential disconnection between those providing primary care and the patient subsequent to prolonged hospitalisations, nonetheless, may lead to a lack of confidence on the part of the primary caregiver. In consequence of this disconnection, the needs of the patient, with the exception of immunisations, may be left in part to the specialist, who cares for the most complex, or most potentially life-threatening, of the medical problems. This relinquishment of the overall care of the patient to the specialist should be avoided. The specialist team can play a major role in ensuring that the generalist remains the confident primary provider of healthcare. Timely, and collegial, communications from the specialist in paediatric cardiology, including details of the precise diagnosis and plans for treatment, may help the team providing primary healthcare to feel empowered to provide ongoing care for the patient. ³

In the hypothetical situation outlined above, the provider of primary care, with guidance from the paediatric cardiologist, should make the decision regarding participation in sports. The cardiologist, for example, may not be aware of other conditions, such as absence of, or damage to, one of paired organs that may preclude participation in certain competitive sports. Because of this, the specialist may give inappropriate approval for the patient to participate in activities that could be detrimental to health in the event of injury. The team providing primary services is most important in this framework of a tiered approach to comprehensive provision of health care. Dysfunction may ensue if roles and responsibilities are not appropriately assumed.

Parental Concerns: Who Should I Call to Discuss a Medical Problem?

Although the paediatric cardiac specialist knows that the overall surveillance of the health of the child is primarily the responsibility of the team providing primary care, ⁴ parental confusion, and at times unrealistic expectations, are occasionally encountered by the cardiac specialist. The dilemma of which specialist to call for symptoms and signs of illness may be a problem even for physicians. Parents, who for the most part have no formal medical training, also share in this dilemma. Telephone calls, and increasingly, email correspondence to cardiac specialists that should be directed toward the primary team, and communications in the opposite direction, are not uncommon events, particularly when made by parents who have children with newly diagnosed cardiac disease. 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. ⁵ It is important for the cardiac specialist to have patience with the parents, grandparents, and guardians of children with cardiac disease when family concerns result in what can seem to be endless or inappropriate telephone calls, and frequent visits.

Many times, it is the level of parental anxiety, rather than the complexity of the cardiac disease, which is the determining factor for frequent contact with the specialist. The number of telephone calls and visits expressing anxiety correlate inversely with the length of experience that the parents have in managing their child with cardiac disease. The number of telephone calls, however, does not appear to vary directly with the complexity of the cardiac conditions. 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 fewer telephone calls to the cardiac specialist. The majority of parents of teenagers with congenital cardiac malformations preferred using their provider of primary care rather than their paediatric 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. ⁶

Parental anxieties seem to escalate whenever a sudden unexpected, or unsolved, death occurs in the community or nationally, and gains significant attention in the media. The cardiac specialist should not be surprised when urgent referrals are needed to rule out cardiac disease, particularly after the unexpected death of a local or well-known athlete prior to the start of the school season when pre-participatory evaluations for sport are in full swing in the offices of providers of primary care. A plethora of referrals to the cardiac specialist typically follows for a short period of time whenever such an event occurs. The ebb and flow of such referrals are, and will likely always be, a part of the practice of the primary team, as well as the cardiac specialist. These physicians can take advantage of available ancillary tests in the face of such an epidemic of the need for cardiac consultation. Many families are very uncomfortable waiting for the elective appointment to rule out cardiac disease, and can be reassured if preliminary tests are normal. The cardiac specialist can advise the primary team so as to alleviate some of these concerns by taking advantage, in this particular situation, of the availability of an electrocardiogram. A normal electrocardiogram makes unlikely the diagnoses of hypertrophic cardiomyopathy, this being the leading cause of sudden death in competitive athletes in the United States of America. Electrocardiographic testing can be used in many cases transiently to alleviate some parental concerns until the time that the child can be seen by the cardiologist.

Modes of Communication

The nature of the correspondence from the cardiologist should reflect the tiered system of provision of care. Irrespective of who has referred the patient to the cardiac specialist, the primary team should be the primary addressee for all correspondence. The type of correspondence can be variable. Some consultants choose to send a preliminary short communication, delineating the diagnostic impression and suggested therapeutic plan, while others choose to communicate to the referring physician via an electronic medical record. Irrespective of the mode of communication, the paediatric cardiologist is encouraged to have the communication transcribed as soon as possible after the encounter with the patient. Although the busy cardiologist may find time short, and possibly delay the communication to a more convenient time, such an approach results in more time being spent in trying to recall the details of the encounter. 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. Many studies have documented inadequate feedback from the consulting physicians in rural settings, and also in university medical centres. ^7–9 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. ¹⁰ 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. ⁹ In the past, electronic mail had not been widely accepted by specialists or generalists as a preferred method of communication, ¹¹ 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. ¹² If promptly performed soon after the visit, electronic transfer of information has the potential to induce major cultural changes in the delivery of healthcare. ¹³ 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. ^2,14 Goldman and colleagues, ² 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. ¹¹ 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. ¹⁵ 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. ⁷ Studies have also shown that attention to these factors influences the choice made by the primary team concerning specialist referral. 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. ¹⁶

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 centre for primary care reported reading the letter from the consultant in its entirety, both for information about the patient as well as 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 which 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 ten commandments for effective consultation. ^2,14 Furthermore, referring letters which have elements of anticipatory guidance, for example listing of the typical symptoms to be expected for pulmonary over-circulation in patients with an unrestrictive ventricular septal defect, may help the primary provider 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. ¹¹ Citations of literature in the communication have not generally been felt to be helpful. ¹⁴

Additional correspondence detailing results of tests not immediately available on the initial day of consultation day, such as the outcome of 24-hour ambulatory electrocardiographic monitoring, have also been a challenge for the busy cardiac specialist. Every effort should be made, nonetheless, to assure 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.

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 minimise 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 hospitalisations, and also by prompt communication of the results of outpatient visits. Likewise, the cardiac specialist may feel intimidated when patients are noted to have non-cardiac illnesses that can cause significant morbidity, and or mortality. Asthma, influenza, developmental delay, and complications from neoplastic disorders, are not uncommon medical problems which are encountered in patients with cardiac disease. Although once skilled in the care of these problems, most cardiologists, particular 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. Parents frequently feel that the cardiologist, particularly those providers who have cared for their child since the diagnosis of the illness, appear to have medical knowledge that extends beyond the discipline of cardiology. The reasons for this sentiment are not entirely understood, but perhaps relate to the recognition by the parents that their cardiac consultant knows their child exquisitely well, which is quite true. This knowledge of the medical history of the child, however, does not always translate into proficiency in managing non-cardiac medical conditions. The cardiac specialist, therefore, should not feel incompetent or inferior when faced with a non-cardiac condition that is perplexing, or even simple, but nonetheless beyond his or her expertise. The specialist should always suggest to the parents to seek the advice of their primary team, rather than potentially to mismanage non-cardiac maladies.

Involvement of the primary team in the entire process of managing complex patients not only should be exercised when non-cardiac problems surface, but should also be a process that occurs early in the care of the patient. A discussion to involve the primary team at an early stage in the process of care is not the usual mode of operation in large tertiary centres. Furthermore, there can even be arrogance on the part of the subspecialist. Such arrogance may manifest as disparaging remarks made behind doors, or lack of appropriate and timely communications. This type of behavior is probably not rare among today’s medical professionals, and runs counter to the first code of ethics of the American Medical Association, which stated in 1847:

A physician who is called upon to consult, should observe the most honorable and scrupulous regard for the character and standing of the practitioner in attendance: the practice of the latter, if necessary, should be justified as far as it can be, consistently with a conscientious regard for truth, and no hint or insinuation should be thrown out, which could impair the confidence reposed in him, or affect his reputation.

Unless there is incompetence that can affect the health of the patient, consulting physicians should avoid denigrating colleagues. ⁴

As already discussed, the tension that can occur when providers of primary care are invited into the planning of care at a relatively late stage may result in such a degree of discomfort and difficulty that a critical error can occur in management. Late involvement of the primary team may lead to more work for the cardiologist, and at times less expertise in the care of the patient, thus placing the patient at risk for missed diagnoses or inappropriate treatment. The cardiac specialist should recognise this bias and, although more time costly in the short term, interact with the primary team on a professional level at all times. Ultimately, time, and respect, will be gained with such an approach.

Similar lessons are important for the team providing primary care. Some high-volume general practices may refer patients to the specialist, rather than discuss the case personally, via either phone calls or emails, so as to assess if the referral is necessary. Such an approach may lead to a pattern of over-referral, frequently of relatively non-complex medical problems. Potentially long waiting times for the appointment with the specialist may increase the anxiety of both physician and parents, which may have been minimised with a personal communication with, and reassurance from, the cardiac specialist. The cardiac specialist should encourage an open communication with those providing primary care, either by telephone or email, which may potentially reduce unnecessary referrals. A plan for open communication may also facilitate the delivery of results in a timely fashion for patients who require only an electrocardiogram, and who do not require a formal complete cardiac assessment, such as children who are medicated with drugs having cardiac side-effects requiring serial electrocardiographic monitoring. Some patients enter the office of the cardiac specialist with a collection of reports from recent tests aimed at diagnosing the problem at hand. The cardiac specialist is occasionally faced with weeding through the results of tests that may have not been necessary. Rather than perseverating over the necessity of the tests, and even perhaps the referral itself, an available cardiac specialist can play a role earlier in the process of referral.

Increasingly, written correspondence from the specialist to those providing primary care is also sent to the families of the patient. Possession of the relevant letters by the parents, or even the patient him or herself, may improve the overall care, and involve the patient and their families in their own healthcare. Written correspondence serves to reinforce what was discussed in the office visit, and may not have been remembered or was misinterpreted. ¹⁷ In a recent study, patients appreciated receiving a copy of the letter sent to the team providing primary care. ¹⁸ Although patients do not always understand fully the content of the letter, ^19,20 a certain level of understanding is nevertheless achieved, and comprehension is improved when a second, less complex, letter is sent directly to the patient from the specialist. This letter also opens up dialogue between the parent and physician by triggering questions about things that might not have been understood. Many times, it is hard for parents to comprehend all of the information and instructions that are given to them at the first visit with the specialist. By receiving a copy of the letter, they are able to review the diagnosis and instructions, as well as ask questions for clarification. This interpretation is confirmed by studies concluding that most parents of children were satisfied when they received a copy of the letter that was sent to their general practitioner, ²¹ although it did not necessarily improve compliance with future visits. ²² Fewer errors in information have occurred when the letter was dictated in the presence of the patient. ¹⁹ The letter allows families to carry a copy of the cardiac details when travelling, so that all of the details of complex disease do not need to be remembered. Despite evidence that satisfaction amongst patients is improved when they receive a copy of the correspondence from the specialist to the generalist, physicians remain largely resistant to performing it.